FEMARA
I STARTED TAKING FEMARA ABOUT 2 WKS AGO. WHEN DOES THE SIDE EFFECTS START TO KICK IN
Edited by Mods to add content from the main Breastcancer.org site on Femara: Benefits, Side Effects and More
Comments
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Ok... finished rads July 8. Was supposed to start Femara immediately. Then, I told myself I would start that following Monday. Now, I've told myself that today is the day. BLAH!
What is the consensus of what time of the day I should take Femara?
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Apple, no, my insurance won't do mail order. I'm still waiting to hear back from my onc's office - the nausea came back and was with me all day today, despite taking compazine. Am also starting to get some real strong pain not only in the hips, but shoulder and wrists, and am feeling really crappy. It sure is kicking my butt. I'm thinking after only 2 weeks, this is going to be like chemo and yet another drug I can't take. I am also working full time, and it's been hell trying to get things done with the avalanche of se's kicking in.
Mom-of-boys - I have been taking mine in the morning.
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First time posting here but am grateful for all your info! I've been on Femara two months, taking it at bedtime, but I wake up after about 2-3 hours with pretty bad neck and other joint pain -- all areas that have had prior injuries years ago. I'm just beginning to figure out that Femara "attacks" or "settles" in joints that have had trama in the past. I'm switching to mornings, so hope pain will lessen with activity and I'll sleep better too. Good night to all!
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I did not take my Femara pill this morning and surprise, I'm not nauseaous!
I had a bad night last night - DottieW, it was just as you were saying - I was in such horrible pain, it was attacking random joints - back, hips, neck, elbow, knee, foot, and when I tried to get up and walk, I was hobbling. We took a very gentle bike ride around after dinner to try to loosen up my hips and I could hardly pedal, and when I finally was able to loosen up and ride, getting off the bike took me forever. I don't think I am going to do this anymore - after two weeks my QOL is horrible, and I ache so bad I can't do my job well.
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it's pretty overwhelming isn't .. getting up and sitting, trying to stretch, attempting to walk, expecting to be normal.
yet, i find that the pain responds pretty well to my hydrocodone pills, i can move normally after testing my range of motion for every limb in every direction... i sure could take a lot more of them but won't for now.
I read an excellent post from a woman on this forum suggesting keeping well hydrated, avoiding caffeine and alchohol, stretching, taking it easy, lots of fruit and vegetables, taking it easy on yourself while taking Femara. I wish I could find it. it was so calm and encouraging,.
if only my hair could grow long enough for a hairdo, i'd be happy. the thought of raising my children i find appealing. i'm so happy not to be on chemo and to not be saddled with the incessant worry of mortality at least for now.
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Just heard from my doctor and he told me to stop taking Femara if I'm getting these kind of reactions, and to let him know how I'm feeling and that there are other options out there we can look at and I'm also looking at natural alternatives.
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I have been on Femara for the past 2 1/2 years...I know that Femara (and AIs) can really be difficult but hang in there - it really works. Trick is to try alternative and complementary things to help with SEs, also look at them as low/no estrogen problems and what would help get thru that (other than hormone replacement)
Exercise, yoga, stretching, mediation, music, hot/warm tubs or baths, keeping joints warm (try layers, silk long johns, cuddleduds etc) diet (have lots of ideas if anyone is interested let me know), juicing and/or blending.
Nothing will be perfect but you can feel better. Its important to put yourself first on the list (I wasn't even ON the list when I started), make these complimentary things as important as your formal treatment. Hang in ladies--one step at a time, one day at a time.
Elaine
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Chelev,
I'm on Femera also and the first day or so i was nauseaus as well,but it only lasted a couple days.
I was on aromasin before the femera and i couldn't tolerate it at all.Not only was i nauseaus,i was weak,every bone joint,and muscle in my body was hurting,i couldn't do anything. My feet felt like they had been burned and then i walked thru glass shards,they still feel that way even on femera.I almost fell a couple of times,once in the shower,and i was constantly walking into walls.I called my onc.and told him i couldn't live like this,as it wasn't living!! He told me to go off it til i saw him in 3 weeks,and i did.When i saw him ,he said most women tolerate aromasin better than the other meds,but i must be the exception to that rule.He put me on Femera that day,so i've been on it since june 3rd this year.
Most all the other symptoms passed but not the feet or the hot flashes,but i've been dealing ok with those.Funny(not) but when i'm standing/walking my feet feel ok,when i sit or lay down is when they give me problems.Also they are always freezing,while the rest of me is saturated with sweat---------------go figure!! They were always freezing even before the BC,and the dr's havn't been able to figure it out.Always something!!!
Kathi
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Elaine: Thanks for the suggestions. I will sure try them. After being on Femara & Actonel going on three months I am beginning to get the sore muscles and achy joints. That is one of Actonel's SE's also. I have been doing some exercising to so not for sure which is causing it. Don't think it's the exercising. Would love to hear your ideas on diet juicing/blending.
Chelev: Sorry the Femara SE's were so bad. Let us know what alternative you went to.
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Hi Ladies,
Haven't posted in a little while, looks like lots of new names have joined. I was doing really well and then some major stressful life trauma hit and BANG back came the aches, pains etc. with avengance. I think the SEs with Femara feed from any anxiety we feel. Also, I found that a the most stressful point I also had swelling of legs, arms etc - my onc said again this is a side effect of Femara and is brought on by stress. If only we could all lead stress free lives may be that would be our answer.
For you newbies (I've been taking it since February) I found the first month or so the worst then it settled down, or maybe it's just that we get accustomed to having the side efffects to the point where we forget about them. I have had continued problems with finger and hand joint pain particularly but right now it's my knees that hurt the most. Maybe once I resolved the stress in my life right now I'll get back on an even keel.
Gaynor
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i sure wish some of you Femara girls would tell me you do have hair. I had a little bit.. a nice bit of super thin hair that is now falling out from the femara i've been taking since July 9th... (big bummer). I quit the taxol chemo July 5th... i sure hope some comes back in. I'm thinking it will, but who knows.
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Femara girls with bone, joint and muscle SE's: I have been on Fermara going on three months. I was not having any SE's until this last weekend. Felt like I had been hit by a truck. After reading several comments on other forums about using Glucosamine with Chondroitin and MSM for bone, joint & muscle SE's I decided to try it. You can get it in pill or liquid form. The liquid form gets into your system faster. I found it at Walgreens and is made by Wellesse. I started taking the pill form Monday night. Got a good nights rest and no pain the next day until in the evening. I have got it down to taking it every 12 hours and have no more pain. I just found the liquid for today so will try it this weekend.
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I've been on femara since April 09. I agree, first few months were hard. Good news is it has not affected my hair coming back at all--I actually had to go get it trimmed yesterday. It came back thin where it was thin before, but very thick and curly in the other places. I have the arthralgia almost everywhere. I decided that the medication was just too good for me to not take it as I am Brac 2 positive. I will do whatever I have to to not get this again. I swim every day in a heated pool. I swim very slowly, but stretch well. If I sit too long, it hurts when I get up. I take ibuprophen for it and it does help. I thought about if I were dx with arthritis today, what would I do to manage the pain? That's when I decided to do more exercise and take much better care of myself that I can. Blessings ladies. I hope it gets better for you.
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Just wanted to tell you that if glucosamine & chondroitin doesn't work for you (it didn't work for me), try Omega 3 fish oil capsules. This has really taken away my hand and wrist aches. I'm still stiff in the morning but I do regular exercise so the rest of my body is okay too!
The omega 3 I use is by Health Balance, EPA400 and DHA200, and they are enteric-coated. I take 3 a day.
Linda
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Apple,
I'm very happy to tell you i have hair now,about as long as Jamie Lee Curtis's.I'm 24 weeks out from chemo.My top hair doesn't come down as far as hers over my forehead,but it's on it's way and that's a good thing!! So hang in there,it will come.
Kathi
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Hello all - just to say that taking Femara in the evening works ok for me. I have only been taking it for a couple of weeks but overall, not too bad. I am so willing to give this a really good go because the research I have done provides impressive reasons as to why (if at all poss) I would stick with this drug. It is true, as you have mentioned above, that it does seem to settle with any current problems you may have (I have carpal; tunnel left hand, and a bit of plantar fascitis in my feet).
I see my Onc this Friday and will ask the following : is this muscular or skeletal or both? I happen to have a Powerplate machine which is very good just for massage, so I want to ask what he thinks about that as a palliative. Horses get treated with ultrasound machines for back injuries - I never hear about simnilar tratment for humans but wonder if that would be good.
cider apple vinegar with honey : (Honeygar as it is called here - my granny swore by this for aches and pains.
Could anyone post a list of useful things to do?
I'll post anything useful from my Onc.
Good luck all -
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I have been on femara for 2 1/2 yrs and while it has affected many parts of my body, hair is not one of them. Full head of naturally curly hair. Best wishes to all
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Hello everyone.....It's been a long time since i've checked in here. Been trying to get over a bout of "acid reflux" which I'm sure came from all the stress related to BC. Never had a problem before. In no time it hit my throat and had been irritated ever since. Nexium has helped but it is totally not gone. Anyone else have this problem?? Anyway i started Femara Nov 1st and have no problems with it. I have no hair loss for those of you interested. Aromasin was started one year ago and it was awful, that is why i was switched to Femara. Can't complain and hope it stays that way. Good luck all.....
Artsee
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Ive been on Femara for about 3-4 months. I've been having a problem under my mast side. Kind of a full/heavy feeling in the axillary region combined with pain going the side. Its been getting progressively worse. No discernable swelling. I, too, have the foot pain (feels like they are covered with fire ants), joint pain, stiffness, slow hair growth, etc. But this other pain is new and I'm not sure if I should just chalk it up to the Femara or not
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Hi Jan,
I think the heaviness you are feeling and pain may be the start of lymphedema, is there any swelling? I am waiting to see a lymphedema physio in a couple of weeks as I had been experiencing something similar to you following a recent vacation. You should contact your onc. Femara is known to cause swelling. The onc told me to go for the appointment still even though my episode went away itself, she said it can happen at any time and can be brought on by many things, for me they think it was the flight to Cuba and the hot weather.
Artsee, it's good to see your name again and know you are doing well!
Gaynor
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I have not stopped taking it yet, but I try to take it every 2 days and will wait until I meet w/ alternative doc. I have met several survivors recently who choose to take nothing based on various reasons from $$$$ to s e's
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After reading many of your posts, I see that most of you had either chemo or radiation prior to starting Femara. Is there anyone who has not had chemo or radiation and is just taking Femara? I had a bilateral with immediate DIEP reconstruction a little over 2 weeks ago and will be starting Femara the beginning of September. No chemo or radiation was indicated in my case. I already have osteopenia for which I take weekly meds so I'm really worried about the side effects of bone loss. Please help.
Thanks,
Cathy
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One of Femara's SE's is osteoporosis so you want to make sure you take at least 1200mg of Calcium a day along with Vitamin D3 which helps your body absorb the calcium. I am also on Actonel due to already having osteopenia.
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Well I have been taking femara 6months.Only S.E. so far is the joint pain. I take the calcium and vitamin D3. The only thing that help with the joint pain is taking pain med. I just take one pill a day dont want to get hooked on it. Is there anything you can take that is not habit forming or has bad side effects.Does medication for depression help this pain?
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nann I have also been on Femara for 6 mo.I take osteo biflex and fish oil, se's arent to bad ,nothing an aleve wont handle.I also take Effexor 37.5 mg for the hot flashes. Kathy
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Nanna, I also would suggest trying Omega 3 Fish oil capsules (1,200 mgs/day). It seems to work for me. My pain and aches were concentrated in my hands and wrists. I had tried glucosamine chondroitin, which didn't help at all, and also gave me indigestion! Trying one thing at a time and giving it at least 2 weeks to see if it works seems to me the best path to take. Good luck!
Linda
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Does anyone take lyrica and femara . I have fibromyalgia and it suppose to be good for this.
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nana,
I don't know about Lycra but when I was on Remeron and another antidepressant Elavil they helped with some of the pain. Unfortunatly I cannot take any form of antidepressant side effects are too strong,specially dry mouth, almost made me loose my teeths, tried them all, you could give it a try.
Welga
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Does anyone have numbness/tingling in arms and back too? I have the 100 year old feet (I have increased the glucosamine to 1500 mg and that REALLY has helped) but now am waking with this numbness - feeling week in my right arm (not my bc side) - is this normal or do I contact my onc???
Thanks!
Lisa
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How long can you take a break from femara? I am thinking of taking a break from it but, dont want to stay off too long. Should i ask my onc first?
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Hi Nanna...my onc told me I could take a 30 day break if I wanted to here and there but to go back on these darn pills after. He said he has had women who take a couple months off because of the pain and have no problems. He also told me if you take 30 days off and the cancer returns in that short of time it was probably going to anyway. I have all kinds of problems with weight gain and my joints are about shot I think. I cannot walk far at all and having trouble finding shoes I can wear that do not kill me.....Good luck God Bless...jude14
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Okay... only been on Femara for a little over two weeks and the joint pains are horrendous. How long before they get somewhat better? I'm taking glucosamine/fish oil/ and now celebrex.
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it's been a month for me now.. a month and 6 days. the first week was definitely the hardest. I think i started it too soon after my last chemo (2 days later). i guess i can handle it ok. my lower back hurts.. shoot everything hurts, but i'm used to it. I've had arthritis for years anyway.
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I am taking glucosamine and fish oil daily and celebrex every other day and a pain pill the alternate day and still cannot walk with the joint pain from femara. Going to be on these things 2 years in Dec. and when that gets here I intend to take a month break off of them....I tell myself everyday one more day and that is how I am getitng thru them....I feel 90 years old and walk like I am 100...lol What a wonderful day though I am alive!!!!!!!!!!!!!!!! jude14
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I've been on it for 4 months and my feet and legs still kill me. I saw onc last week and he seemed perplexed that I described my feet as feeling like they are covered with fire ants. He said he found that unusual. It sounds pretty usual from what I've read here. I thankful, though, that it's only my legs and feet. I guess it could be worse.
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Cathy -(Aug. 2nd post) I have commenced Femara immediately after the op and haven't yet started chemo.
I have got a bit of feet trouble, but try switching around the time you take the tablets to see what works best for you. I am into my 3rd week, and the problems have eased up.
EVERYONE have you tried cold pads on your feet at all, preferably with feet slightly raised. Bags of frozen peas will do. This may help with tingling etc. Presumably the pains are chiefly inflammation? I've used this succesfully for a foot problem called plantar fascitis, and am monitoring things a lot due to previous pain with the Plantar f. thing.
I am also taking all the supplements. At the mo I am not too bad overall.
Fire ants - worth trying the cooling effects of aloe vera maybe?
best wishes to all -
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HI All
This is my first post. Been on Femara for slightly over a year. I think I am lucky my pains are on and off. joint stiffness in the morning or after a long drive. My problem is that I now have osteoporosis, Onc wants to put me on Zometa, i am stage IIb (Jan 06) any one taken Zometa for osteoporsis? at what dose?
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Hi Everyone, haven't been here for a little while, was in the "waiting room" instead. Had my 3 monthly onc visit yetserday and on discussion of the side effects I've been experiencing recently we've decided I can take a 30 day vacation from Femara,Yeh! I have had a lot of major stress over the past couple of months and foudn that the stress seems to exagerate the side effects of Femara significantly so insteadof taking extra drugs for stress and insomnia we opted for the "vacation break" instead to see if helps. I had go to the point where I have constant pain, swelling, insomnia even with meds, exhaustion - you name it. I just hope this break works, how long before the side feects start to go off?
Well that's me caught up. Hope you all have a good weekend, summer's nearly over.
Gaynor
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I STARTED TAKING MY FEMARA 6 DAYS INSTEAD OF 7 TRYING TO BE CONSERATIVE WITH THEM SINCE I FELL THROUGH DOUGHNUT HOLE ON MY MEDICARE PART D.HOPE WILL GET SOME HELP FROM ONC MAYBE GET SOME SAMPLES. WISH THE DRUG CO WOULD LOWER THE PRICE ON THIS MEDICATION.SO PEOPLE CAN AFFORD THEM. I
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informationworm... I'm getting blood work done on Thursday in preparation for a Zometa infusion on Friday. The infusion will evidently take about 30 minutes or so. My onc ran it by my insurance company and they will pay for it.
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What is a Zometa infusion? Did I read you have only been on Famara maybe 3 weeks now? I just started it 2 weeks ago today -- so far just some night sweats and soreness when I get up in the morning. I'm holding my breath though since some have indicated their SE did not start for a month or two. I hope the SE's lessen for you -- at least in severity. It seems for some the SE from this regime can be worse than chemo (at least some reports on this site sound worse than I experienced with chemo). I guess I have been very lucky so far.
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montrial... I'll know more after Friday, BUT my onc really likes the U.S. and European studies on the effects of the Zometa infusion. It is to help bone density for someone like myself. Prior to BC, I had the bones of someone much younger due to exercise, etc. However, since my dx, I have had my ovaries/tubes removed and have started on Femara. Therefore, I am at much greater risk of developing osteoporosis than before. The Zometa infusion is given every 6 months, I believe.
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I was on Femara for 6 month with no major problems. Then my onco told me to go off just to see if it was causing my acid reflux. I went back on Femara after 4 weeks off. It's been 2 weeks that i'm back on, and this time I am having major hair loss. Has anyone experienced hair loss and how much did you loose? It's pretty freaky because it didn't do this before.
Thanks, artsee
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I haven't had hair loss, per se, a couple here and there, but what I did have growing in has come pretty much to a standstill. I am 7 months out of chemo, and still only have about 2 inches of hair.
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artsee-My hair is very fine and thin now. If I don't style it you can see my scalp. Before bc my hair was thick and wavy. After bc it came in pretty much the way it was before. Since Femara and ooph 2 1/2 years ago it has really thinned out. I also have a hypothyroid now so I am sure that is why it was so dry. Meds seem to be helping with that.
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Did all of you experiencing hair loss have chemo prior to starting Femara? I am due to start in early September, however, Femara is all I am doing...no chemo, no rads. My onc says he believes the hair loss on Femara is related to previous chemo.
Thanks,
Cathy
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Hi Cathy, I have been taking Femara for a month and haven't noticed any thinning or hair loss. Don't know if this helps at all. Best wishes to you -
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Cathy,
I started Femara on Sunday (3 days ago) having had no chemo or radiation prior. I've had a bilateral mastectomy March 20 with reconstruction. I had circulation problems in the skin and was unable to keep the implants. My chance of any recurrence of cancer is about 3 to 5% but my onc thinks that I should take it "to cover myself." I have not felt any side effects as yet and hope to avoid them altogether. My sister-in-law took Femara for 5 years with no ill effects after coming off of Tamoxifen with lots of se. If I do experience the side effects my onc also told me that he would not have a problem stopping the Femara since my % is so low.
I hope that you continue with no ill effects.
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Virginia and ewambold,
Thanks for your responses. I hope I can avoid side effects, but if need be, I will go off the Femara. My chance of recurrence is only about 3%, but my onc also thinks it is a good idea "to cover myself". My biggest concern is osteoporosis since I already take meds for it, I don't want it to get any worse.
Thanks again.
Cathy
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It has been so helpful to read your comments. I had early stage bc dx in Oct 08-- had a lumpectomy, 4 rounds of A/C and radiation. I am on Lupron and femara (I was pre-menopausal but could not take tamoxifen due to an earlier blood clot). I was in excellent health.
I have been on the femara for about a month. I got through chemo and radiation with very little difficulty, managed to work full-time all through it. I thought some of the se's I was feeling (joint stiffness) was from the lupron, but onc says it is the femara. I just today started replens and glucosomine-onc says that that is first line of defense, when I see her in Sept we can evaluate... they do sometimes a low level estrogen replacement, but I want to try to avoid it...My potential recurrence rate is low, and I want to keep it that way. I have found exercise does help---- stretching, walking, and swimming, although I do miss my running.
As for hair, didn't lose all of it in chemo, but eventually shaved it all off-- grew back in with a vengance and is short, curly and thick, so I don't know if femara has affected my hair or will in the future. Right now, the se's are ok- I can live with them, although I do look like I am about 90 years old when I get out of the car--- and I am in my 40's! At this point, I figure it is doing it's job and I feel fortunate to live in a time when they have these drugs, but the joint stiffness and the v-dryness is annoying. I have not had hot flashes so much, which is funny, because that was the thing I most dreaded.... it sounds like for some the se's decrease over time-- or maybe we just adapt. I feel it most in the am when I am getting out of bed, but as the day goes on, it subsides, but I am always aware of my joints and muscles---- in ways I never noticed them before--if you know what I mean.....
I feel like I have been through it all--- my onc calls everything after the surgery "insurance" and I know she is right--- I certainly want to do everything available-that was one reason I did the chemo even though there was some thought that I might be able to get by without it.... and I had some of these muscle aches with chemo, but they went away right afterwards.... I have very strong bones and am taking calcium and vit d as well.... so I feel like I am doing everything I am supposed to and have to just work with the challenge of these side effects--I am just hoping that they don't intensify..... but I guess I will just cross that bridge when I get to it...
hope you are all well
Carole
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Carole - maybe change the time of day or night you take the femara then you can sort of adjust ses.
For the dryness (I don't have it severely) I have just used a dab of Palmers Coacoa butter oil each morning, and it seems to work on the basis of things don't stay dry if you use a little ouikl of some description.
hope this helps and encourages!!
I gather some people find accupuncture helpful overall.
anyway, best wishes to all -
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Cathy,
I also take medication (Boniva, once a month) for Osteopenia. Hopefully the Femara won't make my condition worse either. You and I seem to have the same health issues......wonder if we are related? LOL
Hope you continue to do well.
Ellen
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I started taking Femara a couple of months ago. At first, every prior injury hurt and my fingers were killing me. But those side effects have eased up. I believe that the fish oil I'm taking really helps. I was worried about thinning hair but that hasn't happened.
I have osteopenia, and I refused any drugs for that until I saw how well I did on the Femara. I didn't want to start 2 different drugs that both caused joint aches because I wouldn't know which one was causing it!
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London-virginia-
did you use the Palmer stuff for vaginal dryness? that is what I am struggling with.... which type did you use? also, I am thinking about accupunture--- anyone have some success there????
thanks for all the info....
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My onc gave my Lyrica for some unrelated pain I've been having. It has made a lot of difference in my foot pain, too. My legs still hurt, but my feet are pretty good.
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I stopped taking Femara about 4 weeks ago. My hair has started to thicken almost immediately.
Between losing insurance and not liking the s/e's...... I decided to heck with it. I take Lugol's iodine which also negates the estrogen in the breast. I also use Reiki therapy and also essential oils which have anti tumoral effects.
I am in a local support group and am amazed at the number of women who choose not to take it for various reasons from cost - s'e's.... and many of them are several years out of tx.
One local physician, ( YES MD) who is more holistic minded told my friend that eating broccoli will do the same thing!
I encourage anyone who is uncomfortable with it to do your research and see that there are alternatives with much fewer side effects.
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post deleted
Dx 5/10/2008, IDC, 5cm, Stage IIIc, Grade 3, 4/9 nodes, ER+ -
Femara Ladies: I got blood test results back today on my Estradiol Levels. Per my med onc post menopausal woman are usually 27. Mine was 47 which means the ovary that was left when I had my hysterectomy 18 years ago is still producing estrogen. Med Onc said to quit taking the Femara immediately since I am more like pre menopausal instead of post menopausal. He suggested I talk to my gynecologist about having the ovary removed (insurance may not pay). So he is now putting me on Tamoxifen until either the ovary is removed or quits producing.
So, if you have had a hysterectomy and still have an ovary you may want to have your Estradiol level checked to see if Femara is working for your. Sure would have been nice if he would have ran this test before I started taking Femara which I have been on for about five months.
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Be careful with the hydrocodone. It is highly addictive. The longer you are on it, the more you need, then, you get the shakes when you try to get off of it!
I wish you well and certainly hope that you don't have problems with it.
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wow... excellent point Carol.. I deleted my post.. not wishing to add any burdens to any other ladies.
I discussed the use of hydrocodone as a maintenance drug with my onc. I've always been the disciplined sort.
I'll read what other ladies do for pain relief. (thank goodness for the excellent search function at this forum).
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My onc put me on Lyrica for arm pain and it has helped tremendously with my foot pain as well. My knees and hips still hurt like crap, but at least my feet don't feel like they are on fire all the time.
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WENT TO ONC TODAY EVERYTHING WAS GOOD. I GOT A FORM OFF THE FEMARA WEB SITE FOR 30 DAY SUPPLY FREE. MY ONC GAVE ME A PRESCRIPTION .
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I've thought alot about this Femara pain and how to reduce it the last several days. I can't figure out exactly how it is caused (and welcome any explanations).
I've figured out that stretching and pumping the joint (or spine bones) 5 to 10 repetitions of a movement gets that sore area nonhurting and functional. The first thing I do in the morning, before even stepping onto the floor is test all the joints that bend.. pulling my legs and feet up into a tuck several times, pointing my toes, stretching my arms up above my head, testing the torque of my spine and neck.. then i slowly stand up and start moving on my feet. I stretch my hamstrings while brushing me teeth and waiting for the kids to wake up. a couple pain pills first thing in the morning and then maybe 1 or 2 later thruout the day keep me functional and nonhurting. I'd like to reduce that to one pill a day. just one. I don't like the idea of maintenance pain meds. It has to impact one's body sooner or later.
I'm a very very active worker and pianist and really don't like the idea of my body being in pain or having restricted movement. At the piano I've particularly found that warmups and simple exercises to get the juices flowing really works. When I start, I find that my fingers feel so brittle - but they do get back to normal with beginning exercises. I've tried to apply that to all movements. The worst I think is standing up after sitting. It takes more than a few moments to overcome that stiffness - like i try not to even sit if I can avoid it. (as I type ha ha)..
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This isn't really a reply, more of a What in the world is happening to my body? I was diagnosed in Dec.'04 with breast cancer , had a lumpectomy next mon. They said it was invasive lobular , so I had a double mastectomy in June of '05. Was on Tamoxifen for a year , but little sleep & hot flashes lowered my immune functions and made me miserable. My oncologist said I could stop.Fast forward thru 4 recon. operations & they found a miniature tumor in left over tissue . Now I've been on Femara for nearly 2 years.I have severe side effects . Pain in my hips , bottom of my feet , shins, migraines , heart palpitations , only brief intervals of sleep ( maybe 2 or 3 hours a night) hot flashes, forgetfulness . My brain , once a highly trained organ , seems to be running on 2 cylinders . My body is sluggish & I'm exhausted all the time. On the rare days I get a nap I feel years younger. I take supplements, hate drugs , but can't seem to get any rest . I'm supposed to be on Femara another 3 years.At this point , I'm almost willing to go off it & risk cancer. At least I could sleep then. When my oncologist told me to take this , he only mentioned the bone loss & hot flashes. Now my heart races when I'm sitting still. Any suggestions?
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Hi ray_of_light, I am on Femara over 3 years now except some bone loss I don't have any Side effect. Do you think it might be anxiety?. I was on anti-anxiety medicine before even i was DX.
Ask your doctor it could be that all the symptoms you are experiencing it might not be related to Femara. Good Luck. Hoping you get some relief.
Sheila -
Ray of Light - would it be poss to switch to a different AI? Some people find that works.
I read a thread on here the other day with someone with a lot of your SEs. She was tested and found greatly lacking in magnesium - particularly bad for fatigue, (this was her MD, not a complementary clinic) and apparently her MD sorted her out - would it be worth loooking into this?
very best of luck -
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I am going to ask my onc about taking anti-anxiety med. I use to take it a few years back before b.c. It seemed to help me
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Ray of light --- it's good you found this site...there are lots of conversations on lots of side effects (SE's) you can find on lots of the discussions... I've been on Femara just three months following 2+ years on tamoxifen... my joints are achin' and I don't sleep much either, but it has to be a combination of lots of factors... You will learn MUCH from reading the threads on this site...it is sooooo much more than you will learn from your Onc.... hang in there and keep your chin up... we will all get through this!!!!! hugzzz, Dottie
PS: to all the others on this site --- thank you for all your wisdom and sharing! I've been reading this thread for a few months and learn lots from all of you!!! Bless you all!
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Has anyone took or taking melotonia to help sleep.Should i check with my onc before i take it.
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I take it and it helps but I didn't check with my oncologist.
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I've been on Femara now for about 2 months. When I get in the sun or in a really hot shower, it feels like ants are crawling on my arms--anybody else experienced that? So far, I've not lost any hair, but it's VERY thick and between 1-2" long (since I've been off chemo). I did notice, though, that my eyelashes are falling out again--they're about half gone. So far, knock on wood, I haven't lost any hair.
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The ants crawl on my feet, not my arms.
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Interesting....my feet are still sore and icky from the Neropathy caused by my Taxol.
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Does anyone take Zoloft > If so does it help?
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Had a Double Mastectomy/Reconstruction in Oct 09, finished Chemo in March, started Femara in August. My side effects are bone pain in the lower back, insomnia, fatigue, a little stomachache. I call it my mini-chemo pill. If I get a walk in it sometimes helps. I have been taking Ambien to help with the sleeping and still only getting 4hrs a night. Nanna- I have been on Zoloft for 7weeks. I can say it has helped me calm down and focus better. I hope this is helpful. Sending smiles to all
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Thanks Lisa-Lisa. I have heard that it will also help with the bone pain. Has it helped yours yet. just started taking mine 1 wk ago
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I'm going to give it the old college try and give it at least 3months or more to see the effects, may need to increase the dosage to see any results. Will keep in touch......I was wondering if anyone has had any follow-up with a dermatologist or phychologist, this should be a part of our journey of care but have not seen any comments on this kind of stuff???? It just seems to fit with all that we do pre, where is all the post, not that I really want more appointments but I think I need this stuff and not sure it exists. Smiles to all
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Hi ladies,
I've been on Femara since June 22nd. I take it in the morning and so far am not having any major se's. I do get minor joint pain but nothing that a Tylenol for arthritis doesn't get rid of. I have noticed this past week that the pain has been worst but I think it is because of all the rain we've had in SE PA.
I just saw my dermatologist and have an appointment with my gynocologist and my eye doctor. I am trying to get back to regular visits along with visits to my medical oncologist.
Hugs to everyone.
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Artsee, I remember you from the 2008 T&C thread, good to see you doing well. Me too!
Long time since I have checked in here, but I'm on Femara now (after 6 months on Tamoxifen and confirmation that I am indeed menopausal - damn chemo) and looking for some kinship/commiseration on the joint pain! On Arimidex initially (also caused joint issues), So my onc switched me to Femara, but it looks as though my body just doesn't like the AI's and I guess I'll live with feeling like I'm 90! I have pain mostly in my feet, knees and hips and am trying to maintain my exercise schedule, but it's tough. I think I may try glucosamine as many have suggested.
Amy
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algw
I have been on femara since July-- and I have the feet pain, along with wrist pain and some pain along my shoulders--- I find it subsides as the day goes on and exercise really helps-I swim, lift weights and walk-- really makes a difference. I also take the glucosamine--it seems to help alot as well. I am going to stay on it until dec-- onc says you need 6 months to see if the se's settle down--- then re-evaluate at the new year. I am also on lupron shots (I was pre-menopausal) so I think that contributes as well.....
In the morning, I feel like I am 90--- and I am in my 40s!
carol
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I went to my med dr i told him I could not sleep and about being depressed. He gave a prec. The name is Trazodone.I take 100 mg at nite It is for depression and help helps you sleep. I took my 1st pill last nite and did sleep well. He also said it will help with my acks and pain. Hope he is right Has anyone took the med and did it help you?
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I have been on Femara since August 2008. Second BC, first one in 1991. Had mastectomy at 40 yrs. old. 6 months chemo and years tamoxifin with NO side effects. With femara, my hand tingles continuosly and the pain in the upper part of my feet is terrible. Joined a gym two years ago ad since femara, have gained almost 30 pounds, all in the belly. Tumor markers have been normal and all scans up till last week said tumor was shrinking significantly. It is in my upper chest near lung and clavical. Scans last week showed tumor grew from 6 millimeters to 9, not much, but wondering if femara is still working. Go to dr. for more blood tests early October. Am scared to death. They said they would change meds if necessary or start chemo if all else fails. Has anyone else had the tumor enlarge while they were on femara?
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Hi Girls,
Haven't been around in a litle while but thought I'd just po pin and check out who's around.
I finished a month vacation from Femara, saw a little improvement for approx 1 week then BANG the pain came back with avengance. I was doing so good for the one week I even considered stopping taken the Femara altogether but I guess it wasn't meant to be. Since starting back on the Femara the pains are worst, all over not just the joints. It feels like growing pains, it's my bones not the muscles. It gets worse throughout the day, by night time I feel like my bones want to crumble and exercise doesn't seem to make a difference. This was why the onc took me off for a month, and the fact that stress makes the side effects worse. Teenage sons and Femara don't mix!!!!
Just waiting for a biopsy, my mammogram showed OK but the ultrasound sees a 7mm abnormality which they want to check out. The onc called me almost 2 weeks ago to tell me but I haven't received a date for the biopsy yet, guess if I don't hear today then maybe I should call and check in case they forgot. Not sure how I feel about this. They say the "thing" is an enlarged lymph node on the same side as I was treated last year - mastectomy, chemo, radiation and herceptin plus tamoxifen then femara - did anyone else have a recurrence on the same side after all that treatment?
Please let me have your thoughts.
Thanks
Gaynor
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Bumping for Pam
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I dont' know if this has been asked before, but I thought I'd try here.
I started on Femara last Thursday (the day after my first lupron shot) and have had headaches each day ever since. I hadn't realized the connection until another one popped up just now. Has anyone had these side effects? Will it go away? Help!
I was really hoping not to have se's from Femara, and honestly I find it so hard to function with a headache.
Any advice for me?
Thanks so much
Pam
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I have been on femara since the end of January and had moderate joint/bone pain. Someone had suggested Omega 3 oils and it ook me months to find one that was not dissolved in soy oil- which I avoid. I FINALLY found a source or Omega 3 capsules in lemon oil and started using them about 6 weeks ago and have felt tremendous improvement- I take 2 a day- morning and night.
I also walk/swim/water exercise about 4-5 times a week- and it is a lot easier since adding the Omega 3 to my supplements.
Might not work for everyone but has been great for me!
Kristy
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I have been on Femara since March 2006 and I was doing fine no SE.
These last 4 weeks I had pain more like a constant ache and sometimes shooting pain in my right breast when you touch the skin and the nipples it aches. My BS is on vacation until October 6.
Finally I couldn't take it anymore. I was loosing my mind. The fear took over. I took myself to ER. Blood work was fine no infection. They also did an US which it showed nothing was in my breast.
I should be happy right?. No I want someone to tell me where the achy pain is coming from.
Its 3:15 AM in NY. I goggled Femara side effects and it says Breast pain.
I really need help. Does anybody have Breast pain (it feels so sensitive) as SE or did you hear anything about it. Please help me with any info you have.
Thank you very much
Sheila -
bump
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Just wanted to know if anyone else when you go to see onc . That her assistant sees you and not your reg onc .I have only saw my onc one time in over a year .When make appt they always make it with her. Should I request to see my onc? I am still on femara still have some pain. only 4 yrs to go. Then will be femara free (I HOPE)
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Ladies,
I have been taken off of Femara (2.5 mg ) due to blood pressure problems. Knowing how expensive it is I hate to see the 60 pills go to waste when it is so expensive. Does anyone know if tthere is a charity that takes RX.
dx april 2009 lumpectomy followed by a partial mastectomy andSNB radiation and boosts
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Yes, I take Femara and I have shooting pain in the breast area. It comes and goes which is a SE listed with Femara and with Arimidex. Arimidex SE's states bone and muscle pain.
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Aug242007... Thanks for responding, its been 3 days now, achy feeling no longer there.
I even had a US it was all clear. I was very nervous because all these years I was on Femara had practically no SE, I thought My cancer was back. I really panicked. You can understand that Right?
Good luck to you
Sheila -
Has anyone had recurance of cancer while on femara. I found a large knot on the outside of my thigh. I am scared it is cancer.I just had stage 1 breast cancer 15months ago and have been on femara .I also had chemo 4 treatments. My therapist thinks it is just fatty tumor.I pray that is all it is I go see my onc Monday. just pray that it is not cancer.
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I was told the difference was that Arimidex and Femara reduces estrogen, but Aromasin makes it so your body cannot even produce any estrogen. But they all are similiar in what they do. I'm thinking of switching from Aromasin to Femara, mostly because I have constant sinus pain and infections. The sinus thing is a side effect of the Aromasin. If it weren't for that I would stay on it. What about Femara...has anyone had any sinus trouble with this med? Thanks.
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Don't know about the sinus infection with Femara...I had one before I started the Femara last week...ugh! I was told I couldn't take Arimidex because I had a partial hysterectomy...
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I am 72 years old and diagnosed with my second stage I BC. First one 2007 - ER Neg; Second one in March ER+. Tried arimidex and stopped it after 11 days. Started Femara on 9/21. Is there anyone out there in my age category? Also, I have had anxiety/depression/insonmia (in the past) and for the last few months over having to take these hormones so can't figure out what are ses. My sleep is iffy. I feel very fatigued; have some muscle pain and bone aches but those aren't too bad. Have been doing stretches and walking almost every day. I have felt not so "different" reading your comments but most of you are quite young. I only started feeling "old" when taking these meds. Any input from anyone will be helpful but especially if you are in my age category. I want to hang in there "one day at a time" with all of you.
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caroleb
Sounds like we have alot in common but I am 41. Started Femara in August, side effects include: fatigue, insomnia, deep bone pain in lower back. I suffer from anxiety too. Have been taking an all natural gaba pill, zoloft, ambien, vit b- It has helped me be calm. Will start seeing a psychologist next month. I have to get it together and am willing to explore any options for getting to a good place, it is going to be very very hard but I do not have a choice, I must do this and see where it can take me. Much healing to all, I hope this will help.......
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Lisa-Lisa
Thank you for your reply. Perhaps we are sisters under the skin (or mother/daughter). I started seeing a psychiatrist in July because I could feel myself needing additional help. I have been taking an antidepressant for a long time. He encouraged me to just take the antidepressant, gave me a mild sleeping aid (not a sleeping pill) and not to worry about the lack of sleep. A lot of nights its just 2 to 4 hours. Its important to me too to stay on the femara and not let my anxiety/depression keep me from doing the mature thing. Your response has given me an added boost today.
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caroleb..... I'm 58, and also on anti-dep & anti-anxiety medicine for almost 20 years now. I'm thinking maybe thats why didn't have SE from Femara. Recently my lumpectomy breast started to hurt after 4 weeks now I'm okay. They were telling me it was a bruise but who wants to believe it. Then I thought it was from Femara but after 3.5 years taking it?????
Drop by and post as many times you need to. We understand you.
<HUGS>
Sheila -
caroleb,
Enjoy sharing information will keep you posted on any updates! FYI- we were just out this summer visiting San Fran. We have some good friends that use to live in the city and we lived in a town called Concord (outside of Walnut Creek) 20 so minutes from San Fran (no traffic time included) HA HA HA- like that could happen..... Peaceful healing to all
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Lisa - Thanks for sharing. Actually, I live in Millbrae - adjacent to the San Francisco Airport. Was born in SF. Lots of people who lived in the city moved to Concord; Hayward etc. Traffic out here everywhere is terrible. Had a good nights sleep last night. My worse time seems to come an hour or so after I take the Femara. Hits my system hard. Am hoping this will impove soon. Day 10 today - but who's counting.
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Lisa - Thanks for sharing. Actually, I live in Millbrae - adjacent to the San Francisco Airport. Was born in SF. Lots of people have moved to Concord and other outlying areas. Traffic everywhere is terrible. Had a good night's sleep last night. My worse time seems to occur about an hour or so after taking the Femara. Am hoping this will improve soon. Day 10 today but who's counting. Yes, please let send me updates.
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caroleb
I take my "little chemo pill"- Femara after dinner and try to get to bed by 9:30 so that most of the immediate effects will just happen while in bed. Walking has helped with the bone pain.... Good Sleep- I am still waiting on that one, nice to see someone is getting some good ZZZZZZ's I am on week 8, hope my body gets use to this stuff. Sending Peace and Smiles
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Hi Ya'll.
I'm in need of venting & help. Femara SE's are driving me nuts!
I took Tamox from Feb 2005 to Oct 2007 as I was pre-menopause (age 48) when dx'd in Sept 2004. Broke my ankle in Oct 2007 & ended up with a HUGE DVT in the same leg and that's why onc took me off Tamox. Onc put me on Femara after I got out of the broken ankle/DVT hospital stay. I took it at night before bedtime. In the am, my fingers on both hands would be stiff as boards and when my feet came off the bed, they felt like I was standing on bloody stumps. Hot shower's helped me get my day started. I've tried Tylenol, plain aspirin & Advil. No help. I can take Aleve and get some relief if I double the dosage.
On a wild hair, I switched to taking "it" in the mornings. That's had little to no effect in the stiff fingers & bloody stumps for feet.
I am alergic to shellfish & cannot take glucosamin because it's made from shellfish =(
I was taking Omega 3 fish oil 2 times a day. Did that for the last year, no help.
I take calcium 2 times a day & a multi-vitamin.
God help me when I try to stand up after sitting for any lenght of time. I'm stiff all over and feet are still "bloody stumps".
Just had my annual physical. Cholesterol went through the roof!!! It's now 248. Dr put me on Mevacor (lovastatin) to bring it down. "It" has this listed as a possible side effect.
For 2 years now, I've paid $90 a month for my 30 pills under my insurance. What a rip-off by Novartis & insurance company. I should be glad that I have insurance, but it's hard to swallow the Femara when they cost so much & cause so much pain. <boo-hoo-hoo>
I am ABSOLUTELY determined to stay on Femara, but, managing the SE's are getting the best of me right now.
My chemo slammed me into menopause & the night sweats were unbearable. Onc put me on Effexor and we managed to back that down to the lowest possible dosage. Night sweats got somewhat controlled at least enough to sleep. Chemopause SE's became so minimized, I weaned myself off the Effexor a year ago.
Trust me, I'm a tough old bird. I was alergic to my chemo (1st dose cause throat to partially close) & forced my onc to give it to me anyways. I completed all four doses. He wasn't happy, but, I wasn't going to wimp out because of limited breathing due to alergice reaction!!!
I'm only 53 and I feel like I'm 90. God willing, I will get to live to that ripe old age, but I just don't want to be that old today.
I'm afraid if I say anything to my onc other than the minor complaint of stiff fingers that he'll switch me to something else. I truly believe Femara is the better drug for my hormone therapy. Onc says I need to be on it 5 years total. So I have three more to go if I can find some relief of the "bloody stumps" and and "oak trees" for fingers.
Don't laugh, but I've even tried Icy Hot & Biofreeze on feet & fingers. I've contemplated a bowl of boiling hot waterr to stick my feet & hands into.... Now if I could just figure out how to sit at work with hot water pouring over my head.
Good grief!!! There has GOT to be a way to get Femara happy with the rest of my body.
Thanks for listening.
bonny
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Bonny - if you figure out how to make your body happy with the Femara, let me know. I have the exact same SEs you mentioned, plus my hair still isn't growing and I'm experiencing terrible, uncontrollable weight gain.
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Bonny,
Have you tried magnesium Citrate, do a search on it in this site, it has helped me a lot. Still some pains but much less. Hope it helps you
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I just started my Femara 3 days ago. So far so good, but I'm sure side effects don't start for a little while. Can anyone tell me when they first experienced side effects? Thanks.
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Hi all
I have been on femara since July--- I found the joint stiffness to be a real challenge--- I changed the time I took it to lunch time, added in glucosomine 3x a day and ramped up my exercise (weight lifting, walking and swimming). while I am still stiff when I sit too long, I have to say, things have improved considerably--- so I just move around alot !!!! I also take Lupron shots each month-- so I am sure that adds to it---but the exercising(especially the swimming) has really made the difference for me..... I am always hungry-- and have gained a few pounds.... I am in a lifestyle study for early stage people, so I am hoping that will help me prevent too much weight gain----
I do think femara is a good drug and my onc is a firm believer in the hormonal therapies--- so I know this is the one for me for a while---- it is not perfect, but it is ok.
carole
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It's me again. Time to whine. Today is 14th day. The last two nights I slept pretty well. So I thought I was off to a good start this morning. Went for a walk and by the time I was on my way back had pretty bad muscle pain in my right thigh, hip, butt. We had a huge change in the weather yesterday - down to 49 degrees (it been in the 80's and 90's) with winds of up to 50 mph gusts so was a little achy when I got up. By the time I got back from walking, was hurting pretty bad. I am the 72 year old who has been blessed with hardly any joint/muscle pain. My bone density test showed osteoporosis in my right hip. But because I had trouble with Arimidex my onc put me on Femara. I notice that bisphonsphonates not allowed with Femara. I also see that some of you seem to be getting them so am curious about that. Anyway, took a shower and ate lunch and am taking it easy so pain is easing. Glad I didn't go to the 49er game today. I know a lot of my discomfort and lack of sleep is due to anxiety about taking this med. You all give me the courage to hang in there. (One day at a time). Any insights you may have for me are much appreciated.
caroleb
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Carole, you mentioned that bisphononates aren't allowed along with Femara. I'm wondering what your source is, because my onc actually recommended I start taking actonel because of slight osteopenia (as a preventive against developing osteoporosis).
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Linda - The sheet that comes with the bottle of Femara says so and also I checked the Novatis web site and they say the same thing as well as mayoclinic.com. I see my onc in November (after having my 5 month and 6 month mammogram). I plan to ask but would appreciate any info you all have about it.
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Carole...You have to excuse me with my english but what does bisphononates mean?
Like Boniva!!!!!!!! not on it yet I have a beginning of osteopenia but Dr wants to wait until next bone density test to decide. What is the reason you are not suppose to take it?
I will go on Femara site so I can understand it better.
Thanks fot the warning
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caroleb,
I'm 63, have osteoporosis and am on Femara. 3 years ago (2 years prior to cancer) I was put on FORTEO (an injectible daily med) for 24 months because my T-score was awful and Fosamax wasn't helping. That 2 years ended just about the time I was diagnosed with breast cancer, and last year my T-score was better than before I started on FORTEO. So, my onc put me on Arimidex, then we switched to Femara, but at the same time I was taking a weekly dose of Fosamax, since the AI's can cause bone density loss. This year, after one year of Femara, my T-score was worse than before the 2 years of daily injections
So - I'm scheduled to get an infusion of Reclast this coming Wednesday - my onc says it's 1,000 times stronger than Fosamax and should stop the bone loss from Femara.I had not heard that Fosamax or the other similar drugs should not be taken with Femara. I'll ask my onc Wednesday.
Please do talk about this with your oncologist - I initially wanted to totally stop taking Femara, but he convinced me that he can stop the bone loss, and that Femara is too important to not take it.
Hugs,
Karen
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Hi again Caroleb,
I think I found what you read, and I believe it's a misunderstanding:
From the Novartis prescribing info:
In the extended adjuvant setting, preliminary results (median duration of follow-up was 20 months)from the bone sub-study (Calcium 500 mg and Vitamin D 400 IU per day mandatory; bisphosphonates not allowed) demonstrated that at 2 years the mean decrease compared to baseline in hip BMD in Femara patients was 3% vs 0.4% for placebo (P=0.048). The mean decrease from baseline BMD results for the lumbar spine at 2 years was Femara 4.6% decrease and placebo 2.2% (P=0.069). Consideration should be given to monitoring BMD.
I believe this means that during the study, it was mandatory that patients take Calcium and Vitamin D, but NOT permitted for them to take a bisphosphonate during the course of the study. This makes sense, since Novartis was trying to test how much bone loss occurred while on Femara.
Hope this makes you feel better about taking Fosamax or Actonel or Boniva, etc.
Hugs,
Karen
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Karen - Thank you so much. This clears up a lot. Couldn't believe so many were taking fosamax, actonel, etc. For me I get anxiety just thinking about adding a med (especially after the second cancer diagnosis) so need to get the femara in my system before trying another med. I will talk to my onc in November. When I went to drug checker they didn't show any interaction between femara and the bisphosphonates. I do take calcium and vitamin D so if all goes well in November with my mammogram can wait a few months and start the next med.
Carole
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Thanks for the info, Karen. Yes, the study mentioned makes sense. That info was not included in my Femara insert (mine is made by Novartis Canada). I think I'll trust my onc with this one!
Linda
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Week ago friday i found a huge lump on upper thigh.Went to cancer dr she had ultrasound and xray ordered. Have not had the results yet. When she saw it she said she didnot know what it was. I have been taking femara 11months. My question can you still get another cancer while taking femara. My breast cancer was stage1 no lympnodes removed. Had mysectomy and 4 rounds chemo. I am scared it is cancer. please pray for me.
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nanna (((((((((hugs and prayers))))))))))
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You are in my prayers today Nanna.....when do you get results?
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Nana I found a couple lumps in my upper leg like that about a year after my bc and doctor told me it was fatty tumors and nothing to worry about. I took him at his word and I guess he was right that has been over a year ago now.....You are in my prayers...Jude14
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I have been on femara since the end of January 2009- about 2 months ago I started taking Omega 3 (dissolved in lemon oil and not soybean oil since I avoid that) and got some relief from the bone and joint aches. My onc tries to get our VitaminD blood level above 50 and mine was still below that even though I was taking 2000 mg a day so she added a once a week Vitamin D capsule- I have gotten HUGE relief from the achy joints and bones since adding that to my vitamins. She put me on it for 8 weeks but Im going to be talking to her about continuing since the relief is so nice!
Kristy
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Thought I would get them today. I called my onc and they said they would give her the message.but , we know how that goes. I am going there tomorrow when they open and tell them i want the results.N O W. I guess no news it good news but the waiting is getting to me.
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I'll be thinking of you.
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My onc called this morning and said the test was negative. Thanks for your prayers and most of all I thank GOD.
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Wonderful news, Nanna!!!
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AWESOME!!!!
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Great news. So happy for you.
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That's wonderful news!!
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Hi Michelle,
I am premenopausal as well (age 49). I can't take tamoxifen because of a clotting disorder, so I was put on lupron + arimidex. I have had absolutely no side effects from the meds. However, 7 months after I started I am still having periods. Given that my BC was > 95% ER+ this has me very worried. Did the lupron suppress your ovaries? What dosage were you on?
KS1
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KSI
I am on lupron-since June-- it is 7.5 dosage and I have not seen a period since I finished chemo in February---- I am on femara- with some se's-- I like that you have no se's from arimidex. I plan to stay on femara until after xmas- but if the joint pain continues after that , I may request a switch.
I would talk to your onc about the periods...
carole
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Has anyone been on femara longer than five years. Is five years the amount of time you take femara
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I just started taking Femara. I was told that you have to take it for 5 years, however, all the information I have read says they only have 2 year trials on Femara. It seems that it was the drug of choice after Tamoxafin.
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I believe that Tamoxifen is now prescribed to pre-menopausal women, and that some oncologists are following the Tamoxifen with 2 years of an AI, whether Femara or another one.
But for post-menopausal women the protocol seems to be 5 years of an AI. My oncologist said I'd be taking Femara for 5 years.
Hugs,
Karen
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Does anyone know when you will be able to get femara in generic
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No, but hopefully will be sometime in the next 5 years that I'll be taking it. I start after my last rads boost on Wed. The onc gave me a month's trial supply to see if it agrees with me so guess I'll know soon whether or not I'll have some of the nasty SE's. Sure hope I'm one of the lucky ones!
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Bonnygg,
We could be sisters! I am 54 and feel like 90!!!!!! Been on Femara since March 2009.I have a hard time getting up from a sitting position--my right knee about kills me! Never hurts any other time. I have pain in my neck on the right side as well as pain in my left arm!! I look like an elderly lady when I start to walk--all bent up and shuttlering(sp??) my feet. I noticed many of you exercise by swimming--do you think our insurance will pay for a pool for us to exercise!!!!!!!!!!!
My hair is growing but not long enough. I stopped wearing my wig, however, daughter getting married the 24th--took the wig to the place I got it to shape it up. The wig for the wedding and the reception!
Does anyone have ALFLAC? I was going to call to see if they will pay for Femara.
Go for my mammogram today and then for the results next Thursday (2 days before the wedding). I am going to tell him if he doesn't have good news to wait til Monday after the wedding!
Someone mentioned about headaches! I use to have migranes and headaches here and there; but ever since I have had chemo (no headaches then), I have not had 1 headache!
Everyone take care!
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Hi Linda,
I remember you from the Mammosite posts!! I'm sorry you're having trouble with Femara. I initially was on Arimidex and had many of the same SE's as you are experiencing with Femara, so my onc switched me to Femara and it helped. Maybe you should talk to your onc about one of the other two AI's?
Congratulations on your daughter's upcoming wedding - and you'll be in my thoughts and prayers for a good doctor's report.
Hugs,
Karen
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Hi Ladies; I have been on Femara for a few months, and had no side effects. Then wham!!!!! Headaches. I'm starving all the time. I don't want to gain any more weight, lol. I live in Canada. It costs $230. a month for femara. I hope the generic comes out soon. xoxo Angel
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Hi Nanna and Angel,
You might want to check into www.alldaychemist.com. I order most of my meds through them.
Hugs,
Karen
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LindaBusEd - I dont know details about your situation but I was having a lot of the bone and joint pain and aches until my doc put me on a weekly Vitamin supplement- its a once a week gelcap with 50,000 IU of vitamin D (D2 I believe)- and it has done wonders for the achiness!!!! Might be worth checking into it........
Kristy
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I had terrible lower back pain (when I say that I mean severe) for the first 8 months on the femara and all of a sudden they have started subsiding. I am taking vitamin D with calcium also. I think the vitamin D is really helping.
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Dear Kdeit; Thanks to you, I'll be saving almost $200. a month! The generic isn't available in Canada, yet. xoxo Angel
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Angel - I'm glad!! It's not available in the US yet, either. That's why I love ADC/
Hugs,
Karen
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Quick poll- what is the cost of femara? Right now I pay 62.50 for a 3 month supply but my insurance is changing next year to where I will pay 30% on a 3 month order through mail order- wondering how much that will be????
Kristy
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Kristy,
I believe it's variable, depending on which pharmacy you use. I just checked and the full price at Target and Walgreen is $368.37 a month. At CVS it's 378.79. You need to see what the mail order full-price is going to be. I hope you're not looking at a large co-pay. :-(
Hugs,
Karen
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Forgive me if this has been answered already in the many posts under this title. Here is my small story on Femara so far. I started on Femara at the end of July right after finishing rads. After 7 days and gaining almost a pound a day, I started to bleed as if I was on a light period. I have not had a period for over 3 years. My medical onc took me off of it and sent me for testing to see if I had any uterine problems and to check if I was truly post-menopausal. I got the all clear today from the gynecologist and said it was ok for me to take what ever my onc prescribed to me. So I am thinking that my med onc will probably put me back on the Femara. Has any one else had problems with bleeding and if you did, what was the outcome or "fix"?
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Hi all! I was hoping I could join this thread as I am a new Femara user. Here is my story about how I got to Femara at 37 years old. I was diagnosed in January, had 8 chemo treatments that ended in May, had bilateral with expanders end of June, and then about a month later got the all clear to start Tamoxifen. I had bilateral BC but because I was node neg and had the bilateral mx I got to skip radiation. I started on Tamox and about two months later I was still having no SE's. Not one hot flash and I was on Lupron during chemo to protect my ovaries and had many flashes. My husband and I have no children but had been trying for awhile and then, BAM, breast cancer. So we were told by the doctors that in a few years they would ok a pregnancy. Well I had the Tamoxifen metaboliser test done and I am a poor metaboliser. My onc said then that I needed to have my ovaries removed so I could take an AI. I chose to have it all out did a complete hyster so that I would not have any other girlie bit cancers. I figured if I was not going to be able to use them then I did not want to worry about them either. As you can imagine at the time this was devastating to my husband and me but we are comfortable now with adoption and possibly surrogates out of all of the amazing friends and family that have offered. This is how I became suddenly post menopausal and on Femara. I just started bottle number 2, which costs me $25.00 a month with my insurance by the way, but CVS told me it is close to $400 a month without insurance (OMG!). I have not had any major SE's yet but I am awaiting the day because so many people have posted about the horrible SE's. I have a good friend who stopped taking it because she said that it was worse than chemo. Do you all think that I am "out of the woods" or not even in the woods yet on SE's? When do they normally begin? Thanks for listening:)
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Except few hot flushes here and there at the beginning I have no SE. ooh and gaining wait.
I have been on it since March 2006
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Hi - been on Femara since February 2009. Have the hot flashes - aches (especially in legs) but am coping. Have NO interest at all in sex. Anyone else experience this ? Anything help?
Oh and my onc seems to indicate I might be on it longer than 5 years depending on the ongoing research...Thinking of asking him about switching to Armidex when I see him in December to see if there is any difference.Thoughts?
One more question - anyone's hair come in real curly? Any idea how long that lasts?
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nene,
sorry about the lost of your ovaries, about Femara it's hard to tell only two months in, but it varies so much form one person to the other that it is hard to say for now. Hope you will be among the ones that have no or little side effects, have a nice day
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After 17 years and 7 years of tamoxifan, my cancer came bace a year ago. It is in my upper chest area near my clavical. Oncologist said I have several small nodules. Put me on Femara last October and early Sept. my tumor markers went up and now I am on Aromasin. Onc. said that femara sometimes only works for 8 mos. to a year and I should be glad it worked for a year. Some nodles showed improvement, some grew slightly. If aromasin doesn't work, chemo will be next, then some type of hormonal therapy after. Have been Aromasin for one week, not as much joint pain in my feet as femara, so hoping I will be able to cope. I take 4 tablets of fish oil for high cholestral, which some said helps the joint pain, but did not help with femara. Worst part was I just ordered a three month supply of femara that I have to through out, since drugstore will not take back. Sucks, makes me feel good I only had to pay $55. for three month supply. Aromasin costs me the same.
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Welga,
Thanks for the info and the compassion. Since I was er/pr+ it was probably the right thing to do regardless of my Tamox metaboliser status. If things stay the way they are now on Femara I will not have a problem for the next five years. BTW my onco office is participating in a study on AI's to see if there is a benefit of staying on them past five years. Maybe when I get there I will participate but I will post if my onc tells me anything before then. I know we all hate to be medicated but it does give me a sense (even if false) of security to still be doing something to prevent reoccurrence. So mentally I give myself a pass on worry every time I take a Femara. Since I realize I probably have no control whatsoever if it comes back this is how I get my mind around it. My grandmother had BC 41 years ago and was treated with surgery only as far as I know and she is 88 now. I am BRCA neg so this is supposedly not hereditary but I do hope mine follows her path. As my onc told me every year that passes without a reoccurence is another year of research being done towards a cure. Maybe he is an optomist but I like the attitude.
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mama1050 - Sorry to hear of your recurrence. That's the worry all of us will always have, I'm sure. About your unused Femara, we have a Hunger Coalition here that will take unused meds & give to needy people in our county. It makes me feel better about being able to help someone else out. You might want to check to see if there is anything like that in your area.
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mama1050- we must have been posting at the same time the other night because I did not see your post before that. I too am sorry about your reoccurence and wish you a speedy trip back to NED as soon as the dr. finds the right combo to treat you. If the Femara is unopened, my pharmacy gives me a bottle from the manufacturer that has a seal on top like you get with OTC drugs, your oncologist's office may be able to use it for someone. I had unopened Emend during chemo and I gave it to them as I know it can be expensive for patients without medical insurance or state assistance. Best wishes to you.
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New to this discussion board on Femara. I was on Arimidex for 5 months and couldn't handle the side effects - so started Femara about 4 months ago. I have the hot flashes, headaches, joint pain/body aches, insomnia, and tiredness. My oncologist seems to just brush these concerns aside. He keeps telling me that if I don't stay on a AI - my chance of recurrence is 30% higher. Has anyone found any research to prove this? I'm tired of being 56 and feeling 76. I'm really considering chucking the pills and taking my chances. I'm in agreement - chemo was easier! At least you saw the light at the end of the tunnel. That five year tunnel is looking really dark right now. I take Prozac to help with hot flashes, but it doesn't seem to be working. Anyone switch to Effexor with any good results? Thanks in advance for any input everyone!
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Wblibrary - at least you only feel 76, I feel 106. And if something doesn't change, pretty soon I'll weigh 206. I don't want to give up, especially since I'm Stage III, but I don't know if I can do this for 5 years, either. I feel like such a wimp.
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Mary 5454
I agree with the lack of interest in sex--- the vaginal dryness has been hard-- people have recommended coconut oil--anyone every try that??? but beyone the dryness, it is like I have just shifted into neutral..... no high, no low.. it is very weird--not sure if it is the femara or the lupron I take to supress my ovaries..... I have been on it since July-- the joint stiffness seems to be subsiding,but the libido has taken a big hit....
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I know I sound a little like a borken record on this one- but Supplementing Vitamin D has changed everything for me on Femara. I take 2000 IU daily of Vitamin D3 and also a once a week 50,000 IU Vitamin D that is a prescription. My onc regularly checks our Vitamin D levels through blood work so it is closely monitored. My leg aches and joint aches are at least 90% less since they boosted my Vitamin D level and my sex drive has returned!!!!!!!!!!!!!!!!!!!!!!
My onc checks the Vit D level when she does my other bloodwork so it is not an extra stick or anything- and the change and improvement has been remarkable.
On the prescription cost- we have a 50.00 per month max (so 150.00) on a mail order prescription so it looks like that will be the new cost in 2010- stil not too high just a hit when you have to get the 3 month presciption. My on did go ahead and write the refill so I can get one more order at the 2009 price!
Kristy
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Hi Ladies....Is there any kind of vitamin or solution (beside diet pills wont take them) to curb the appetite little bit. I am talking about food not the sex drive lol. I am always hungry, losing weight and
even retain my weight is becoming very hard and stressful. I walk daily. I am 5' 5" and weigh 171lb. Heeeeeeeelp please.
BTW I am on Femara since March of 2006.
Sheila
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I, too, take mega doses of Vit D and go outside whenever I can. It hasn't helped me yet. I am getting a Reclast infusion on Wednesday (I know, not the same as Vit D), so maybe that will help.
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nene,
you have the right attitude, Femara is a very good drug and if but only if you get some side effects there are a lot of info on this board about supplements and meds that will hell you cope with them
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Kristy Ann - I take about 3000 IUs daily of Vitamin D - what is D3? and 50,000 once weekly? I will ask my onc about this next time I see him.
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mama1050 - wishing you all the best. prayer coming at you from New York!
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Thanks Welga! All of you ladies are very helpful and supportive. I am taking Calcium and D3 every day to protect the bones per onco and gyno but nothing other than that but it if I do get hit with SE's I will check out all of the supplement threads. I think someone asked about Effexor XR for hot flashes and I take a low dose every day and it has been wonderful. No real hot flashes (and I had them like crazy during chemo and a few years back when I was on a fertility drug) to speak of only a little bit of heat and then it goes away. I recommend it but I know like all drugs it is probably not for everyone. My BFF took it for a different reason and it gave her flu like symptoms if she was even an hour late taking it. I haven't experienced anything like that. It does not have a generic either and can be pricey if you don't have insurance or if they don't want to cover it. Mine tried to have my primary care recommend something else that had a generic but I appealed and won. At the time I was about to start Tamox and they were not recommending any other antidepressant with Tamox. Couldn't take Tamox but still liked Effexor enough to stay on. It has helped me get through this crazy journey. Best wishes to all.
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HI Ladies,
Sorry I haven't posted for a while but I've been so busy with medical appointments during the day and by the end of the day my hands hurt so much I don't feel like typing. I dislike Femara with a passion and I am going to talk to my onc next month and see what difference it will make to my overall outcome if I stop taking AIs. I am 45 and feel like I'm 90 by the end of the day. My hands are probably the worst although I ache every where, like real deep in the bones. I have also found that I just don't feel like myself, tired, fed up and hard to motivate - I hate feeling like this. I am/was stage IIIB, diagnosed May 2008 and had surgery etc throughout 2009. I, like many others it seems, fell chemo was so much easier. I just had my last herceptin treatment and wonder if not taking this anymore may help with the aches, maybe? I cannot remember what percentage difference my onc said the Femara would make to my recurrence rate. I know that when she recommended Femara she said it was the easier of the AIs to tolerate so I am kind of unsure about trying anything else. I had hoped that once chemo etc was over things would get easier not harder, I don't know that I want to feel like this for another 4+ years! Oh well that's my moaning done with, back to work now,
Thanks ladies for listening to me, it sometimes helps to talk to someone else who knows what its like.
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I am with you!!!! My onc said after one year I could try a month without it and then start again. He told me that this has worked for some of his patients in diminishing the se side effects. I am wondering if anyone has felt like they are truly losing thier minds? Just feeling spacy and forgetting things and feeling so unproductive? I can't use my brain sometimes and feel like something is really wrong inside! I seem to attribute everything to this little yellow pill but maybe it isn't always the AI's fault. Any thoughts?
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Eugienie & Gaynorl - I was told by my oncologist that my chances of recurrence would go up 30% if I came off the Al's. Anyway you cut it - you are depriving your body of the estrogen it is supposed to be making - side effects are going to happen. The Al's are actually more of a deterrant to recurrence than chemo is. Arimidex is harder on your bones/joints than Femara. Feeling spacey was a side effect of chemo - but I agree - it's still there even after 10 months of being off of it. I came off of Arimidex for 3/4 weeks before I went on Femara. I felt SO much better during that time. Five years is going to seem like forever. There is talk now to change that to 10 years! I'm tossing and turning with my decision to stay on Femara. Is there anyone out there that can honestly say they started to feel better the longer they took the Femara?
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Gosh Wblibrary, I hope you get a yes to your question, it would give a little hope. I'm starting to get severe headaches. Recently, the joints in my hands are stiff and achey. hugs Angel
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mary 5454,
I take 2000 IU od D3 daily- its a small tablet that the pharmacy at the cancer center keeps in stock so we buy it form them- I have also seen it at a local pharmacy. The once a week prescription is 50,000 IU of Vitamin D- that is how it is labelled and I think it is D2.
Kristy
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Thanks Kristy. I had a Vit D level taken today - should know in a week. Then plan on calling my onc re; a prescrition for the 50,000 once weekly. Thanks for the advice.
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Thanks Kristy. I had a Vit D level taken today - should know in a week. Then plan on calling my onc re; a prescrition for the 50,000 once weekly. Thanks for the advice.
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ANY ONE STAYED OFF LONGER THAN 30 DAYS? HOW OFTEN CAN THIS BE DONE MY ONC SAID NO TO A BREAK FROM THIS
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Nana, My onc. said NO as well. I am in my last year of Femara- counting down to August of 2010. Took an accidental break with changing of insurance and home delivery meds. Could tell a difference even during this short period. But I am a 3 time survivor and am sticking with Femara as long as recommended.
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Mary5454 - did you get the results of your Vitamin D check?
Kristy
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I was wondering when you ladies take your Femara pill, morning or night. I'm trying to find a way to minimize the se's.
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I decided to take mine with supper, as that seems to be the only time that I'm guaranteed to remember to take my meds. Morning & bedtime ones I sometimes forget. I've only been on it for about 2 weeks, so I can't comment on SE's yet. I've got this forum marked as a favorite, so I can keep up with everyone's suggestions.
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I take mine first thing in the morning- didnt notice any difference in side effects with changing the time and thats my best time to deal with it. I am in the neratinib trial now and I like to separate the femara from the neratinib so I stuck with early morning and the other one is mid morning with food.
Kristy
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Kristy....What is neratinib trial?
dkerler....I always take it in the morning with my coffee. The only medicine have been told to take it at bedtime is Zocor. You might never get SE from Femara. I had the minimal, some hot flashes at the beginning and very difficult to loose weight. (still)
Good Luck.
Sheila
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I take mine in the morning but I am having lots of aches and pains especially after I sit for awhile.
I started Femara June 22nd and it seems the aches are getting worse especially on rainy days.
Does anyone take supplements? I take glucosamine, omega 3 fish oil, Vit 3, magnesium citrate, B complex and of course a daily vitamin, baby aspirin and calcium.
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Just thought I would add my experience. I started femara last Christmas after being dx May 08, followed by surgery, chemo & rads. I had no side effects at all until very recently when I started with the joint pain in my hands (especially my thumbs). I am taking glucosamine daily and I'm sure this helps.
Having said that, my memory is awful and although my energy levels are a lot better I do feel soooooo tired every couple of weeks.
I can live with it as long as it keeps the beast at bay.
Keep well.
Malx
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Started my Femara on Oct. 1. Side effects minimal so far, some hot flashes and minor joint pain, especially in my shoulders and elbows. I take my pill first thing in the morning and that seems to be when my SE's are the worst. They fade during the day with movement and exercise.
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what is SE's?
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SE = Side Effect
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I take my Femara in the morning - I've tried both morning and night and it doesn't seem to matter what time of the day you take it - it's in your blood stream to stay for longer than 24 hours anyway. You will have the side effects no matter what time you take it. I still haven't received any replies to my question about the side effects lessening the longer you have been on the pill. Love to hear from people who have been on it for over a year - did your side effects lessen?
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wblibrary... I have been on it since March of 2006. Like I said in my previous post I had hot flushes at least a year then they disappeared.
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I've been on Femara since 9/05. I still have hot flashes, but no where near as bad as when I started the pill. If I watch what I eat (spicy foods and alcohol), the tropical vacations are relatively mild. I do have aches and pains in hands and legs, but keeping active helps a lot. These are worse if I sit a long while- long trips in a car are the worst. Memory is fuzzy, but is this the pill or menopause ????? And I take my pill before I go to bed. Never saw any difference one way or the other with me.
Rita
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Seyla, The neratinib trial is a trial of a new drug for us HER2+ ladies- it is an oral medication and works similar to Herceptin but it also blocks other HER receptors and not just the HER2 receptor.
dkerler, I take Vitamin D3 daily and Vitamin D2 (prescription) once a week- if you are having joint pain and bone aches, please ask your doc to chek your Vitamin D levels- mine have almost completely gone away since getting my Vitamin D at the right level
Kristy
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Seyla and Aspen - thank you for your replies. Did the tiredness get any better with time?
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I don't recall any tiredness. I was still on Herceptin when I started Femara.
I really believe some of it is emotional tiredness, after all the tests, port in, chemo, Neulasta, radiation it drains you. I don't feel tired, <meant from Femara> until I started reading the posts few months ago, didn't even realize the hot and cold flashes were related to the med.
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When I first started Femara I would poop out by Thurs or Friday of the work week. But gradually that went away and if I take my vitamins and stay active, it is really not a problem now. For me, all the SEs gradually diminished or became tolerable to the level of not really paying any attention to them anymore. Perhaps when I am able to finally stop the pill, I will then see how many SE there really were. As for now, things ain't so bad. Just keep hanging one day at a time.
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I have been taking femara for nine months now. I take it in the morning as that is the best time for me to consistently remember to take it.
dkeler: besides calcium,. I take glucosamine and chrondriton , Vit D - 3000 day, omega 3 and a multivitamin.
I think my ,muscle/bone pain is a bit better than in the beginning. I am still tired (fall asleep riding in a car); hot flashes seem a bit less than in the beginning - now about 1-2 a day.
I would like to have the pain in my legs gone - i work out 5-6 days a week- I think that helps.
Kristy- I got my Vit D levels back - 68. My internist said that's fine - I belive it is in the optimal ranger - my onc hasn't seen it (I see him early december)- I want to ask him about the weekly 50,000 IUs- but fearful he will think it will put me in the toxic range. I want to try everything to feel "normal".
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Femara Sisters - I am so glad to have found you - i was diagnosed with breast cancer April 17 and not long after started taking Femara - 61 years old and have never felt like this. muscle ache and pain - joint ache, fatigue - extreme fatigue, lack of interest in most everythng.. foggy brain, can't remember the simplest things at times - at times like that I just let it go and know I'll remeber later. I notice hair loss yesterday while coloring my hair - saw too much pink scalp and not as much thick hair as a few months ago. I am scheduled for lumpectomy Nov 3 to be followed by 6 1/2 wks of radiation. It will be good to have this behind me but 5 years on Femara - Oh My Goodness - i am definitely not looking forward to that. Taking Femara and thyroid pills on an empty stomach - discovered that means not with tea, not with juice - only with water - other fluids start the digestive process in the stomach - vitamins and supplements need to be taken with food - that's my problem - don't often remember to take the calcium, glucosamine, vit D, with meals - How did you guys get into this routine. I thought all my muscle aches, joint aches etc were just a form of feeling sorry for myself - I'm glad to have confirmed "it's not just me".
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MarineMom Hang in there I have been on femara for 11months and i had the aches also but i tried everything to help ache, pain med helped a little my m.dr told me to take 2-500mg tylenol He said i can take it 3x a day but i only take 1xday you would not believe how much better i feel have small pain but nothing like i use to have.I take my femara at breakfast but my thyroid i take 1 hr before breakfast. i think you can take femara with food
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Mary5454 - Wow your vitamin D level is great- mine have been stuck at 37- Im hoping I get up to 50 next time they test me!
Kristy
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I've been taking Femara now for the past 3 months. I take mine when I go to bed at night as I don't get up the same time every day!
In the beginning, the hot flashes were unbearable, but they have now subsided. I mostly get them now at night when I'm sleeping. I'm always HOT! I do have some achy joints, but seems to go away once I start moving around. Sex drive has totally DISAPPEARED!! If all I have to do is increase my level of Vit. D., then I'll try that. Right now I'm taking 1000 as per my onc., but after reading here, I think I should have it increased! -
I have been on Femara for a month now and the joint pain is really bad some days. I take vitamin D, Zinc and calcium. That is what the doctor told me to take, is there anything else that will help? My hair is slowly coming back, hope to not have any more loss. I appreciate so much the people who have been there and done this also.
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Hello, this is my first time posting but I had to reply to the thinning of your hair. I started taking biotin for this and it really seems to be helping, Also, this is my second round with cancer--the first was in Aug 94-radical mastectomy with several lymph nodes removed--then chemo. -my eyebrows in all these years had never fully come back it, but the biotin has changed this! Was diagnosed in apr this year with cancer under my arm, same side as the cancer in 94; but totally unrelated to it. onc put me on femara soon after my surgery, Aside from not being able to sleep at night, my side effects haven't been really bad, I take MSM (have taken it for app 5 years-it is for cartilage and joints), also take vit D, I also had a blood clot (caused by my cancer) in the artery in my left neck-Have been taking blood thinner shots in my stomach for 3 months. I have an appt in the morning for a sonogram to see if this is working. I am so glad I found you girls--it is so nice to read about women who are in the same boat as me!!
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Welcome gauleyeagle!
Kristy
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Hi there. Can't believe I'm back to posting on breastcancer.org, I haven't been on since I finished with chemo. I have radiation behind me now,I finished on Oct. 20 but I'm wondering what's going on with my body and I'm wondering if it's the Femara. I've been on it now for 4 months. I've noticed strange aches and pains in my shoulders one day, in my knees another but now I'm wondering about why things that never really got to me are making me an emotional wreck. Has anyone heard about an emotional factor with Femara?
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Suzmarks - absolutely emotions are affected by Femara - it's keeping your body from producing estrogen. I'm on Prozac 40 mg to help with the waves of emotions. Bone/joint pain is another side effect. I was on Arimidex before Femara and it actually had worse side effects. I'm hoping in time - the side effects will diminish. Best of luck in your journey
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Give it some time ...... I've now been on Femara for just over a year. Do I my hands ache, do I walk like a little old lady after I get up in the morning or after sitting for a peiord of time ... YEPPERS.
Personally, I have noticed that those aches and pains have definitely diminshed with time. At about 4 months of taking Femara, I started with massage therapy, then added accupuncture and even tried to switch to Arimidex. Bottom line, changing meds was not helping so back to Femara it was. Did accupucture help (I'm a bit skeptical, but I tried). What has finally help is just time. By the time I had been on Femara for about 8 months, I noticed that some of those aches and pains had subsided, along with the emotional rollercoaster rides. Sometimes I think much of my issues had to with the chemo induced menopause vice a natural progression to menopause.
I guess I'm just hoping for others that time will help ease some of the very annoying issues of our new norm. Now I'm by no means feeling great ... but as I told my onc yesterday .... this is very doable !!!!
I take my pill on a M/T stomach first thing in the morning.
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wblibrary-thanks for your feedback. I never thought of the Femara when I was wondering why things that didn't get to me in my high stress job were now bringing me to tears. Hard to believe this little yellow pill that I mindlessly pop into my mouth turns out to be such a trouble maker. Guess it's time for me to do some figuring out how to turn things around. With the chemo I just took things as they came with the knowledge it would be temporary. Femara is just too long a treatment to use that approach.
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Gauleyeagle-how did your sonogram go?
Carol-glad to hear things seem to calm down after being on Femara after awhile.
Also wondering if I should be taking Femara at the same time I take calcium & Vit D and flaxseed. Any thoughts?
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Thought I'd post this as a reminder of the list of side effects from Femara .
Side effects of Femara
Because Femara lowers the amount of estrogen in the body, less estrogen reaches bone cells, which can lead to bone thinning and weakening and a higher-than-average risk of broken bones. This side effect can be very troubling for some women. If you have osteoporosis, your doctor may recommend that you take tamoxifen rather than Femara because of this possible side effect.
Other common side effects of Femara are:
- bone and joint pain
- fatigue
- dizziness
- drowsiness
- higher cholesterol
- hot flashes
- weight gain
- nausea
- vomiting
Joint pain from taking Femara can be troubling. But a 2008 British study suggests that women who experienced joint pain while taking hormonal therapy medicine were less likely to have the breast cancer come back (recur). Knowing that this side effect might indicate a reduced risk of the cancer coming back may help some women stick with treatment despite the side effects.
Some women may have other side effects while taking Femara:
- swelling of hands, feet, ankles, or lower legs
- loss of appetite
- constipation
- diarrhea
- difficulty sleeping
- vaginal bleeding
- breast pain
- fever
- cough
- dry skin
- rash
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Suemarks, I as well take Vit D3 (1000mg) , Calcium with Vit D (500mg) and Magnesium. Just had a blood draw yesterday to check my Vit D levels. My onc also had me get a baseline bone density test last year. He said we'd check again at the two year point.
I don't know if your menopause was chemo induced ... but if it was I truly believe it does take time for our bodies to try and re-regulate themselves and adding that tiny yellow pill magnifies the process. Hope you'll be as lucky as myself to find some relief with nothing more than time.
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Interesting about SE's listed in American packets vs Canadian -- ours lists hair thinning too, and I can (unfortunately) vouch for it as a possible/probable SE.
Like Golfer, I've been on Femara for over a year and the SE's have diminished. Still "ouches" when I first get out of bed, but a hot shower takes care of that. I've really only had lingering on/off aches in my hands and wrists. I do take Omega 3 and found that my other aches and pains really eased up within a couple of weeks after starting that. Going to the gym and walking every day has also helped a lot.
Linda
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I'll ditto Linda's comment about being active ... best medicine there is !!!!!
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HI Ladies
I haven't been on for a couple of weeks but thought I'd take a browze and see how everyone is doing.
I have just switched to Arimidex from Femara due to aches and pains. Only taken it for a few days so judgment is out right now. I do notice it upsets my stomach after a couple of hours or so but so far so good. I do hope this takes away the aches, although I already notice the hot flashes are coming thicker and faster. I guess it takes our bodies a little time to adjust. My onc said when you were not already in the change and you take away all estrogen then your body doesn't like it but she said my chances of recurrence rise by 50% if I don't take anything and that's too big a risk so I'll try the Arimidex instead. Anyone else tried the change? How was it for you? I don't seem to see anything really regarding arimidex on this website, maybe that's a good sign?!!
Well I guess I'll take another look.
Best wishes to all, Gaynor
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Gaynorl - sorry to say that I switched from Arimidex to Femara because Arimidex had worse side effects for me. The aches and pains were much worse with Arimidex - along with the depression. I'm happier on Femara. My onc told me you just have to find the right one for you with the fewer side effects. There is a discussion board on Arimidex - check it out - you will find it very enlightening. Good luck
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Suzmarks: Iwon't have the results of sonogram until Wed of this week; but my onc's nurse told me not to worry, because if it was bad, I would have been told to see the dr immediately. I did have an appt with my onc the same day and everything was good. He said my bloodwork was perfect. So this makes me feel good. I wanted to mention the cost of the femara. In WV, thanks to our Governor Joe Manchin getting a bill passed, every female who is diagnosed with breast or breast-related csancer or cervical cancer, automatically is eligible for a medicaid card and this pays 100% on everything except medications and then the most I have had to pay is $3 even for the femara and the fragmin (daily shots in stomach for blood clot). The fragmin is $1800 per month.
Best of luck to everyone and I will remember all in my prayers
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So sorry for all the achiness and such! I have been on Femara for almost 3 yrs now and unfortunately I have had many of the side effects; BUT it has been working as the cancer has not progressed!!
Someone had posted several pages back about having to have ovaries removed in order to take AIs... there is another option in dealing w/ovaries. I have been on Lupron which shuts off ovaries, making me post menopausal and able to take AIs. For many women this is a temporary situational menopause which would reverse itself once the Lupron is stopped. I wish more oncs were aware of this option, just another choice in a few choice world.
Hoping all are well and as pain/ache free as possible
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Has anyone developed a rash on Femara? I've been on for almost 2 months now, a few aches and pains but suddenly I've developed a rash on my chest and abdomen..not sure if its related or not.
Thanks
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i have been on femara since May 09 and have suffered through the hot flashes, achy feet and weight gain. now, out of the blue, my hands have started to feel stiff and my wrists hurt. it started in the left hand and has now moved to the right hand as well. just wondering if the side effects all come at once or do they change with time, since the hot flashes have improved.
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Cathy 123 - no rash here - I've never seen that in the list of side effects - could be an allergic reaction? I'd call your doctor
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Just learned the proper terms for all our aches and pains are Arthralgia & Myalgia - that means your bones & your muscles ache! We aren't dreaming - it's real pain.
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Luke: My experience (started Femara Sept 08) is that the achiness and pain can move around. It has been centered on my hands and wrists for several months, and over that period of time I've also developed mild trigger finger -- first in the middle fingers of both hands, and more recently in the index fingers. And other than feeling stiff and a bit sore all over in the morning, the rest of my joints seem to be okay. I do go to the gym at least 3x week and walk a good distance on other days, as well as doing gardening and other stuff. Exercise seems to be very beneficial. I also noticed that Omega 3 seems to have helped a great deal. Others swear by glucosamine & chondroitin, but that didn't work for me. Now, if I could only find some hand/wrist exercises - sigh -! I am a pianist but find that playing for any length of time just makes my hands ache more
.But, I can put up with it if it keeps me NED. Good luck to you!
Linda
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Hello,
I'm beginning Femara on Monday. My last rads is tomorrow (YEAH) & the onc wants me on this stuff next! I'm reluctant but the recurrence % that drops by taking an AI is too big to ignore.
I'll pop in here & there. Glad you are here.
Joni
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Joni, God bless YOUR day. Forget reluctant; my onc said (paraphrasing here) "Take the Femara or die prematurely from cancer". We have to learn to manage the symptoms..just like a diabetic has to manage the symptoms of his/her medication. Suzanne, you've had cancer and gone to war. Now you are back...emotional 'unreliability' is surely to be expected. Dare I say 'post traumatic stress disorder'??? XXXX
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I will deal with the femara REGARDLESS of the side effects if it keeps me here just one more day. My mind just goes crazy whenever I have pain today that I didn't have yesterday. My pharmacist recommended Motril or Advil 3 tablets every 6 hours to see if that helps. I'm sure the wind, rain & cold is not helping either.
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i'm happy to report that 4 months after beginning Femara that i've certainly learned how to deal with the pain.. i know that it goes away quickly, once i get moving, that the first movements of the morning are worse. i'm not inhibited in any way and am grateful the light pain pills that get me going in the morning. i take vitamin D and fishoil.. perhaps that helps. (i'll do a 2 week, no supplement test and report back).
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My side effects on Femara were almost immediate...I have some arthritis symptoms in both ankles, right knee and hip. My onc says it'll go away eventually.
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Nice to read so many responses, so much good info out here. I think it's helpful to acknowledge the helpfulness of this drug, it puts it in prospective. Just learned the other day that a coworker had her breast cancer back after two years. She is ER- so there was nothing for her to take post chemo and radiation. I find it interesting to hear the statistical side of Femaras effectiveness. From the beginning of this cancer venture I carefully weighed options and looked at the survival stats. From my info. surgery was the most important factor, then radiation, chemo, and then the little yellow pill. Joni, I'm curious what you're being told % wise about Femara. Congrats on finishing radiation. I had major burning with it last month but am happy to say it cleared up very quickly. Apple, nice to see you on this site (Feb. Fury), hope you're feeling good! Gauleyeagle hope you got some good results back. Looks like you're living in the right place if one has to get the big C. That's wonderful that you get such great medical coverage. Kerry_lamb, thanks for the words of support about the emotional side of cancer. Hope all have a great weekend.
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Suzanne, My onc told me Thursday that the oncotype test showed 42% chance of recurrence in 5 years with no treatment except lumpectomy. Then she said the chemo & the radiation dropped that recurrence factor down to around 30% chance recurrence, but with the AI it would drop another 56% from that 30%-my math maybe bad but I figure that takes it to about 12% or so-I'm only 55 & have a 15 year old, I have to stick around as long as possible, so I'm taking the 1st pill Monday, still reluctantly, but hopefully with no regrets. Joni
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Joni, sounds like a good plan to take the Femara. It's amazing to me the different statistics we get. I'm here in Albany, NY and I went down to Memorial Sloan Kettering Hospital for a second opinion after I had my lumpectomy. The oncologist down there told me I had an 80% chance of being cured by having the surgery alone. That sounded good until I flipped it around to saying it was a 1 in 5 chance of it coming back. He said add on the chemo and radiation and it drops the risk even greater. My radiation oncologist recently broke it down for me like this. He said I had a1/2% chance of getting cancer on my noncancer breast the first year which increases by an additional 1/2% each year. Meaning 1/2 % year one, 1% year two and so on. He said there was a 7% chance of return on my cancered breast, and finally a 10-15% chance of metastic cancer occurring. I'm not sure what the Femara does beyond that but I guess suppressing estrogen is a good thing in our cases. I'm going to my reg. onc tomorrow (oops today, I see it's after midnight now) so I think I'll chat up the stat thing with him. Enjoy that 15 year old. I'm 53 and have an 18 and 22 year old.
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So suzanne-any new stats from from today's visit? It just blows me away how facts/figures can be manipulated, switched, etc. to render a result someone else wants you to hear or believe?
Joni
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Make sure when your discussing % your clear about absolute vs relative risk reduction
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Mabels, how does that exactly differ or break down when comparing absolute to relative risk reduction. My onc ball parked the effectiveness of the Femara to a 3% reduction in a reoccurance. He stressed that this whole treatment is to cure the cancer not just treat it. He mentioned that they have a clinical trial going on now with women continuing on Femara for an additonal 5 years for a total of 10 years treatment. Wow!
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Has anyone stayed on femara longer than 5 yrs. I have few se effects now but as long as it keeps the cancer from returning i will stay on it as long as needed.
Just thought i would ask I know one of the se of femara is it could raise cholesterol. Has anyone
had this problem and did the cholesterol raise very high
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Nanna - I've been on femara 31/2 yrs and it has raised my cholesteral to the point I now take Crestor. I don't plan to stay on it for more than 5 years because of the joint pain.
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Suzmarks: I guess the results of my sonogram were good--I still have the blood clot in my neck but it isn't any bigger. So this means I will be on the fragmin for at least another few months. I really am sick of the shots in the stomach. Received paperwork from my onc to get another pet scan the end of december. I am anxious to see if the femara has started to work on my cancer! I have been on it since July of this year, so it might be too soon to see any results. So far, my side effects have been minimal and I thank the good Lord for this. I have lymphedema in my left arm--didn't have until this round with cancer. Onc prescribed a lymph press for me and it is wonderful. It is a sleeve that fits my entire arm-up past the top of my arm. I use it only twice a day for 40 min. and these are the fastest minutes of the day!!
Love and prayers to everyone, gauleyeagle
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Hi, wonder if anyone taking femara has pain similar to sciatica, I am taking femara for 2 years now and since august I have pain in my coccyx, lower back, left hip radiating to my left leg. I have seen my family doctor which ordered an MRI without contrast and everything is normal, then I saw my radiation oncologist who ordered a bone scan and everything is normal. yesterday I saw my medical oncologist and she said that with the bone scan and mri being normal there is no reason to do more test and if it would be cancer it would show up on either test eventhought the mri was done without contrast and now she wants me to stop taking femara for two weeks to see if the pain goes away. So now I am scared to stop femara as I dont think this is the cause of my pain. should I stop taking femara like my oncolongist said as I am scared that my cancer return and is anyone got similar pain while on femara.
Sig
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Sig - Funny you should mention your sciatic pain. I've only been on Femara for a month, but in the last week I've had 2 bouts of sciatic pain in my left hip & leg. It was excruciating, but thank goodness only lasted for a day each time. I loaded up on pain meds & ibuprofen each day. It really scared me when it first started, because I've never had it in my left side before. I've had 5 back surgeries, after the sciatic nerve stayed compressed in my right leg, with no relief from PT or epidurals after 6 months each time. The last 2 surgeries were 2 months apart (a myelogram showed that some bone fragments had broken off after the first surgery), & the pain was so excruciating for the following 2 years that I was on methadone for the chronic pain. It was the worst time of my life, but the Methadone kept me pretty much catatonic. After 2 years, I woke up one morning to find the pain had finally subsided. Anyway, I'm paranoid now whenever any kind of sciatic pain crops up. Hopefully, these 2 bouts this week will be all I will experience. If it continues, I plan to call the med onc. I'm sure he'll say it's not the Femara, but I can't help but blame it because I haven't done anything to cause it. I'm just keeping my fingers crossed. Hope you will find some relief soon!
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I have been on femara now for almost 2 years and this is weird but I went to the emergency room Sunday because of pain in hip and down left leg and it was horrible pain. It started on Friday and I could not pick up and bend the leg or anything. I was given demerol and phenegren in a shot and pain pills to bring home. Ruled out blood clot and said they thought it was sciatic nerve pain....HMMMMMM I guess it could be the femara never had this before. Have all the joints messed up bad though and some days feel like I cannot walk....jude14
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wblibrary, Sorry it's taken a little while to get back you but I decided to wait a little while and see how the arimidex goes. The first week was hellish but this week not too bad. I think maybe the first week was bad as I still had the Femara working in my body, kind of a cross over period. I am finding the hot flashes much worse, more severe and frequent. I am finding one knee is swelling and I ache on an evening much more than during the day, my sleep is being disturbed even though I take a sleep med nightly. I will give this med a try for a while though and see how it goes.
We found a suspicious lump in my treated breast/chest which I had an ultrasound for last Friday but no news yet - they say no news is good news right? I have had some pains in that armpit which they also ultrasounded a few weeks ago as one tech saw something but on the follow up ultrasound nothing. The onc said she wants to keep an eye on it so not sure if all was completely clear or not. I laughed with a friend last night about having almost monthly ultrasounds?! I sure hope this journey gets easier as time goes on. I had hoped that once the big gun treatments were over everything would become a piece of cake but I guess not, if anything I think this period is far worse as we are always seconding guessing our bodies. Does anyone else have a feeling that the C is in there somewhere and trying to give us early warning signs, but am I just becoming paranoid? I never used to be like this but then I hadn't had cancer. I think I would prefer to go ever few months and have a top of chemo treatment, it was easier to manage than the AIs, you knew what ever SEs you felt were temporary and I guess it kinda made me feel safe. Here I go rambling again. I think maybe that's because to everyone around me I want to show just a positive outlook but inside I am grappling with this thing.
Well must go as I have work to do, thanks goodness it's Friday, I'm soooo ready for a rest.
Love to all
Gaynor
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Hey for anyone taking femara with the bone pain side effect.. A friend sent me a link about bone regeneration.. and believe it or not PRUNES are being studied. They have shown bone regrowth in rats with no estrogen.. Now that said I tried it and believe it or not I feel 100% better. After a month on Femara I felt 80 years old and now I feel almost back to my old self. So ladies give it a try and pass the word. more details any search on prunes and bone loss will give you a bunch of info.
HUGS
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Gaynorl - sounds like you have a lot of depression going on and I can't say I blame you. You are living with the unknown again. It's a horrible feeling. I hope all your results come back negative so you can move on and start to live life to the fullest again. I am doing SO much better on Femara than I did on Arimidex. Depression hit really hard with me while I was on it too. I'm taking Prozac to help with that. Bone pain isn't as bad on Femara for me, but now I'm hearing about higher cholesterol and hair loss a lot. I don't think there's a drug out there for us without side effects. We just have to keep plugging along and marking off the days on the calendar. I'm praying that at the end of the 5 years - 10 years of taking an AI won't be the norm. I agree with everyone who says chemo is easier - cause they is a light at the end of the tunnel with that. I have sciatia nerve pain that comes and goes - it's back again last night and today - but then seems to lessen and go away for at least a week before it returns. Aleve is my savior for my aches and pains - it really does help me. I'm going to try prunes RHP - my husband uses them for digestive problems. I guess I'll just buy another bag or two. I'll keep you informed on my progress with them. Hopefully after the 5 years - (4 1/2 now) I will start to feel my age and not my mother's! Hugs to all you wonderful ladies out there dealing with the side effects to trying to survive!
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Wblibrary, is your sciatica nerve pain is cause by femara? is it something new to you since you started femara and is the pain bearable without medication?. Was it confirm. Cause I have similar pain but doctors cannot confirm this as my lumbar spine's mri and bone scan turns out normal. so now they basically dont know what to do. my pain is not intense, i can tolerate it without pills. but I do have shooting pain in the back of my leg about 4 inches above my knee, dull aches in my lower back and coccyx, and shooting pain in my left hip near the junction of the hip and femur.
Sig
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All I know is I never had this pain before I started taking Femara. I haven't been checked out by a doctor because it comes and goes so much. I know the Aleve does help and time. I also use a little heat on it and that seems to help. Mine is more on my left hip/buttocks and shoots down my leg (side and/or back) Sleeping is the hardest - I can't move without feeling like I'm being stabbed. Otherwise it's like a neuralgia pain that you realize is there when you move the wrong way. I will survive without seeing a doctor as long as it goes away longer than it is here. I'm sure there's exercises to do to help it out. I need to check on-line and start doing some. I think the only thing a doctor could do is put you in traction - and that's not an option for me. I have too much on my plate these days to do that. I wish you well - it's frustrating not having a specific answer to a medical problem. Just makes you realize how much more we really have to learn in the field of medicine. Take care - hope you feel better soon. Sue
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Hello ladies, I'm going to join the Femara group now, I was taking Aromasin, but had to stop due to high BP's. I'm starting this week. All this talk of sciatic pain is kinda scary! I'll check back to see how everyone is doing. Much Love, Jessica
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I also have a lot of lower back pain. Some days I feel perfect and other days I feel like I can't take the pain. I sleep well though.
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Hello to everyone! I recently switched from arimidex to femara, due to an increase in depression. Hotflashes and body/joint aches are much worse on femara. I also have neuropathy from taxotere in my feet, so I was prescribed Cymbalta, which has helped. They prescribe that for fibromyalgia, so I guess that makes sense. I'll be upping my dose of glucosamine after reading some of your posts too. I hear that taking a "vacation" works but that the symptoms return as soon as you go back on. Sigh.
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I wish I could eat prunes..I can't stand the taste. Can't even get them to my lips.
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Thanks for you input. I've always suffered bouts of depression but with medication have been pretty much OK. Was diagnosed with a second BC in the right breast in March. Stage I ER+, no lymph node involvement. Started Femara 2 months ago. I've had depression on and off since September (before starting Femara). Am seeing a psychiatrist. What happens for me is one day I feel pretty good - almost like my old self - then the next day have really got to push to "get up, suit up, and show up". Some nights sleep pretty well - other nights awake around 2 a.m. and just a light sleep until time to get up. I have pain in my right hip and right leg which comes and goes. I can handle the pain so far - its the yo yo days that get to me. Hope to get some input. Seems like everyone on this site is braver than me! I love you all.
Carole
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Hi gk2bc0 - I took a "vacation" from Arimidex when I switched to Femara. I was off all meds for about 3+ weeks - I can tell you all the aches and pains went away. AI's are definitely the cause of your aches and pains.
Caroleb - I totally understand those "get up, suit up and show up days" - they take a lot of effort lately. I am looking at reconstruction surgery come January - so I have quit my part-time job knowing I need to get some "me" time in before I push my body into another state of shock.
We are all in this together. We are definitely not alone in our effort to survive breast cancer and all that entails. No one realizes how difficult it is unless you've been through it. Doctors casually mention taking a pill for the next 5 years - they don't tell you that your life will change because of this little pill. Hugs to all - hang in there - keep your spirits up!
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Is there any test to see if your body is metabolizing femara and really helping? Recently I heard a doctor say there was no test to see how well the body could metabolize femara. I have been taking femara for 18 months and had few SEs til now and arthritis is a lot worse and have lower back pain that I wake up with almost every morning. I had a test for metabolism of tamoxifen. I can metabolize that but really don't want to take it because of blood clot possibilities
If my body is not metabolizing the femara, then why am I taking it?
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Hi, I am actually asking the same question, how do we know if femara is working?.. Is estradiol level remains low means femara is working? I have been taking femara for two years now with almost no side effects, dont know if my side effects are due to femara or low estrogen in my body. I had minimal hot flashes (but I had these throughout chemo also), a little stiffed fingers first thing in AM. the major side effets I have happenned about last spring (18 months on femara) is hair loss, I am losing my hair quite a lots, when I wash and comb my hair. Recently about three months ago i started having lower back pain radiating to left hip and left leg (back leg) and coccyx pain which not sure if cause by femara as I am taking femara for two years now, a question that I asked earlier in this thread and several girls mentioned that they do have similar pain as mine, so I guess that could be from femara. Thanks to them for mentionning that they have simlar pain, it is re-assuring me, at least I know what could be the cause.
Sig
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wblibrary, thanks for your respeonse. I'm not sure it's depression though, just a lot of questions to ask. The arimidex pain seems to have faded which is a good thing. Hopefully I'll hear formthe onc today with news from the ultrasound then that will be taken care of, it's the waiting around that's a nuisance.
Good luck to all still taking Femara, I guess it's time fo rme to swith threads to the Arimidex girls! Hopefully I will carry on having less paunful side effects with this med and get the remaining 4 years out of the way without too many painful side effects.
Gaynor
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Hello all femara ladies, I have been reading the last few days of entries and I see myself in so many of you all. The thinning of the hair--how bad has it gotten? Mine is definitely thinning some but am taking biotin and I believe this is helping. As for aches and pains, mine have really been minimal. For the past 5 years at least, I have taken folic acid, fish oil, vit. d, MSM, was taking aleve and aspirin daily, but on the blood thinner for the clot in my neck, stopped these. I do get depressed but my family doctor upped my effexor (for my nerves) and this seemed to help. I am only having to see my onc every two months, so I hope this means good!! He has scheduled another PET scan the last of dec. I really hope the femara is starting to work on the lump under my arm. Have only been taking it since July, tho.
Gotta run for now--going Christmas shopping!!
Love and prayers to all, Sue
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I am so serious about the prune thing. I can't believe how much better I feel.. It has been two weeks and I have not had a day since that I felt like I just couln't get up... and I really was on the verge of saying I just can't do this. Surgery and radiation was easier than the way I felt for the first 6 weeks on Femara.. now I feel like my old self.. So give em a try and let me know..
WBLibrary I hope they work for you as well as they have for me. Honestly I was waiting for a reply from the Dr, about adding boniva to the mix and was reading about adding all those other side effects.. amazing how things are provided for us if we open our minds and our hearts. If I hadn't told my friend about all the pain she would not have forwarded the prune info..
I am so sorry Jane M I understand not over the lips.. I feel that way about sweet potatoes and if they helped I would have to forget it because they honestly make me ill to put them in my mouth.
Hugs all
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RHP
I'm also trying the prunes, can I ask, do you eat them on an emply stomach away from other foods,delay and at what time during the day. I have started last week, I'm on 9 small prunes a day, and have not felt different yet,maybe I should eat more or the big ones, thanks for answering
Welga
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I have the same question...how many prunes? I just started on the neratinib clinical trial, and guess what the side effects of that are? diarrhea! now, if prunes are the answer, the question is, which would I rather have, bone pain or diarrhea? there is never an easy answer!
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The next time I go to to the store, I'm buying prunes...I'll try just about anything even if I have to hold my nose to eat them.
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Prune don't give me diarrhea, I'm so constipated with all the meds they don't have any effect on that part for me unfortunatly.
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Welga I eat more than that and I eat just the dried prunes from either Sams club (cheaper ) or the grocery.. I probably eat over half a cup and just snack on them when I want something sweet. Hope they work for you.. Hugs
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sorry gk2bco you are in a bit of a mess there, with Femara it is constipation so the prunes are a plus!
Jane M I am glad I don't have to hold my nose for prunes, actually I like them, they are sweet and now when I want a snack I have an excuse. Honestly it is the first snacking I have done that didn't make me gain weight..
I was so excited about them working for me that I am glad others are giving them a try. By the way I also take about 2,000 (units?) of D3 but that alone did nothing, but don't know if it is needed with the prunes..
Hugs
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The doctor handed me the script, i filled it, but the bottle of Femara is still sitting there. My GYN did a lab test on hormone levels and it indicates the verification of menopause, i am 66 years old, and my levels of estrogen were normal for my age. So do i really need this stuff? I am afraid to start it. But then i wonder if all of you are younger than i am and are experiencing a forced menopause of sorts with this therapy? I have already gone thru menopause in 1999. Many of the SE's you report, i have already experienced with my natural menopause. I am overweight and that is supposed to be the source of my breast cancer estrogen driven deal. But i hate to have the pain you are experiencing, i need to move to lose weight. I don't want to have any more arthritis than i already do. Then an idea popped into my head. Have they ever tried giving this stuff out just once a week? Why every day? I am supposed to get other lab results in 40 days with another test, i want to pop one weekly dose and see if it brought my levels down without any SE. Of course, i would not tell the doctor. He'll think i am crazy, and i am, because when he told me i would be taking this stuff, i didn't question him on it. Why does a menopausal woman have to dry out further? I am already a dried up old bitty, do i really need to go the distance? Did anybody out there ever cut back on this stuff and get good results?
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DH is bringing me home some prunes today...I'll try anything..who knows, maybe I'll like them. I haven't tried them since I was pregnant with my first 25 years ago and then in was in juice form.
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Hi Lemon Jello,
I am 72 years old and didn't think I had much (if any) estrogen left. However, my cancer was ER positive. I had a lumpectomy in my left breast in 2007;ER negative so just had radiation. In March this year I felt a lump in my right breast (so much for not doing self breast exams); had a lumpectomy and radiation. This one was ER positive. I didn't want to take the femara but wanted to do whatever I could to prevent any more cancer. I was full of anxiety which led to depression, sleeplessness, etc. But I've been taking the femara for a little over 2 months and am doing better mentally. I do stretching in the morning and walk just about every day. I asked about taking a whole pill since I am thin and why did everyone get the same dosage. My Onc said no studies have been done on that so I just swallow the pill every day and tell it to do its work! Each of us has to make our own decision. What helped me a lot was reading the experiences of the brave women on this site.
Love, Carole
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RHP
I'll up on the quantities to see if it works better. Like you I like prunes (in fact I like pretty much everthing sweet...) so there is no problem luckily for me taking them. I also buy the cheap ones from the grocerie store but they are not that cheap anyway. I might buy 10$ a week supply, of course it's cheap if it saves my bones and helps with the ache. Thanks a million
Welga
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DH brought home some prunes. I ate about 8 of them and saved 8 for tomorrow. Is this enough? I don't like them, but if they'll get rid of my SEs, I'll eat them all day long.
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hi Lemonjello There is a great web site by the Femara company that tells how it works and why. My understanding is we have estrogen in our body that is not from our ovaries.. that is why they give us femara after menepause and not tamoxofen that has worse side effects.. Femara also is out of your body in 24 hours so it has to be every day, they have studied the dose and it is no more effective with more and less effective with less. So if you are going to take it, you should take it as prescribed. Also if you start the prune regimine the day you start along with a 2000 iu of D3 each day, hopefully you won't have side effects
The explanation I recieved from my onc. (from Fred Hutchinson) was that it reduced my chance of another occurance to 10% I liked a 90% chance of not getting BC back better than a 60 or 70 %
Jane I eat 2 or 3 at a time 4 or 5 times a day. I too like anything sweet so it is now something I don't feel guilty about eating for a snack. If you have a Sam's club or Costco you can get a bigger bag and it cuts the cost in half..
I don't know if how long you have been on Femara makes a differance but I had been on it about 6 weeks when I started the prunes (3 months on the vit d3) Honestly I was really considering not taking it anymore as I felt worse than I did after the surgery or radiation. But the prunes have made a differance that I have gone back to the gym and am walking again etc. instead of "coping" with side effects for 5 years and am getting on with my life..
Love you all and please give the prunes a chance and let me know if they start working for you!
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Saw my rad onc on Tues. for my 6-wk check up; checked out great from rads. I mentioned the severe sciatica pain & knee pain I was having, which started & wouldn't let up. She suggested calling the med onc, which I did. He took me off Femara for 2 weeks to see if the break helps with the pain I was having. He said it might take up to a week to notice any difference. Vicodin wasn't even helping with the pain anymore. I went for a check up on Wed. at the orthopedist from the trigger finger release he had done on 10/19 (all fingers & thumb on left hand). They are doing very well, but I asked him if there was anything he could suggest in helping me deal with the severe sciatica & knee pain I was having. He prescribed short-term Lorcet, which has finally helped in allowing me to at least get some sleep. Just today I finally feel like the pain is beginning to ease off. Am keeping my fingers crossed that this will continue. After the 2 weeks break from Femara, I will call the med onc back & find what he wants me to do from there.
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BTW, think I'll get some prunes & try them, too. Sure won't hurt!
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I bought more prunes today. I can't say if they are working or not yet because I just had my R mast on Monday and I have been taking Vicodin at night for that, but I'm going to keep eating the prunes, too, so I can build them up in my body.
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Jane I hope you are healing and feeling better.. Nas 14 hope to hear they work for you..
Hope to hear that they are helping
Hugs
Robin -
I don't feel like reading past posts, but why are you all taking the prunes????
I've been on Femara a year now and I don't have any s/e's. I try to walk every day , have no pain, even though I've had Osteoporosis for years. Taking calcium with D3 and Omega 3.I know Femara is sucking all the good stuff out of the bones but I'm trying to make the best of it. My tumor was ER+ and at 58 after being in menopause for 11 years I didn't think I had any estrogen left. But the Pituitary gland and the Adrenal glands continue to make estrogen...God knows how long. Surprise!
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Artsee They have done research that shows eating prunes actually promotes bone regrowth.. So give them a try even though you don't have the pain.
Hugs
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Thanks a lot. I will give them a try.
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I completed five years of Femara two months ago. The only change I am seeing so far is that my hair is getting thicker.
Lately, I have bad pain in my legs at night when I am in bed. It keeps waking me up. It is like having a headache in my legs! Could it be a reaction to the Estrogen coming back into my body? Has anyone else had this?
Thanks! This is my first entry to this forum.
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Gee pain in you leg, maybe the bones are groing back, I had a little of that when I upped my calcium. I could be completly wrong, just saying this out of the blue.
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When you say "prunes" and get them at COSTA, are they really dried plums? The ones at our COSTCO are red and the dried prunes at Trader Joe's are black and pitted? Which ones do you use? I've been on the Femara for about 3 months and the leg pain (right leg, right hip) is increasing and woke me up around 5 a.m. Thanks
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The pain in my legs will pretty much disappear when I start walking around. I don't know what to think. I do take 2000mg of Vitamin D and about 1000mg of Calcium Citrate
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wow! I may be switching to an AI next week.... I see my onc. on Dec. 11th, and we'll discuss it then. After reading these posts, I am now kinda nervous about the switch from Tamoxifen...
I was going to ask about Femara.... now I am wondering if I should switch at all...
I had some problems with Tamoxien, ...I had to have a D & C because it caused my uterine lining to thicken, and I had some kind of uterine polyps growing in there, too... UGH! These drugs are SO SCARY!!!
Harley
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i love prunes.. but i have to eat them strategically. they are kind of gassy for me.
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Caroleb The prunes are any usa dried prunes.. I first purchased them at Safeway but they are about 1/3 the cost as Costco or Sams.. I am sure TraderJoes prices are good too.
Harley44 from what I have read the side effects of the AI 's honestly are better than Tamoxifen.. one bad one withT is uterine cancer and cancer of the other breast.. honestly I am not sure why they would keep giving us a drug with even a 2 or 3 % chance of giving us another cancer when the reason we are taking it is to keep from getting cancer.. expecially when they have alternatives..
anyone trying prunes please let me know if your side effects are better. I am trying to get Fred Hutch to do research for SI to Femara with prunes.. The gal keeping data on my VIt D study was iffy about a study because it was a "natural" thing rather than a pill. If I can show her several people that it has helped maybe she will present it and we can help others.
Hugs and stay well
Robin -
My BS has suggested that I take Femara( I am 45 post menopause since 40 y/o) but I am a little scared due to the SE,I can not afford to be "forgetful " bc I am RN.Sometimes I feel like forgetting all this Bull and not taking anything for in the long ride I am going to die anyway if not by the BC of something else.Sorry for that but I am so frustrated with all this that I needed to vent that.Wish I could cry but I can't,see it as being weak.On another note FYI ,if anyone is struggling with their insurance co-pay for the medication Femara has a program called The Femara Care Program Prescription Discount Card that you can print out and take to your pharmacy and only pay 10.00 with your insurance card(co-pay) mine was going to be 50.00 until I read about this program.It is valid in Florida where I live but you would have to read the fine print about your state,just though I would spread the word any save anyone some money while I was at it.
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Hi Harley & Lucitarn,
Sorry that you fell scared, but don't actually a lot of people are ok with AI, and there are tricks to help with the side effetcs, and there are 3 of them so you can switch if one does not suit you.
Irony is, lately my onc. was talking about switching me to Tamoxifen (due to some bone loss)and I was scared like hell, hearing about thickening uterus, blod clots and metabolizing and so on. Finally he told me today I would stay on Femara I went OUF!!
We are all scared of the unknown, but once you try it, maybe you'll be fine on it or get use to the little inconveniences.........lolll Good luck
Welga
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it's really not bad.
(i don't know if the prunes help, but i sure do like them.. they definitely have some fibre.
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Harley, I'm getting ready to go on starting week 4 on Femara, and fortunately nothing bad that I can point too that's been long-lasting or annoying, Praise the Lord!
Joni
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eating the prunes... bumped up to vitamin d3 today--2000ius... my joint stiffness has been more pronounced over the past few days--but then again, I did not swim on either of these days- just used the elliptical trainer--- swimming is really like a miracle drug for me with these side effects..... still trying to figure out the vaginal dryness--- stocking up on replens---both pharmacies in my neighborhood had RUN OUT of it--which tells me I am not the only one in town with this challenge...
I also noticed when I got my Lupron scrip last time that there were several other luprons there--- again, not the only one--- a little reassuring.
saw a woman with a wig on yesterday-just wanted to reach out and hug her and tell her it would all be ok.....
back to the pool...
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Welga,
Really... Tamoxifen isn't really that bad, either. It's been around longer, and has been studied more than the AI's. The uterine cancer is VERY RARE, and since they are taking it, those women who are taking it are being monitored closely, so that IF it should develop, they have surgery immediately...
What concerns me about the AIs is the risk of osteoporosis... I already have low bone density. AND, the AIs raise our cholesterol levels... I DO NOT want to go on cholesterol medicine.
Are you getting Zometa, while you are taking Femara? I was thinking about Femara. I will have to discuss this with my onc when I see him on Friday.
Thanks for the info....
Hugs
Harley
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It is so amazing to read others posts and feel so connected with people you have never met. Honestly all these feelings we have in common..
about the prunes.. I had Costcos years ago and liked them and since eating them for my SE.. have only eaten Sam's or from the grocery.. yesterday I bought Costo's really don't like them as well.. don't know why maybe just not as sweet..
The high cholesterol thing.. Man this ticks me off.. I have worked my buns off to get mine lower and it will be tested again in January.. then they will be putting me on meds.. for it, PITA one more thing with leg cramps etc..
sometimes I just get tired of all this stuff....
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Hello Ladies,
I can't get involved in the prune conversation as IBS/ diarrhea has always been my issue.But if anyone has a good remedy for that besides Imodium I'll listen intently. My issues is whether I'm experiencing real SE's or just being a hypochondriac. I've been on Femara for almost a year now. I've experienced mostly hand pain since I started taking it. Yesterday I was out in the elements ( around 30's ) for about 4 hours at a football game. By the time we got home I ached so bad I thought I was going to pass out. My back, especially, hurt like hell. Is this what I can expect with Femara and cold weather or am I just looking for a good excuse to get out of snow removal for the next 4 years?
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PugMum
We are all so different in what we can tolerate and what kinds of SE's and tolerances we have. I am still sitting on the fence, reading checking posts, asking questions about Femara.
I have been chatting with another survivor on the ACS chat, and she swears by tonic water with dark cherry juice to alleviate the bone and joint pain associated with Femara.
I read on the tonic water bottle that it contains quinine, and that is also an ingredient in the "leg cramp OTC medication my aunt used to take, so why that would help on bone joint aches I am not sure, unless cramping is present as well and we just notice the aches and pains.
Regarding prunes, I already drink prune juice, (it's my laxative), not sure if eating prunes would be better, I started out with prunes years ago but found it more convenient to drink the juice on a daily basis.
I have not started Femara yet, have the pills, have a prescription for more, just can't seem to find the DAY to get started. I am 3 weeks post rads, and I am just beginning to feel human again, feeling better every day, energy returning etc. and with so many other health issues in my life I just don't want to start Femara as of yet.
I have osteoporosis, high BP (and a coronary stent implant), hypothyroidism, high cholesterol and arthritis, and feel the femara is gonna make everything sooooooooooooo much worse, I am going to at least wait until after the holidays to make a decision.
My oncology doctor sees no problems with my taking Femara, just tells me we will deal with them with medications if they come, I am so tired of taking prescription meds, and don't want to add any more. I stopped trying to have him see it from my point of view.
I am stocked up on prunes, tonic water, dark cherry juice and Femara however, so maybe New Years day ????
dsgirl
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Still eating prunes - but not sure if I'm noticing any difference yet. Going to keep going though - it is definitely worth a try to get rid of all my aches and pains.
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Still eating prunes - but not sure if I'm noticing any difference yet. Going to keep going though - it is definitely worth a try to get rid of all my aches and pains.
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Still eating prunes - but not sure if I'm noticing any difference yet. Going to keep going though - it is definitely worth a try to get rid of all my aches and pains.
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still eating my prunes here too but have to say I am about to toss the ones I bought at Costco.. really hate them.. Like Sam's or dole better.. even western family.. also not sure they are the same product as I am not feeling as good.. in my mind or that I am not eating as many as they really taste bleck..
DSGIRL.. I can honestly appreciate not wanting to take Femara.. but you should ask your onc what your % for possible re occurance is if you don't.. Femare took mine down to 10% from like 40% for me that was worth toughing it out! Certainly not happy about it but much better than the alternative..
hugs
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I have been on a femara for a year now.I have some joint pain and still have hot flashes but,not as often. I hope i can make another 4 yrs on it. I thank GOD for helping me through and the love and support of my family.
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Harley,
Yes you'r right about Tamoxifen being there longer, but since I thought my doctor would take me off Femara and swith me to Tamox my biggest worry was that I would not metabolize it.
I have some bone loss with Femara, (or caused by lack of exercise since diagnosed) and cannot take Zometa because I've had too much dental problems since chemo, jaw necrosis scares me as I had to get teeths pulled out twice and a root canal also lately. Cannot affort anymore root canal, and with Zometa dentists here won't pull a tooth out. Also the others biphos. would be to hard on my stomach (also jaw necrosis). So if they take me off Femara and I am not a good metabolizer I'm left with nothing. (here in Montreal they wont do the testing anyway).
As far as bone density I know you can increase it by doing more exercices, I'm not able right now to do a lot, but eventually will. This is why I started the prunes, they are supposed to help with bone loss. Cholesterol can also be helped I think with oatmeal, I know for now mine is just at the limit but I could also maybe control it with diet.
Good luck with your decision, the only thing I can say, is you could try Femara and if things get too hard switch back to Tamoxifen.
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Ladies,
I saw my onc. today, and came out with a script for Femara. He said that he's fine with me waiting til Jan. 1st. to take it. I still have almost 90 Tamoxifen pills left...
still scared about taking it, and will be getting a bone density test next week. I know I was supposed to get it soon, but what's the RUSH??
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I have been on Femara - and so far so good. No side effects to speak of, except for some hot flashes! I see the dentist next week to check if I can have zometa - my onc. would like to start that twice a year.
Harley - don't know what the rush is. Chemo put me into menopause and my onc. ordered the metabolizing test for tamox. which showed that I was not a great fit, so femara it is. My onc. seems to prefer it but I am not sure why.
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aprilgirl,
I have been taking Tamoxifen for 2 years now, and my onc's plan for me was to have me switch to an AI after two years on Tamoxifen.
Good luck with Femara! to both of us!!
Harley -
I took the jump today and started the femara pills. I am not sure why this is so hard after chemo, radiation and herceptin, you would think the pill would be "no sweat". I do worry about the side effects since i had just about every one with chemo and herceptin. i even had some they didn't know about
. After reading the posts I will be going to Sam's today to buy some prunes!Really glad this post is here, while I hate to see others in the same boat it's sure nice to have company!
Karen
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Hated it, hated it, hated it! I was on the stuff for two months and had absolutely no quality of life (constant hot flashes, joint pain, hair loss) while on it. But that's my exerience, I don't want to discourage anyone currently taking Femara or considering it.
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Harley, I know it was several years ago (aug 94) but after chemo for breast cancer, the dr. put me on tamoxifan. Took it for app 8-9 months and quit. It was killing me--I had every side effect possible. Cancer was discovered again under my left arm in March of this year and have been on femara since July. Side effects are not too bad; but, think I cracked a rib last week. I fell onto the side of the bathtub. Had my sister to wrap me with an ace bandage--this is basically what the ER would have done!!
I bought prunes today - Sunsweet. ..will give them a try. anything to prevent bone loss.
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gauleyeagle,
Oh, no! So sorry that you are fighting bc again. Sorry about your cracked rib, too... sounds painful!!
WOW... Now I am even MORE frightened!!
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Hi Ladies,
Well here I am again, tried Arimidex and decided the switch wasn't worth it. The pain thing was about the same but the constipation was getting beyond a joke, I could go a full week between you know what so I have switched back to Femara as for me the constipation wasn't an issue with that.
I did ask my onc about have a bone density scan when I go back to see them in February as it woudl be a year since I started taking the AIs but she said that it wasn't normal practice here in Canada unless they had identified bone density problems in the initial scan, before I started. Also everyone keeps mentioning about cholesterol levels but I haven't had any blood tests in months, they don't seem to check for that. Is there any symptons I should be looking for? I apologise if I sound a little unknowledgeable about these things but since I came bak to work last March I don't have a very much spare time to investigate things or keep up to speed on what's the latest trend out there. I rely on my onc to steer me through things maze but maybe I am missing out on important ways to manage side effects. What's the thing with prunes? I haven't taken prunes since I had a problem after my oopherectomy with my bowels shutting down, I was like to exorcist with projectile vomitting and that with prune juice is not a pretty sight let me tell you - for some reason I have been "off" prunes ever since.
Well time to go and get some work done. We are on the run up to Christmas and a week's vacation in the sun of the Domincan Republic, kind of a cancerversary - a year since I was done chemo, tomorrow is one year since I started radiation - lots of additional anniversaries to celebrate these days.
Wishing everyone a very Merry Christmas & a Healthy and Prosperous New Year!!!
Gaynor
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Gaynor,
Hello. There really aren't any symptoms or signs of high cholesterol levels, and that is why we have to get them checked. It's just a simple blood test, a lipid profile, but you WILL have to fast before taking the test. I can't believe that your drs. don't order these tests as a rule of thumb.
Merry Christmas to you, too! Here's wishing everyone a very HAPPY, HEALTHY, and stressfree NEW YEAR!!
Harley
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Lillian1, as I read your comments I know that is why I am so hesitant on starting in January like I am suppose to. My hot flashes are so bad now I am afraid of what they will become when I began the medicine. Has anyone already have bad hot flashes then started the medicine? If so what happened with the flashes? Any input would be nice to hear.
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I had hot flashes before I started and they continue...usually 10-12 a day...a couple of which are during the night.
Edit to add - New SE - trigger finger right middle finger - yay!
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sunnyfornow - my onc. prescribed Gabapentin for my hot flashes, as they would wake me up often at night and really effect my sleep. It also helps minimize the hotflashes during the day, so I really only have a few in 24 hours. My sister is a pharmacist and said it is a common drug for bc patients and hot flashes. I always double check things with her!
As much as I HATE to take another prescription, I hope to stop taking this in the spring.
edited to add: My hot flashes started mid way thru chemo, and went away completely with the gabaoentin. I went of the gabapentin and they came back - right before I started femara.
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Gaynor,
I'm in Canada too, Quebec, I get yearly blood test from my PCP and he also prescribes (I asked for it) yearly bone density test to see the bone loss from AI's.I asked my onc about bone density test and he would also prescirbe them . Prune are suppose to help with bone loss. Hope this helps,
Welga
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Gaynor -- ditto to what Welga said. I'm in Ontario, as you are, and your GP should be ordering cholesterol tests and a bone density scan -- precisely because these are possible SE's and because there are medications to offset them. Take along the Femara insert; unfortunately some docs aren't as familiar with AI's as they should be.....I guess they think it's the oncologist's job??
Cheers, Linda
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Aprilgirl1 thank you for the info,I will be giving it a try. I had neve heard of this medicine so I am quite interesed in checking it out. I have tried exercising and drinking lots of water and everything I have heard of for self help. I really wanted to find something that might help before I started the meds. Along with everyone one else I will be trying the prune thing too. I like them so that won't be a hard thing to do.
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After taking a break from femara.When start taking it again does the s,e stay the same
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I was on Arimidex for 1.5 yrs and switched to Femara. In 4 months started serious hair thinning. Anyone else having serious hair thinning on Femara?
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Started Femara 3 weeks ago for a recurrence of BC with the tumor under my pectural muscle of the same breast that I originally had it in 14 years ago, getting another opinion on the 6th but also have an appt with the ono on wednesday to check the status of the medicine to see if side effects have kicked in yet, as of yet none so far but I see that others have them....
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If you have AFLAC(cancer policy), be sure to turn in your Femara receipt to them. It is considered oral chemotherapy--no wonder my hair is so thin!
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I am still very new to this group but I do want to add my experience, short as it was, with Femara. Before my rads I was told that I would be taking Tamox but when I saw my Onc afterwards she switched me to Femara. She went very quickly over a very short list of possible side effects and then added that the full cost was $300 per month!! I'm am with Kaiser through Medicare and the Part D drug benefits apply to me. Even though my copay would be $35 I would run out of benefits about 3/4 of the way through each year. She said she tries to get samples but I would still have had to pay for my other meds. I filled the prescription (3 months) without fully thinking this through and took it for 2 weeks before I had bunch of symptoms start all at once. I had muscle pain in my buttock(getting worse), left neck and trapezius, right shoulder, intestinal cramping(once every day like clockwork) and finally, increasing hissing(tinnitus) in my ears. (I already have arthritis in my fingers and that gets worse off and on) I finally started looking on the web for information and was so shocked at what I finally found. I quit at 16 days and informed my Onc that I would have absolutely nothing to do with this or the other AIs. It has been two months now and my symptoms have not let up at all. I have had my hearing tested (it's ok)but there is nothing to be done about the noise. Now I have to see a GI doctor about the abdominal pain. I just can't understand why these symptoms continue when I'm not taking the drug. I agreed to take the Tamox but am not going to start until my current symptoms have been treated. I am 66 and I don't want to spend what might be 1/4 of the rest of my life suffering from the effects of this drug. I took hormone replacement for 10 years and that is very likely what encouraged this cancer. I have been off that since March with the resulting hot flashes,of course, but they have diminished greatly except during the 16 days of Femara.
I feel very good about my long term chances even without AI therapy (but trying the Tamox.) Thanks for reading if you got this far in my story. I feel great sympathy for those of you who are brave enough to continue dealing with side effects. This is a great site and I will be continuing to read and learn from all your experiences.
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Ok, it's been a month on Femara for me. I do have some joint pain, but what I find most disturbing is increased short term memory problems and focus difficulties. Is anyone else experiencing this? I have read some research reports, but the memory/focus issues are not "widely accepted" or researched yet. We'll see what happens there. Happy New Year to you all! Jessica
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YIKES! I already have memory problems... I hate to think what will happen once I start the Femara...
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Harley & all, Knock on wood, I'm not having any SE on Femara (started 11-16), except for an occasional hotflash. I already had joint pain & it hasn't increased. My hair is coming back in from chemo OK, not noticing any thinning and hell, I'm 55, my dad has Alzheimers-my memory weaves in and out, always has, but I'm not noticing any difference so far!
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Aug242007 I had a god bit of hair thinning and my hair also stopped growing. Started taking Biotin 5000 mcg and thinning stopped and hair started growing again.
blondiex46 I had the recurrence of breast cancer--tumor under arm on same side as the breast cancer. Here I thought, after 14 1/2 years that cancer was just a bad memory!! ha Mine was diagnosed in March 09 and had surgery first of April. Unfortunately, the surgeon couldn't get it all because it had attached to an artery. Guess I will be on the femara for a little over 4 years!! I am scheduled for a PET/CT scan this week (thursday). Hope and pray the rest of the cancer is gone; I do have a lot of faith in God, so I know this will help.
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thanks so much for your response and I know what you mean. My ono said that if they went into get the tumor they couldn't get the whole thing anyway and that concerned him so Femara is the way to go. I went today and told him that I was getting a 2nd opinon and he was fine with that, I was more concerned then he was and he said (which I didn't know) that he is hoping the Femara will shrink the tumor and that the point of treatment this time is to give me something that will work with the lessest side effects which makes sense. I am still in the 14 year ago mode a) cause I have cancer growing in me and they can't get it out and b) that it is 14 years later and there are new things out there that maybe can help. Been on F for 3 weeks no side effects cept for being tired the memory loss is always there.
My thoughts and prayers are with you. Let usknow the results.
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Hello, I have a question for WELGA and GAYNOR because you mentioned you were in Canada.
Do you take the generic Femara or the Brand ???
The cost for me here in the US is so high, (I have a medicare plan for drugs) I will be paying over $300. per month by April or May due to arriving into the so-called doughnut hole; I have several other prescriptions to fill every 3 months and 2 of these are Brand drugs that are not available as a generic.
I wanted to buy the generic Femara from Canada, planned to buy 100 tablets at a time, at a great price, and my doctor would not give me a prescriction if I planned to do that. I told him Canada is not a Third World Country, but he still nixed the idea. I am not sure if the Pharmacy I would chose in Canada would contact the doctor or not but I am thinking of just getting the regular 90 days prescription from him and send it off anyway and see what happens if I decide to start taking this drug, I am still undecided, am just barely 7 weeks post rads, and want to feel better before and/or if I start taking Femara. I have been reading the posts in this thread, and it does sound like lots and lots of side effects are being experienced by most. I salute the ones taking Femara even though they experience all these ugly side effects.Grrrrrr. I hate cancer.
dsgirl
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I went to the Femara web site and I see that they have a coupon you can take to your pharmacy and only pay $10 per month. I printed it out for the next time I have to renew my Rx.
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,,,my onc gave me a card that I could use, so my Rx for Femara will only cost $10. However, with my insurance, I only pay $9.
If I wasn't so worried about this health care reform plan changing my insurance benefits, I would give my Rx card to someone else.
I'll be starting the femara.... tomorrow... I am so scared about these AIs!!
Harley
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dsgirl: I'm Canadian and just wanted to let you know that there is not a generic version of Femara (letrozole) available here, only the brand Femara made by Novartis in Canada. I just picked up my refill today and the cost for 100 tabs was $618.31 (which my supplemental insurance pays for).
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Hi Linda... I didn't think there was a generic, or my dr. would have written the Rx for generic... and generic costs less...
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dsgirl
Hello, well some have actually answered your question, I was going to tell you the same,no generic,
have you found something generic at an online pharmacy. If so maybe it's not the real Femara, here in Quebec we don't use much online pharmacy, there has been a lot of bad publicity about some of them selling false meds. Hope you can find a way to solve this problem,
Welga
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Harley44, I will be starting Femara next week after my first visit with the dr after finishing my rads. I went to their sight and got the med card that says you can it filled for $10 at a time. I am hoping it is still good in 2010. I guess we will be be seeing any se together with this stuff. I expect to get more hot flashes than I already get, but I sure hope not. Mine are now just starting to go down in in strength. I guess I will soon find out. Keep me posted on how you are doing.
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sunnyfornow and Harley44, I also will be starting Femara (tomorrow) and am a little anxious about it. I would be interested in hearing how we all fare and giving/getting support will help us get through it. We can do it!
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dsgirl, I have been getting most of my meds from www.alldaychemist.com. They are an Indian pharmaceutical and their meds are generic versions of our US brands. They are not bound by US patent laws and can manufacture a generic after one year. The manufacturing plants are all FDA inspected and approved, because many of our US generics are also manufactured there. I've used them for the last couple of years and have not had any problems. They do state that you must have a script, but have not asked for mine.
They charge a flat $25 shipping fee, no matter how many meds you order - I have been ordering 6 months worth of 5 different meds at a time. Their version of Femara costs $7.00 for 20 pills. So I can get a two months supply for $21.00.
You might want to check them out. I also get meds for my COPD and gastro problems, and they seem to be just as effective as the brand names.
I hope this helps.
Hugs,
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sunnyfornow and reeltchr
I guess we are starting at the same time...
Chris,
I'm starting Femara tomorrow, too... well, you are right... at least we can post here, and pm each other to see how we are doing... it seems this is another chapter in my treatment...
Happy & Healthy New Year to us all!!!
Harley -
I'm starting Femara in a day or two as well. My onc. wanted me to switch from Tamoxifen in October, but I was really dreading it, so I had my gyn. run the blood tests to see how my hormone levels were - 2 tests a few months apart, def. post-men. now. I'm 51, 2 1/2 years on Tamoxifen - I guess I will have to do it. I am not looking forward to this switch. I was diagnosed with fibromyalgia this past spring, I am very worried about the Femara s/es.
So I'll be joining the 2010 Femara crew.
Caya
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Hello, and thank you all for the replies re canadian mail order/prices.
I found a website (for Canadian and other countries), it is called: pharmacychecker.com. I shows both Femara and the generic version at many of the canadian pharmacies, and I guess I just assumed it was available and made in Canada. Maybe that is why my Onc. said he did not trust the generic from a Canadian Pharmacy, but I wish he had been more specific.
Kdeit: Thanks I will check the one you posted, if and when I start taking Femara. I also have the coupon for $10. for 30 pills from the Femara website, however since I am on a medicare drug plan, it's not acceptable for this coupon. My pharmacist said I could buy the drug outside my medicare drug plan, but the $800. maximum allowed with the coupon would be used up in 2 months, because the regular price for 30 tablets is $436. but at least that makes 1 month where I would only pay $10. for 30 pills, and the second month would be around $62.00 and still a bargain?
Paying a premium price for a drug that is probably going to make me feel like hell, that comes with no guarantees that is will keep the breast cancer away, is a real crappy way of trying to stay away from recurrence. Most of the cancer treatment choices are like that.
Thanks all
dsgirl
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Hi ladies,
I started Femara on June 22nd so it has been 6 months for me. I have aches and pains but with using Tylenol for arthritis has been pretty much under control. I have noticed some short term memory loss but I don't know if it is from the chemo or from the Femara or both. I joined a gym but it is still too soon to tell if it is helping with the stiffness and aches. I'm still not past the muscle pain I have after working out. I have not lost any weight but that too is still too soon especially with the holidays.
I am eating prunes but so far there has been no difference but I will continue.
I do plan to take Femara for 4 1/2 more years even with the aches. It's much better than a recurrence if it works.
Happy New Year to all you beautiful ladies.
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caya,
well, there are a few of us who are starting Femara around the same time, so we can keep each other updated.
ok... What exactly is the benefit we are supposed to get from prunes? I HATE prunes...
dkerler,
Glad to hear that you aren't having too much trouble with Femara. Today is day #3 for me...
I switched after taking Tamoxifen for two years. Just taking it one day at a time, and we'll see how it goes... I guess it's good to know that if I have too much trouble with femara or the other AIs, I could always go back to Tamoxifen to finish the 5 years. I also feel that it's important for me to finish the 5 years of treatment.
Let's keep each other posted on how this phase of treatment is going...
Harley
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Hi Ladies
Sorry I haven't replied earlier but I was on vacation for the Holidays. Before CHristmas I decided to switch back to Femara from Arimidex as I coudln't stand the constipation, I couldn't go (if you get what I mean) for a week at a time even trying laxatives & stool softners so I decided I would rather go with the aches & pains than the uncontrollable constipation. The aches & pains continue in my pelvic area and stomach as well as the usual hands, feet etc. I am thinking about going to see my doctor and get this checked out as I started with horrific pain in my hip/lower back & pelvic area. I went to see a chiroprator as I couldn't get an appointment with my doctor and the chiroprator thought I had displaced my right hip but I'm not so sure as this pain has continued for 3 weeks now, but it's now more in my pelvic area - kind of like menstrual pain except I don't have my ovaries so it can't be that. I hate going to the doctors as I feel like I might be wating their time because most symptons can also be put down to the SEs of Femara.
In answer to somone elses question regarding the cost of Femara - I am lucky that my husband's benefit plan at work pays the majority of the cost, leaving me $15 to pay and they give me 3 months supply at a time. The arimidex was around the same cost (I see the full cost on my receipt and it's scary). I have considered stopping AIs altogether but my onc said I would be playing with fire as that moved would increase the chance of recurrence by 50%.
My hair has never returned to the way it was before chemo, the texture is finer and the overall the amount of hair is less but I was lucky that I had very hick hair before this all began so it isn't noticeable to most people.
Another thing I have noticed is that I get sores around my toes, which I thought was athletes foot but when I switched to Arimidex it disappeared but within days of going back to Femara it came back and no amount of ointment seems to get rid of it totally.
I would love to have my pre cancer life back where I had loads of energy and zest for life but I know that's not going to happen. For anyone new to all this just persevere, there are worse things that can happen. Hopefully, like me, your life will begin to get some normality back, you will not think about cancer every day although you will not ever not think about it - I believe that's just not possible. I have started thinking more for the day than planning too far ahead, I worry every time we organize a vacation that's months ahead but I know that's insane. It does bug me when I see so many commercials on TV talking about life insurance & planning for retirement as I know they won't want to insure me etc but that's life for you I guess.
Keep your chins up girls, there are worse situations in life, and we are the lucky ones that survived to tell the tale!
HAPPY NEW YEAR, HEALTH, WEALTH & HAPPINESS TO ALL
GAynor
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I'm actually on Aromasin and have the usual aches and pains (but nothing unmanageable.) But, what I was wondering is what do you ladies do for the fatigue we experience on these A.I.s? Does anyone have any suggestions? Also, I'm wondering howmuch Vit D I should be taking. I take 600 of D3 with my calcium, but I don't know how much is recommended. Any info there? My onc won't get my D levels tested (I asked,but I'll ask again.) Thanks, Debs
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debisongbird
You need to get that vitamin D test done first, to see where your levels are right now.
Some drs. Rx 50,000 IUs if your D levels are very low. But mine were in the low normal range. My drs. didn't prescribe any d... so I have been taking 6000 IUs a day for the past few days. Just getting started so I guess I'll see whether it helps or not.
Harley
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Hi Ladies
I wasn't given a Vitamin D test, wasn't told there was one come to think of it. My onc told 1000 iu per day with around 2000 iu Calcium Caltrate as apparently that absorbs better.
Fatigue - I'm not sure about that one. I haven't really suffered from that one because the Femara does not let me sleep, I have been taking a nightly sleep aid for as long as I've been getting treatment as I cannot sleep day or night without it. I do know I am beat by the time I get home from work though. If I'm tired at when I'm not at work during the day I try to have a nap but as soon as I lay down I'm wide awake again, which is a pain. I believe that by getting a full nights sleep with the med I take it helps combat any fatigue during the day.
Any of you other girls having problems with the constipation thing? Hip/pelvic problems? The pain is in my lower back around my right hip, and the front of my hip bone hurts - more when I sit down than if I stand or walk? I continue to have theusual aches & pains all over but I guess I'm just getting used to that being there.
Well it's another full day at work. TGIF tomorrow.
Love & Best Wishes
Gaynor
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Hi Gaynor....It's nice to read your posts again. It's been a long time since I've spent any time on these boards. Been very busy and traveled in Europe most of Oct. and the holidays seemed to never end. I haven't had any problem in the garbage elimination area. I've had the problem long ago but I forced myself to eat Total w/pomegranate and yogurt and no problaymo. Try it. Say Gaynor, can you explain the "mets" that you have indicated in your Diagnosis line/ I don't remember that. Maybe it's the memory loss.....hey I think I may have found a Femara s/e. Or it's from chemo. Simply fried my brains I think. It's good to hear your doing well. I'm going to Arizona in Feb. to visit friends and the day after I get back I have my check up and Mamo. Then I'll get nervous again. i'm OK for the three month and then I get rattled the day I get the big squeeze. I think that will continue forever.
Take care all and may you get rid of the nasty s/es.
hugs,Artsee
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Nancynowak Congrats on completing the 5 years on femara. I have a question about weight gain--I have gained weight but only in my stomach!! Did your stomach get bigger; and if it did, has it gone away any? Have been on femara since July 2009 and I look about 6 or 7 month's pregnant. My clothes size has already gone up one full size. I can't afford to get much bigger in the stomach because I am only 4' 11 1/2" . Any bigger and I will have to do major alterations on the slacks! I don't sleep at all at night and my legs bother me but it just feels more like nerves because they don't hurt.
Anyone who has had stomach weight "growth" please let me know how bad yours is.
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NancyNowak,
Hey Congratulations on finishing Femara! I can't wait til I'm done with these hormonal drugs!!
I took Tamoxifen for 2 years, and have just started Femara about a week ago...Yikes, on the leg pain... don't know what that could be... maybe this will get better the longer you are off the Femara...
Hugs to allHarley
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Hi,
while I am able to manage most of the femara se's (still working on the vaginal dryness!) I do find that emotionally I am just very "neutral".... I don't get too worked up about anything--- this is not necessarily a bad thing, but it is very strange-it definitely works for me at work, lol--- but I also seem to have a sort of "fuzziness" that only I seem to notice--others in my life don't see it--but I don't feel as "sharp" as I have felt in the past... does this sound familiar to anyone?
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I have the belly fat, too. I've never been skinny, but my weight was always in the hip and butt area. Having belly fat makes going foobless a problem because I look too fat without something to offset it. I have gained 20 lbs since I started chemo, 10 of which were after I started the Femara. I think the first 10 were from the steroids. I want to eat all the time - even when I know I don't physically need to eat. I hate it!
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...I have noticed that I seem to be very hungry, too, since starting Femara... this is NOT a good thing... I have tried to increase my exercise, but it is so cold outside, it is very hard to stay motivated...
Harley
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I also have the belly fat. I am over weight a was just wondering if anyone lost weight while on femara. I try to diet and just cant loose the weight.
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Took a "vacation" from Femara and 4 days later my depression symtoms got much less. Started to feel much more energetic - a bit like my old self. The pains and aches I could handle - the anxiety, extreme fatigue, sleeplessness finally got to me. Had no interest in the things I liked doing. What a way to live! I did decide to take the 150 mg actonel for osteoporosis. Took it last Friday; Saturday had IBS symptoms and hip pain. During the night I got achy shoulders and arms and thumb. Don't feel a whole lot better today. I'd like to hear your experience with Actonel. This is my second experience with BC. Stage I ER neg in 2008; Stage I, ER Pos April 2009. No lymph involvement.
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Caroleb How many days Femara vacation are you taking? Did your onc approve it?
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nanna,
Two weeks vacation. I called my onc and told her I stopped and she said some stop for 2 weeks. I had two bad depressions in my life - both around hormones so I need to know if my symptoms of anxiety, sleeplessness, fatigue are hormonally caused. I see the onc on 2/4 so plan to take one every other day until we discuss. Also, no one has said anything about my their experience with Actonel. Hope this answers your question.
Carole
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Hello to all my femara friends. Had an appt. today with my family doctor and he had a copy of my PET/CT scan I had done a couple weeks ago (haven't seen my onc. yet). The lymph node under my arm where the cancer was --is significantly smaller!!! Thank femara and the Lord above!! Whoever it is who reads the scans recommended a nuclear bone scan- so this is scheduled for Jan. 19. I hope and pray the results from it are as good as the PET scan. Y'all keep your fingers crossed and pray for me.
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Thanks a million, Harley
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Ok...Im coming out of hiding....
I have been reading this thread with much anticipation. I will be starting Femara in 3-4 weeks after my surgery.
Long story short, after 18 months on Tamox I tested as a poor metabolizer on (cyp2d6) so my onc has switched me to Femara.
Why do I have this feeling that this will be my new home?..lol.
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I'll be praying for you when you get your new scans, Jan 19th... praying for GOOD results!!
lexislove,
I know that you will also be just fine... and you'll do great on Femara. I've been taking it now for 2 weeks, and I'm doing pretty good... I am just trying to eat the right foods, exercise, and taking extra supplements to try to ward off any se's... I'm taking MORE vitamin D3, calcium, etc...
Good luck to us all!!!
Harley
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Thank you Harley,
Ive been in a workout funk the last 7 days....got to get out of it. Must be all the rain we are having....
I went to the drug store and stocked up on Vitamin D3, Calcium, and Clucosamine if need be. I think Im ready to go!!!!!
Just need the Femara perscription. I will be checking back in when I start.
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Hi ladies! I would like to join you all as I will start taking Femara tomorrow. I was wondering about when to take it - morning or night? I plan on taking it with food as I have a sensitive tummy. I used to take tamox. at dinner. Do you think that would be good for Femara too? I am hoping and praying the SE won't be too bad - at least not as bad as tamox was for me. I already have some of the SE that were listed on the pharmcy print out so it may be hard to tell if I am having any! For those who are having SE when did you start to notice something was going on?
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caroleb: I've been taking 35 mg Actonel once a week for the past several months, with no side effects. Perhaps your 150 mg dose is too much at one time?
Linda
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lexislove,
I stocked up on stool softeners before I started chemo...and wouldn't you know it? I had DIARRHEA... not constipation...
go figure... but I think it is a good idea to get stocked up on the supplements you will need before starting Femara.cookiesmom,
I took Tamoxifen at bedtime, so I continue to take Femara at bedtime, too... I haven't noticed much in the way of se's... of course, I still get hot flashes in the evening, and I have some stiffness... but I had that with Tamoxifen, too.... it has only been 2 weeks, so we shall see...
good luck to all of us!!
Harley
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Kookiesmom: I started Femara in mid-Nov. I take it in the morning. My most annoying SE are occasional hotflashes-these started relatively quickly after I started the pill. I have some joint pain, etc. but livable. I take it in the AM because my thought process was it will have a chance to work all around my system while I'm up and moving & then at night, I won't get so stiff in the morning because it didn't "pool" while sleeping. For me, that seems to be working. But you know, who really knows? Joni
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Hi, everyone,
I have been reading some of the posts. I will start Femara tonight, so I will be joining this forum. When I went throught menopause, I had very few problems. I wonder if that will transfer to Femara?
Pat
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Harley44 - hello (and to all the ladies) Well, it's day 16 on Femara. Doing well. It seems as though you are also doing well -- way to go! Applying the same regimen that you are in trying to eat right, exercise and taking supplements in hope of combatting SE's. I was wondering--how much of the calcium and vit D are you taking? I've read that people take quite a bit and maybe I need to re-think that one. I am due for a bone density test in Apr. Being on Femara, my onco wants to stay on top of it. We will see what happens. Can't worry about it now---Apr is too far away. Hope everyone is doing as well as can be and a Happy and Healthier New Year!
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lindasa - Just noticed the pic of your kitties and I just have to say they are adorable. I have 2 as well--both BluePoint Siamese. They are my best pals!
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Hi Lois: Thanks for the comps about my furballs (Toffee, a champagne burmese, and Abby, an Abyssinian). Until these two, we always had Siamese, one of which was a bluepoint!
As for calcium -- I take Calcium (333mg) Magnesium (167mg) Vit.D3 (133 IU) all rolled into one caplet by Webber Naturals, 3 times a day. Also take 1 1,000 IU Vitamin D3, along with other supplements.
To combat Femara aches and pains, I tried Glucosamine&Chondroitin -- didn't help a bit. So I switched to Webber Naturals Omega-3 (900mg) and that seemed to do the trick.
Harley: Good to hear you're still S/E free!
Hugs to all.....Linda
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reeltchr,
thanks...
I take Citracal, and it's 630 mg of Calcium and 400 IUs of vitamin D... I take this 3 x day...
plus, I take 2000 IUs of vitamin D 3 x day... I read where you can take up to 10,000 IUs of vitamin D daily if your vitamin D levels are in the low range... mine were NORMAL, but LOW NORMAL... I'll ask my dr. to check the levels again when I go back. He may not want to do it since I had 'normal' levels back in Oct.... my primary care dr. doesn't really keep up with this stuff... so I may have to wait til June to get my onc. to retest...
lindasa
I'm experiencing some stiffness, but nothing too bad.
Hope everyone is doing good...Hugs
Harley
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Thanks to all of you for the suggestions about vitamins. I've always been a vitamin taker. Where can I find out information on what to take? I already take 1000mg fish oil and a multi vitamin that contains a pretty good dose of D and E.
I am so grateful to all of you
Pat
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yea so love good news, especially where Femera shrinking things is!!
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I take it at night cause it makes me go to sleep!!
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I took my 1st pill lst night at dinner. I didn't sleep well but but I blame that on the dumb cat screaming all night. At least it was from that and not the pill! Is anyone having weight gain from Femara? I need to get back to walking everyday if that is happening.
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kookiesmom
I have some bad news for you... Femara is making me VERY HUNGRY, much like the steroids did, when I was getting chemo... so FYI... I think it will cause weight gain. I've started to try to adjust my eating and I'm trying to go out and exercise most every day...
I have had a few nights when I couldn't sleep very well... but overall, I think I'm sleeping better. I have been having weird dreams, though... I have been taking melatonin, and I think it was causing weird dreams, but maybe the Femara is making my dreams even weirder....
It's day #17 for me...
Harley
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Pattyfish--I see that you have just started Femera too. I started on the 1st and things are going well. Hope all goes well with you too. Keep us posted on your progress; there are a few of us who just recently started and we can support one another through this journey. Havea good one.
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Has anyone tried drinking the Elations for glucosamine and chondroitin? I have been on Femara a few months now and am understanding when people say it makes you stiff and your joints ache. I sit at a desk at my job even though I do get up and move around a lot but I may be at work 10 hours a day right now. When I get home it is heating pad time for my back and sometimes my knees do not feel great because I have a tendency to cross my legs all day. I was taking the glucosamine/chondroitin supplements but I was forgetting because of having to work in it around the Femara, Calcium and vitamin D. I thought drinking the Elations might be a more pleasant and easier to remember way of doing it. Anyone heard anything good or bad? I definitely feel better when moving so as soon as things calm down at work it is back to the gym for me. As for the question earlier about Actonel, I had to start on Boniva last month and I had major stomach issues and legs pains that felt like I did when I was on chemo. They lasted only a few days but I am definitely hoping next month is better. If it is not I will ask to switch to something else. I'm only 37 but I joke to all my girlfriends that I am going to start asking for a senior citizen discount and join a red hat society because of all my aches and pains and meds. Gotta love BC.
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Harley44 - Day #17 for me too. I have some difficulty sleeping at times as well, but, this has been a problem for me before Femara so I don't think I can place blame on it (unless it gets worse!) Hungry...hmmm. There are times when I feel a bit more hungry. Other times are normal. If weight gain is a SE of Femara I can afford a couple of pounds but not too much. Other health issues come into play for me, so I will keep a close eye on it. Rev up the walking and Pilates.
Chris
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reeltchr
I am now finding that I feel stiff, and achy in the morning, and the evening too... I have been going out and exercising during the day when I can... only days when I work I can't... and I have to stand all day, which doesn't help me any... I am not sure how well I can deal with this achiness....
nene2059,
I also feel like I'm 80 years old!! I don't know how long I can take this achy... and it's only been 17 days!!
Good luck to us...
Hugs
Harley
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Day 14 for me, I'm feeling pretty good. I take the pill about an hour before I go to bed, I am using the fatigue issue to my advantage as I have not slept well for a few years now.
Some stiffness, but I have fibromyalgia so not anything new for me. I try to stretch and walk as much as I can. Another tip - taking warm baths with epsom salts may help. The magnesium in the salts is absorbed right into your skin, bones, muscles etc., and I find it really is soothing. Try to soak in the bath with the salts for 15 minutes at least 3x/week.
If this is as bad as it gets, I will be okay.
Good luck Femara 2010 girls.
xo
Caya
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Question-I have been taking the Femara in the AM as I posted just a little while ago, but I am having fatigue issues in the mornings. Those of you taking Femara at night, how is your fatigue during the day? Are you taking any sleep aids besides your Femara at night?
Joni
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Joni,
I take Imovane, 5mg. at night, have been for years - but I have found since starting the Femara I have been able to sleep longer most nights. If I get a solid 7 hours (or more if I am lucky), then I am fine during the day, a bit tired, but okay. I am hoping to cut back on the Imovane (taking 1/2 of the 7.5 mg. pill) in a few weeks, and see how it goes.
Insomnia/bad sleeps are a s/e of fibromyalgia, so who knows with me? As for hot flashes, they were so bad when I started Tamoxifen in July 2007, my onc. advised me to take Effexor (which also helped with anxiety issues I was having...) I take a 75 mg. pill in the a.m. - my hot flashes and night sweats vanished practically overnight. I have heard it's hard to wean off Effexor, but quite frankly I have no intention of going off it - definitely not while I am on Femara.
Caya
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Harley44:
Sorry to hear about your stiffness and achiness. Having to stand all day (while working) is not good. Hopefully, with time, it will subside some and be more bearable. Keep up the exercise, it could only help. Caya's tip about warm baths w/epsom salts sounds relaxing. I think I will try that myself. Take care.
Chris
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Thanks Caya,
I'm thinking about trying to switch over to taking it at night time this weekend and see if there's a difference in the daytime.
Joni
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Joni
I also take Femara at night... as I was taking Tamoxifen at night and haven't had any problems with it. On and off, I've been having trouble sleeping but it might just be stress issues I'm dealing with right now.
reeltchr,
Sorry, I guess I was having a bad day, and thinking about working on Monday got me all spun up. I think I was maybe overdoing the exercise, just a tad... so Sunday night, before bed, I also took 3 Ibuprofen, and they really helped my aches... I felt better in the morning! I will go out for a run today though...
Caya,
I'll try to remember about the epsom salts... didn't know that about the magnesium... it is absorbed through the skin, you say?? I have a friend who sees a naturopath. She isn't a bc survivor... anyway... he told her to take a 1 hr. bath in epsom salts EVERY DAY, and afterward, she takes a shower... maybe to rinse off the epsom salts? I don't understand that one...
Good luck to us all...
Hugs
Harley
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Harley - Soo glad to hear that you are feeling better. I think in our mind-frames we tend to want to make sure we cover all the angles and, as such, overdoing is easily accomplished. You're a runner -- that's great. Do you do any other type of exercise as well? I like to walk and Pilates is my saving grace. Have a great day!
Chris
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Chris,
I walk also, but I want to increase my distance, and it seems to just take me FOREVER to finish, when I walk... even though, I think I walk faster than I run... go figure...
I also workout on the elliptical torture machine, when it's too cold to go outside, or rainy... I used to do yoga, and may start again.
I'm glad that I figured out why I was feeling so achey... I was starting to get worried... You are right. Our minds can go to some pretty dark places sometimes....
Harley
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Hi, reeltchr,
I'm a wastchr--retired in June. I guess bc is part of my retirement package
So far, I have just been having mild fatigue. I'll keep everyone posted. Thanks for the kind words. Pat
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Hi Ladies,
Been on Femara for 2 months now. SE's kicked in about 2 weeks into it. My feet bother me most, my heels and toes. Also getting to my hands, especially my one thumb! I'm very tired but I just had my second reconstruction surgery a month ago, so I think that may be some of that. My hot flashes seem to have gotten worse since surgery, especially night sweats, maybe cuz I can't do aerobics yet.( they did seem better when I was able to do aerobics before surgery). I can tell you that I had to go off of Femara 4 days before surgery and stay off for 4 days after(clotting issues, I guess) and I felt a lot better! I think it has also delayed healing, as I'm still seeping! Also, the vaginal dryness is awful! I use replens every 3 days and it is still awful! I'm only 44 but feel much, much older.
As far as the glucosamine/chond combo, my onc said not to take it yet as there is some controversy with it. She didn't elaborate but I plan on bringing it up again when I see her next month.
I know other ladies that don't have issues but unfortunalely I'm one that does. good luck to the rest of you. Take care.
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Uh oh I have been taking the glucosamine/chond because I did not know of any issue with it and Femara.....if anyone knows of anything can you elaborate? This is all so confusing. We all need to be doctors or pharmacists to take all of these meds and then the meds for the side effects from the other meds. I agree with you on the feeling older, I am 37 and this vaginal dryness, joint pain stuff sucks. I have done so well on the hot flash front that I was hoping I would sail through the other se's of surgical meno and then the extra kick of Femara. Ugh.
Best wishes to all.
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KAC - I was glad to see you mentioned having to go off Femara for surgery. I was thinking I would go off anyway before another surgery as I had a bloodclot when I was on Tamoxifen and don't want to go through that again. I have been on Femara since Saturday - so just 4 days and no changes to report. I remember tamox. took awhile but I am still hoping for the best!
Harley - I was thinking about taking up yoga too. I have never done it before but it interests me.
Anybody know if it is ok to take Omega3 with Fishoil pills? I started it today and now I am hoping it is OK to take with Femara. Are there drugs that inhibit Femar's effectiveness like tamoxifen had? I remember benedryl was a no-no on tamox but can I take it now?
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I would be interested in hearing about the controversy regarding glucosamine/chondroitin. I have been taking that for some time now--before the Femara. My onco knows I take it and didn't make any remarks about it. If anyone hears or learns anything about it, please let us know. Have a good one ladies.
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I was told by onc that Fish Oil is OK on Femara, but Flaxseed oil capsules aren't.
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My onc. did not give me any no-no's regarding taking viatmins/supplements with Femara. I will ask him again when I see him in mid-March.
I don't take a shower after my bath with epsom salts - and I think a one hour bath EVERY DAY is stretching it. I remember reading that you should soak for about 15 - 20 minutes for the salts to be effective, but hey, if you want to soak longer, I'm sure it's okay.
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Joni,
I would think that Fish oil should be ok with Femara... so flax seed is a no no? I just bought this pasta that has flax seed in it... I didn't want to get it, but my dh thought it might be a good alternative. I guess I won't buy any more of it...
kookiesmom,
I took yoga many years ago. But... I try to do the poses correctly, because the class I took, the instructor was very strict about holding the poses just right... and I get very sore when I stand as straight and tall, and hold the poses... maybe I should just do gentle stretches, and not be so concerned with getting the poses just right... when I get sore, then I don't want to do yoga as much and I wind up quitting...
Caya,
My friend is kind of funny about doing things exactly the way her dr tells her to do them... she may still be doing the meditation exercises. Once when I called to talk to her, her dh answered the phone. He said " Irene is meditating." I think she was also doing the meditation for ONE hour...
Hugs
Harley
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Hello all, I've been having pretty bad pain with the Femara (been taking it for 2mos now). Onc. told me to stop it today, going to start Arimidex in a couple weeks... I may be back on Femara, depending on how it goes. (I've tried Aromasin too...can't take that one either).
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Jessica
Sorry you are having so much trouble with these AIs... maybe you could try Tamoxifen?? I took it for 2 years, but my onc's plan was for me to switch to an AI after two years, so here I am... I keep telling myself that if I have too much trouble with Femara, I can always switch back to Tamoxifen... I just don't know if I can take these AIs for THREE years! YIKES! I'm just taking it one day at a time... that is what I did with Tamoxifen, and I didn't think I could do TWO years on that, either!!
Good luck to you!
Harley
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Thanks Harley, I may have to go that route... time will tell. All of these anti-estrogens scare me too!!
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Why don't people understand that these AIs have SEs? I get the oddest comments and looks when I complain about the pain, swelling, etc. from Femara.
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Ladies,
I know that plenty of ladies take the glucosamine, that's why I asked my onc about it. I will definitely find out more info when I see her next month as to what the problem is. I'm wondering too if she wanted to see what kind of SE's I had first. Who knows?
Here's another one, my DH had to go to onc's office the other day(long story) and she also told him when I go in next month that she needs to check my liver enzymes. I knew she was doing bloodwork for tumor markers and cbc but neither one of us remembers her saying anything about the liver. I suppose that Femara can cause havoc with that as well! It really is amazing how we find this out as we go.
Jane, I'm with you, people just don't understand but I make it a point to tell them now. I'm so tired of them thinking that it's no big deal! It's funny, people understand about the chemo thing but not about these other drugs we take. What's the saying "walk a mile in my shoes".
Anyway, anyone having any other insights to what we can and can't take while on Femara, pass it on. Have a great day.
Take care,
Kelley
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I agree with you, girls...
People think that you just take a pill every day, so what's the big deal?? I guess if they had to change places with us, maybe then they would understand...
Hugs
Harley
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Hi all, I am new
I just read through the posts, and thank you all for being so supportive. Reading these posts makes me feel less alone.
I have a question RE: FEMARA
Do any of you get SEVERE bloating? espeically after a meal? I've been extremely gasy and bloated after meals. Been on FEMERA for 4 months.
My biggest concern is COLON cancer. I just had a Colonoscopy, and the docs took some tissue for biopsy.
Now i am just worry sick, I was just diagnoised w/ breast cancer last Aug, and had mascetomy
Please help.
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Twinkleing... please try not to worry too much. I found that my body changed after the mastectomy so that I felt like I was wearing a barrel. Yes there is more gas and bloating.... I dont know if it is the Femara but I find myself cringing from gas pains especially before any kind of movement.
I sincerely hope that your biopsy is clear.... dont they always take tissue... sorta to make sure it was worth all the medical drama to have it (LOL).
I DO NOT WANT TO SEE YOUR NAME in the Stage 4 forum unless it is to say... Whew, dodged a bullet. And you can say that right here.... k?
If there is anything you need support for, PM me, I will hold your cyber hand. As would a few hundred other ladies here.
((((((((((twinkleing))))))))))
edited to correct a typing error and to add hugs
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Hi All
I have been on Femara since June 08 been very stiff and achy untill last August I started Zometa 2xyear and daily calcium1000 vitamin D3 1000. Most of the pains are gone my mobility is a lot better too.
HH
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Hi everyone. Just a quick summary. Was diagnosed in 2001 with ER+ stage 1, which was quite aggressive, but no lymph node involvement. Had chemo, mastectomy and tram flap recon. Was on Tamoxifen for a little over a year and had a recurrence in the same side under the chest wall. They decided to put me on Femara, but I was not postmenapausal, so had to endure Lupron shots in the butt for 2 years to put me there. Started Femara in 2004 and passed the 5 year mark in July. Have been having hot flashes for 8 years, trouble sleeping, etc. The joint pain in the last couple of years has been awful. Also, coughing, headaches, stomach discomfort, dizziness, etc. Would you believe that the doctors have diagnosed me with systemic Lupus, which I still think is totally wrong. No-one out there wants to believe that this drug causes all these problems. On top of that, the oncologist is not sure if there is a benefit to keeping me on the drug or not as I had a second occurrence and the course of treatment is not the same. We are waiting for the latest "study" before she decides to remove me from it. I can only hope that when I finally come off it, all my other problems will disappear. Is there anyone else out there that has been on it this long and had all these symptoms? I just want to be taken seriously. I am on Plaquinil for the joint pain and Prednisone, which is a steriod and we all know how bad they are. Any suggestions?? I too take a lot of hot soaks to ease the pain. Thanks girls.
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Twinkleling,
Welcome to this group... I haven't heard about a link between Femara and colon cancer, but... my surgeon told me and I read on bc.org that there is a link between having had bc and colon cancer. My surgeon even did a colonoscopy at my 1 yr. follow up, but it's just a general routine test. I'll be thinking about you, and praying for benign results....
(((HUGS)))
Hi Dreamwriter,
Haven't seen you for awhile... good to see you!
Holly....
Hello and Welcome! Sorry you are having such a tough time with Femara. You've been through so much already!!
sorry, but I don't know what the protocol is for women who have had a recurrence while on Tamoxifen. I just assumed that they would switch you to a different drug, but you wouldn't continue with Tamoxifen, since that drug didn't work for you.
Sending HUGS to you! Please post and let us know how you are doing.
Harley
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I was only on Tamoxifen with the first occurrence. I have now passed the 5 years on Femara. Even the oncologist doesn't know what the protocol is yet. She's waiting for the next "study" to be over. So, in the meantime, I'm now on Femara for 5 1/2 years!! Just want someone to believe that all this is not only associated with this drug, but not pin it on another diagnosis like Lupus. I guess the quality of life isn't as important to them as curing us.
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Hi Twinking
I too have severe bloating after meals, and I get pelvic pain too. I'm seeing my family doctor next week for my annual physical so I'll ask her. I tried switching to arimidex because of the aches and pains but that made the already bad constipation problems worse so I switched back to Femara, Ill tell the onc when I see her next month. Luckily for me the aches have subsided in feet, hands etc so maybe that was more the combination of Herceptin with Femara/Arimidex, they seemed to have gotten better since I finished Herceptin last October and I guess it took a few months to get out of my system.
I was told by my onc not to take anything with Flax seed in it as it contains plant hormones - and we all know we are suppposed to now have hormone free bodies - uugghhh!!! I haven't found any reduction in the hot flashes, luckily for me I take a sleeping pill every night so at last I usually get a good nights sleep which definitely helps (BIG TIME). I also find that stress (large or small) seems to bring on the aches and pains, so I try to stay as stress free as possible, but that's not always so easy - teenage son, full time "stressful" job ...... you know how it goes.
Big hugs to everyone, take care
Gaynor
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Hi Kelley: Weird you should mention something about the liver enzymes as every time I get my bloodwork done at the onc., they always mention that my liver enzymes are elevated. It's been that way for the past 5 years or so. They do a CAT scan and never find anything, just a small spot, but it never changes. I've given up on worrying about that one. And the rest who are having the vaginal dryness, etc., the gyno put me on Vagifem, which has the smallest amount of estrogen and is a pill that is inserted and cannot travel outside the vaginal wall, so no worry of estrogen getting to the rest of the body. I'm a very happy camper since! At least sex can be fun again!!
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Gaynor
Flax seed is a phytoestrogen, I think.
...Now I'm getting worried about liver enzymes! Geez, why is it always SOMETHING???
Harley
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Because with this disease it IS always something
I have also been on Femara for 18 months after tamoxifen stopped working - the barrel-shape and the bloating - oh yes Fidelia
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I have kind of strange question - does anyone else feel like they are going to get their period on Femara? I had my last period in October and was supposed to start Lupron shots in December but my bloodwork said I was now in menopause so they skipped the shot (after much deliberation) and had me start the F-pill. I am not sure about this menopause as I really feel like my friend is coming. I wonder what happens if it does arrive. Does it mean that it isn't working?
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I've been on femara for nearly three years and I am beginning to have some serious problems. Arthritic flares, problems with major joints, like my hip. A few weeks ago I had pain in my wrist joint that was so bad I couldn't use my hand at all...which is a big problem for me because almost everything I do involves working with my hands.Every night the pain starts to kick in after midnight and often wakes me up very early in the morning disturbing my sleep. Aspirin doesn't touch it. The only thing that helps is to get up and start moving around.After a bad arthritic flare last fall (stiffness and achiness all over, fever) I went too see my regular doctor, who wanted me to discuss a change in medication with my oncologist. My oncologist actually suggested that I might want to stop taking Femara or any kind of hormone therapy...I was really frightened at this idea. We had ruled out tamoxifen because it is contraindicated with other medication I am taking. I am also terrified of taking any other form of synthetic estrogen since I feel that my cancer was the result of being exposed to other synethnic estrogens like DES and HRT. She suggested taking one aspirin every night because of the way it works as an anti-inflammatory. This actually worked quite well--for a while--but now things are bad again.According to latest bone density test, I am at high risk for a major bone break. I am actually at higher risk than most women my age because I am very active physically--running, skiing, biking, working outside--and seem to end up in the ER once or twice a year with some kind of minor traumatic injury.So I am wondering what to do. I'd love to get off Femara, but can I live with the anxiety about a recurrence?
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BoPeep -- I'm wondering if you should actually be consulting a rheumatologist? S/he would be able to prescribe suitable medication to control your pain, and would also likely put you on medication to help keep away your impending osteoporosis. There are also several OTC supplements that some of us use to keep our joints fluid and moving, such as Omega 3 fish oil (that is what has relieved my joint pain). Someone suggested bathing in epsom salts every day -- there are all sorts of things you could try -- just read through some of the threads here.
But before going off Femara, do try to see a rheumatologist. Wishing you well....
Linda
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Hi Ladies,
So glad to be back from my trip up north, BRRRR! Holly, I'll ask my Dr. about that Vagifem but doubt she'll let me use it. She was totally against anything that had estrogen it in, but it's worth a try. Thanks
Went back to work today, been off since my exchange surgery, and worked 4 hours. Was on my feet most of the time and they are hurting like before. It's hard to believe such a small pill causes so much grief for us. Hoping to start aerobics next week and that it will help again. My wrists are hurting and my right thumb as well. I think I'm going to go take some tylenol and take a snooze. Hope everyone has a peaceful night.
Kelley
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Hi ladies,
I have been on Femara since June 22nd. This week I've developed a trigger finger of the middle finger on one hand. The fun just never stops does it? In the morning I try not to close the finger and usually in an hour it goes away. Has anyone else had this problem?
Debbie
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I have a trigger finger on my right middle finger. I cannot figure out how this itty-bitty pill can cause so much havoc on my body.
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Hi Debbie: Yes! first the left hand finger, then 2 months later the right hand finger. Then about 6 months after that, the left index finger! I could tell (after the first one) when it was going to happen because the finger felt very stiff and achy for a couple of weeks. However, like you I don't have problems with it after the first stiffness in the a.m.
Linda
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Isn't this fun?!?! Other than being in constant pain, the thing that frustrates me the most is that other people (including family), just don't seem to get it. They look at me as if I'm nuts because I take the ramp instead of the stairs to come into my office building (foot drop). Apparently, people who drive sports cars aren't supposed to have handicapped permits, either.
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Jane, these are probably the same people who get terribly frustrated when they're in line at the supermarket behind someone with severe arthritis who has difficulty getting the change out of her wallet and holds everyone up
. We have very little patience with those with infirmities, until we begin to experience it ourselves, unfortunately.The s/e's of Femara frequently mimic those of osteoarthritis (in those patients who would likely get arthritis as they age) and I'm wondering why these patients aren't referred to a rheumatologist for pain control or exercises. At least rheumatologists have both the empathy and the understanding of the pain processes, whereas oncs are often at a loss with these kinds of s/e's.
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I saw my onc on Thursday and he told me to take one Tylenol Arthritis every morning like I would a vitamin. I get stiff when I uncross my legs after sitting for a while and I walk like I am in pain until the walking has loosened everything up. I try to play it off by getting up and walking fast until the stiffness is gone. I got to start taking my little piece of heaven, wonder pill by being put into menopause by surgery. I am 37 now and was diagnosed a year ago today. I tease my husband that he is going to have to get a hover round and that I am going to join a red hats society because I am having ailments well beyond my chronological age. I found out after a glamorous year of chemo, bilateral mx, hysterectomy (poor Tamox metab.), recon, and now Femara that I have severe Osteopenia in all parameters and Osteoporosis in my lumbar spine. I have taken one dose of Boniva and Monday I start on a twice a year Zometa infusion. Is anyone else using this (these) for osteo with the Femara? I feel like I could give my 87 year old (41 year BC survivor) grandmother a run for her money on ailments and meds. I don't think she is on this many things. She had that take everything off mastectomy surgery in 1968 and that was it. I would guess at this point she will die of something else. Should give us all hope that this beast can be beat I guess. Anyway back to my actual question......any fellow Boniva/Zometa users out there and if so any se's I should be prepared fpr? Thanks ladies!!!
edited for a forgotten word..oops
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Hello all my femara friends!! Boy, do I ever see myself in so many of these recent posts. I have only been on femara since July 09 (app 6 months) and in November I broke a rib (simple fall in the bathroom onto the side of the tub where I should only have been sore). The first part of this month I think I either bruised a rib or had a hairline fracture-different rib but same side. Had a PET/CT scan in December. Have not seen my onc. since the results but did see my family doctor on a routine check-up. He told me some of the results--best was significant reduction of the cancer. Also, a nuclear bone scan was recommended-which I had last week. Now I have an appt with onc. Thurs of this week. Depending on the results of that bone scan, I may be screaming and yelling in the dr's office; because I just don't know if I can continue on femara if it is affecting my bones the way my "simple" mind is thinking it does. Six months on this stuff and these bones acting like they are now!! What is it gonna be in 2 or 3 years?
Now, to get to some of the other side effects. At least, I think they are. Starting Saturday night I started feeling super weak (absolutely could not have fought off a butterfly!!) and until this morning I felt this way. Today I am feeling better--the butterfly, I could win against today. HA My daughter seems to think all this may have been caused by a change in my nerve medication. Good ole Medicaid will not pay for effexor anymore; so I was switched to zoloft 50--effexor was XR 150. Anyone know anything about these things?
Like so many of you, I don't think people even think you are sick at all. That little pill takes care of everything!! WRONGO BABY!! It might be helping choke a cancer and I wish so much that was ALL it would do. At lease once a week or more, there is a new pain. May only last a day or two but you still have to put up with it until it is gone.
What hurts me the most out of all of this is the fact that I have always been so independent. Took care of everything myself--did not need to ask for help at all. I am 63 and up until this crap started was a very young 63.
I have a question if anyone could answer, would really appreciate. Can you get a handicap sticker for your car if you are suffering from these side effects of femara?
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Kelley: The gyno was sure the onc wouldn't want me to use it either, so she advised me not to tell her. She said the risk was practically nill and the dose so low. She just wanted to improve the quality of life for me. I've been on it for over a year and everthing has been fine. I too see myself in so many of these posts and am so tired of people thinking I'm imagining all the side affects. At least we all know the score and can support each other. As I said, I'm on Femara for 5 1/2 years now. I see a lot of you are talking about bone loss. The really strange thing is I just had a bone density test by the rheumatologist (and yes he does think your pain is real) and he said I had the bone density of a 25 year old! How strange is that? I'm 49 by the way. So it hasn't affected my bones. In fact, I have stenosis of the spine, which is an "overgrowth" of bone. The rheumatologist still treats me like a Lupus patient, but we all know better. Would love to hear from someone who was on it for the duration and all the pain went away after. At least you would know there's a light at the end of the tunnel. As I type this, my wrist and fingers are throbbing and I work in a law office, so I am always on the computer. I am going to keep looking for that study to be published on recurrence patients and the use of Femara and hope for the best. Will try the aspirin too. I've been using Advil PM just to sleep, but I don't want to wake up!
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I have a temporary (1 year) handicap sticker from my onc due to the neuropathy and foot drop. I explained to him that the parking lot for my office building is about 4 football fields from my office and I work on the 4th floor. I also get short of breath very easily since rads as well.
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gauleyeagle,
Your weakness could definitely be attributed to the change to Zoloft. Can you not appeal a Medicaid decision? I don't know anything about Medicaid but anytime my insurance won't cover something my doctor or I appeal it and so far we have won. I don't know if Medicaid is like that and I think you will just as happy with Zoloft. Just a thought for the future though....
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gauleyeagle... I am newly diagnosed and was browsing this thread since I will most likely be taking hormone therapy at minimum. I noticed your comment about not being able to take Effexor XR any longer. I can't imagine how terrible you must have felt not being able to take it. My goodness! If I miss more than 2 days of my medication, I am terribly sick...nauseated, dizzy and can't function. I am 61, so very near your age. I had a bilateral mx on Jan. 5th. I'm waiting until I receive my OncoType score to learn exactly what my treatment will be. Just wanted to tell you that I hope you are feeling better. This is a wonderful place to find just what you need from friends you haven't even met yet!
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Holly,
It's funny how your gyno wants you to hide that from your onc. I'll have to think about how I'm going to approach this. I see my onc in about 2 weeks. Many times I have wondered if taking this Femara is the right thing to do. My right hand and wrist have been hurting like crazy these past few days, along with everything else it's doing to me! I could go on my soapbox but that won't do me any good, I'd be back at the same place I'm at now.
Take care ladies!
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I asked my oco today about Femera have been on it since Dec. 8th and it is going extremely well. No side effects at all, every once in a while I will get pain where the tumor is and in the center of my chest where the swollen lymphnodes are. I take it at night and I sleep very well better than I have in years actually, I have been taking it at night since the beginning. I told the dr. that i thought I was depressed today and he said that it was a side effect of the Femera, so just see another month and see how I feel. That taking an anti-depressent might not be good for me taking that and the femera.
Sandy
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Kelley: You know I was talking about Vagifem and hiding it from the onc. The gyno is all for me having a better quality of life. She has many other patients who just wanted to feel good about themselves again as side affects from other meds are so bad. At least sex didn't have to be painful too. I blubbered all over her as finally someone was listening. Like I said it's a very low dose and doesn't get into your bloodstream. It's also not cheap, so you have to have a good medical plan. The onc doesn't even want to hear my Femara complaints as she says the bad outweighs the good, yadda yadda. Do you all find that your joints hurt a lot less in the warmer months? As soon as it got colder here (i'm in New York), the pain got a lot worse. Something as tame as raking the leave made my hands swell up. It stinks when you can't do what you want as you know the pain will follow.
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Ladies there is hope. It has been 1 year since I started Femara and slowly but surely either the pains went away or I accepted as the new norm ( I think the previous not the latter)
The only remaining problem is the fat cell situation. Since my body does not have any other source of estrogen it is telling my fat cells to brace themselves against all and any attacks and is actually armoring them lol... so I have gained about 20 on femara a total of 50 pound weight gain since this all started.
Staying active helps, massage helps.. I was a rower had to stop due to trigger fingers and achey joints then started slowly back (no drastic actions.. ) and now I am almost back to where I was. I gave up stilettos to crocs, clarks and good support shoes that minimized the foot pain.
So there is light in the end of the tunnel
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Ladies: I was given my first rx of Femara today. I've been reading these posts to see what others have experienced. The good, the bad and the ugly. I hope I don't have lots of side effects. If I do, I'll discuss some of the herbs and supplements I've read about on this thread with my onc. I'm glad all this info is available. Good wishes to us all. Jean
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I have heard a lot of women talk about trigger finger on here and my mother had sugery last year for it but I still really don't know what it means. Can someone explain?
Thanks.
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For me, when I close my hand into a fist, the middle finger on the right hand gets "stuck" down. It takes effort and sometimes assistance to pop it back up. This usually only happens first thing in the morning the first few times I close my hand, but last night it was happening in the evening as well.
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Holly, I know you were talking about the Vagifem and I appreciate the info. I may have to call my gyno and see what she can do. it's very strange, I haven't heard from her since she called to tell me I had bc, in August.(this was after the radiologist that performed the biopsy called me). I'm definitely going to talk to onc about the dryness and she if she recommends anything other than the replens cuz I don't want this to be my sex life! If I don't get anywhere with her, I'll have to consider other options and hide it from her!
I've only been on Femara since November, so I don't know about the weather thing. I live in Fl. and even though we just got done with a cold snap, it might not have been long enough. I'm tired now and need to go lay down. Take care!
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My gyn. said it was okay for me to use Vagifem, but my onc. said absolutely not. so I am not using it. I use coconut oil "down there". My onc. recommended Replens, but I don't like it, I find it irritating. I will talk to my onc. again about this when I see him in March.
Well, Monday will be 4 weeks on Femara, and so far, it hasn't been the horror I was dreading. A bit of stiffness when I am sitting in one position too long, some hip pain, nothing serious. Fatigue, but what else is new?
Hope everyone else is faring okay.
Hugs to all the Femara gals!
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ThereIsHope
Good to hear from someone who is near my age. I am sure there are a few more also!! And, Like you I am so glad to have found this site. We can all commiserate together and also share feelings and facts.
I am also inclined to believe what others have written here, the oncologist does not want to hear about any of the side effects of femara. Saw mine last week and was telling him about the shortness of breath and coughing--very similar to the allergy to my cat that my family dr. made me get rid of!! My onc, tho, just wanted to blame it on cigarettes because I smoke. Know I do not need to smoke BUT I did not have this problem until the femara was in my system about 3 months.
Got the results of the nuclear bone scan and there is cancer no other place in my body other than under my left arm and this is much smaller than when I started femara in July 09. Wonderful, wonderful--thank the Lord.
Does anyone know of a website I can visit that lists in black and white the exact changes made to medicare and medicaid that went into affect the first of this year? They will no longer pay for the fragmin shots that I have been taking for 6 months and I cannot afford $2700 a month. Onc said I will be ok; just everyone pray for me.
Will go for now. Hugs and prayers for everyone.
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My onc took me off the Femara yesterday. He said to go a month without to see if the SEs go away. If they do, then he's going to try Aromasin.
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Im filling my perscription of Femara TODAY....eeeeeeekkkkkkk?!
Ill start it Friday, after my 7 days of anti biotics. Oh the joy...We'll see how things go.
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Jane: What's the difference between the two? Just different companies? Can an Estrogen pos person use it? If so, maybe I can use it until the onc feels I can stop. My next visit with the onc isn't until March. Like I've said, it's been 5 1/2 years so far, so a couple of months more can't hurt. Will be very curious to see if your symptoms go away! And Kelley I am jealous that you are in the "warm" weather. Lived there (Pt. St. Lucie) years back, but the job didn't work out so I came back here. Kinda miss not freezing my butt off though as I love doing outdoor stuff. Not surprised that other onc's have forbid the use of the Vagifem. I'm on it for over a year now and the tumor markers, bloodwork, etc. have been fine. It's freezing in my office and also have Reynauds Syndrome, so my hands are very cold. Need to finally eat something and warm them up! Thanks girls!
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Aromasin is also an AI, like Femara, and, from what I've read, has similar SEs. Some people just react differently between the 2.
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Jane,
Keep us posted, and let us know if your se's go away... I hope for your sake that they disappear...
Lexislove,
We can keep each other updated on our experience with Femara. I just opened a 2nd bottle... I seem to be doing ok. Some stiffness, and aches... not too much in the way of Hot Flashes... but at night, I get night flashes... but we have an electric blanket, so it may be from overheating with the blanket... I tend to blame it on Femara, though. I have adjusted to the blanket, but still get these episodes once in awhile.
Harley
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I shudder to think as I am on my 66th bottle!!! I've been having hot flashs since my first experience with Tamoxifen, then Femara, which makes it 8 years now!!! Wish it would all go away. My honey says it's like sleeping with a heater 12 months out of the year. I have the fan going 24/7. Looks like snow here and all I can think of is I'm out of work in 25 minutes!! Thank god for the little things.
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Holly,
How long does your onc want to keep you on this? I know mine initially said 5 years but then mumbled something that sounded like maybe longer depending recommendations by then. I have the fan on at night all the time, too. In between night sweats, I freeze! I guess this is what life will be like for a while.
I started taking it at night to see if that makes a difference but haven't noticed anything yet. I have, however, started drinking this extra sleepytime tea at night and it seems to help me sleep better. Either that or I'm just exhausted! lol
Take care.
Kelley
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Good Morning Girls! Man, it sounds like you gals are just having too much fun on this thread!
I started reading these posts yesterday, from the beginning, & now skipped to the last, & I'll TELL ya, I don't know if I want to play with you girls here! I went to my new Oncologist yesterday, told her I was taking Tamoxifen, for one month....have had no side effects..yet! She thought I should be on Femara, & gave me 3 months supply to start. I am 72, feeling great, & like I said, have had no side effects from Tamoxifen.....So I got home, samples in hand, & came to this thread about Femara, & I'm just thinkin'...."Would I be nuts to start something else when I'm doing alright on the Tamoxifen?" Right now, I just want to finish the 2 months of the T pill, call the Oncologist, & tell her I really want to stay on that, & not even try Femara...Were any of you on Tamoxifen first?
I shouldn't have to worry about "blood-clots" because I never had any trouble with them while I was on the pill, and them Premarin for over 30 years.... The Oncologist DID say, that if the side-effects were too great, I could go back on Tamoxifen...But I don't know if I even want to start..... Thanks for any advice....Jeannette
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Chevyboy-I've been on Femara since Nov 16. No major se other than an occasional hot flash and some mild joint pain. My biggest thing was fatigue; I initially started taking Femara in the AM, but switched it around to nighttime about 2 weeks ago. I'm not nearly as fatigued during the day as I was, but I don't know that it's helping me sleep any better. My onc says she has a 92 yr old who insisted on taking Femara and is doing great on it; I think it's just an individual thing. Why does your onc think you should switch? If she has compelling reasoning then that should be considered, but it the reasoning isn't something that makes you go HMMMMMMMMMMM, then I don't know if I'd switch. You'll figure it out for you though-that's the important thing.
Joni
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Chevyboy
I took Tamoxifen for 2 years, and my onc told me that he wanted me to switch to an AI... I suggested Femara, because from what I read, it was the one with the least se's of the three AIs...
I've been on it for just over a month, and nothing to report except a few extra aches and pains.... a little stiffness, and hot flashes at night. Now just so you know, I had these with Tamoxifen also... If you have only been on Tamoxifen for 2 months, that really isn't enough to have many se's... I took it for about 3 months without much in the way of se's, and my onc told me that if I wasn't getting any se's... especially hot flashes, then it wasn't working. I was taking Effexor and he told me to STOP the Effexor. Sure enough, the hot flashes started to get worse a couple of months later.
But... that is just my experience, and everyone is different. My onc switched me to an AI because of the studies which show that it may be beneficial for us to start on Tamoxifen for 2 years and then to switch to an AI...
And, FWIW, after 6 months on Tamoxifen, I had a VERY THICK uterine lining, and I had uterine polyps growing in there... so I had to have a D & C... NOT FUN...
Good luck to you whatever you decide to do...
Hugs
Harley
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Kelley: That's just it. She said that 5 years is the normal course, but I had a recurrence after a year and a half on the Tamoxifen, so now she isn't sure. That's why i'm at 5 1/2 years now. The study on it hasn't been published yet. I can't be the ONLY one out there that's had a relapse.
Chevyboy - Remember that Tamoxifen is really an outdated med. It's only an estrogen "blocker". The Femara (AI) is an inhibitor and prevents estrogen from being produced in the first place. It's really a more radical drug and one dr.'s feel is a better choice in the fight. So much so that I had to forced into menopause to be able to take it. I had a recurrence on Tamoxifen, so it obviously wasn't good enough for me. It's just after all this time the SE's are getting to me and I am looking for when I can stop.
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Hi holly hates femara....I have been on these drugs now for alittle over 2 years. I am now waiting on a biopsy report to come in to see if the cancer has returned in the same breast. I like you hate femara!!!!!!! I have gained so much weight and my joints are a mess. I have days I feel I cannot function but I keep taking the dreaded pill and going on. If the cancer has returned I will be quite upset after destroying my body for the last 2 years only to start right back at the beginning once more.....I wish you luck...I can look in the mirror and see myself aging since going on femara. OH well I guess it is a wait and see game for some. I do know though that some people can take this without or very little side effects........jude14 once again prayers and best of luck to you
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Been on Femera about 2 months and still no side effect cept for being tired (take it at night) but still tired all day AND the hot flashes which I have had for 13 years anyways...
Sandy
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Morning Girls! Thanks for all of the information, & telling me what YOU are going through! I think Joni... that the only reason the Oncologist thought I should "switch" is because the Femara is "new" and works a "little differently"! I guess she thought it would be better than Tamoxifen, because of that! But she also said "We can't ever say you will never get cancer again, no matter what you take..." and I know that.....But I am still thinking I am going to finish taking the new bottle of Tamoxifen I have, then call her back & tell her I just want to stay on that pill! I don't have any side effects yet...on it for just a month.....except my hand hurts when I move it, & my knees hurt sometimes in bed....But at 72, Hey, that's to be expected, right?
I was afraid to start the Tamoxifen also! But so far, so good! And Harley44...I was reading on the "Bottle 'O Tamoxifen" thread about that test...the cyp2d2 or whatever.....A new article out about it not being effective in determining how we metabolize that pill.....You know, there is so much controversy about ANY new pill out there...and yes, the drug companies DO try & push their latest to the Medical profession!
Okay sweet girls.....thank you again! xoxoxoxo Jeannette
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Hi Girls, Femara..Femara...Femara..to take it or not to take it. Side effects or no side effects. I started taking it Oct. 2009 for a month, no side effects. My insurance decided not to approve it for me so I started taking Arimidex. Side effects were: no appetite, nausea, tired, no energy, bone pain to be the band starting in my neck and going in to my legs. In Jan. I had a visit with my Onc and to spare you the details he got me back on the Femara and now all the above it worse than before. Do you think my body is wondering what the heck is going on or is this my life for the next 4 1/2 years? I could use your advice. I am 60, most people think I look 50 but I feel like I am 80. Where did my get-up-and-go go to? I want to walk in the 5k Revlon Walk for the Cure in Los Angeles in May. I don't know if I will have any energy to do that by then. I just got a puppy thinking that she will get me out walking again. I used to walk at least 3 miles a day at the beach but now I am lucky to get her around the block. Discouraged?? yeah. I do know how blessed I am to have my marginal health. It is better than my alternative. I don't mean to complain. I just wish I had my energy and no so much pain right now. Is anyone experiencing this? I could use you advice. Thanks!
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I have been on femara for14 months and have the joint pain and stiffness.Some days worse than others.I have gained about 20lbs since surgery and am trying to get it off and I am not doing to good. My question has anyone lost weight while on femara?
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Holly- I wish I could help but from what I have read, they don't even know what the proper time frame is to take this. A lot I have read is just 2 years because Dr.'s were doing 5 on Tamoxifen and then 2 years Femara. It's very scary to see what is going to happen in the years to come with our bodies because of this drug. I know it's supposed to be great with the bc and all but we also have to worry about the long lasting effects, not just the ones we're experiencing now.
jude14- good luck with your biopsy results-let us know. ((((((hugs))))))
ktmimi2-my get up and go, got up and went but not sure where.lol I do know that I have had to push myself to walk and will now need to start up aerobics again this week. It's hard because I'm exhausted and joints stiff, etc, but I do feel better after I'm done. I have told myself I am NOT going to gain weight on this stupid drug and will do what I need to do.
nanna- I have lost at least 15 lbs but it hasn't been easy. I have changed my diet to mostly whole foods and exercise, walking for the last 6 weeks because of surgery but anxious to start up aerobics again. The diet takes some getting used to and you need to be creative and read either cookbooks or go online for recipes. It's mostly lots of veggies, fruits and whole grain things and portion control. I'm doing my best to stay away from processed foods, making a lot from scratch now-no preservatives and I can pronounce what is in everything! It takes more time but I have to tell you, I feel better because I used to get acid reflux and now I do not! Plus, I do not get that bloated feeling either. Go to some of the diet threads here for some additional help.
I still don't like taking this little yellow pill, my feet have been killing me since I went back to work! I'm also noticing more and more stiffness in my hips, back and shoulders. Although my hands give me problems, they are not worse, and I'm hoping I don't get trigger finger! This is one roller coaster ride I definitely don't want to be on any more!
Take care ladies and try to have the best day you can.
Kelley
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I would love to know the answer to that also! I have also gained. Side effects not too bad. My onc says I will probably be on this pill for 10 years. Does the weight gain level off or do you jjust keep gaining.UGH!!
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Hi.. I just started Femara on Jan 1st, after 2 yrs on Tamoxifen. I seem to be doing ok, but recently have noticed more aches and pains, especially when I don't get out to exercise because the weather has been nasty... the nasty weather, I think has also caused some extra aches and pains.
Saltykm,
Why has your onc said you are to take Femara for 10 years?? I thought they were still saying 5 years... oh no.... I was hoping to be off these hormonal drugs after 5 years!
Harley
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10 yrs shew I dont want to do that. I also thought you took it 5 yrs. How long has femara been on market?
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She explained in like this, its like a bear hibernating, you take the pill for 5 years,everything is fine, then you stop and it wakes up! Kindof makes sense! Not real crazy about the idea either, but what do you do.
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Well I am taking at the beginning as my onco says it is the one with the least side effects if it works then good if the tumor is still growing or the lymphnodes haven't gotten better then we are changing it, problem is have to wait until March (3 months) to check and then every 4 - 6 months after that and my thing is what if it stops working the day after you scan, then I am going 4 - 6 months with nothing and it's growing, hate it.....it feels like I am waiting for the end....sorry to sound grim but that is the way I feel. Anyway, the side effects are still hot flashes, can't seem to get up in the morning, don't have body aches couldn't get off the floor before am 56...guess we will see...
Sandy
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I'm also almost 72(in march) and have been on Femara for 7 mos.I have all the aches and pains especially in my hands,feet and neck,and have a lot of pain and discomfort in my Right arm.cancer side.They have run dopplers looking for clots,have had mri's cat scans etc and everything looks good.Doc said he knows the hand and foot pain is caused by the meds,the arm however has him baffled.
He first put me on aromasin and by the 2nd month i had to go off,too many se's from that,so he said femera,as he doesn't usually put post menopausal women on tomoxafin,as it doesn't work as well for us as femera or aromasin.I'll be on femara for 5 years,and hopefully no longer.
Kathi
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saltykm
I will need to discuss this with my onc... he mentioned last year (in June) that I could take the AIs forever... I questioned him, and then he admitted that... they just don't know... so I guess I'll see what happens... I'm not even sure I can take Femara for 3 years, to complete my 5 yrs. on hormonal treatment... I took Tamoxifen for 2 yrs...
It is always something...
Harley
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I've been off for a week and the SEs haven't gotten any better yet but the onc said it would take about 3 weeks to get out of my system.
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Hey Jude (pardon the pun). I hope things work out for you. I've been out of the loop for a couple of days (having peeps over for Super Bowl, etc.). I try not to think too much about all of this, but it creeps into your life. Only we know how hard it is to live with. Other people think you look great, etc., but inside you're screaming. You wish the weight gain would stop, you wish the joint pain would stop, the hot flashes, etc. When I saw "saltykm's" post about taking it for 10 years, I almost fainted. The norm (according to the drs.) is 5 years Tamox, 5 years Femara, although you all notice that lately the dr.'s just aren't sure. Isn't exactly reassuring now is it. I was a workout freak myself for a long time, but stopped doing any high impact work as it made my joints hurt more. The one thing I do love and makes you feel great is "aquasize". We have it at our local high school through adult ed. There's no impact and you you get a great workout. The bigger plus is no hot flashes while you're in the water!! I used to feel like passing out when I worked out. It's a thought anyway... It's all so hard to say...what helps, what doesn't, etc. At least we can keep bouncing our ideas off each other and hope that one of us gets the right answer and can pass it on. There were plenty of things the doctor said I wouldn't be able to do anymore and I'm doing them. So much for what they say. You decide what you want to do. There are foods to stay away from that cause inflammation, etc. You just have to read up on them. Yes it's a bitch and we all feel like we've aged a lot in the process, but you don't stop trying and you prove them all wrong. God I sound like a motivational speaker. Anyway, kisses to you all and just think of this as your way to blow off steam with your "girlfriends". A martini or two doesn't hurt either!
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Hi again everyone!
I just took my FIRST Femara pill. Recap.......... was on Tamox with OS for 18 months. Tested as a poor tamox metabolizer in January...........so............switched to Femara. Going for an ooph consult on Wednesday.
Will see how it goes.
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Hi ladies!
I took a month off from reading and posting before I started Femara. I wanted to feel normal for a short then I would start it. Well I took my first pill at noon today. I was hit a short while ago with heavy nausea, but of course not sure if it a se or not. I think I will try tomorrow night to take the next one. I have always had trouble sleeping plus hot flashes since my surgery. I don't want my sleep to get any worse so after reading most of the posts it looks like most of you have less problems when you take it at night so I will give that a try.
I do know that if I have bad se I will stop taking it and take my chances, but that is just my decision not for anyone else to follow. I till will keep posting and time goes by and I will keep up with all the posts to see how I compare to everyone else.
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HollyHatesFemara,
I have read the 2 yrs. on Tamoxifen/3 to 5 yrs. on AIs were the norm... gee I don't know...
Lexislove,
Congratulations on your 1st Femara... keep us posted on how you're doing... I've had some night flashes, and some aches and pains, and they are worse when I don't exercise. If I try to get some exercise during the day, I feel better.
Sunnyfornow,
Welcome... congrats on your 1st Femara pill... sorry you felt nausea... hmmm... I don't take it with food, but maybe you could try a snack when you take it... maybe that would help.
Hugs to all
Harley
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You know, all your messages have been helping me so much. Seriously, I was thinking that my cancer had spread to my bones because I have so much pain. The pain is in my neck, hip, legs and now, arms. It feels like you have the flu all day and night. At night the pain travels around from body part to body part. It is so strange. Does anyone have some suggestions as to what I might take to help with the pain. Advil doesn't touch it. I have taken 1/2 of a Vicodin but that isn't working either.
I want to exercise but I have no energy or motivation and when I do walk then I hurt even more. I guess I need to gut it up and push through it. I would feel better if I knew that just maybe the pain would get better but for now I feel like all I do is complain and I am not a complainer.New-to-Femara friends, please keep me posted on any SE. Thanks again everyone for posting to this great site. It's all about the communication between us women. Please keep your advice coming. HAPPY VALENTINE'S DAY TO ALL
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Hi ktmimi2
Welcome to the Femara club! How long have you been taking Femara?
Hang in there! I just started Jan 1st, but seem to be doing alright. When I am sitting for a long time, my joints feel achey when I get up out of my chair. Yes, sometimes I feel like I'm 80 years old!! But, I keep reminding myself that taking the Femara will help prevent bc recurrence.
Hope everyone is having a great day!!
Hugs
Harley
ktmimi2, thanks for the warm Valentines wishes!!
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Hi Girls,
I have been on Femara for 2 weeks. I am stiff after sitting and have hot flashes (course they were worse on chemo.). I guess in time I will be able to tell if I have more SE.
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I too took Femara for a while. Too many aches and pains and I didn't like reading all of the s/e's and possible long term damge, ie: bone loss! Fortunately for me, my oncologist is very open minded to alternative therapies and said for me, the less medical intervention the better she thinks I will be!
I am surprised that more of you are not looking into alternative therapies given the "newness" of the drug. At what point do we decide quality of life is of importance.
I have met many long term survivors 10- 15 years and more who tell me they took "nothing' for various reasons!
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Hi everyone! I, too, have been on Femara since the 1st of this yr. I have experienced some hot flashes, but they are not too bad. Ask me again in the summer and I may have a different story (hopefully not). I have been diligent about exercise - Pilates and some yoga, also walking and/or aerobic activity. For me it really helps physically as well as emotionally and spiritually. I guess it's a matter of finding what works for each of us as an individual. Keep strong ladies. Chris
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I agree, I told my onco that I had pain in my arm where the tumor was and under my arm, and of course in my neck and was convinced that it wasn't working but now I wonder if it is the Femera..
Sandy
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Hello Ladies, I'm sitting here after reading all your posts, feeling I maybe CAN put up with the horrible Femara! Thank you for all your experiences and ideas on self -help.
. Have had 5 years of Tamoxafin and now into the 2nd year of a 5 -year course of Femara. I also take medications for high blood pressure and osteoporosis I hate taking pills!
Tamoxafin didn't worry me apart from the hot flushes, but Femara is not good. First numbness in my hands at night, which would wear off with movement. Now I have constant pain in both hands throughout the day. Sometimes it's like a red hot poker, especially in the joint at the base of my first finger. Fingers stick, like trigger-finger, but the mad thing is that it's different fingers all the time. I'm sure the Dr. Thinks I'm imagining things.
Lately I've been getting sharp cramps in the arch of one foot, and stiffness in my hips and back after sitting or driving. I'm 68, and walk like a crone sometimes.
I keep playing the piano, and hope I'm not doing too much damage, and have just started swimming in a heated pool.
But hey, girls, we're still here! Thanks again.
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quarter 405
Hi and welcome to the Femara club... I too get stiff and have some achiness after sitting for awhile... sometimes, it feels like I'm 80 years old!
Hi Chris... I also think that keeping active, exercise helps... I have less aches when I get my exercise... unfortunately it's COLD here, and it's been raining, and now it's very windy... so I will have to get on that elliptical machine... UGH... hate it! But, at least it's something...
Sandy
I've been having some pains in that underarm area, but I think I overdid it when I was cleaning a couple of weeks ago, because it seems better now...
MauraAnn,
I have heard that swimming in a heated pool is REALLY good exercise, and good for these joint pains that we can get from the AIs... It's good that you have a pool... I am taking more warm baths... I think I'll get some epsom salts, because I read that soaking in epsom salts helps with these kinds of aches, too... something about the magnesium. I read that it is absorbed into the skin. I'll try it... it can't hurt...
Good luck to all of us... Hope everyone has a great day!!
Harley
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Day 3 of Femara....lol.
How many more to go?
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Lexislove,
oh, day #3... gee, I am afraid to count how many more... lol I'm not sure I can get through THREE more years on Femara...
I try not to think about how many # are left... I may lose my mind!!
I keep reminding myself... one day at a time...
Hugs to you
Harley
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Carol 1949
You mention alternative therapies, what are you doing as a alternative. I am very interested as I really don't want to be on any medicine and I just am not convinced that this pill is right for me.
Anyone else consider going the alternative after being on the pill.
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...I don't know of ANY alternative treatments that are PROVEN to work, in preventing recurrence...
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Hi Carol, I haven't considered alternatives to orthodox treatment, but I have tried all sorts of alternative therapies that certainly make it easier to cope with side-effects.When I can afford it, I treat myself to a massaqe, sometimes just a hand and arm massage which gives relief for days.Also good are the meditation type sessions that help you to not fight the pain. Some cancer organizations run a variety of these therapies (at very low cost or free) not as a main treatment, but as an aid to wellbeing.
Harley, I'm finding the warm swimming pool is a great help and yes, am very lucky to have one nearby. Feel more relaxed and flexible. I love your idea of Epsom salts baths..think I'll forgo the Old Country Roses bubble stuff and give the old salts a go!
Enjoy the day. Maura
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Last October, the Germans published their findings for a landmark study on Tomoxifen and genetic identification of success of usage. Very large study that examined women who benefited against those who didn't. It's possible for women to be tested to determine if they are strong, moderate, or weak candidates for Tomoxifen. For women who are strong candidates, the benefits of Tomxifen can be as great as with aromatase inhibitors. German MDs are suggesting that those women continue with Tomoxifen. I had myself tested and am not a good candidate. Wish I knew that when I was given it 19 years ago! However, this important study is paving the way for treatment to become more prescriptive rather than doctors hoping women will respond well on different mecications.
Additionally, my oncologist agreed with Sloan Kettering oncologist that moderate use of soy products would not affect success of aromatase inhibitors. Last month, very large study statistically indicated that soy products helped prevented breast cancer and also helped prevent recurrences. The use of soy products in Asian countries along with vegetables, green tea, ginger, high omega lean protein seems to work. When Asian women adopt a western diet, incident of breast cancer becomes same. Curcumin is also a powerful antiinflammatory. In fact, many of the antiinflamatory supplements that ocunteract arthritic symptoms also help counteract cancer. MD Anderson published during last four weeks clinical trial II results showing very strong correlations with 8 more more cups of green tea consumption correlates with descreased incidence of primary cancery and improved response with recurrence. I don't think we want to wait for clinical III trial results to drink green/white tea -- it'll take another 10 years, so why wait? White tea is even stronger in regard to antioxidants. Since I was diagnozed with metatastic cancer around 6 months ago, I have been drinking around 5 cups a day in combination with supplement (decafinated supplements also unfortunately eliminate most of the benefits, so take cafinated tablet that provides the equivalent of 5 cups. Green/white tea have about 1/17 cafineof one cup of coffee. I try not to have more than one cup of coffee a day when I drink it.
I have been on Femara for four months with no sumptoms except problems sleeping (use melatonin and herbal remedies that really help if I take them hour before going to bed) and also feeling cold when I first try to go to sleep. Mild hot flashes -- I reframe and think aobut how the femara is working. Was taking most of supplements recommended on board prior to beginning Femara, so perhaps one reason I'm mostly ok right now. I cannot stress enough how important exercise is in helping me achieve deeper sleep and feel better overall. I had problems with hair loss but seems to have stopped after taking biotin and silica for over four weeks.
Based on mammography today, I possibly have local recurrence in breast -- will need to biopsy next week to determine. I was strongly premenopausal when I was diagnosed around 20 years ago and during the last year, diagnosed my remote recurrence to absomen in advance of the best doctors. Strongly node positive in both respects (estrogen and progestrogen) along with possibility of slow-growing cancer. CA 27-29 dropping steadily. I am hoping to beat the odds, but also feel a bit of humility at this point.
30% of women will have recurrences, so hang tough with identified hormone medications that can reduce your chances. But also, there's some indication that those who have symptoms (without the use of supplements) may be benefiting the most. Unfortunately, 30% who demonstrate symptoms are chosing to stop taking femara. I would recommend that you strive to reduce the symptoms of the medication so you can tolerate the aromatase inhibitor as well as possible. If you are overweight, losing weight relieves joint problems in and of itself. Eating well and exercising will help you lose weightl and eliminate toxins.
Pre and probiotics are extremely important to digest food completely. 70% of the immune system is achieved by good maintenance of the intestinal tract and also avoiding foods for which one is intolerant as determined by individual testing. I am taking Good Belly each day since taking probiotics in nondairy form is beneficial (Good Belly uses a berry base and will provide one serving of fruit). We all know how important eating plenty of vegetables, fiber, and lean protein and drinking fresh water is. It's a matter of making a habit of doing so. We know how important exercise is. It's a matter of taking walks and lifting weights -- you don't need to go to the gym if it's not convenient or affordable.
Finally, the cost of femara has gone up! Now over $500, over a $100 increase. This is hitting many women hard if they don't have health care. My oncologist is switching many women to aremidex which will become generic in the next few months. Symptoms releated to aremidex can be counteracted in ways similar to counteracting symptoms related to femara. The aremidex offers essentially the same benefits as femara and might be a very important alternative for many women when it goes generic.
Hang tight and be proactive in finding solutions! Every day of life is a blessing!
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Also recommend ready Russel Blaylock's book/s. Andrew Weill agrees that it's important to ingest omega 3 in proportions of 3:1 to omeg 6. The average American diet has too much omega 6. Soy is high in omega 6, a reason why Blaylock would recommend that one not overdo it with soy. However, the Asians ingest soy in combination with high Omega 3 foods, maintaining the correct balance.
I've read on the boards that many oncologists are insisting that women avoid soy products. I myself avoided them prior to diagnosis of my met. However, the recent research istrongly indicates that eating some soy, particularly the fermented types, might be beneficial.
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my onoc told me that it was 300.00 and it is the only one my insurance co doesn't have to be pushed to pay for me for.
Sandy
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Hot flashes - not sooo bad when it's cold out, but boy, oh boy, I am not looking forward to the HOT weather. Cold showers - here I come! Chris
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The cost of Femara that you are all posting - is that per month? In Ontario Canada I am paying $185/month for Femara. I have drug coverage for $1,000/year. Drugs are not covered under the universal health plan, unless it is given in a hospital setting - i.e. my chemo and Herceptin were covered by the government plan. If you have an operation, all anaesthetic, meds etc. while you are in the hospital are covered.
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With my insurance, Femara is only $9 per month.
Harley
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I've been on Femara since April 09. Minimal side effects until recently. My left knee began to really hurt about 3 weeks ago and it has gotten worse. I had x-rays this week, but no results yet. I know I need to exercise more, but had a bad cold for almost a month. Just now beginning to get well again. I have a heated pool here in Florida, but it has been too cold to keep it at the 86 degrees we like. Will have to wait for about another month before I can do that. Have to make myself go out to walk, but I hate it. I like Harley's idea of taking hot salt baths. Will do that over this long weekend. I did not have to pay co-pays at all last year because I was in a catastrophic co-pay situation, but just found out it will be $35 a month.
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Hi everyone,
I was the one who first suggested taking epsom salt baths. - I try to take them 3 times/week - a nice soak for about 15 - 20 minutes really helps. If you have a whirlpool tub like I do, turn on those jets for part of the time and enjoy. It's the magnesium in the salts that eases muscular/joint pain.
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caya
I didn't see your post. My friend soaks in Epsom Salts and she said her naturopath dr. recommends it.
I don't think I would put anything in the water, if I turned those jets on. You can get the jets all clogged up.
Harley
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Femara vs. Tamoxifen for Breast Cancer
Femara, Tamoxifen Show Equal Survival Rates in Breast Cancer Study By Miranda Hitti
WebMD Health News Reviewed by Louise Chang, MDAug. 19, 2009 -- Breast cancer patients may do as well with the drug Femara as they do with tamoxifen, a new study shows.
The international study, published in The New England Journal of Medicine, included more than 6,100 postmenopausal women who had breast cancer that was sensitive to the hormones estrogen or progesterone.
After the women finished their breast cancer treatment, they were assigned to one of the following plans:
- Take tamoxifen for five years
- Take Femara for five years
- Take tamoxifen for two years, then Femara for three years
- Take Femara for two years, then tamoxifen for three years
The women didn't know which pills they were taking.
Tamoxifen and Femara work differently. Tamoxifen blocks the action of estrogen in the body.
Femara belongs to a class of drugs called aromatase inhibitors. Those drugs, which also include Arimidex and Aromasin, target the aromatase enzyme, which is needed to make estrogen.
The new study shows that over about six years, the women's odds of cancer-free survival were equally good taking Femara alone or taking either tamoxifen first and Femara later or vice versa.
There was no significant difference in overall survival between women who took Femara alone compared to women who took tamoxifen alone for five years, report the researchers, who included Henning Mouridsen, MD, chair of the Danish Breast Cancer Cooperative Group.
In 2005, the researchers reported that recurrence of breast cancer in sites far from the breast was less common in women taking Femara than in those taking tamoxifen.
The new study shows that the drugs' side effects were in line with known risks; no unusual adverse events were reported.
The study was funded by Novartis, the drug company that makes Femara. In the journal, Mouridsen and several other researchers disclose ties to Novartis. Femara was the only aromatase inhibitor included in the study
I think all this means is, you can take whatever you feel is safest for you....My Oncologist wanted me to take Femara, after the first Oncologist put me on Tamoxifen...I'm just afraid to start Femara, since the Tamoxifen is working alright...I have had no side effects so far, from Tamoxifen....Wouldn't it be nice to KNOW which one is really the best? Jeannette.
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Hi Femara-mates, Happy Valentine's Day to all. Okay, so, I haven't been on the Femara very long....October(first month) November - December, I was switched to Arimidex. Bone pain started about the second month which would be December until the middle of Jan. I went to see my Onc and he switched me back to Femara. February, has been the worst month for the bone pain/fatigue. I can't imagine living my life like this for the next five years. Does anyone know of survivor friends or family that just stopped taking this medication? I was talking with a neighbors daughter tonight who told me that her friend stopped the Femara because she just could not deal with the pain anymore. I have tried Advil, Alieve, Vicodin and so far, nothing is helping this pain. It is depressing getting up each morning and feeling stiff, sore, and in pain all day. It's not any one area. It's starting at the neck and goes to arms and hips, and legs and then feet. I wonder if this is only a small percentage of women experiencing this. Most of the women writing on this site are women having issues and they are trying to get help or suggestions. What about all the other women who are dealing with the same things we are going through? Maybe they don't know about this discussion board. In reality, I would love to NOT take this at all because I feel terrible but I don't know what the chances are of recurrence or if this cancer will reappear in another organ via my estrogen if I don't take the blocker. Sorry, I am just sounding off right now and this is a great way to do it. I realize there is not an answer that will make it all go away but it does help to vent.
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I haven't been on here for a while and can't remember what I did write!! LOL I have been on femara since July 09 and it seems that my side effects are just getting worse and closer together. For 3 days this past week, I have hurt from my neck down with not much let up. Now, my arms both hurt and my pinky finger and one next to it (right hand--cancer was on left side!) are hurting so bad that I really wouldn't care if they fell off!! So many things that I eat now that didn't bother me before really hurt my stomach and a lot of it will give me diarrhea. Before fermara, it took an act of congress for me to get nauseated or loose bowels! ha ha Also have been getting muscle spasms in my legs and feet--don't know if this is old age or another side effect. Am afraid not to take femara because this is my second round with cancer-first was 14 1/2 years before it came back. What really gets me the most is simple chores that I just cannot do anymore. Like loading the bottom of the dishwasher-top is no problem, but can't bend over because of aches in my back. Even washing and drying clothes nearly wears me out, but I have got to keep on moving. Am afraid to quit everything. And I bruised or cracked another rib--this time on the right side. Actually , my own stupidity--I am only 4'11 1/2" tall; and when I washed clothes the other day, I saw a dime in the bottom of the tub; without thinking I tried to get it out; and you guessed it--another rib hurt. BUT recent bone density and nuclear bone scan (according to my oncologist) showed no change in bones. I truly believe tho, that he is in total denial as to any side effects of the femara!!
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Susie....thanks for all your valuable information. Keep us posted on your test results. My Onco said the same thing about soy. I like tofu on occasion.
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ok.. I posted here, and POOF, it disappeared!
Haven't been on much so I am sorry if I miss replying to someone's post...
gauleyeagle & ktmimi2,
I wouldn't blame you if you quit taking hormonals due to se's... but, for now, I want to try to do everything I can to prevent recurrence. If I have too much se from Femara, I guess I'll ask my onc about switching back to Tamoxifen, although Tamox. caused these dreadful uterine polyps to grow, and I had to have a d & c... not fun...
Hi boo
I like to think that since we are taking the anti hormonal, it is ok to get some soy... after all, it IS in EVERYTHING!!
Hope everyone is doing well.
Harley
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Hi Ladies,
Visit to Onc. last week, good news, MRI clean!!!!! Evidently tumor markers good since I've not heard anything back. Also, have started glucosamine/chondroiton to see if it helps with joints. Dr. said it was ok to give it a try now. Hope for the best cuz hips are starting to bother me now.
To those wanting help with the cost of Femara, if you go to their website, you can print a coupon and if you're eligible, you can get it for $10.00/month. This program last until June 2011, when the generic comes out. Read the fine print as there are some conditions but every bit helps!
Back to side effects, I have noticed that since I take it at night now, I can sleep a bit better, not great but better. I also asked onc about vagifem and she said that I could take it if things got really bad and I started bleeding. She said that the replens takes a while to build up in your system so give it time. Just taking things a day at a time.
Take care and everyone have a great day!
Kelley
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KAC
Thanks for reposting about the Femara $10 coupons... my onc gave me one... but my insurance is only $9... if anyone needs it, please pm me...
Harley -
I was able to print one of the Femara $10 coupons from their website. I've used it so know it works!
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Hello Femara Ladies,
I was also able to print the $10.00 coupon and use it, it's great for me as my insurance copay is 379.00 for 30 pills. There is also another coupon at the same website where you can print a form for a Free 30 day supply of Femara, needed to have the onc. sign the form and also attach a 30 day script, but it's free,
If you are on medicare and have a prescription medicare plan, the $10.00 coupon cannot be used with the plan, however you can buy femara with the coupon OUTSIDE your plan, but the $800.00 limit is reached in two months then as the cost at the pharmacy is close to $500. for 30 tablets, so first month I paid $10.00 the second month $230. and that was the end of that one, but a help never the less/
It's hard for me to happily pay the high cost of femara and have so many aches and pains from it, sometimes I really think I will just stop taking this medicine. and take my chances, after all there is no guarantee that a recurrence of bc wont happen anyway. (sigh)
dsgirl
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Harley, when you put the epsom salts in the water,swish them around a little and then they dissolve. I have had no trouble with the jets in my tub.
Kelley, great news about the clean MRI.
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Hi everyone,
I don't know whether or not this works for everyone, but I take my Femara at night and I take two Tylenol PM tablets at night also. So far, and I hope this stays this way, no se and the aches and pains are manageable.
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CayaI know now..... I just had a bath last night... thanks for the advice....
Pattyfish
How long have you been taking Femara? I have been taking Femara since Jan 1, and didn't have too much trouble at 1st with se's, but lately, it's been so COLD here, and I have noticed more se's... more aches and pains...
Harley
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Hello Ladies - Ques. Anyone on Femara say 3 mos or more: How has Femara affected your bone density? I am due to have a bone scan in Apr, at which point I will have been on Fem for 3 mos. Aside from being on an AI, I also have other risk factors for osteoporosis/penia. Obviously getting a little anxious about it. I have been taking calcium/vit D. I am interested in knowing other's experience with it and how it's been managed/treated. Thanks for any info you can share. Have a great day. Chris
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Harley, I have been on Femara since Jan 16, and it has been very cold here in central FL. I know most say, "Yeah, right," but the cold here is very damp and penetrating, plus we don't have the insulation. We live in a concrete block home--great against hurricanes but poor against cold.. You look young, and I am older than dirt, so I am used to aches and pains being the rule. My hubby g ave me a gift certificate for 4 massages and I think those have helped.
reeltchr- I had my routine bone density test last Sept, so I can't have one in a while. I had a bone scan before I had surgery. My docs wanted to rule out the possibility of other cancers before they did the lumpectomy.
Pat
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Pat
You are too kind! Somedays I feel 82... lol I think it's the Femara and the COLD weather we've been having... I know, people keep telling ME that I live near Myrtle Beach, SC so I have temps in the 40's and I shouldn't complain... but the low 40's are still cold, when we are usually in the low 60's in the Winter months...
I have noticed more aches and pains in the past couple of weeks... 1. I haven't been able to exercise as much as I was doing earlier, and 2. well... it's SO COLD...
Hope it warms up soon!
Harley -
I have been on Femara for a month, the Dr. gave me a sample bottle to see if I would have side effects. Yesterday they gave me a prescription and when I went to fill it I had a $250.00 copay! Are all of you paying this much or is there a cheaper place to get this! I was not expecting this "side effect"
thanks for your help
Karen
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I just read some fo the past posts, I will be looking for that 10$ coupon but if it's only up to 800$ that will go quickly. Is Femara coming out with a genetic pill too?
thanks
Karen
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I have heard that Femara will go generic next year, in June sometime... let's hope so...
If anyone needs a $10 coupon, please pm me and I'll send it to you. With my insurance, it only costs me $9 per month, so I would be crazy to pay $10! lol I was under the impression that with the coupon, all you have to pay is $10, and that coupon is supposed to be good thru 2011.
Harley
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where do I get the coupon? I would be happy to send mine to anyone as I get mine for $7 for a three month supply using my mail order insurance.....I could not pay they full amount!!!!!!
Jude
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Jude
that is great! If I send mine through express scripts, I can get it for $16, for 90 days... your plan is better than mine!
I got a Rx card from my onc.... so if anyone wants mine, please send me a pm and I'll send it to you.
Harley
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Hi all,
just back from vacation in California.... somehow the side effects of femara were worse there for me. I continued exercising every day--- and we did walk alot-- but we went sailing and I could barely move from one side of the boat to the other. I think I have been exercising, going to work and coming home all winter and not doing other things--- and this was my first time trying and it was painful..... it was almost comical as I tried to scoot from one side of the boat to the other-- but it was also frustrating---- I have managed to get back to yoga, swimming, biking and was really hoping to start running again--but this past week was really a surprise to me.....I am still stiff in places...I know it will be ok eventually-but I see my onc in March--- it will take all my energy NOT to ask to get off this drug!!!1
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Chris
After one year of femara my bone density dropped 30% but I was not taking calcium. I am now on Zometa 2x a year calcium and D3 took my first in August I should be checking DXA soon so will let you know how my bone density is now.
HH
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For those who may not know, go to femara.com. You can print out the coupon for the co-pay and take it to the pharmacy. I did not have to pay co-pays on anything last year (in catastrophic co-pays situation with insurance) but do now. I haven't had to fill my femara script yet, but called to see what my co-pay per month would be with my insurance. $35.00. I took the coupon in today and they will honor it. Now it is only $10.00 month. That I can live with.I'm really having trouble with a knee and the pain. It must be like arthritis, on some days it is ok and on others it is almost unbearable.
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wondering if anybody a side effect of cramping (charlie horses) from Femera? I seem to be getting one a day!!
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Blondie, I have muscle spasms in my leg all the time. They were so bad one time I could not walk and went to the emergency room. they lasted for several days.
I did not know till I went to femara.com and read up that t his femara can cause heart problems. Anyone know what kind of heart problems?
the more I read and the longer I take I like them even less. jude
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I got cramps from Tamoxifen, also...
I guess the heart problems may come in, because Femara causes Elevated Cholesterol levels... that causes heart disease... heart attacks.... etc....
Harley
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oh, and blood clots and strokes....
WHY are we taking this drug again??
Harley
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Harley...I thnk we are taking this drug because they keep telling us it is the wise thing to do........hmmmmm?
jude
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I know.... EVERY NIGHT, I have to remind myself, before I take out that little yellow pill....
YOU ARE TAKING THIS LITTLE YELLOW PILL TO PREVENT A RECURRENCE!! I'm scared to take it, but I am also scared NOT to take it....
Hugs
Harley
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well I have the recurrence and why am I taking it, if the cancer doesn't kill me the meds will!!
Sandy
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I'm sorry Sandy... I wish there was a way to take the bc out of you.
I think you are taking this drug to try to keep the beast at bay.
{HUGS}
Harley
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Infohh- Thanks for the info. I guess I'll find out early Apr how I am faring with bone density. I did start taking calcium and vit d when I started Femara which, hopefully, will help. 30% is quite a difference. I hope your test results show improvement. Good luck. Chris
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I've been on Femara, and also Zometa, for a year now. I had few side effects until about 8 months into treatment, then the muscle and joint aches and pains started. Glucosamine/Chondroitin and Ibuprofen help. Have been feeling good lately, but have been fatigued from the beginning. NED on my PET/CT scan last week, so it's working. First diagnosed 12 years ago at 47, then found it had metastasized to the bone and lung pleura at age 59 (after 12 years of clear mammograms).
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I've had charlie horses in my feet since I've been on Femara, which seemed to start after 7 or 8 months of treatment. Keeping well hydrated seems to help. Also, I'm taking potassium daily.
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apparently I am taking it because is the one with the least side effects that is what the onco. told me. That is tumor will not go away but hopefully it will help with the the other places that it is.
Sandy
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Hey girls - been off the posts for a while. I'm the one on F for 5 1/2 years and still cursing the affects. Switched to nite time and it is a bit better. Have to remind myself about getting the salts for my bath as my memory is so bad from all this. Everyone is rightfully nervous about this drug. I was on Tamox for a little over a year when I had my re-currence, so this was the next step. I'm just sitting tight and waiting for the next published study for us re-currence gals and the protocol for how long to be on this drug. My onc is just so unsure and I think she's tired of my gripes about the se's. Just want a good quality of life, is that so much to ask for??? I am just so scared that the SE's will become permanent. Have gone back to resistance training when I can get the umph to do it. Just typing hurts. You guys at least keep me in the loop as my dr. visits are every 3 months. Thanks to Femara, I also have a Rheumatologist on my coat-tails. My insurance comp considered this a Tier II drug ($35), which is a lot better than what i'm seeing here. If they change it to a generic, it will be $15. I also have the high cholesterol, so i'm on Crestor too! I'm losing track of all these pills. Have no bone loss, but a big drop in Vitamin D, so they also have me on a script med, which is sort of a super "D" pill. I need reminders to keep all these pills in check. It really stinks. It's raining and cold here in NY right now and it makes me ache. I am soooo looking foward to Spring and letting the sun shine on my face. Keep those posts coming as it helps to know we all have so much in common! xxxooo - Holly
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Hi Holly
Sorry about your recurrence.
Looks like we are all in the same boat, taking Femara to try to keep this beast at bay, either to prevent a recurrence, or to keep it from going any further.
I hope everyone is doing ok, and I agree that when the weather warms up, I think we'll ALL feel better.
Hang in there!
Harley
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Hello all my femara friends
To Holly Hates Femara- I have been on this stuff since July 09 and for the first 6 month or a little less, my side effects weren't too terribly bad. But it seems in the last month, they have come with a vengeance. Besides all the pains, my hair has really started coming out especially when I wash and dry it. Has your done this? I have even been taking 5000 a day of biotin-which is supposed to be good for thinning hair. Has yours thinned; and if so, how much? My son said he would buy me a doo rag if things get really bad. HA HA
As I have said before, it seems as if my onc. doesn't want to hear anything about any side effects; always wants to blame them on something else. Anymore, I can't hardly type anything because of the pain in my left arm--where the cancer recurred and also have lymphodema (SP)?
I do have a lymph press for the lymph. and it does help a lot.
I cannot remember the last time I had a normal nights sleep. I just thank goodness I am retired and do not have to get out in the morning to go to work. I was still working the first time I had cancer (breast with modified mastectomy) and aside from dr visits and chemo days, only missed one day of work and this was when my hair started falling out really bad! I totally lost it that day!!
Well girls, will go for now. Hugs and prayers to everyone.
Sue
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So, its been a little over 2 weeks since starting Femara. Im doing it with OS ( poor tamox metabolizer).
I know its still early for side effects and all...BUT...Im happy to report that I am sleeping now!
On Tamox...no sleep. If I was lucky 3-4 hours total. Going to bed between 12- 1am. Waking up 3-5x a night. Finally....falling asleep around 4 or 5am. Up at 8am with my 4yr old. It was horrible. I was not functioning well. to everyone around me I was doing great, but inside I was not. Extremely tired and cranky. I noticed it was taking over any enjoyment and I was struggling. Now, I can go to bed at a reasonale time...and wake up feeling relaxed. It does not take me 1-2 hours of tossing and turning before I finally hit snooze.
I havent noticed any any more joint aches ect. I have been less mobile because I have been taking it easy since my exchange surgery the end of January, and last week a small infection developed. So my "laziness" may be more to blame for feeling stiff. Lets hope.
Since I havent had a period since Dec 2007, on AC, I cant really compare to much. Being on the Lupron for 20 months Im use to the stiffness ect. I have learned to adapt and Im hoping that my levels of aches and pains stay the same.
Thats my update, if anything changes or I have questions you'll hear from me. So far....the Femara has been much...much better than Tamox.
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Sue: Fortunately I didn't get the hair loss or even the bone loss and it's been 5 1/2 years!! The side affects seemed to come with the years of use. I've never slept well since my first occurrence back in 2001. I had to be forced into meno in 2004 with Lupron and it only got worse. I've been having hot flashes for EIGHT YEARS!! Talk about not sleeping. I love the Summer, but when I have them in the heat, I want to pass out. At least you can go swimming! I really advocate that one. You can't sweat in the water. As I sit here at the end of the day at work, I can see the snow flakes outside my window. Looks pretty. Some things still can make you feel good. Like to see the snow, don't like to drive in it! Let me know how your doing. I still have yet to remember to pick up those epsom salts!! This stuff kills your memory too. Estrogen is good for a lot of things. Damn I miss it. Kisses to all.
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Hi Girls
I'm one of the lucky ones it would seem.
I've been taking femara for just over a year and the side effects are virtually nothing. My fingers are a bit stiff first thing in the morning and I have to watch what I eat (loose bowels) but otherwise fine.
Really feel for all of you suffering. The prospect of five years must be dreadful.
Take care
Mal x
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great info on the supplements.....I've been on Femara for a year and a half now, and the only supplements my doc told me to take was calcium and vitamin d......but I also take vitamin e b12 and a good multivitamin(with no iron) there is so much info out there on which supplements will help, any advice on the BEST ones for us bc survivors?
Also, no hair loss SE for me.....but then I'm just happy to have hair again after chemo! weight gain has been a problem tho....anyone else?
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Femara was kind of ok in the beginning, just a few aches in my ankles at night along with hot flashes big time (I never really got many hot flashes during menopause). Now, after three years it's really doing a number on me. I have hot flashes all the time, so bad that have to have the window open and fan on at night IN WINTER and I cannot cuddle with my husband because I get too hot. I can only wear the thinnest and barest of summer nightgowns. Whenever I get vaguely annoyed about anything, for example finding a spot on a shirt, here comes a hot flash and suddenly I'm an infrared menopausal old lady.
Every morning by 2 am or so everything starts to ache--my hip joints, my ankles. I just lie there half asleep too tired to do anything about it and too uncomfortable to sleep. When my alarm goes off to take my pills and I see that little mustard colored pill looking up at me I think...well, can I deal with you today? Some days I can't and I don't. Other days I do, and think about all the damage it's doing to me, aging me prematurely, eating away at my bones. I've always been a very health conscious person, keeping up with exercise, eating fresh fruits and vegetables, avoiding processed foods. It annoys me that after all this, I have to surrender to that stupid little mustard colored pill that ruins my sense of physical well being.
I am DES and I recently learned that DES daughters have a 40% greater chance of getting breast cancer after age 50 than normal women. Add the HRT risk to that, and taking birth control and you realize that caner is all about synthetic estrogens, take fake estrogens that my body didn't like. In fact, my body hates synethic estrogens so much I've developed an allergy to every kind of external estrogen that enters my body...from patches to pills to Estrace cream. I once had to go to emergeny with an anaphalactic reaction to some new kind of estrogen pill.
So my Mom took synthetic estrogens to stay pregnant, I took estrogens to keep from getting pregnant, and then I took estrogens after Menopause so I could stay young and sexy to keep my marriage healthy. And all that caused cancer. Now I have to take the strongest pills of all, the ones that take every iota and dram of the natural good estrogen that my body produces, to raise havoc with my health and my physical and emotional well being and ruin my sex life.
When will it ever end?
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Not sure if this will help anyone. Started femara in July--- had all the joint/muscle pain--- started glucosomine, vitamin d, kept exercising--- but still was stiff--- was taking meds in the am--
In the fall, moved meds to noontime--- felt a little better--- but still looked like an 80 year old when I tried to get out of a chair...kept exercising, taking vit d, glucosomine...
On Sunday last week decided to take meds at night- still doing everything else the same... Today is Friday and I have not been stiff or achy all week..... don't know why, not going to question it!!!
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me too take it at night and got to sleep about 20 min after I take it, can't get through a book, lol
Sandy
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As I posted previously, I switched to nighttime mid-January! My daytime fatigue and stiffness has diminished tremendously! And I only get a page or 2 read in books now days too.
Joni
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Sue
Been on femara since june 08 my hair started thinnig 6 month later. I am on Regain now, and my hair line is back to normal.
HH
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I've been on Femara since last summer. The joint and muscle pain is starting to kick in. Has anyone else experienced your joints popping...I mean I feel like an ad for Rice Krispies some times? Also one knee has popped out of joint 4 times now. It happens when I flex my knee sitting on the side of the bed in prepareration for getting onto my left side. Dr says that neither are from the Femara, what say you?
Thanks,
Donna...c10hitch
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I am miserable on femara, have been taking it since May 2009 after 2.5 years on tamoxifen. My onc wants me to take it for 5 years. With the joint and muscle pain, brain fog, high cholesterol and hot flashes/night sweats I am seriously considering taking a break from it. Just want to remember how I used to feel before all of this pain. Plus the domino effect of more drugs to counter the side effects is getting costly. I take an anti-inflamatory, statin, sleeping pill, glucosimine and yes pain meds when I can't deal with it anymore. I am going to try it at night and see if that helps. I'm interested in seeing the info on cutting it but wonder how to do it since it is so small. I see my onc in April and may ask to go back on tamoxifen. It was rough but not this bad.
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I have noticed that my mood has changed and I am really bitchy now more than ever!!
Sandy
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Dear Bopeep: I had no family history, no DES, but got it anyway. The dr.'s tell me that they see more cases of women with no history than with. It's all a crap shoot. They did a study a couple of years back here on Long Island to find out the reason for the high instances of BC. They spent millions of $ and came up with NOTHING. The reason more people are diagnosed is because more women are checking themselves and coming forward. Years ago you just died from it because of the ignorance. We've come a long way, but until they come up with targeted therapies for each type of cancer, we all will continue to suffer the chemo, rads, meds, etc. as that is all they know. I even had the Herceptin treatments, but it reduced my heart function, so that didn't last. At 5 1/2 years on Femara, I just recently switched to nite time as so many here have suggested and it has helped. The drawback is that the hot flashes are worse than before. I've burned out a couple of fans in the last 8 years as I can't sleep w/o it. I am living for the day when the onc says I can stop taking this. Time will tell. In the meantime, I haven't given up eating healthy as it can only help. We just had a number of snow storms and I was out there last Friday shoveling for hours. I was sore, but nothing compared to what I would have been if I hadn't switched to nights with the dreaded pill. It felt like a real accomplishment. I kept taking the whirlpool baths the two days following and doing stretches and the soreness is livable. Maybe this is a sign of improvement. I can only hope. I was just as frustrated as you, but I fought against it and will continue to do so. You can too! - Holly.
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I also started taking femara at night and it has helped my joint pains a lot. I have been taking it for 15 months. Only wish I could lose some weight. I try and not doing good at all.
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I posted here on the f-word thread ages ago and I'm back to report on the roller-coaster. I decided (after 14 months) to have a break from femara whilst I was on summer holidays. I had a lot of physical projects on, and I couldn't use my hands properly, or stand on my feet after 4pm..too painful. I could not sleep (nuclear flashes and electric-eel legs). So I stopped for 6 weeks. I felt so normal I could not believe it. Then my cancer-hostage mentality took over and I went back on them. 5 pills later..FIVE!!! I was 100 years old again. I was flashing every 15 mins plus extras for things like traffic challenges, forgotten tasks blah blah blah. But the big surprise was my head and my mind. My head felt like it was full of lead, and my brain simply wouldn't work. I had some big grants to write applications for..previously I could do this in my sleep..and I couldn't even figure out a way of starting. I couldn't make any decisions. Killer fatigue. My busted feet and electric-eel legs were back and sleep was gone. I am a teacher. FIVE tablets. So I went off them again..one week and I am feeling great. I am going to take all y'all advice and try taking them at night. But I'm also going to go and discuss other AIs because I am right on the point of saying goodbye to this treatment forever. Yep...and then freak out forever about a recurrence.......sigh........love you ladies xxx
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Kerry, may SE have been no where near what you speak of, however, I do recommend the nighttime pill taking. Good luck.
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Ladies you have convinced me to take the pill at nighttime. I'm pushing off the time two hours a day so in a week it will be at bedtime. I'll let you know if I feel a difference. I sure could use one.
Debbie
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I've been off the femara a month today. Yesterday morning my feet didn't hurt. I can actually walk now. I'm not 100% back to "normal", but I may never be after the AC and T. I think the T did a number on me, too. I still have the trigger finger. I don't know if that will ever go away. But, my hands don't hurt constantly like they did. I joined Weight Watchers 2 weeks ago, but I've only lost 1.6 lbs. I am 5'1" and I currently weigh 201 lbs. When I was diagnosed 8/08, I weighed 182. I'm having a hard time with the weight loss thing....mentally. I feel like I'm depriving myself and I wonder, for what?
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Hi Ladies, switched to taking at night and nothing changed! I'm actually getting worse, now hips and knees are aching. Still can't sleep, hot flashes terrible, getting bitchier, etc. I even started glucosamine a few weeks back and nothing yet. I hate this damn little yellow pill!
As far as the weight, I've been doing OK but really have to watch what I eat and continue to exercise. I still have at least 20 more lbs. to lose. I'd love to know wht onc would say to someone really overweight! Still not sure if I will stick with her.
Having some bad days lately, sorry to complain!
Take care.
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I've been on Femara for six weeks (I'm Stage IV, mets to liver and bone) because I'm trying not to have to do chemo for the 5th time in 7 years. Up until a few days ago, I was doing fine. Then, all of a sudden, what a train crash! It started with weight gain, then insane hot flashes, no sleep, despite Ambien CR and Clonazepam, swollen legs, pains in hands & feet, a UTI that refuses to go away and scariest of all (started late last night), real shortness of breath. This is a nightmare, I thought it would be a good alternative to chemo, but now I'm not so sure. Will it get better???
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lillian
So sorry you are having so much trouble!
KAC
You can complain to us... we understand!! Sending Big HUGS to you, my dear! Sorry you are having so much trouble.
Jane
Sorry you had so much trouble with Femara... I am glad that you are starting to feel better. Sending you lots of positive thoughts and encouragement... When you are able to walk, you may find the weight loss will follow... Hugs to you, my dear!
Eph_3_12
Hi there... good to see you again!!!
Debbie
Good luck with switching to night... I take Femara at night and it does seem to work ok for me.
Hope everyone is doing ok.
Hugs
Harley
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Holly, What's DES?
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Holly,
Thanx for the empathy. I am having an awfullly hard time with Femara and it bothers me because I think the pain are a sign that the drug is doing real damage to my bones. And my bone density has has diminished a lot since I start 3 years ago. The first two years weren't really bad. This past year is different. My oncologist actually suggested that it might be time to stop; my PCP really wanted me to find something else I could take after looking at my bone density and calculating my risk of having a major fracture.
What I am doing now is skipping a pill every 2 or 3 days. I am thinking about stopping altogether. I had a small lump and all clean nodes and when they did the re-excision they found absolutely zero cancer. I think they got it.
You know, I wish I had the option now of getting both breasts removed, just for safety's sake and for not having to take Femara any more.
Bopeep
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Bopeep
Did your oncologist suggest skipping pills, I wonder if it can be effective that way,I was thinking of doing this myself instead of going on Tamoxifen as I'm loosing bone at a fast rate. Thanks
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I've been on Femara for 2 months now - some joint pain, fatigue, leg/feet swelling. Very very dry skin (like I am constantly using moisturizer) and "down there" dryness/itchiness. Some days worse than others.
I hope the warmer weather will improve the s/es.
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Weiga,
I really don't know what is effective and what isn't, and I don't think the doctors know either. They simply read the abstracts of the research studies which are so many women taking the medication on a standard dose. I don't know how they come up with the dose or even if they have done any research to figure out how different doses work. I just figure I'm giving my bones a little bit of a break now and then and resuming the medication and hoping it works again..
New research is being done all the time and it often contradicts previous research, for example, the news in 2007 that adriamycin was really effective for a fraction of women who have a very specific form of breast cancer. This was devastating news for lots of women because for decades women had been taking adriamycin-- a very dangerious drug that can damage the heart, among other things.
Another example on how poorly these "experts" perform...remember the big fuss last year about how drinking alcohol is supposed to really greatly increase the risk of recurrence? Well I went into the original research and read the paper and it looked to me like the researchers had made an arithmetic error in interpreting the data. From what I could see from the numbers they reported women who drank only increased their risk of recurrence by only 1.1 percent, not the 11% as reported... I emailed the article to my oncologist who BTW is a cancer research scientist herself, and after she read the article she agreed with me that the writers had misinterpreted their data.
Not every research article is accurate and some of these researchers make mistakes. Too often the professionals who make decision only read the abstracts and not the full article.
Anyway, my surgeon really thinks I am over the danger period, I'm starting my fourth year after the initial dx and he says the danger period is really the first 6-24 months. So I'm not going to worry about it too much! Live and let live. Enjoy life..that's probably one of the best things you can do and don't obsess too much about it.
Bopeep
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Bopeep-er, loved your last sentence
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i'm still here.. Femara's not too bad, but my fingernails are splitting.
they are sooooooooooooooooo short
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Yah Eph, we only get one life and we're all gonna go sooner or later, so why waste the good part of it worrying about the bad part!!!
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My shoulders used to be very straight horizontally and after three years on an AI, they slope more (unattractively). I haven't gained much weight--what I have has been abdominal only. Has anyone else experienced a change in shoulders like this? Is it AI's or just being post-menopausal now?
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Hi Gals,
I stopped taking the Femera 1 week ago today and I feel great. Way to Much bone pain for me have an appt with onco to discuss other options.
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quarter 405
Good luck with your onc appt... there are other options. You could always take Tamoxifen, too.
Harley -
Eph3_12 - To answer your question, DES was a synthetic estrogen that a lot of women took back in the late 50's and early sixties. It was only years later that "DES" babies were showing all kinds of probs because of it. The weather is very much improved here in NY and it feels great to get outside again. I even played around in my garden this weekend to prune back all the dead stuff and even washed my car. I felt great doing it. Winter is definitely an enemy when you're on this pill. I don't think that once you are on Femara, it even makes sense to go back to Tamoxifen as that is only a "blocker", not an inhibitor. Even though I may hate this drug, it's all I have right now and after 5 1/2 years on it, I have to see it through to its conclusion. At least now I can get out there and recreate, which makes me feel so much betta! Have a great day (even though it's Monday)!
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HollyHates...
I agree with you... I think that in the Winter months, our se's will be worse... I'm so glad that it is starting to warm up here!
Also, it makes sense to me also that the AIs are better at preventing bc recurrence. While I hate the long term effects: The osteoporosis and the elevated cholesterol really scare me!, at least I feel secure in the knowledge that this drug is not only blocking the estrogen, it is eliminating it altogether. But... do we end up as shriveled up old women, at the ripe old age of 47?Harley
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I was fine on Femara the first 2 weeks. Now, I'm getting bad SE's. I also switched to taking it at night because I felt fogged headed taking it in the morning and a little nauseous. Last night I had bad bone pain. My left upper arms hurts daily like I was lifting weights. I also had a lot of bone pain in my shins, arms & sides last night. Will discuss with my onc on the 18th. I was hoping they could lower the dosage.
Terri
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TerriWelcome...
Sorry you are having so much trouble with Femara. Please let me know what your onc says on the 18th... and if they offer you another option...
HUGS
Harley -
Eph, I am also thinking of stopping Femara. I have been in so much pain at night that I can't sleep and aspirin doesn't touch it. If I take a Darvocet I sleep but I wake up groggy all day and it's constipating. And then I have a weight gain and bloating and stomach problems and I have to take a laxative, which gets my body of a gear in another way. I hate taking so many drugs; when you take the pain killers and muscle relaxers they make you sleep, so when you stop, then you don't sleep. I am also really sick of the hot flashes. Yesterday I didn't get out at all even though it was beautiful outside and I wanted the exercise; my joints and back were too stiff even for a walk.Did yall see the research news on aspirin? Taking one aspirin several times a week can reduce your recurrence risk 40 - 70% I believe. Even Femara doesn't do as well. Other things that improve your survivability are staying slim and exercising, You know, I want to get the best out of the life I have and I would enjoy it a lot more if I felt healthy and physically toned up, not to mention how it would feel to look better.My new oncologist suggested I consider stopping Femara even though it's barely been three years. Femara is so new I am not sure there is much research on women taking it for over two years. I am also wondering about the negative effects on overall health and morbidity from taking Femara--it is such a severe drug I would not be surprised if it increased risk factors for other diseases. Did you know that many elderly women die from hip fractures?Question for all of you: How long are you supposed to be taking the AIs if you have not taken Tamo?Bopeep
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Harley: I used to feel that way too, like I'm not old and I don't want to feel like it! The Vagifem helped a lot with that and I've been fine on it. I know that a lot of your Onc's out there don't want you to take it, but my gyno said the risk is so small and it "stays" where you put it, so it doesn't travel into the bloodstream. She even suggested not to tell the other dr. about it! Ahhh but the quality of life is so much better. Never resorted to pain killers. The only other thing I take when things are bothering me is Advil PM as it knocks me out and I at least get some sleep.
To all the rest of you: I know this is a relatively new drug, but I've had two occurrences before I started this drug and have been clean for six years since. I can't wait to be off it, but am cautious at the same time. It's a catch 22 i'm afraid. As soon as that new study is released on the Femara protocol, i'll be the first to report on it! After 5 1/2 years on the stuff, believe me I want to be able to stop using it!!
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My onc switched me to Aromasin, so we'll see how I do on that.
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Bo
5 years but studies under way may suggest more. I had bone pain, muscle pains, and stiffness for the first year then I took Zometa and Calcium and vitamin d3 I am a lot better now. Hang on there.
HH
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Holly
Well, I only started taking Femara jan 1st... and so far so good... but I worry about those other long term se's.
My onc seems to think that we can take AIs FOREVER... not sure I think it's safe to take them FOREVER....
Harley
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...oh, and the topical estrogen, my onc thinks it's ok... but... my gyn won't prescribe it...
Harley
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My onc told me Femara for 5 yrs. I had no Tamoxifen. I'm still doing better taking the pill at night, but I have been stiffer lately during the day-not bad enuf to stop though.
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Joni2
Glad that you are doing ok with Femara. The switch to night seems to have helped you. Good to see you posting again!!
Hugs
Harley
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I have been doing a lot of web research on the timing and risk factors in breast cancer currence because I am thinking about stopping femara. Here, for example, is graph of the relative risk based on years after surgery published on the Arimidex website.
Risk peaks during the first two years after surgery and then declines sharply.
And here is a very confusing blurb about Femara from the Femara website. While Femara is supposed to reduce BC recurrence, it does not increase survival.
What does this mean?
To me it means that (1) either the length of time for long term studies of survival rates on women who have taken Femara has not elapsed yet, or (2) there there are other factors involved with the taking of Femara that negate the benefits of BC recurrence risk.
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bopeep
I'm confused... is this graph supposed to mean bc survivors who took Femara, or untreated? Because, it says *.... UNTREATED is the little square... Sounds confusing to me....
Thanks for researching this. I'm just trying to understand it.
Harley
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I have been taking famera for 2 years after 1 year on tamoxifan, I feel like I am 90 years old. My joints hurt, my shoulders hurt, and my hair is thinning. I am going to the onc. tomorrow to see if there is another option for me. I cannot take this much longer. I have three children and after working all day I barely have the energy to spend any time with them. I want my life back.
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Bopeep
Thanks for your answer (march 4) I just asked because I've hear of it before on this board, spliting pills or skipping days. I always though also it was reasonable to think not everybody needs the same dosage as we do not react the same or have the same weight. You are right in doing what's best for you.
When I had adriamycin I could not breathe anymore so it is really bad that we had to experience it withoug knowing the nasty side effects.
And it's true that researchs contradicts each other, on top of making typing mistakes, makes us wonder all the time if we are doing the right thing.Live and let live and enjoy life is something we have to try to do great advice, have a nice day
Welga
have to catch up on the last messages, so sorry if i'm not uptodate on your other posts -
TO ALL THE WOMAN THAT ARE HAVING SUCH A HARD TIME FEMARA AND ARIMIDEX LIKE JOINT PAIN AND HOT FLASHES. I TOO TRIED BOTH MEDICATIONS I DID HAVE HAIR THINNING ALSO JOINT PAIN SO BAD I COULD HARDLY GET UP MY STAIRS. THE HOT FLASHES WERE SO BAD I WOULD SOAK THROUGH MY SHEETS. I HAVE BEEN OFF BOTH DRUGS FOR OVER 6 MONTHS AND FEEL SO MUCH BETTER NOW. MY DOCTOR SAID, SOMETIMES THE SIDE EFFECTS ARE NOT WORTH IT. WE ALL NEED A QUALITY OF LIFE. MY DOCTOR JUST WATCHES ME MORE AND SAYS IF THE CANCER COMES BACK THEY WILL GET IT EARLY. AT LEAST I CAN NOW GET UP THE STAIRS. I BELIEVE TAKING THE PILLS WERE WORSE THAN THE CANCER. I GUESS WHAT I AM TRYING TO SAY, FOR THOSE THAT CAN TAKE THE PILLS GREAT! FOR THOSE OF YOU THAT FEEL LIKE YOU ARE 100 YEARS OLD ON THE PILLS TALK TO YOUR DOCTORS ABOUT NOT TAKING THE PILLS. AFTER CANCER WE ALL KNOW HOW IMPORTANT IT IS TO LIVE EVERYDAY. SO DON'T BEAT YOURSELF UP IF YOU CAN'T TAKE THE PILLS.
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Harley,
You are certainly justified in being confused, I'm confused. My first oncologist was someone who never offered any information, and answered my questions with the least information possible. Patients were dosed out little bits of information on a "need to know" basis. The fact is, is that the doctors and the research they read (really, I don't think they read more than abstracts), and the researchers actually lack the time and intellect we assume they have to make the right decisions for us. The basic approach is Clobber 'em with MEDS. If a pill works, more is better than less, and pills are the easiest way to treat patents. God forbid touching, massaging, dealing with life style issues, eating, all that. Make it neat clean and clinical. And what is more clinical than a pill? It can be measured by dose and makes it easier to generate numbers for research studies. How can you measure things like good diet, fresh air, general well being, or spiritual and emotional fulfilment. You can't. But just because you can't measure these things doesn't mean they aren't important.
OK, I got a little carried away there but to get back to your question about how to interpret the charts, the first chart I suppose--deals with unmedicated patients. But where do they find "unmedicated" patients since the current research ethic is that women included in research studies cannot be excluded from treatment if they have cancer. I don't know what how accurate this graph is or where they got the data for it. They certainly don't cite references. But I think it is fairly well known that the risk of recurrence diminishes drastically after year 2.
In order to make educated decisions about the long term difficult and painful treatments we are forced to undergo, we need to know what the risk factors are for *each* year after surgery and how it declines. Certainly if the risk factor is declining drastically after year 3, why accept the lower quality of life that goes with Arimidex or Femara or Aromasin? And WHY put such emphasis on these expensive prescription formulations when taking something as simple aspirin can be 2 to 3 times more effective at preventing recurrence? Femara advertised its risk reduction percentages from 21 to 27% but the aspirin study showed a risk reduction of recurrence of 71% percent.
The reason for all this mumbo jumbo and confusion is the fact that the medical industry is propelled by the pharmaceutical industry, and that the treatments that get promoted are the ones that provide the greatest profit to the pharmaceutical companies.
It serves us all to be better educated about the medical industry and to be more in touch with what is really important in our lives--quality vs. quantity of life, and the link between emotional and spiritual well being and physical well being.
Bopeep
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Well said Bopeep!
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62 years old here! I have been on femara for six months. I'm sleeping well. I exercise 5 to 6 days a week, aerobic and weight (at least 3 X per week). I'm 5' 8" and weigh 138 pounds. I bench press 50 to 60 pounds. The concern in treat breast is GONE! It was small, definite lobular, but disappeared. We don't know what it was because it disappeared too quickly to analyze. Do I take supplements? Yes. I'm drinking a ton of green and mostly white tea, as well. We can find excuses for not exercising, eating well, or managing our lives. Certainly, there are plenty of reasons. However, break down what you know that needs to be done in a list and make an appointment with each item on the list that might help you. It will add up. The most important thing is to develop consistent good habits and break the bad ones. Look, I've got metastatic breast cancer. It's not curable. But I have a chance to hang in there as long as possible, and I'll do whatever I can. It costs nothing to take an hour walk, no matter how cold it is. Those who are experiencing hot flashes will welcome the cold weather! And you can buy 5 lb dumb bells and do a ton of weight exercises. Doing push ups is great. Begin with a little bit and keep a journal. Work up to more.
None of us can be certain how long we have. Look at Haiti. Look at the folks in Chile and elsewhere. 30 seconds can make a difference. Most of us have much more time than 30 seconds. Make up your mind to make a difference and improve your condition.
I recommend reading Russell Blaylocks book/s.
For women much younger than I am, talk to your physician about being tested to determine if you effectively metabolize Tomoxifen. If so, the benefits are likely the same as for femara. Same for older women. I metabolize Tomoxifen poorly and am not a good candidate.
Many of the supplements that treat joint inflamation and arthritis counteract femera symptoms.
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bopeep,
I agree with you that we should be told our % risk for recurrence for each year... On Monday, 3/15, it will be THREE years since my bc dx...
But, the aspirin thing... I read, and that wasn't a study they did. They just sent a survey to women asking if they took aspirin. And they don't even know the dose that the women took... it wasn't monitored... they may have lied on the survey... I would need to see some REAL studies done. A friend told me that the low dose aspirin is enough, but the truth is that they just don't know.
So... I continue with the Femara...
Harley -
I have my appointment with my onc. next week and I am going to ask him about taking the aspirin. I asked my GP about it on Monday (have another UTI, oh joy, oh rapture) - She said you have to be very careful with just rushing in and taking aspirin, even the 81mg. dose on a regular basis - there is always the risk of gastro bleeding. But I will see what my onc. says and report back.
I am also going to ask him about getting a Zometa infusion - when I saw him in the fall he thought it would be a good idea, but I wanted to wait until I started the Femara. I will probably book an infusion in April or May.
I also made an appointment with a clinical dietician who specializes in breast cancer patients, as I have gained about 25 lbs. since starting the Tamox. and Femara - it will be interesting to see what advice she can give me.
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I'm BAAA-AAAAACK!!! Well..what a difference a night-time pill makes! After quitting femara FOREVER, I had another few days break and then started taking it at night. I have not been taking the glucosamine and fish oil, and have been taking the D3s with sliced cheese. I CANNOT believe the difference in taking it at night. I have no pain, I repeat, NO pain. My head is coming good; I think this is because I am sleeping. I actually can't believe I am sleeping! I have remembered the very earliest conversation with my onc about calcium tablets and through the haze came "...see how you tolerate it....". I'm thinking that the supplements might have been causing me some problems. I have to deal with this issue, though, because of the bone loss etc etc.....sigh.....BUT at this stage I can do the femara thing for now at least, and don't feel quite the hostage I did 10 days ago.So, THANKS to whichever of you girls said to give night-time a go. Hot flashes? Yep..but not bad enough to keep me awake all night. xxx
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Caya
Yes, please ask your dr. about the aspirin, and report back. I read that low dose aspirin wouldn't be enough to prevent recurrence... therein lies the problem... who knows how much to take?
kerry-lamb
Oh, I'm so glad to hear that you are doing good with the change to taking Femara at night. I also take it at night, but never thought it would make a difference. I'm hearing from others that taking it at night really does seem to help with the se's. Maybe that is why I am doing ok with it.
Harley
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Kerry, I'm so glad that you can tolerate the Femara now that you are taking it at night. I started it at night, because I had read that it can help with sleep, and lessen the side effects because you are sleeping. I still have some aches and pains, find that I am very stiff when sitting in one spot for a long time (like at my computer desk chair, or a long car ride). But I really want to stay on Femara, so if this is as bad as it gets, I can def. tolerate it.
Harley, I printed out the the whole aspirin study, and will def. discuss with my onc. and report back. I see him next Thurday - March 18.
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I have to agree- since I started taking it at night I have almost no side effects in the joints/muscles--I still get a little stiff when sitting too long, but nothing like before when I had to literally hang on to the table to get myself up--now I can pretty much hop right up!!! Still working on the vaginal dryness.... but I am hopeful that this new development will last until I no longer have to take this drug (which is in 51 months!!!)
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Hi ladies,
I too have switched to nighttime. I did it by delaying the femara by two hours a day. It took 6 days but since then I have been feeling pretty darn good. Maybe it is psychological or not but whatever, it is so much better. I have had some hot flashes mostly just after I get into bed and under the covers but they are minimal. I also have stiffness while sitting too long but by getting up slowly it goes away. I do however have another problem I didn't have before. I have been spotting and don't know if it something serious or just because I had delayed the femara last week. It is minor but I think I'll call my doctor tomorrow just to be safe. Anyone else have this problem?
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Harley,
The fact that women were queried about their aspirin usage after the fact does not make it less of a study. How would a controlled study of women taking Arimidex or Femara be different? A nurse does not come to each study participant's house and administer the medication. The medication is prescribed and the researchers assume that the study participants take it; no one is there to witness and document the taking of the pill. Since when did you or anyone else here ever totally finish a bottle of prescribed medicine on time?
Why on earth would anyone want to lie about taking aspirin?
???
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does anyone have any suggestions on what i can do for the thinning hair, at this rate i will be bald before my femara time is over.
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Wow a lot of discussion since my last post, mostly about the aspirin factor. I'm going to keep checking to see how this comes out as I am VERY interested. I am an old timer on the Femara, but this really intrigues me. What if you are the type to bruise easily as I am.? Won't taking the aspirin make it worse? I've also had capalleries just break in the strangest places since taking this fun pill and its not attractive. What other havoc can it possibly reek? I agree with the fact that after 2 years your risk declines as my recurrence was only 18 mos after my initial diagnosis and it's now almost 7 years since then and I've been fine.
Harley - Don't understand why your gyno won't prescribe the vagifem. My was so sympathetic and wanted me to have a better quality of life. Anyone that tells you that intimacy isn't that important in your life is an idiot. No-one wants this type of control over their bodies. Isn't it enough to go through all the horrible treatments we are put through. Sorry if i'm rambling, but you would think medical science would have a better grip on this by now. Just read the other day that they've tried a new treatment of quick freezing the tumors in mice and that eventually the body killed it off. That sounds like something positive to follow up on. Unfortunately for me there wasn't a single tumor to deal with, it was a cluster of calcifications. At least it's something new.
I agree with a lot of you that the dr.'s seem indifferent to the SE's and we should just suck it up and take our little pill. On the other hand you feel insecure to do anything else as THEY are supposed to know more than you. It's also nice to hear all the positive feelings about the nite time pill taking, me included! I suffered for years and never knew I could feel so much better. I'm going to try Yoga next! Remember, we are our own advocates and should continue to be so! XXXOOO to all.
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Stephanie
My hair line is better with Regain ANA Rogain ANA HairBack women formula is Minoxidil 2g/100ml. good Luck
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Caya
Would you let me now what the deitician says no one here is experienced with BC patients on Femara.
HH
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Holly
I agree with you, on the aspirin thing. I also bruise easily, and would worry that I'd have even worse bruising problems if I took aspirin. Again, they also do not know what the proper dose of aspirin would be, in order to take aspirin as a preventative med... since it was only a survey they sent out, and women replied that they had taken aspirin for aches and pains, that is quite different than taking it Each & Every day. And, from what I read, we would need to take more than the low dose aspirin if we want to take it to prevent recurrence.
I will ask my onc about it when I see him again. It won't be til June.
Harley
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HH - I will def. report back on what the dietician says. I'm seeing her right before I see my onc. on Thursday. He told me last Sept. to lose weight, and I tried, but since being on the Femara - Jan. 1 - it i just not coming off. It's very discouraging.
Caya
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Has anyone gotten headaches with femara? I started femara in November and just had a few minor aches and pains, nothing really disturbing. But now it seems like Im getting quite a few headaches. Im also wondering if the headaches are related to my bone medicine Actonal which I have been taking every Saturday since January....because every Monday I have a terrible migraine on one side of my head along with severe neck pain. I was thinking it was the Actonel because...why the headache every Monday? Could it be the femara along with the Actonel?
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Okay where are the tamox ladies. help I am 9 months out lumpectomy chemo(onco was 21) rads and have been on tamox for about 6 weeks, I kicked butt during my tx never missed a day of work no side effects except the metal mouth. is it really true about joint pain i swear i feel like it in my left knuckle and a ache in my rt hip. please say it isn't mets i am st 1 no nodes started wed and comes and goes. i have also been working on diet lost 23 lbs so far. any words of wisdom does it help to take it at night?? I am 39 er pr+ so i would like to get the benefit from this tamox but the worry is going to kill me suggestions words of wisdom!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! ps had a pet scan back at dx and showed no skeletal lesions.
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Did anyone lose their eyelashes and eyebrows? Also did anyone have swollen eye lids from using femara? I have been using Femara for only a month and notice that my eyelashes and eyebrows are almost completely gone! I was wondering if it could possiblily be the RAD treatments? I am doing RAD's right now as well as being on the Femara drug.
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Last night I had a first, an entire night without waking up from being too hot and from pain that wouldn't quit. No pain at all. I am rested and I feel good and looking forward to a good day.
Caya, on the weight problem. My suggestion is to get things in hand by keeping a food diary for three or four days and noting everything you eat. Calculate an entire calorie count. If you are eating over 1200-1500 calories a day and not getting exercise you cannot lose weight. To lose weight you need to add exercise, even if it is nothing more than a 30 minute walk every day. Whatever exercise you do make it something you enjoy for other reasons. Also reduce your calorie intake. Make up a daily meal plan based on a high protein diet. Eat fruits for snacks instead of crackers, bread or processed foods. Keep your carbs down to under 100 calories per meal, for ex, 1 small piece of wholewheat or pumperknickel toast, a half cup of rice, a very small potatoe (or half of a larger one), or substitute a starchy vegetable like squash. Eat 6-7 portions of fresh fruits and vegetables each day. The more color you eat, the higher the nutritional level. Sweet potatoes, for example, are better than potatoes (and much less glycemic). Dark green vegetables like spinach and broccoli are better for you than white asparagus.
And here's a trick that will make it all very easy...a serendipity for me. I started taking Wellbutrin last fall to combat the effects of chemo brain. I was tired all the time, unfocused, depressed. My house was a mess and I wasn't getting much done. The Wellbutrin had a dramatic effect: within weeks my house was clean, drawers began getting organized, and messes in closets and hidden places that had developed over a five year period beginning with cancer treatment began to disappear. Best of all, I had much increased energy and much reduced appetite. I am now too busy and happy and engrossed in what I am doing to take food breaks.
There is reasoning behind this, and you can probably find the research on this website; studies have been done to show that chemo brain is real and presents much like ADD. Women who were given ritalin (the medication for ADD) responded dramatically, within a few weeks. My doctor didn't know much about these studies and didn't want to prescribe Ritalin, but she did know about Wellbutrin, which has some ritalin-like components. It worked quite dramatically for me.
Good luck on your quest!
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Ladies - It looks like I'll be switching to Femera shortly. I came back as a poor metabolizer of Tamoxifen and so would like to join this thread. Although I intend to read thru the entire thread, I've got 2 threshold questions that I'd appreciate being answered directly, for those of you also getting ovarian suppression shots,
1) what's the lag time between getting your first ovarian suppression shot and starting an AI - can they be done together ? Wait a month ? Or...?
2) How did you decide between monthly shots and shotes every 3 months ?
Thanks.
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Chris
I had the DXA results no BMD lose this last 6 month folowing the Zometa, although I lost 30% in one year of femara alone. I take 1000 calcium and 1000 d3.
HH
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HH - Thanks. I get my scan on 4/6. Hoping for the best. I am taking calcium and vit. d and magneseum.
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Chris,
Good luck with your scan... You are in my thoughts and prayers.
Harley
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Thanks Harley, I'll let you all know how I make out with it.
Chris
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HensonChi - Yes, I've been on Femara since June 2009 and I've had a never-ending stiff neck since then. I did chemo March - June and then radiation June - July. By the end of the radiation treatments my neck was so stiff I could hardly turn my head or drive. I had always attributed the pain to the position I was in for the radiation treatments (arms held up very still overhead for 10-15 min.) but after reading some of these posts, I'm wondering if it wasn't the femara! I've been going to physical therapy since November & am now taking a break. My therapist is very surprised that I haven't made much progress so far. She says my muscles are stiff - almost leatherlike. Yuk!
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I started taking femara at night it has helped me .I am not as stiff and achy as I was taking at morning.
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NonniO
So sorry you are having so much trouble! Hope you are feeling better soon!
Nanna
I'm glad that taking Femara at night has helped you.
Harley
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I stopped Femara a month ago, after 9 months, because i couldn't tolerate the pain. I have fibromyalgia, so some of the pain could have been from that getting worse.
Then I had a blood test, had asked for vitamin D to be included, and lo and behold the D level was only 18 out of a new standard of 50 - 80. I found a medical article that came out only a week ago which said the formula to increase D level is for every 1ng/mL you are low, you need to add 100 units of D to what you are already taking.
I was taking 1200 units D already. So for 18, I had to add 3000 units a day just to get to 48. That's enough for now since the weather has changed and I am getting out in the sun most days. I will have the D level checked again when I get another blood test in the late fall. I expect to have to go higher then since our bodies don't store D very long.
Increasing my D level dropped my muscle pain by about half overnight. Unfortunately it didn't help my bone and joint pain, but that is partly arthritis.
I took 3 pills of Aromasin and immediately had trigger fingers, which is the reason for the "vacation." That side effect is very slightly better after 3 weeks off. I will consult pain clinic about injections.
I am planning on restarting Femara after I've been off AIs a month.
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Alcie1
I've been on Femara since Jan 1st, and I seem to be doing ok with it. I have a few extra aches and pains, but nothing I can't handle.
Good Luck with Femara. I hope it works for you.Hugs
Harley
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Harley - Thanks. I started Femara in April last year, when there was sunshine, and I had little trouble with it for a long time. Then over the winter the pain got worse and worse until I couldn't stand it.
I thought the increasing pain might just be a cumulative thing or maybe a fibro flare, but now I am hoping it was just due to low vitamin D.
Having tried Arimidex and Aromasin with disastrous results, if retrying Femara becomes intolerable again I'll just give up on AI therapy. It makes no difference to the doctor or his nurses.
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Hey Girls, haven't posted for a couple of weeks. I had mentioned aways back that I felt so much better in the warmer months. I too after my last blood work showed low "D". My doctor prescriped a super "D" pill, I think it's called Strovite. It's huge like a vitamin pill (oh great more pills!), but I do feel better. We had some beautiful Spring weather here in NY over the weekend and I just sat outside with my face in the sun. It felt sooo good. This along with the PM Femara has made quite a difference. I too get occasional nasty headaches, but with all the different things we are taking you just never know what's causing what. I feel more achy when it's rainy and cold, etc. Thus I am VERY happy Spring is here. Will be even happier when the onc tells me my almost 6 years on Femara has ended! Hopefully this stuff doesn't cause permanent damage. On the weight front, have gained almost 30 lbs since chemo, rads and 8 plus years from Tamoxifen through to Femara. I never had any problems with weight and always ate healthy. Now it's a struggle which is very frustrating. At least with the pain at bay, I feel more like doing things and look forward to getting outside and walking, biking, etc. I have 2 tubby dogs that could use the exercise too!
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Alcie 1, and Holly Hates...
Glad you are feeling better Holly!
I also think that we will find it easier during the WARMER, Spring and Summer months! It's a theory of mine... I had some arthritis issues with my fingers several years ago, before my bc dx... It only happened in the Winter months, and I really think that the colder temps is what trigger these kind of problems.
Hugs
Harley
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Harley,
I'm the one who had some severe bone pain after 4 weeks on Femara. Strange, but I only had it one night. I'm fine now, but my onc did take notes on this. I'm still taking it before I sleep. I feel a little stiff and I'm trying to get more exercise in and some yoga for more flexibility. I get my pet scans every 3 months and will have this done again April 5th. I'm confident I will know soon if it's working or not.
Terri
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I have been taking it since 12/8 and it is ok, told the dr. today that I am tired, but mostly do not have alot of energy, have been lucky with the losing of thing.
Sandy
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Dr. said that the Femara is working better than chemo would have.
"Since the prior study, significant improvement in the size of the right chest wall metastasis and to the extent of hilar or mediastinal lymphadenopathy...(didn't know it was in the chest wall, they said "under the pectoral muscle, didn't say anything about the chest wall!!) Since tiny intrapulmonary lymph nodes are noted along the tissues of both lungs. The majority of these have been stable since the prior study, although there are a few which appear only slightly more prominent than on the prior study. The significance of these finding is not clear.. There are no definite parenchumal nodules of concern for parenchymal metastases. (Guess that is a good thing, it is not in the lungs, yet but there are nodules which he said aren't big enough to biopsy yet.)
Stable appearance of 3 nodules along the right minor fissure the largest of which measures 5mm in maximum diameter (not that big, but there). Also stable appearance to several nodules along the left major fissure. Slightly increased prominence to tiny nodules along left major fissure as well. There are 3 lymph nodes that have gone down with the Femara one by 50%, 67%, 62% and the subpectoral metastasis went down 60% in 3 months,
Thanks for reading!
Sandy
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ibcmets,
I'm glad you are doing better with Femara.
Sandy,
Glad that the Femara is working for you!!
Harley
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I started taking femara at night time about 1 month ago. I cannot believe the difference .I have very little joint pain now sleep has improved. I have been taking it for 16 months. what a difference it made by taking at night time
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Hi ladies! Am a Femara newbie (on Tamox for just under 2 yrs.). I have been taking Femara for about 12 days and am noticing a very itchy skin rash. It appeared on my left hand this morning and seems to be moving up my arm . Actually now it is on both arms. Just wondering if anyone has had this type of reaction. I am trying to figure out if it's the Femara or one of the other lovely drugs that I am taking. Yikes!!
Ellen
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fritzellen, I have no experience involving a rash w/Femara. I'd call the doc! Joni
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Been taking femara for almost three months. Knock on wood. No side effects to speak of. It helps that I already had foot pain, ankle pain, tingling hands, sore back - so if femara caused any of that, I wouldn't notice anyway! Actually feel better since taking it, but I attribute that to regular yoga practice.
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Hello all, Been taking Femara only 3 months with no noticeable SE. Could it be that because I am 72 and the change Is a fog in my misty mind, that so far things are going good? Or will it take longer to build up in my system. Don't even seem to have anymore fatigue than I did before. Is there anyone out there that is my age on Femara??
Wish I could give you all hugs and make things better.
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Kayok,
I just turned 72 earlier this month and am also on Femera,and have been on it since June last year.My biggest and most annoying problems are my hands and feet.They are ok for the most part when i'm moving around,but let me sit in my recliner for a power nap and they both hurt so much i can't sleep more than a couple minutes.My fingers,the palms of my hands,toes and feet in general hurt too much.My right arm gives me problems all day and night ,i personally think that is from the lymph node removal,and the damage that may have been done to the muscles and tendons.I go to a new dr for that next week.
Also noticed that my hair is falling out again as well,not as much or as fast as it did during chemo,but falling non the less.It didn't come back in as thick as it was b4 chemo in the first place,but having it falling out again is very depressing.
I'll accept your HUG and pass it on.Thanks
Kathi
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Kathi and Kayok, could I just say that I am honored to be reading your posts here. You gals have a bit of age on and that is what we all fantasize about!!! Kathi I have the same problem as you so I take a simple painkiller (paracetamol mostly) 15 minutes before my nana-nap and I nap without interruption. Thanks, you two, xxxxx
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61 and counting and I do think there is some research that shows the further you are away from menopause, the fewer the femara side effects. Makes sense, since you are already estrogen depleted, so the change is not as dramatic. Good luck to all.
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I was glad to find the info. on Femara. Started taking it a week ago and so far so good. My toes do seem to get numb. I am not sure if this is as a result of the chemo that I just finished up on Feb. 11th or Femara.
Barb
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I am HURTING from the Femara after almost one year of being on it. My hands hurt so bad. I can not open my hands in the morning. Throw in the hot flashes, weight gain, joint pain., not sleeping..and the trigger finger. It is not getting any better. I find it interesting that the trigger finger is more prominent in the MIDDLE finger...could it permanently be held in this position?? As if it was saying F^&% You Cancer....
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Hello everyone, I haven't posted for a good while. Dr; had prescribed advair for my breathing problems (se from the femara) and my system just could not tolerate it. Breathing got so bad that a walk from the living room to the bath room got me down! It even made my arms and legs hurt. Quit taking it and after a few weeks, am feeling better. Went for a check up last week and it was just wonderful. Everything was just perfect; so I know I am beating this cancer once again. The side effects of the femara are worth putting up with.
In regards to the arm hurting and you think is is from lymph node removal. It probably is because this happened to me. My dr prescribed a lymph press and it works wonders. It is a vinyl sleeve that fits all the way up to the top of your arm and when you turn it on, it massages your entire arm and works the fluids out.
I think my worst side effect now is the thinning of my hair. I am taking biotin and it helps BUT I am still thinning. Seems like the top is worse than anywhere else.
I feel so good now that if it wasn't for having 2 bulging discs in my back, I think I could do most anything!!
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Hi Ladies,
I have not posted here for a little while although I have kept a watchful eye as I learn so much from all of you. I had a short break from Femara as I was switched to Arimidex but that caused too many problems with constipation, the bane of my cancer treatment life LOL. That has been the biggest SE of all, other than the usual aches & pains and looking & feeling like your 90 instead of 45.
Can I ask if any of you have problems with skin issues on your feet, particularly the toes. At first I thought I had athlete's foot around 2 or 3 toes but I have tried all those treatments and they actually make it worse. I did read somewhere about HAND & FOOT syndrome which can happen during chemo, but my feet were fine during chemo and also when taking Arimidex but as soon as I restarted Femara it has flared up again. The skin gets like a bubbly rash, gets really dry within a few hours and then cracks open. I have followed the instructions for hand & foot syndrome by using a moisturizing lotion and that does seem to help. Just wondering if this yet another SE of the little yellow pill. I know Herceptin also can cause skin problems, I had my last one of those in October 2009, my nails are still splitting & cracking, and my hands feel like sandpaper most of the time - that's after using hand cream. Any ideas, anyone else had the same problem?
Well, that's all I have for today. I hope you all have a wonderful and relaxing Easter weekend.
Love & Best Wishes
Gaynor
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Definately have a thought here, and you may shoot me if you wish....BUT:
Since Femara is for us older ladies, and you younger ladies are being either surgically or chemically put in to menopause....I'm wondering....do you think that this has a lot to do with your pain? That you aren't in a natural menopause situation, but a forced one? Make sence? Stupid question perhaps, but I possed it to my pcp the other day as we were talking, and she said she has asked others the same thing, and really can't get a straight answer. I'm 58, have had a few problems, but NOTHING compared to some of you. I think I posted early in this thread, and you can find me there, but if not, pm and I'll go through it again. One thing that does help is moving. Even if it's simple stretches, try and move. Chondroitine also helps, but it takes awhile to get into your system.
Question for gauleyeagle: If you are ER NEGATIVE as it says in your signature, why did your doctor put you on Femara, as this drug is typically for ER POSITIVE ladies?
Wishing all of us the best,
Jennifer -
Jennifer, I do believe that was my mistake on the ER negative. Sorry for any confusion.
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Oh, ok. I had an onc. who told me I WAS ER- at the beginning, and put me on Femara anyway. When I left him and went to my current onc., she told me I was ER/PR positive. No one knew why the idiot said such a thing. Was just wondering if another dr. did the same as mine!
Not confused, just curious...that's all~! -
I was on Tamoxifen from last Dec. -- found out I was in menopause so started Femara about 3 weeks ago. The day I started Tamoxifen, I swear my knees started hurting. The day I stopped it, my knees stopped hurting as much, my hot flashes lessened. I fees SO MUCH better -- am I just in the honeymoon period w/Femara and the pains will come back, or am I really going to be more comfortable? I exercised on the Tamoxifen and through my radiation -- I was prepared to live w/the extra pain, but now am hoping I don't have to. I did also start Calcium and extra D-3 which may be helping. My bone density scan was normal so no osteoporosis yet. Karenanne
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I think the answer is that time will tell. I've been on Femara for about six months and have some joint pains mostly when I get up from sitting, and also on my hands. I can walk just fine. But I'm also on Herceptin so am not sure what is causing what. Nevertheless, it is manageable, particularly as I am counting on it as much better than a recurrance.
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It's been awhile since I've posted here. I have been on femara for one year. I'm 56 years old and had already been thru menopause. Initially, I had more pain in my feet when I would get up after sitting awhile. I was able to swim all spring and summer last year and it helped. In the fall, my knees and lower back began to hurt, mostly at night after sitting awhile. At one point, my left knee hurt so much, I had it x-rayed with no problems noted other than arthritis. Did not have it before I started this journey. I was able to get back in the pool tonight and begin swimming again. It feels very good, but when I get up, it hurts. I've just decided this is what I have to live with. Having a dexascan in June to see what my bone density looks like since Aug 08. Other than the occassional pain, I really feel like I've gotten my life back. I can live with it.
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I just went to the onc yesterday and asked if I could stay on Femara after 5 years...it has been almost 4...and he said yes...up to ten he has had some women going...and it will be generic next year!!!!!!
I asked him what the new price would look like and he said like generic Tomaxafin (sp) Yeah! One of the three is coming up this summer for generic. Not sure which one it is.
I have not read through all of these messages but would like to know how bad is bad for dry vagina and area. Mine is dryer than cardboard...all the time. At this point I am happy not to be married or in a relationship. If you know what I mean!
Hang in there
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Happy Spring to everyone!!
Has anyone experienced what appears to be skin crawling while on Femara? I've been taking this "acid" for 3 months and have experienced MORE aches/pains than ever before - AND I'm 61 y.o. The joint pain has subsided quite a bit, I'm walking like a 300 y.o. OLD lady, had trouble sleeping and if I walk in the evening after dinner, I usually am o.k. without taking additional drugs to help my sleep. The dry skin (everywhere) is a pain in the butt. Now I'm reading that ALL trials on this drug were only done for women taking it for TWO years and they don't really know what the horrible outcome will be for longer periods of time. I honestly don't like feeling like I need to be in a museum somewhere - I want to LIVE MY LIFE w/o all these side effects. I had b.c. surgery last August and 7 weeks of radiation - I caught the b.c. myself - used to wear a huge tight "H" cup bra and my breast surgeon recommended a reduction along with reconstruction. It's awesome being able to buy a pretty bra instead of a rawhide one ():-)
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Goldenmermaid,
You are sooo funny. I am sixty and like you, feel like I am 90. I started Femara last Oct. for a month to be switched to Aromisin because my insurance would not approve Fem. When I took to Aromisin, my bones started aching like a big dog. I went to my Onc in Jan. of this year and he got me back on Fem only to have the pains getting worse. Not only do my bones ache but I am so stiff, especially my neck. This is crazy. This is my 7th month and I have 4 1/2 years to feel like this....hm. I understand now why some women's post have indicated that they are done with feeling like we do and go off of it. I am going to see my Onc next Tues. to pitch a bitch and see what he has to say. I don't know if I want to take a chance of feeling better and worry about it popping up somewhere else or gut it up and feel like crap for the next 4 years. If I knew for SURE that the cancer would NEVER reoccure again, I would not be complaining but there is no guarantee even if you take this ER+ for five years that it won't show up somewhere again. What to Do? I wish I had an answer. Take Care. Love your post.
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I feel your pain ladies.....literally. I'm 59 and on Femara. I feel like an 80-year-old arthritic crone. I can't get rid of the pain, just take the edge off. I also feel as fatigued as I did while on chemo. Has anyone else had this side effect? Sping is coming and I want to work in my garden!
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I have posted this info before and it's not a sure thing for everyone lissak, but do you take your yellow pill in the morning or at night? I started out with it in the AM and I could have posted what you just wrote an hour ago. I switched to taking it at bedtime and what a difference. Good luck!
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I did switch to taking it at night, but have not noticed any change. Have you had any problems with fatigue?
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New side effect for me is feeling nauseous all the time, mostly in the morning and the only thing that is taking it away is mc donalds sweet tea!!! Go figure!!
Sandy
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I get the nausea too, but have Compazine to take if it gets too bad. Just wish something would work on the joint pain.
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Not since I switched to nighttime--it was horrible fatigue while I was taking it in the AM
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I also started taking at night. It has made a big difference in how i feel.
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I take my Femara at night -- always have-- but I wake up 5-10 times per night. So, no, I have not experienced the fatigue, or else I'd be sleeping better! I have arthritic changes in my left hip which causes my whole leg to ache and I think the Femara makes its worse -- so part of my sleeping problem is my discomfort w/that. Also, I have hot flashes too - when I went off Tamoxifen it all seemed better for a couple of weeks, but I'm pretty much the same now w/the Femara after a month on it. I do think my bone/joint pain ( my knees bother me too now -- didn't before taking this junk) is actually better on the Femara than it was on the Tamoxifen. I'm just resigned to dealing w/this for the next 4 1/2yrs. -- it still beats the heck out of cancer! Karenanne
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When I think about how awful Femara made me feel in bed I shudder at the idea of taking it at night. I was waking every morning around 3 am with my legs and ankles aching horribly. There was really nothing I could do about it except just lie there. Even after three weeks I still ache in bed in the wee hours of the night.
I am into year 3 and my PCP, my oncologist, and my breast cancer surgeon all encouraged me to quit femara because of what it was doing to my body. It was scary to quit, but it was scary to continue.
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I'm now done with the chemo group and am joining you here. I've been on Femara for 6 months now and my pains don't seem to center in my joints but in my tendons, connective tissues, and muscles. I feel like I've been run over by a dump truck most of the time. I agree tht exercise might help....and I'm too tired and sore to consider it...it's a lousy cycle! I'm taking calcium, mag. and 5000 units of vit. D. daily. I'm increasingly visiting my chiro. for relief of chronic neck pain that's flared up from an old injury since beginning Femara. Does anyone know if these symptoms reverse after getting off the Femara for awhile? Thanks for hearing me grumble...guess I'm having a "sad patch" today!
Blessings to you all,
Shoshanna
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I just went back on the femara after about a two month break. I've been walking heaps and sleeping..ok...I guess I have just accepted that snuggling up and sleeping for 8 hours is a thing of the past. Sigh. Now it's snuggle up, get a massive wave of nausea and throw the covers off just as the heat hits. It's crap for sure. I feel better mentally now that I (big capital letter I!) decide when I take the breaks and for how long. Taking it at night is the thing that makes the biggest difference. And how about this: I don't take glucosamine anymore either. the pain has diminished markedly. Who knows? I think the main thing is to feel in control. Cancer took my trim body but it can't take my MIND! (She says with barred teeth..) Love y'all. xx
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Haven't been on bco much lately. Sorry to be behind in my posts.
Bopeep, sorry you were having so much trouble, but I'm glad that your drs. have agreed to let you stop taking Femara. Quality of life is VERY important.... sending HUGS your way!
Welcome, Shoshanna to the Femara club. I had a period of stiffness and joint aches and pains for awhile, but it seems to have gotten better. But, I do notice that when I do exert myself, like Monday I planted some flowers in my garden, oh boy, was I ever sore!! I am feeling better now though.
You are ahead of me on Femara though... I started Femara Jan 1st, so I've only been taking it for 3 months.
kerry
Glad to hear that you don't need the glucosamine any more... yippee! Sorry you are still having trouble sleeping. I find that the night flashes are the worst. I don't get them ALL the time, but when I do, it's the pits. I am thinking these night flashes will be worse during the summer months. Just guessing, since the winter hasn't been too bad. Although.... since starting Femara, I'm having more trouble with insomnia.... just can't sleep through the entire night, and some nights, it's murder, cause I lay awake, tossing and turning all night.
Good luck to all of us!!
Harley
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Just started on Femara last night ... not sure what to expect after reading most of these posts. Had lumpectomy with PBI. No chemo. Really glad I am at this point in the bc saga just 2 1/2 months after diagnosis. Good luck to us all!
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I also take my femara at night,and Gaynor,i also have the same problem with my toes as you.They blister all around the nail bed,then peel.putting peroxide on them,then a triple antibiotic.My toenail also hurt all the time,they feel like they are growing in instead of out.and a couple of my toenails have turned snow white.
I see the oncologist tomorrow,so will see what he has to say.Went to the orthopedic dr a week ago about my arm,he did an ultra sound and said i have a combination of things going on,bursitis,arthritis and spurs on the rotator cuff.He put some cortisone shots in it and it feels so much better now.
I still have trouble sleeping,and those damn hot flashes don't help any.The chemo threw me back into menopause,but i thought it would go away once chemo was done,NOT!!
Well i better go pick out what i'm going to wear tomorrow,and get my notes together.
Take care everyone.
Kathi
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Hello all,
I'm new to this site & am discovering that maybe all my aches and pains are not just arthritis after all! But how to tell? I know I have some arthritis..... not to mention cancer in most of my smaller bones... most vertebrae, hips, pelvis, neck, ribs, etc (But I'm not complaining, I feel very fortunate to have this type of stage IV cancer as I have no symptoms at all!) I have some aches but I had those before, & it's NOTHING compared to most gals.
I've been on Femara daily since my dx last July. Only other treatment is monthly infusion of Zometa. No chemo, rad or surgery.
My question is regarding taking the Femara at night..... I read about that last week & switched but I have not noticed any difference at all. How long does it take to make a difference? Am wondering especially about you other Beautiful Pacific Northwest gals.....Do you feel better taking it at night also? Don't you still have aches & pains just from it being cold & foggy & wet here most of the time? I LOVE my riverfront home but I am sure ready for some SUNSHINE... not just the cold crisp kind, the WARM kind!
Hugs & best wishes to you all, Toni
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I need to vent! I'm with everyone posting - Femara has made me an old woman! I feel so tired all day long - it's an effort to do anything. I hate feeling this way! Are we going against nature by stopping our bodies from producing Estrogen? I'm at the crossroads again. I was on Arimidex and gave up due to side effects - I only lasted 4 months on it. Now it's been 10 months on Femara and I'm ready to throw in the towel again. I've got 4 more years to be on this stuff - it's not the life I want to live! I retired to enjoy life and now I just feel like I want to spend my day in bed! I wish I could see actual data regarding the recurrence rates of women using AI's and women who did not. I hear it's a 30% reduction in recurrence, but I've never seen the data that proves that fact. I know I'm getting older and aches and pains come with that fact - but THIS is not normal! I want to feel like I'm ready for a day when I wake up - not waiting for the sun to set so I can crawl back to bed! Sorry- I just needed to vent a little!
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Wblibrary, know exactly how you feel, I decided to live my life now without the SE of Femara, and I feel so good now, have my energy back and can move without pain.
I did try Tamoxifen too, and within 2 weeks I was feeling so bad again, so I said no more hormone therapy for me. Am I worried the b/c may come back, yes a little, but am being monitored by my docs, and will cross that bridge if I ever come to it. I must be one of those who need some estrogen in my body for it to function properly.
I am not sure where the 30% reduction in recurrence you mentioned comes from either.
My report on treatment options from the onc. showed that with my history, the senario is as follows: Out of 100 women
66 women are alive and without cancer without any further therapy. 15 would die from other causes, and 19 would relapse. This is a 10 years survival rate.
It goes on to say that 10 women out of 100 would not have a recurrence if they had taken hormone therapy. How do they know that ????? Is that the same original 100 women(the 66,15,19) or is it based on 100 women who did not take hormones ? If they are not taking it how do they know 10 would have benefitted, I don't understand these statistics and reports, I asked the onc. who is not really happy with me, and he said it didn't matter as he KNEW femara was gonna improve my chances of recurrence and that should be enough for me.
Well I am no math whiz, but looking at the 66, 15 and 19 women the report used to show this, it adds up to 100 so that would be the same if I used PERCENTS, 66%+15%+19%=100%
That's pretty clear, I am hoping I am in the 66% group. But the rest is not so easy, I just know I feel good and on Femara or Tamox I did not.
Hugs and best wishes to all of you
dsgirl
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It has been since december and the aches and pains but the charly horses and the nausea is all the time...I am sure it was working so guess I don't want to come off of it but I am tired, it is like they wind out of my sails is what I tell people.....I didn't take tamox and got the recurrence so now am on Femara......
Sandy
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Rivergal, I sent you a private message the other day. Up at the top there's a tab that says private messages and if you have one there's a pink # that pops up, up there.
Joni
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Went to the oncologist yesterday and had a good report.Everything is still looking good,and he said the problem with my hands and feet hurting and swelling IS from the femera.The blisters on the toes around the nail beds he wasn't sure of,so he told me to check in with my pcp.
He wants to do a cat scan and bone density test in July,and he did prescribe Lyrica for the pain in hands and feet,he said it's neuropathy from the treatments,chemo and femera'Took the first one last night and the only thing i noticed was that it left my mouth totally dry,and it felt like i had a mouth full of cotton.But if it helps,i can deal with that.
Kathi
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Dsgirl - I wish I had your strength to stop the Femara. I am so upset with my quality of life at this point - but I have two beautiful new grandchildren to live for and want to be around to see them grow into adults. I keep praying that the side effects will lessen one day. Some days are worse than others and today was definitely not a good one. I just pray they improve all the AI drugs to lessen the side effects. I wish you well on your journey without them.
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I know what everyone means about the aches and pains. For the first few months, mine weren't so bad--night sweats were the worst and they have gone away. I have been taking this stuff (femara) for 9months and the worst thing now is pain in my back-it feels like a sciatic nerve and then the pain goes down my leg all the way to the bottom of my foot. Has anyone had this? May have to go to the dr. if no one else has had it. Also it feels as if the muscles in both my arms ache. Doesn't feel like the bone, tho. It bothers me so much that I can hardly post anything on the net. Let me know if anyone else has these problems; because I don't want to run to the dr. if this is just another ache from the femara. Here's prayers and hugs to everyone. WE WILL BEAT THE BIG "C"
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Gauleyeagle
I have been on Femara for just over a year now. Was fine for about 3 months and then one morning I could hardly walk my feet were so painful. I read up on these boards about AI SEs and started taking glucosamine/condroiton tablets. The pain is not gone but at least it is manageable now. I haven't had major pain anywhere else but all my joints ache and my muscles feel as though there is no strength in them so I know what you are saying about your arms. I have even had to ask my hubby to not tighten jar lids as much as we used to as I can't open them!
Am sure you will get some replies re your back soon.
Rae
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Just thought I would report in - a few weeks ago my PCP prescribed an anti-inflammatory drug for me - Meloxicam 7.5 mg.- 1 pill/day. I have fibromyalgia, and since taking the Femara at the beginning of January, my pain has worsened, probably the combination of the fibro and Femara joint s/es. I cannot begin to tell you what a difference this pill has made- the joint aches, pains, stiffness etc.have been alleviated by about 80% - I can hardly believe it. There are risks of internal bleeding, so my dr. recommended I take the pill for 5 days, then off 2 days (and I can take extra strength Tylenol, or Tylenol for muscle pain those 2 days). I can really tell the difference when I don't take the pill. I don't know it this will work for anyone else, but I thought I would share this information.
Does anyone else have hand/foot swelling? Since starting the Femara my feet especially are very swollen - comes and goes. And weight gain - OY!! very discouraging, but now that I can move without pain, I am going to try to exercise more.
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Oy alright!!! Despite eating less, walking hard an hour most days as well as playing competition tennis about 5 hours a week for the last 5 months I have still put on 7kgs in a year!!!!!!!!!!! and most of it seems to be going on around my middle!!!!! Have always had a nice small waist despite my 'twin' belly but am looking more and more like an apple nowdays
Speaking of tennis, we are into our winter season now and I am off now for my weekly thrash about the courts - fantastic night for it - no wind, clear, fine and warm.
Enjoy you day ladies!
Rae
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Hi,
Haven't posted in a while but I saw your post about sciatic nerve problem. Actually I did experience this just before Christmas, I saw a chiropractor & after 3 visits the pain was somewhat relieved although it took weeks to "go away" although I feel twinges now and again. However, I'm not sure it's linked to the Femara. My husband has a herniated disc and sciatica right now and is on complete bed rest, can't walk because of it anyway, but the symptons you describe are similar to his. The sciatic nerve runs right down from the spine to your feet so pain like you described sounds about right for this condition. You should go see your doctor about it and get physio to treat it before it becomes a problem.
Caya, you mentioned having fybromialgia - I think may be I have that? I have always attributed all the aches and pains to the Femara but I'm not so sure. I notice that when I am stressed the pain is so much worse and all over the body. Actually I am going to see my doctor tomorrow to discuss this. The onc had me checked out for mets with bone scans etc but now I'm thinking maybe if I could live life a little less stressed I wouldn't have the aches nearly as much. I seem to have read somewhere that stress makes fybro much worse? I did stop taking the Femara for a few days to see if things got better but I didn't see much of a change, that was during a very stressful period. I have been taking a "natural" stress relieve med for the past few days and I have noticed a difference but I want to check this out with my GP as I know we have to be careful with any type of med we taek that it doen't contain estrogen, the packaging doesn't mention any but I know we have to be careful. I also think a lot of our symptons can possibly be attributed to being thrown into the deep end of menopause, I know my body would love to have just a little estrogen to smooth things out.
I'm not sure whether I prefer to live with a lower quality of life like this and stay on the Femara or take my chances and at least feel like a normal human being instead of this stressed out, achy old lady at the age of 45.
I see the onc again next month so I'll discuss the options again. I didn't hear back with any results fromthe bone scan or density scan last month so I will assume that everything was OK, I'm sure they would have gotten in touch by now if anything was wrong?
Good luck to everyone, try stay positive and cheerful - I find on those types of days I do feel better.
Gaynor
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Caya<
I do believe we could be twins. I've been on Femara for a little over a year. I started with mostly finger/thumb pain and tendinitis. The hand doctor wanted to inject me with cortisone but I wouldn't let him. Actually the pain in my thumb has subsided but I have a lovely trigger finger that is quite annoying. Today I woke up with numbness in my right hand. The pain in my feet is unbearable at times. Of course, like most of us, I'm trying to lose weight which is even more difficult when I can barely walk. I've recently tested for elevated liver enzymes and am currently awaiting my CT scan results. I know it may be related to the anti-inflammatories I've been taking for all my aches. At least that's what I'm hoping. I may ask my Oncologist about taking what you're taking. Especially if it works! Thanks for the info.
Kathy
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Has anyone who completed 5 years of treatment with an aromatase inhibitor had problems with memory loss?
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I have a little but likely due to menapuse. I am still on Femara and 7 years NED
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Gaynor,
I also feel better on days when I am feeling happy and cheerful... There must be a connection.
Caya,
I found that I feel much better when I exercise... I think there must be a connection.
mrsb,
YEAH!! SEVEN YEARS NED!! Congratulations!!! I have only been on Femara since Jan 1st...
But, I took Tamoxifen for 2 years, and as of March 15, I am THREE years NED!
Hugs to all....
HARLEY
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mrsb- have you taken Femara all those 7 years? What SE do you experience?
Joni
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PugMum > Caya
That would make me your triplet!! My right trigger-thum is defnitely annoying. I just use it as a trick to amuse the little ones. And yes, sometimes I get up and can hardly walk my feet hurt so bad--I've found that the Tylenol Arthritis Pain Relief provides some relief. My lower-back seems to give me the most grief--especially if I've been sitting for a while at work. I've only been on this stuff for about 7 months and have to take it for 5 years....oh well...I guess it could be worse??
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Gaynor, I was diagnosed with fibromyalgia about a year ago, when I was still on Tamoxifen. Stress certainly worsens the symptoms, but I don't think it actually causes fibro. I was examined by a rheumatologist, there are certain pressure points on your body that when touched (with a certain amount of pressure) will really hurt. There are many other symptoms - one that surprised me is insomnia.. I had been a poor sleeper for years before my BC diagnosis. Google fibromyalgia and you can find alot of information from a reliable website like webmd, or the Mayo Clinic.
Not happy that many of us have had weight gain, but at least I know I'm not alone. It is making me crazy, I know it's not that I am overeating... I'm sure the instant chemopause at age 48 (I'm now 51) and the Tamox and Femara are the culprits. It's very depressing, I look at myself and can hardly believe it. I'm up about 30 lbs. since I finished herceptin in May 2008. But like Survivor07 says - " I guess it could be worse."
And I'm 3 1/2 years out - I'll be 4 years out in October. And I told my onc.( and I adore my onc.) it's his job to make me get old...
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Hi ladies
sschmidt - I was on Femara for 9 months but in NZ we now have a generic letrozole called Letara which is produced by Douglas Pharmaceuticals in Fiji. Here we get most medicines free under a government funded scheme but the price on the dispensed receipt is $26.55 for 30 tablets. The same cost for Femara was $146.55 for 30 tablets. So there is quite a difference in price once the generic is available which would be welcome if you were paying for it yourself. I was a bit iffy about the safety of the generic but my SEs are no better so I guess it is working just as well!
Enjoy your weekend ladies
Rae
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hey, i've been in menopause--complete--for six years. before i started the Femara, i was exercising, doing weights, etc. all in preparation for this drug and its bone/joint/muscle effects. I have HAD some arthritis in both hands and feet, and can honestly say it IS worse since starting this stuff at the beginning of the month. I also upped my Celexa dose, and am constantly on Ibup or Aspn. And I'm active--cripping about, but active. I'll take Ambien to sleep til i die, I guess.
What i'd like to know is this--are the doctors really idiots, or do they purposely lie to us about the SEs? How many women are actually ON this stuff? How many stop saying anything to their oncs and hemos, and ask help of their family docs---does any of this info get recorded? I see a ton of posts on muscle/joint stuff, (and no one--NO ONE--I know on AI's hasn't had that as a side effect,) yet it's listed as 'mild' or 'minimal' and with some ridiculous % (30-40?)...so are we all the whiners on this site? (obviously i don't think so, but someone is "layin' in th' weeds" on the SE data.) i feel like i have to make a choice without actual information, and am listening to lay people because i feel the medical profession is using smoke and mirrors.
I intend to do this for two years. we'll see after that. i want some more 'real' data before i sign up for 5.
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Hi ladies,
I was just reading this thread, and noticed about the fibromyalgia. I'm not taking Femara, but have been on Arimidex for about 8 months now and was recently dx with fibromyalgia. My family dr. put me on Cymbalta for it, which I thought was odd, since Cymbalta is a med for depression. She said that they have found out that the Cymbalta greatly reduced the pain in people with fibromyalgia. She also said that Lyrica (the med for fibro) would make you gain alot of weight...fast, and that she didn't see that doing any good for pain with the added weight on your bones. I have been taking the Cymbalta for a little over a week and I believe it is actually helping some with the pain! Just thought I'd pass on that info.
God Bless you all!
Roxanne
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livingunderthebird - I TOTALLY agree - I keep getting mumbled excuses for the SE of Femara from my doctors. I want my quality of life back! I came off of the Arimidex because I was so achy and depressed - that only took 4 months. At least the Femara I've been on it for 10 months now and I'm at the same point. I'm going to stop taking Femara for the month of May and see how I feel. I know we are all in menopause if Femara has been described - it's just the deep end that's wearing me out.
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Has anyone else have dry mouth at night time.I have neen taking femara 16months.The dry mouth just started about 2 months ago.
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Hi Kathi
I too have been on Femara for over a year and have the same symptoms including the blisters around the nail beds of my toes. I have actually lost two toe nails. The onc recommended vitamin D and I take it already. Don't wish this on you but I am so happy I am not alone with the blister thing. Take Care
Paulien
Two days after posting this I lost another one.
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Hi Roxanne
I too am on Cymbalta for Fybromyalgia which came from my first bout of Cancer 18 years ago when I was 32. It has also helped me quite a lot. Not so much with the actual pain but more about how I handle it. I am on Femara and had a second primary cancer July 08 chemo and radiation.
All the best
Paulien
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I have to say my onc. did give me the straight up on the s/es of Femara - he told me that I would have major joint pain/aches, stiffness and that I would be very dry - everywhere. Because I already had major aches and pains from the fibro, I was very reluctant to start the Femara, and I waited until the beginning of January 2010 to start it (onc. wanted me to start it in Sept.09).
Roxanne, my GP and I talked about me taking Cymbalta, but I am on Effexor which has the "side effect" of stopping hot flashes - I started taking it when I was first diagnosed for anxiety and depression, but the benefit of basically totally alleviating the hot flashes was too good to be true. So I did not change. There have been studies that show Effexor may also help with fibro.
Nanna, I don't have dry mouth, but I have noticed my eyes are very dry. I can't wear my contact lenses for as long as I used to, and I have to use moisturizing eye drops daily now.
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I believe I posted last week about having severe upper arm pain where I felt my arm was going to snap from taking Femara. I have mild pain most days but have had 2 episodes of severe pain. I just completed a bone scan that did not show any problems with my arm. So I guess it's just a SE of Femara. My onc told me to take an anti-inflammatory each morning. I take Ibuprofen. I'm glad my latest bone scans & Pet scans came out very positive. I just have to get used to the SE of Femara.
Terri
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How dangerous is it for me to not take anything? I had horrible side effects on Arimidex, took a two week holiday and felt better. I now have the rx for femara and I have not yet taken it. Can anyone help me figure this out? Am I really doing myself a disservice if I don't take anything? This is making me crazy. Thanks sisters.
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I stopped taking Femara 2 weeks ago and still have alot of joint pain. When I went to my Onc doc I told her that I could not take this without also taking Ibuprofen all day long. I was on Tamoxifen to start out and only was on that for 2 months before I could hardly walk with terrible knee pain along with my feet. I had a knee replacement done last June and even that knee was hurting where there was no pain before starting all these drugs. I had a very small tumor with no node involvment so I didn't need chemo but did have 7 weeks of radiation. My Onc doctor said she felt comfortable for me to go off Femara and that she will watch me closely over the next few years. I feel better today than I did yesterday and can only hope the rest of the pains go away in the next few weeks.
I feel the pain everyone is going through and am sorry we all have to suffer like this after having surgery, chemo, and radiation. We can only hope a cure is around the corner so others won't have to go through what everyone is experiencing.
Best of luck to everyone.
Fran
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Hi lovemyfamily so much! I just think you have to figure this out on your own! If you tried one thing, & it hurt you too much, maybe try another......My Sister-in-law won't even go in for another Mammogram now...since her breast cancer....but she tries a lot of Holistic things! I don't know if I would go that far though! I've been taking Tamoxifen for 3 months now, & I don't have the side-effects that a lot of the other women have! Another friend of mine quit taking the Arimidex also, because of her joint pain...she couldn't work, so she is off of it for awhile. My Oncologist gave me 3 months supply of Femara, but I came home & read this thread, & decided against taking it. I had started the Tamoxifen, and wasn't having bad side effects, so I just called the Onco back up & said I don't want to try it!
But to not take anything, is sort of a gamble honey, just try something else. I know about the vitamins, etc, because I take them also, but I just feel like these extra choices we have on maybe helping us keep cancer away, are at least worth trying them. Everyone is different...maybe something will work for you, but give someone else bad side-effects. I'm probably much older than a lot of you...and maybe this makes a difference on the lack of side-effects for me, but I would try anything, at least for awhile. (((((hugs))))) Jeannette
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have been on femara since dec 8th 09 and the aches and pains are getting worse, the pain the in back bt the shoulders hurt all the time and am wondering if motrin would help. Have to go to the oncologist on tuesday, should i tell him?
Thanks,
Sandy
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Sandy
yes, I would tell your onc about any pains that you are having. I have been taking Femara since Jan 1, and have started to notice that I am having more aches, and stiffness, when I've been sitting for too long, or when I am standing at work all day long... I take Motrin and it seems to help.
Harley
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For those of you taking ibuprofen and it's cousins,be very careful.Before i ever had BC i had arthritis and especially in my knees,and bursitis in my shoulder.I took ibuprofen for years for it.Then i started waking up at night coughing up blood.Went to the dr and he said it was from the ibuprofen,as i had been taking it daily for several years and was up to 800 mgs of it.Dr took me off of it right away and told me never to take it again on a permanent basis.
I had a total knee replacement in 2008,3 months before i was diagnosed with BC,hellof a year!!
Anyway i now take Equate(walmarts brand of tylenol 4 arthritis) when i need it and it works great for me as it's 650 mg vs 500 of tylenol.I also don't need or use it everyday,just once in awhile.
I had also been through and finished menopause before i ever got BC when i was 70,then chemo threw me back into it.OMG the hot flashes were unbearable.They have calmed down now but havn't totally gone away.
Onc gave me Lyrica for the foot and hand pain,25 mgs to start,and the only thing i see that it does is make my mouth very dry at night when i'm sleeping,not much difference in the pain though.
Sandy ,when i had pain in between my shoulder blades a few years ago,it was onwe of the signs of Gall bladder problems.Whoda thunk that?? Had that removed in 2000.
Sandy like your have a bowl of ice cream,that's exactly what i do when feeling down.LOL
Terri,i had terrible shoulder pain for a few months.It went from my shoulder up to my collar bone.I dealt with it as long as i could,then finally had it xrayed and they found that i had bursitis(again) arthritis,and spurs on the rotator cuff.I opted for getting a shot of cortisone in it on the 7th of this month and so far,so good.Thank GOD!!
Pauline,i'm on an antibiotic now for the blisters around my toenails.None have fallen off yet,but the dr told me he could take them off if i wanted~~~~~~~~~Thanks,but no thanks!!
Hang in there everyone,we'll get through all this together.
kathi
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I'm going to stop my Femara on May 1st for a month. I haven't even told my oncologist my decision yet, but I will when I see him at the end of May. I can't live feeling like I'm my mother's age anymore. I need a break. I will decide at the end of the month how I feel and my decision to return to it or not. I've developed nerve problems in my thigh and have to now take another drug for that - where does it end? I'm definitely a frustrated survivor right now. My tumor is gone, my breast is gone, but I want my LIFE back!
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wblibarym thanks for sharing. I am praying about this. I don't know what to do. The thought of a recurrence scares me so much, but the aches and stiffness was really awful.xo
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No one hates Femara more than I. The SE's somedays are very bad but I would not consider even for a moment to stop taking it. My estrogen and progesterone receptors were very high so I have to continue with it. I have two new grandchildren on the way so I am going to do whatever I can to ensure the best chance that I will be at their weddings.
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kathimdgd thanks for your thoughts and in my scan it says I have gallstones but not enough to worry about is what the onco. tells me, I have advil don't know if that is ibprofen kind, but it worked last night.
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blondiex46 that's funny about the gallstones. How many other people found they had them? My surgeon said I showed with some, that 80% or more people have them and don't know it. He said I should call him if they ever acted up - I promised I would.
dkerler - I'm with you on putting up with the Femara aches and pains. They are much better than the possibility of breast cancer again - I would far rather see my two little grandchildren grow up,watch my interesting three children progress and find out if I could ever become a good bridge player.
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dekerler and lassie11 - my girls are 20, 20 and 18 but they still need their Mum so I'm taking it no matter what I have to put up with - I am going to see my girls graduate university, find their partner in life and then have grandbabies if that is their choice. I have been taking it for over a year now and was fine for the first 3 months and then the SEs hit. Could hardly walk my feet were so sore and my hands and knees just ached all day. I decided I just had to get the SEs to a level I could tolerate so I read lots of stuff and started taking glucosamine and condroiton and that took the edge off the pain after about a month - ran out of the first kind and brought another which was a BIG MISTAKE as the SEs came back -so I went back to the dearer sort. But when I did any major exercise I would suffer again afterward. When I mentioned this to my GP he gave me some Voltaren (painkiller and anti inflammatory) and said to take one the night before I was going to do any major exercise ie a tennis tournament, one that night and one morning and night the next day, his reasoning being that if you have the drug in your system before you do the exercise then the 'damage' won't be as bad. It works!!!! I can now play a day of tennis without suffering for days after. I take it for a couple of days now and then just to get some relief from the constant pain which is nice too.
Bed time for me here in NZ so good night and enjoy your day ladies.
Rae
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I have been on Femara for 5+ years. My onc is keeping me on because of the number of nodes involved. SEs were not too bad.....had horrible hot flashes before I got on it. I have noticed just the past couple of weeks, however, since I have not been able to exercise due to a knee injury, that my bones/joints are aching horribly. I truly believe exercise is what is helped me maintain the comfort level I was for all the years while taking it. Bone scan recently showed NED and x-ray of knees shows arthritis. Can't wait to get back to exercising tomorrow.
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nursecal how long did your onc say you would have take it?
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She did not say. She was going to stop it at the 5 year mark but when discussed how many nodes were involved she decided for me to stay on it. I have been trying to read more about research done after 5 years and am finding that that is still in process. If anyone knows of some further research after 5 years please let me know.
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Had a bone scan last week that showed NED. However, showed a rib fx with no idea of how tht would have happened. So.....having a PET/CT tomorrow to confirm. I do know Femara is bad on the bones.......but it sure has seemed to help me for 5 years. Just don't want to stay on it if no evidence that continuing after 5 years is a plus.
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Caren
I was dx Jan last year and started Femara April. In NZ the standard time span an AI is given is five years but my onc said that the AIs are reasonably new drugs and research was being done all the time so at the end of 5 years 'they' may have decided that taking it for longer is beneficial and so it would be prescribed for longer. The problem about how long to take it is that they don't know how long the cancer cells can survive before they naturally age and die but they think that 5 years pretty much covers it as the recurrance rate drops after that time. But what happens if they are made dormant because of the estrogen depletion, will they age and die or will they come to life once the drug is stopped? And do the more aggressive cells last longer or does the fact that there may be more cells around the body make a difference to how long to take it? It seems that a lot of women take 5 years of Tamox and the have another 5 years on an AI but people who are post menopausal are usually given only the 5 years even if they are younger. I suppose it is all a bit of a gamble really based on statistics - and some doctors are maybe just more cautious than others and so suggest it may be better to stay on something in case and if you are not suffering bad SEs I guess it wouldn't hurt. It would certainly help me emotionally to keep taking something - half the battle with this dx is that feeling of if or when it will return. I have 4 years to go though so will just have to wait and see when that is up.
End of a long week for me - feeling a bit
NIght everyone, Rae
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raeinnz,
My onc has already told me 10 years. As you mentioned,she says that the cancer cells are dormat while on the Femara,then you stop taking it and --- well. Thats what she is afraid of! So we shall see. saltkm
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saltykm
eeek! I was just thinking outside the square and your onc said that! I am definitely going to be proactive about a longer time when my 5 years is up! I like the sound of your onc ... we trust the medical people to know the best way to proceed and I don't think they should gamble with our lives - if they are not sure because it is a new drug, they should just keep people on it until they do have some solid evidence to back up a specific length of time for taking it. I guess the flip side of that is that they also don't know the long term effects of estrogen depletion on our bodies - however I wouldn't think that would be fatal but a return of the cancer could be - a no brainer for me!
Enjoy your day ladies
Rae
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Rae, everything you mentioned is everything, of course, that has been going through my head. I trust my onc and will continue as she feels best. Got PET/CT restaging results today showing NED, so seems she must be doing something right. The SE being more severe now might be due to the Femara or perhaps withdrawal from the Effexor I was on for hot flashes. Whichever, I feel right now I should remain on the Femara, even though research is still ongoing as to the pros vs cons on not knowing longer effects. SEs do seem to be getting better, so I am highly suspicious that they are response to the Effexor withdrawals. I did not realize how dreadful the SEs for Effexor withdrawal are........am hoping I can reamin off SSRIs (flashes are still there but not so bad). I would rather suffer the flashes (means the Femara is working?) than go back on. This is a confusing journey we are all on and I truly feel I have been blessed throughout my life, but especially over the last 5+ years. And of course the news today makes me believe this even more. Thanks for your input.
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Caren
Yay, great news on the clear restaging results - that little yellow pill is a life saver, no doubt about it!
I agree totally about the confusing nature of BC. I have just seen a Bob Dylan quote on another thread which said 'there's too much confusion, I can't get no relief' - that sums up life with BC doesn't it? I'm with you, I will take the Femara as long as my GP will prescribe it - peace of mind is a very underrated!
I haven't ever had medication for hot flashes - I just lived with them hoping nature would take its course and that they would settle in time. The Femara certainly revved them up though but I THINK they are starting to calm down a bit now. I used to have one every hour or so day and night winter or summer but now it is about every 3 or four hours and sometimes longer during the day - still quite frequent at night though. Oh the joys of womanhood and BC
Rae
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Raeinnz - the problem with estrogen depletion is heart disease. This is what has not been studied as a side effect to Femara. This is not what is even listed as a side effect to taking Femara or any of the AI's. Every doctor will tell you a different story as to the effects and benefits of taking AI's. I'm sitting on the fence right now - I stopped my Femara 7 days ago to get back a little quality of life. I'm 56 feeling 76 all day. I want to stay off for a month to see if I feel better. I may or may not go back on at the end of the month. I truly wish there was a substantial study done to PROVE that Femara keeps the BC from returning. At this point, I think everyone's opinion is a guess as to the benefits.
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I am under a cardiologist's care and get an echo every year due to aortic regurgitation. So far so good. No change over the past five years....as a matter of fact just a little change in a positive way. Whether or not the Femara is "masking" the recurrence or not, it, I believe, has given me 6 additional years so far (14/32 nodes isn't so great). We all have to make our own deicisons, and whatever that might be is personal.
Rae, I think I said it earlier.......the flashes are getting better for me too.........postmenopausal when I was diagnosed...........Just tell myself "this too will pass"............Have a better day tomorrow I hope.
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wblibrary,
So true. I agree with you. It's all guesswork as to the benefits that we are getting. And again what you say about heart disease, is true also. Blood pressure goes up with AI's and high blood pressure leads to serious heart problems. I am on an Arimidex leave of absence at the moment...it's been 6 weeks now and I feel great - SE's are all gone except for one. Onc. said he would start me on something else....but what I am reading here on this website...all the AI's are the same...we have to deal with the same SE's. These AI's deplete estrogen...and the result is the same.
I am currently "shopping" around for alternatives, I may combine holistic treatment with the "other drug" that the oncologist has up his sleep for me (but cut it in half). I am a bit older than most (65) and admire the courage of the younger women. I worry, though, about the pain killers they take and the damage they may do to their livers. I hope they check with Dr. Lee's Book "Breast cancer and what your doctor may or not tell you about breast cancer." He has a list of foods to keep the liver healthy.
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Wblibrary
Good luck with your vacation from Femara. I hope you are feeling better!!!
Harley
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I just started Femara 1 week ago and am feeling ok so far. When do the SE's normally start showing up. My onco said to try it for a couple of weeks and then give her a call and if all is well she will write me a perscription. Is a couple of weeks enough time to know?
Flo
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Flo, everyone is different re: SE, but I 1st noticed mine a couple weeks in. I did switch to taking the pill at nighttime after a couple months-that really helped me, especially with fatigue issues. Good luck.
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I didn't notice SEs until after about 8 weeks. I also take it at night which is so much better.
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Thanks for the info. My onco said to take it in the morning, I wonder why? I have been wondering if I was feeling tired from the pill or left over from radiation. I had thought I was getting over the rads fatigue. What about you long term users and bone lose, has it been a concern?
Flo
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grama5
My SEs didn't hit me until about 3 months and then they hit. Have managed to lessen the achy joints and muscles with glucosamine/condroiton tablets and the fatigue has gradually lessened over the last 14 months. Hot flashes were revved up again but are lessening again now. Didn't make any difference when I took the pill, same SE's.
Fingers crossed you will be one of the lucky ones who has no SEs.
Rae
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Thanks Rae I hope so too. How are you doing on bone lose?
Flo
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Flo
Bone loss is an issue to me I am on Zometa now, check your BMD .
HH
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dang, wblibrary, at least i don't feel i'm a nut case! I hope like heck the break gives you the rest you need. Maybe we can try it in stages, you know? I am trying like heck to exercise and to lift weights--and ladies, i'm no sissy--but I keep getting weaker and weaker in my hands. we do not talk about my feet at all, oh no. If I can hold on til July, i'll see what the useless hemo has to say. i trust my surgeon, and will see him in august. meanwhile, it's G/C, Ibu, Celexa, and Calc/D pills...in addition to the Damned Femara.
Like you, i'm not willing to compromise my quality of life too much more than i have already...and mine was so much less invasive and serious than yours was! Mostly my SEs have been depression and joint/muscle pain. and weakness. ( i don't even count hot flashes...)
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Living under the bird - I don't appreciate being called a nut case because I want a better quality of life. Everyone has their own version of "living". You have yours and I have mine. I thought this was a discussion board for support - why are you here?
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Flo
Fortunately bone loss is not an issue for me. When I went for my bone density scan the lady said my bones are so dense the extra loss due to Femara over 5 years wouldn't even bring them down to normal for my age. Surgeon said he would normally schedule a bone scan every year until I stopped the Femara but that I probably didn't need it but he finally decided to schedule a scan in two years just to check.
Bonnie
Had the same bad feet as you and other SEs and the glucosamine/condroiton with supporting minerals worked for me too after a month or so. I started with capsules and when I ran out and bought a cheaper kind in pill form and the SEs came back so I went back to the more expensive kind so I suggest ladies try several different kinds of glucosamine/condroiton products if the first one doesn't work as they are all different strengths and have different minerals or herbs mixed with them. It doesn't fix the problem completely for me either but I can live with it now.
Rae
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Gg08 - thanks for the link. My Onc just started me on Femara and I found out today that my insurance won't pay?? I haven't heard of this before. The pharmacy was going to call the Onc today and ask them to fill out some paperwork for the insurance to try to get it through. We have Aetna HMO. Anyone else have this problem?
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My onc gives me samples-it's a God-send.
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I havn't been on here for awhile either.The worst SE for me from Femera was Hot flashes,which seem to have finally subsided.I've been on it for 11 mos.Then after a few months my feet were killing me,could hardly walk and my toe nails felt like they were growing in instead of out.Couldn't sleep,or even be comfy while watching tv because of the foot pain.
Oncologist put me on Lyrica,25 mgs a month ago,and the first week or so it didn't bother me,then the more of it that got into my system,the more pain i had,only this time Charlie horses.If any of you have ever had them,you know how painful they can be.Had them in my feet and legs.Wasn't worth the pain to me,so i quit taking it,last week.Have only had the CH's maybe twice since i stopped,and they weren't as bad as before.So i know it was the lyrica.
It also gave me a very dry mouth to the point where my tongue felt like it was burned,and my legs and feet would go to sleep.Thanks but no thanks.
I think i'll try the glucosamine/chondratine.
Kathi
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OMG-I got my 1st script of Femara filled today. It would have been $422.00 for 30 days. Right now I have insurance that will cover 100%, but our company is being bought and I will have different insurance by end of June or July. I can't afford that every month. Is everyone else's like this?
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LilyLu, Novartis currently has a prescription discount program that you might want to check out. Just go to femara.com for details. I have insurance and have been paying out-of-pocket about $250 for 90 days of medication. I just happened to find this offer and the last time I filled my meds I paid $10 for 90 days of Femara. (It is supposed to be $10 for 30 days, so I really got a bargain:)
As for joint pain and other SEs associated with Femara, my only advice is: EXERCISE. I have been taking Femara for over two years now and have experienced very few SEs. I stretch daily and run four times a week. My joints can get a bit sore, but I attribute the soreness to the running. (Believing that I am in control of my pain helps keep me strong and more in charge of my life.)
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Oy alright!!! Despite eating less, walking hard an hour most days as well as playing competition tennis about 5 hours a week for the last 5 months I have still put on 7kgs in a year!!!!!!!!!!! and most of it seems to be going on around my middle!!!!! Have always had a nice small waist despite my 'twin' belly but am looking more and more like an apple nowdays
Speaking of tennis, we are into our winter season now and I am off now for my weekly thrash about the courts - fantastic night for it - no wind, clear, fine and warm.
Enjoy you day ladies!
Rae
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Don't click on links in the post above. Reported because of links.
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I have been on femara for about 18 months. did not notice any increase in joint pain, had 'em before and they continued.
but, I had been on actonel previously, switched to generic fosamax due to cost.
a month ago I ran out of my fosamax, did not take it for a week.. Bingo joint pain decreased and each week since, better. I have spoken to my PCD as I have a bone scan set for first week June. I am beefing up the weight bearing workout. Doing stuff now that I could not do when on the fosamax. Have not told my onco so that will be a discussion when I get the bone scan in June. Hoping hoping
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Bonnie, fantastic...........Can you tell me what brand glucosamine/chondroitin you are taking. I am taking some right now with MSM..........maybe what you are taking will do better. Thanks.....Caren
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Hi Gals,
wanted to update you. I went off Femera and on Arimidex now of that and on Tomxifen hope I do better on it!! had way to many aches and pains on the others.
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I've been off all AIs for a couple of months now and feel SO much better. Femara was the least painful, but still intolerable over time. What I can't understand is - according to the pdf hiding in a link on one of the last pages - is why, since .5 mg is effective, do they only sell us a one-size-fits-all dose of 2.5 mg? Since the company doesn't recommend cutting pills in half, our only recourse is to stop them, because our oncs won't prescribe anything less. BTW, the prescribing info links don't work, so don't bother with them.
The last AI I took, caused me to have trigger fingers after only 3 pills. I have to have surgery in another week.
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Hi Everyone,
Anyone have difficulty with being moody/cranky on femara? Ive been on femara for about 16 months and I am really tired and cranky- dont know whether it is a side effect or just cumulative junk after going through the last 2 years of treatment/surgeries etc.
Kristy
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I have been taking Femara for only 2 weeks now. I am also half-way through my radiation treatments, and I drive 140 miles round-trip each weekday morning for those. I am 62 yrs old & thought I had menopause behind me some time ago. BUT -- now I am having trouble sleeping. Either can't get to sleep or wake up wide awake at about 3 AM. And then I feel frustrated knowing I have to get up and on the road at 7 AM to radiation. Then I go to work as soon as I get home from the drive to radiation. I'm exhausted!!! Help -- anyone else with sleep issues on Femara? Any suggestions? I've tried Melatonin & Tylenol PM -- still wake up in middle of night!!!!
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Bev, What time of day are you taking the yellow pill?
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Wow Bev - sounds to me as if you are packing way more than most of us into each day. No wonder you are tired! When your radiation is done and you don't have to get up to do that crazy drive and the bit of stress that goes with it all, things could calm down. I had a shorter drive to radiation (100 m roundtrip) and didn't have to go to work and found it all tiring. Now with all of that done and "just" Femara and Herceptin, my energy level is returning and I sleep quite well. Hope that happens for you too.
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Eph3_12: I take the Femara when I get up in the morning. Would the time-of-day make a difference? Would just before bed be better to take it? When do you other ladies take it?
lassie11: Yes, I'm experiencing some stress right now with everything I've got going on. Glad to know that you are doing better & sleeping well. I've learned a lot through this breast cancer experience, and mostly, it has taken some patience and persistence. It just seems that when a person doesn't sleep well, it effects every other aspect of our day. Thank you for your kind comments.
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Bev, I took it in the AM when I 1st started in Nov '09. Began experiencing horrid daytime fatigue, muscle aches, poor sleep. In January 2010, I switched to nighttime. Now I am a firm believer in taking it at night. My fatigue and poor sleep went away within a couple weeks, maybe sooner. Although I still am very stiff by mid-afternoon, I am NOT experiencing the fatigue or sleep problems to this day. Try it, it can't hurt.
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Hi ladies;
I am very glad to have found out about this forum.
My mom had a mastectomy and her 8 axillary lymph nodes were removed 3 weeks ago.
They wont give her chemo since she is too old.She will get some radiation therapy tough.
Her doctor advised her Femara. But her HR test result is weird:
estrogen recepter + 10 %progestrone recepter + 90%
I asked for a second opinion and I was told Tamoxifen would be better for her.
I am very confused since all these medicines are anti estrogens. I fear that she would be facing
all the side effects for no great benefits.
I'd be grateful if somebody told me everything was ok.
Wishing you all the best....
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Blacknwhite
I have sent you a private message re your post. To read the message, click the Private Message tab at the top of the page.
Rae
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Hi Alcie 1
I too have been off AI's for two month's and feel really great.I had only been on them 6 months. How long were you on them?
You mentioned about cutting pills in half and that women tend to go off the drug rather than trying to work with them by trying to do a smaller dosage such as cutting them in half.
Today, I had my onc. check up and discussed trying another AI since I have had all the usual symptoms of joint pain (mine were pretty bad). He was actually in agreement with me cutting them in half. He said it makes a lot of sense since it is a "one size fits all drug" and that we are all individuals. I was so pleased that he was on my side. He laughed when I told him that I had learned from this website the AI's are called "the drug from hell" by many women.
You read that .5mg is effective....... that is so interesting. That makes me feel so much better knowing that just in case I go back on them. I feel so well and happy right now that it is hard to give up this delicious feeling. My onc. more or less is leaving it to me as he agrees that quality of life is so important and that depression which many women experience can have an adverse effect on good health.
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I am in my 6th week of Femara and I can feel the fatigue already. Will be switching to a night pill..thanks to all the ladies who post and teach me so much.
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ACK!~ no, no,wblibrary--I meant I'VE been being treated like a nut case because of complaining about the very SEs you delineated! I am here on the board, like you all are--and am so glad i'm reading all this stuff--because my oncologist phoo-phoo-ed my list of complaints, and i need someone to listen to me.
I started this stuff 2 months ago. With the whiplash mood swings, increasing aches and pains and fatigue, I thought i was just going crazy. PLEASE don't take offense--my comment was relief that another woman put into words and actions the very things i thought. My family doctor's nurse has pretty much cold-shouldered me since i mentioned just NOT doing the Femara--like I was mentally deficient and shouldn't be allowed to make decisions. I have several friends who think i'm wierd because they either don't have the side effects or choose to live with them...I was just so delighted someone else said "enough, already"
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Sorry, Livingunderthebird - I must have misunderstood your comment. I think everyone's oncologist doesn't believe us when we complain about our side effects from Femara. I've been off for 3 weeks now and I still have joint pain and HORRIBLE sleeping issues. I will see my oncologist at the end of the month. I have not told him that I was going off. I just ordered Dr. Lee's book about breast cancer. I'm hoping to read it and have a list of questions to ask my onc when I see him. If I could get an even balance of hormones in my system - I think my body would appreciate it. I dread having to go back on that little yellow pill!
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Hi ladies
I would like to start the lucosamine/condroiton tablets also and need to know what mg to buy? My dog takes 500/400 and there was a big difference for him....are humans the same? How many a day are you taking? Thanks for any info.
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Robyn
The one I take is in capsule form and it is 750mg glucosamine and 250mg chondroiton with support nutrients copper, manganese, zinc, selenium and boron. The dosage is 1-3 daily with food and I find two works for me. I just happened to buy this one to start with as it was on special at the pharmacy but when I finished the bottle I bought a cheaper sort and it didn't work anywhere near as well so I would suggest you try a few before you decide it isn't going to work for you.
Rae
Rae
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Hello everyone! I am new to this site. So glad I joined! Have been reading all the comments about the Femara which I have been taking now for approx 2 mos. This was after stopping Arimidex (was on that for about 6-7 mos). Waited 6 weeks before starting Femara. I am now certain that the SE I am experiencing are from the Femara! Feeling relief but a little anxious as I am now wondering whether stopping all these meds are going to be more of a benefit or hinderance in the long run. Have been cancer free for 5 yrs on my left side but have experienced some pre-cancerous sites on the right side over the past 2 yrs. I would just like to be ME again! I will continue to read comments and appreciate support. Thanks!
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Thanks Rae
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Hi Ladies
2 years of femara now. I had stiffness muscle and joint pains and they are gone. I had sleeplessness and it is gone. I gained 14 pounds and now 12 are gone. So hang on there. For me things got better after 1 year of treatment.
HH
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Hi Again
I am including my treatments.
HH
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HH-that's encouraging. Thank you.
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Me too. Poundage per scale is only about 4 lbs since last summer, but my middle looks like I'm 19 months pregnant (and I was never pregnant!) Not happy about the size of my middle. Plus it's messin' with my blood sugars-anyone else dealing with that?
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Hi Femara takers -
Eph3_12 - I too have not necessarily gained weight, but BOY has my waist expanded - can't fit into shorts from last year! I have started (one month ago) working out again, and hope to lose some weight or at least fit into my shorts! UGH
I was at my quarterly onc. visit today and was reading one of the many cancer mags they have lying around. I found an ad for a Femara coupon - which brought my cost down to $20. I am SO HAPPY! With insurance, I have been paying $124. I recently received (in the mail) a coupon card from Norvartis giving me $20 off but this deal is MUCH better (maximum of $800 a year and you can't be on medicare or something like that). I printed it off of their website which I found on bing.
DOn't know if that helps any of you.
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Ok Ladies............
I am supposed to begin my Femara ..........Today!!! Is there ANYONE who has not had difficulties with SE's from this drug? I am feeling very apprehensive. My oncologist, when I expressed my concern over taking it poo-poo'ed it and said.......the most common side effect is osteo.......so..please........let me know if any of you are not experiencing bad stuff on it.
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PSAVAST,
I havent had a hard time with femara- mild achniess early on but walking helps and I stay on top of the vitamins and calcium supplements. Fatigue is fairly common and mine is very minor- Im still working fulltime and busy as heck with a large family and a lot of activity. Most of us with fewer side effects just dont post as much it seems.
Kristy
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I am having substanial stiffness & achiness, but I too, walk 2-3 miles per day, work full-time and chauffer an under 16 teenager to tons of events, make dinners, etc. everyday. The fatigue issue went away for me when I started the pill at night. I know I keep preaching about that, but I am a firm believer!!! You can do it psavast!
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I have been on femara since 4/09. Until 2/2010, I was able to manage the joint pain pretty well. I developed significant arthritis in my left knee. Had a bad flare up and then it subsided. It came back in Arpil to the point that I almost couldn't walk. I work full time and not as active as I could be. I'm seeing a rheumatologist Thursday. I will NOT get off AL's because I would rather deal with this than face cancer again. My concern is how this is affecting my bones/joints. Will it be permanent? I guess I'll find out soon. By the way, during my reconstruction surgeries, I had fat lipoed out from under my new breasts to my belly button. I won't ever be fat there again, cause there is no fat cells
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Yep, I had bone density test done back in 8/08 prior to diagnosis. Had another one done few weeks ago. Report from the nurse said that it was still within normal limits. I want to get a copy of both reports for comparison. Bonnie, I still have LOTS of fat cells elsewhere I'm just concerned about my knee. It swells up, gets real hot and is almost impossible to walk on when I'm in a flare up.
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psavast
I have been taking Femara since Jan 1st, and haven't had too much trouble with it. I have some extra aches and pains, joints ache when I am sitting still or while sleeping in bed all night; when I wake up, I ache and feel stiff, kinda like the tin man !!! But, so far, for me, it IS doable.
Good luck with it....
Harley
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Psavast I've been on Femara for 19 months with very few side effects. In the winter I had a some arthritis pain in my wrists and thumb and my joints get a bit stiff but I exercise religiously and I feel that really helps. I would say the worst for me are the hot flashes but I've had them for 10 years so I dress in layers and sleep with a fan.
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Hi Ladies,
I got the results of my bone scan last week and all was good however the bone density scan shows a significant decrease and now the onc wants me to have twice yearly infusions of zometa - is anyone else taking this stuff, and if so, what side effects if any are they having? I have researched this drug a bit and I don't like the idea of some of the problems it can cause but I trust my onc and feel I should at least give this a try, I'd just prefer to know what to expect. I thought about the idea of asking to stop Femara and AIs in general for a while and see if that would halt the osteopenia but I know that means risking the BC coming back so I don't suppose that is an option. I am just getting a bit fed up of taking these drugs knowing that they cause other underlying problems that effect quality of life. Please if anyone else is taking zometa (zoledronic acid) can you let me know how it is affecting you and what to expect when I have the infusion.
Best wishes to everyone,
Gaynor
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Gaynor - my onc. really loves zometa - and most of my "cancer" friends where I live get the infusion twice a year. My insurance company denied it for me and my bone density according to my onc. is that of a 30 year old (I am 46), so can't get it for ostepenia.
When we first discussed it we talked about the side effects. She (at a large NCI center) said that the scary side effect, jaw necrosis - is very rare, and she has never seen it in a patient with twice a year infusions - some patients get it monthly. I also talked to my dentist about it.
I THINK there is a zometa thread. My friends say that the first infusion they had some pain and some had a fever the next day, but subsequent infusions had no issues.
The studies on zometa and how it inhibits mets is pretty great from what I have read. I am hoping it becomes standard of care soon so my insurance company with approve it.
I hear you on being fed up with the drugs - with the supplements, femara and gabapentin that I take I have a full on pill box that I associated with GERIATRIC patients, not 44 year olds. However, we have to do what it takes to maintain our health!
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Mary - Re your tummytuck: It did get rid of the current fat cells, but unfortunately you may develop more! A good friend had a tummytuck several years ago; she thought she could go back to eating normally, and she did, and she simply developed more belly fat.
Femara is such a b**ch for contributing to the dreaded belly fat. It's as though our bodies are trying to preserve that "special" area for fat reserves in case we face starvation......
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Gaynor
I took Zometa twice so far.
I prepared for it by drinking lots of water two day before and three after. I had a dental checkup before. Not bad SE just felt a chill a couple of days later, and some facial bone discomfort within the first week. My spin was going into osteoporosis but when I checked befor the second infusion it was better.
I am 50 now.
Good luck.
HH
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With my limited knowledge, Femara is usually given for post-menopausal women where Tamoxifen is for pre.....Each drug is believed to be given for 5 year spans. My onc has kept me on Femara after my 5th year due to the number of nodes I had involved. I would discuss thoroughly with your mother's doctor and determine what will be the best quality of life for her. Good luck
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psavast......have been on Femara for going on 6 years now. It did cause trigger fingers....the osteo is the main SE.........bone and joint pain are part of that. I never really had such bad SEs that I ever considered not taking it. I believe it has helped in saving my life. 14/32 nodes were positive, so whatever I can do to prevent recurrence I will do. I read in a response earlier that taking it at night has helped with sleep problems. I was waking up around 3:00 am prior to my diagnosis due to hot flashes (those do increase for a while on Femara, at least for me), so I can't say it is the Famara that wakes me up now. My waist size has increased recently but don't know if that isn't just due to estrogen depletion which would have happened anyway. I simply feel that you should do what you feel best doing...........all of this is such a personal choice. You never know until you try.
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Hi Ladies,
Thanks for your responses, it always helps to talk to people here who have experience with these drugs, the oncs can be great but they haven't personally experienced any of this stuff. I now feel confident in going ahead with this treatment.
I did see my dentist already and they are checking up on any information they can find out. So far my teeth have not caused any problems in my life although the dental hygienist does see some bone loss in my jaw but nothing significant. I have not received the date for my first round of Zometa yet, I go on vacation in a couple of weeks so hopefully it won't be till after that, just in case I do suffer any of the bad side effects other ladies have mentioned.
Next biggy is the yearly mammogram and ultra sound coming up any time soon, just waiting for the appointment, last year there was something suspicious that they want to keep an eye on, hence I still see the onc every three months rather than having gone to 6 months, oh well at least they are looking after me.
I do have major sleep problems so I am going to try taking the Femara at night and see if that makes any difference for me, sleeping aids haven't worked! I bought melatonin as I had read about it on one of the threads while doing chemo but my chemo nurse said that it wasn't a good idea to take it, can't remember the reason why though - guess that's chemo/herceptin/femara brain for you.
Have a great day everyone,
Gaynor
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I switched my Femara to evening this week- I havent had terrible SEs but have had some foot cramps at night (wake up a couple of times with a cramp)- waiting to see if this changes. I took it in the morning just because it was easier to remember with my other med (Im in a neratinib trial)- but is the cramping will stop, I will switch to evening!
Kristy
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I started taking vitiamin B-12 sublingual high potency 2500 mcg for about 2 wks. I seem to have more energy. I haven't told my onc yet will tell her next week when i see her hope she will say it is ok to take has anyone else taken this?
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I have been on Femara since November 2009 and what a nightmare! I stopped about a week ago when my symptoms took me to the ER. My right knee flared up and now I am walking like a 100 year old woman. The ER doc sent me back to my oncologist for an MRI that I will have this week. I am now curled up in bed with continuous pain despite 800 mg Ibuprofen 1-2 times daily; Glucosamine-Chondroitin; Calcium; and some other stuff. I cannot move in the morning most times but force myself to get out of bed. A/C was bad but I think this is worse. I see my onc after MRI on June 7.
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Hi Everyone,
Well after agonizing as to whether or not to do the Zometa infusions and deciding to go for it I have now been told by our insurance carrier that they will not cover this drug. Apparently in Canada it is not been adopted as a "standard of care" yet, although my onc believes it will be in the future as there has been very promising data coming through. So it seems I worried myself for nothing, oh well. Not sure what it will mean now for my bone loss issues, my onc is going to get someone to give me a call so we can discuss the way forward. I know the drug is expensive and I'm not sure if the pharmaceutical company offer any assistance or not. Perhaps this is God's way of saying that this drug is not the right option for me eh? Not that I'm a very religous person anyway but ...... everything happens for a reason right? Guess I'll have to start doing some research to discover the alternatives.
Hope you all are having a good day, the sun is shining outside and I so wish I was out there and not locked in this office.
Gaynor
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Has anyone taken zometa for bone loss my onc wants me to take it twice year.what does it do to your teeth. Why do you have seen dentist i wear dentures should i see a dentist before.
Diagnosis: 6/27/2008, ILC, 1cm, Stage I, Grade 1, 0/1 nodes, HER2+ -
Hi
I took two infusions of Z for bone loss. You need to see a dentist because you should not be doing any major dental work close to the time you take the Z infusion. Prepare for the infusion by drinking a lot of water on the day of the infussion and the three following days. Good Luck
HH
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Okay, so I haven't read through all 38 pages of this thread yet (I only got through page 5 so far) but I'm wondering if there is anyone out here who is taking femara and has a tumor that is only "weakly" positive for estrogen receptors???? I had a TAH/BSO due to some complex atypical ovarian cysts, so I'm no longer premenopausal. My estrogen level came in (before beginning femara) at "less than 12". I guess my question is, do I even need an AI if my estrogen is already below 12, and also, is it worth all of the side effects for a "weakly" positive tumor???
Please post any insights. I'm having trouble with this decision.
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I started Femara last week after being on Arimidex for just over a year and having terrible side effects. The oncologist took me off the Arimidex for a month and I felt much better, but the joint problems persisted. He is referring me to a rheumatologist for what we both think is worsening osteoarthritis. The Femara, so far, is causing almost continuous hot flashes. Effexor doesn't seem to help, so I'm hoping time will allow my body to adjust and the hot flashes will subside.
-bonnie
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I've been on Femara since 4/2008. I had the usual aches and pains, but my left knee really flared up in Feb 2010 and again in April of this year. I saw my onc who sent me to a rheumatologist. My onc also put me on Vitamin D. Had a dexa scan and I have the bones of a 30 year old woman--I'm 56. Wooo Hooo. No bone loss. The rheumotologist dx me with "pseudo gout" in my left knee. He said something very interesting. He said many cancer/chemo patients have had their immune system shot out from under them. If there is anyting lurking in the body, it may attack with a vengance. He believes this is what is happening with the pseudo gout situation. I am able to maintain good functioning and less pain by uping the ibuprophen and take it 3 times a day. I'm walking so much better and now swimming regularly. I was convinced my problem was from femara, when, no, it was not. Just cancer and chemo did that for me:(
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I have been on the Femara now for a little over a month and cannot believe the stiffness I have!? When I wake up and get out of bed, I walk worse than my 86 year old grandma (I am 46). At first, I can barely stand up straight and my ankles barely bend, feet are so sore, as are my knees. I do Yoga 3-4 times a week and even my instructor has noticed a marked change in my flexibility over the past two weeks...it's almost as if I am new to Yoga. I don't know if it's the Femara, or just being 6 months PFC... but I am definitely having considerable changes in my joints and muscles from something.
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weety,
I am VERY weak ER+ on femara. One of the tests showed 1% positive and the other had me in the lowest category of ER +. Doc suggested femara due to age (in my 40s) and I opted to go ahead and treat the ER+ part
Kristy
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I started femara in Jan. I had an oopherectomy prior to mastectomy. 97% ER+. I took femara until the end of May and had to stop. Like so many have said, I could hardly walk , standing hurt, fingers and ankles swollen, slight popping in finger joints, and what I think is a trigger finger on one hand. I can't imagine what 5 years would be like.5 months was horrible.
I didn't ask my onc, I just stopped taking it. I later called my onc nurse and he said he was sure they would want to try Arimidex. Now a week has gone by and I haven't heard from them. Kinda scary. I don't think I even want to try something else. How do you decide? My quality of life was impacted greatly. I have been sedentary for a year now...going thru treatments...couldn't wait to finish rads so I could start exercising again and lose some of this fat that is producing estrogen. But instead I couldn't even walk across the room.Would it be better to take femara and sit around and gain 50 lbs over the next 5 years because I can't move?? Or take cholesterol lowering drugs, a diuretic, pain meds, bone builders, nerve meds for tingling and numbness. What would all that do to my kidneys and liver after 5 years. It seems like a "no win' situation. I don't usually give up so easy, but the pain was immense. BTW....I've been off it for 2 and a half weeks, and symptoms haven't subsided. THAT scares me to death...
Just needed to rant. I'm very confused about where to go from here...
Joni
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It's a tough call that only you can make Joni. I have been on Femara for about 9 months now and just noticed something interesting. While I certainly have various aches and pains, they change! For example, my right thumb joint was really sore for some time. Now it is fine - and my left wrist is sore. I had a trigger thumb and finger for a while, and not now. I don't know if that is what others experience but it is comforting to sort out that, for me, each pain is not something that will stay for the full five years - rather something that will go after a while. I hope.
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Seems like most of us have the same problems with this drug. The manufacturers should list the severity as part of the warnings.
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I've been on Femara for just 10 days, after being on Arimidex for just over a year. Has anyone experienced terrible itching (no rash at this point) with the Femara? I'm scratching like I've got bugs and don't know the cause. Femara is the only new drug I'm taking and my diet hasn't changed either. I feel like a dog with fleas must feel -- LOL. --bonnie
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BonnieK
I have been having some itching too, but I didn't relate it to the Femara. I have been taking Femara since Jan. 1st. The itching has been happening, on and off, for the past 3 weeks or a month. BUT, it SEEMS to have gotten better lately. I was getting these big red sores all over my body! My legs, and then my back.
I thought it was related to my recent switch in laundry detergent... it was a HUGE bottle of ...
Purex... So I am back to ALL free and clear....
Harley
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I think I have an issue of 'trigger finger', but it's just my left pointer finger. I forgot to ask my onc about it today... he would just blow me off anyway. I mentioned stiffness and achiness...
he said that it could be my vitamin D levels... I told him that they were LOW NORMAL in December, when I was tested. He checked his records and said: No, it was HIGH! 58... I think he had someone else's chart, cause I remember it being 38... I didn't question it... he is doing another vitamin D test so we shall see what happens. I should know the results by Tuesday.
I HATE what this drug is doing to me, but... I know that I have to take something to prevent recurrence. So, I'll just take my lumps and keep going. I have 2 1/2 more years of hormonal therapy....
Harley
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I'm having a terrible time w/ Femara. I've only been on it for 5 months. I was fine the first 2 months. Now, I have frozen shoulder syndrom and 24/7 pain in my left upper arm with no flexibility. I'm thinking of stopping the Lupron shots & Femara and going on tamoxafin instead. Will see what the Onc says.
Terri
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The nurse told me to take Benedryl and continue the Femara unless the itching gets worse/turns into an allergic reaction. The onc said this is a common symptom that usually goes away fairly soon when the body adjusts to the drug, but to call them back if there is no change by next week. There's no way I'm messing up my whole weekend by being half asleep with Benedryl -- I'd rather be itchy, but will take it at night and see if I can get a little more sleep.
Harley -- I hope the itching and red sores are gone now that you have gone back to using ALL for your laundry. Trigger finger seems fairly common with these drugs, so you should probably mention it to your doc.
ibcmets -- Have you tried Arimidex or Aromasin yet? Maybe one of them would be a better fit for you.
-bonnie
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Thanks, Bonnie
My onc. wouldn't care. I guess IF it gets worse, I'll call him. But it's not too bad right now. I know, famous LAST WORDS...
Hope your itching gets better. I don't think MY itching was related to the Femara, since it didn't start til I was on Femara for 5 months or so. I've been on Femara 5 1/2 months... UGH... Not sure if I can do it for 2 1/2 more years!
Good luck to you!
Harley
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I have the trigger fingers too, three on my left hand and one on my right. I live in Australia and its so interesting to see how you Americans are faring with Femara. I have been on it for nearly 2 years and am just having a break for 3 months. (supposed to have a knee replacement in the meantime) But my knee pain has improved so much and also all the fibromyalgia symptoms which have plagued me, and the nausea but not the hand swelling pain and little nodules on my palms where the fingers join the palm.
Does anyone else have these they feel like toothpain when you touch them. Have decided to skip the knee replacement now and have my second breast removed and maybe a reconstruction instead. Then its back to AI's but onc says he might try Tamoxifen. What is the go do you ladies think?All the best
Paulien
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I have been on it since December 2009, was fine in the beginning then the aches and pains started then the nausea then nothing it all went away. I am having problems with my left arm, seems to have no control of it sometimes..I am a 1/2 empty person so of course I don't think that it is working cause of the twinges where the tumor is on the right side. Have to go to the onco. Tuesday but no scan for 4 -6 months he said and the last one was March....who knows..
Sandy
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I have been on the Tamoxifen for about a month now and I seem to be tolerating it much better than I did the Femara or Arimidex. I still have the trigger finger and problem with my left arm and the neuropathy in my feet, but it is better.
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Hi Ladies,
I haven't been on in a while. My left shoulder is killing me, I finally started taking ibuprofen and it seems to help but not for long. I also get the different aches in different places all the time. I don't think anybody tells us about the severity of the side effects because then nobody would take the darn yellow pill! The Dr.'s do blow you off whenever you complain, so it really isn't worth it any more. Not sure how long I'll take this but I started in November 09 and hate it!
Kelley
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Jane, glad to hear you are somewhat better. We all gotta do what we gotta do!!!
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My .onc wants me get zometa treatment every 6 month She said that taking zometa also helps 25% less chance of breast cancer returning. I have some bone loss since last bone scan
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I had my first cholesterol test since I started Femara last June and it has gone up 30 points. My doctor hasn't called yet but I do expect him to. I've lost 13 pounds and 30 inches so I would say the increase is due to Femara. Not quite sure what else I can do since I already tried statins and had a bad liver reaction to them. Any suggestions?
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Is anybody's hair falling out?
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I've just started taking Femara like 3 days ago and when my onc started me on it he told me that if I had any issuses with it to let him know and we would try a different drug. I see him every six wks. so I just have to wait and see.
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blondiex46: I'm not having any hair loss issues from Femara, but I remember a couple ladies posting on previous pages about that as a SE they were suffering.
Laurie_R : Good luck with the yellow pill. Hope you are one of the lucky ones with minimal to no SE
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Blondie
Yes my hair line deteiorated rapidly until I used Regain(ANA Rogain or Hair Back) I was told that I would have had it when I went into menopouse chemo and then Femara just speeded thing up.
Take care
HH
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no hair loss issues for me after 9 months on Femara.
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Ive been on femara since the end of January 2009 and have not experienced hair loss. My stylist says it is thicker than before it all fell out (and it was really thick before).
kristy
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Hmmm...I really envy those of you whose hair is nice and thick after chemo and during femara. My hair returned ever so slowly and it is very thin on the crown (whereas it was beautiful and thick prior to this horror story!). I started femara a month after chemo (did not have rads) and so femara's SE of thinning hair managed to take hold. Haven't shaved underarms in 2 years (yay!!) and leg hair is very hard to find. As for eyebrows - well, I did find a good pencil by Revlon, and am now using a gel called ecrinal to try to encourage my eyelashes to become more visible!
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I have been on Femara since february 2009. I have the hot flashes and muscle pain but all in all has been mostly manageable. However the pain intensified the past two weeks and for the last week or so it has been my left leg. - I cannot walk without limping.Today something gave out in my left knee (almost like a crunching) - the worst pain and I can no longer put any weight at all on my left leg. Went to ER- they x-rayed and found nothing. I am bandaged , immobilized, have crutches and pain pills and am to see an ortho MD Thursday. My onc says it is not due to femara (I went on a "Femara vacation" beginning this past Friday ) because it is not symmetrical (in both legs) ! What else can it be? I have no broken bones, I have not fallen or had trauma to the leg>...
I just believe it is the Femara - has this happened to anyone else?
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I would like to thank all the girls who posted about taking the Femara at bedtime. I tried that for 2 weeks...found that I was having a hard time getting up in the morning. (I am one of those who hit the floor running!)....so I moved it back to after dinner....7ish. Works so much better! I am back to getting up before the alarm and doing much better during that day. I am a BIG fan of an afternoon 20 minute nap and still try to do that everyday. I learn so much from all of you on BCO. Thanks for making my life one step closer to sane again.
Hugs!
Robin
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I am going off of Femara..
(we;ll see how the next drug serves me).Mary 5454 - I would suspect Femara... i have had many new arthritic issues during my year of Femara. .. particularly when a joint is used more than often. hopefully rest an immobilization will fix it for you.
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Has anyone lost weight while taking femara and lowered their cholesterol?
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Nanna-that's a big "NO" for me (started Femara Nov '09). Haven't changed eating or exercising habits (in fact probably do better on both those fronts) but have gained about 7 lbs.
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Hi Nanna,
My onc also wants me to start Zometa 6 momthly infusions however my husband's insurance company will not cover the cost as they say it is not yet considered "standard care" in Ontario so it looks like that will not be going ahead at least for now. I have come to the conclusion that certain things happen for a reason and that if I was meant to take it then everything would have gone through smoothly.
I haven't posted for a while as I had to have emergency surgery at the beginning of June for a twisted bowel which turned out to be as a result of the oopherectomy surgery I had in Feb 2009. My husband and I were told that I wouldn't be able to make our vacation to the UK and Europe but luckily for me I made a remarkable recovery and I was able to go. We had a brilliant time with family and friends and I'm sure the vacation did us both the world of good.
I have started taking Femara at night and I am finding that I sleep much better now, although that could also be due to the jet lag, we only got back to Canada on Monday evening this week.
I also believe that the aches and pains are much improved due to the lowering of my stress levels. I really do notice a dramtic difference both with the aches and also the hot flashes dependent upon how stressful my life is at any given time.
I do worry about being told I have early stage osteopenia and not being able to have the Zometa, I have a family friend who has osteoporosis I see how much she suffers but may be things here will change or we'll find another solution to the problem. I have considered stopping taking Femara to see if that slows down the progress of the osteopenia but I'm still in the thinking stages. It sometimes feels like a double edged sword we walk everyday.
Love to all, take care and keep on offering the help and support, it is greatly accepted.
Gaynor
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Okay, well an update.....I was on femara for 5 months. I started having pretty bad swelling in my lower leg and feet as well as numbness in my fingers to the middle of my palms. And SEVERE joint pain all over. I decided to stop taking it on my own on May 21....so I have been off for a little over 5 weeks. The numbness in my palms has gone away, but not my fingers. I still ache about the same....I see my onc on Jul 12. I know he's not going to be happy and will want to try me on another AI. I really can't see doing that unless my current symptoms go away. I would think starting another would only make the symptoms worse. I know they are different, but don't they all cause bone loss and bone pain? Any thoughts appreciated....
Joni
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Hi
Nanna I lost 10 pounds It can be done with strict diet.
Gaynor ask for Vosamax it is a weekly pill prescribed for osteopenia may not be as good as Zometa but it should help the BMD
HH
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Joni, I hear where you are coming from, it's hard for many of us to take one of the ALS.
I tried Femara and did quit, the oncologist wants me to try Tamoxifen, and said it does not cause bone loss, a big plus for me since I already have osteoporosis. The joint pain could happen, and I think there are a few other SE's - why don't you read up on Tamoxifen and ask the Oncologist about it ?
Best of luck to you
dsgirl
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Hi Girls....I always read your posts, because my Radiologist AND my Oncologist wanted me to try Femara.....I have taken Tamoxifen for 6 months, with very few SE's....But from reading all I could, & researching it, I was really afraid to try something "new".....I know that Tamoxifen is better for your bones, whereas the ALs cause bone thinning. At MY age, I don't want to lose anymore of my bones than I have to! I'm almost 73, but to read about the "severe" problems with Femara, I am asking my Oncologist to just keep me on Tamoxifen. In fact, the Onco just called & wants me to get the Cyp2d6 test, to see if I am metabolizing the Tamoxifen....I guess that would be the decision maker... So I'm going the 19th. I'm keeping my fingers crossed that I can stay on the T pill!
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OK-here's my ignorance shining through. I was under the impression that Tamoxifen was to be used by pre-menopausal women. Is that not the case? Well obviously not if Chevyboy is taking Tamox, unless you have the fountain of youth accessed & are indeed pre-menopausal! If that's the case, where can I attach my hose to that fountain?
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I've posted before on this thread. Been on femara since April 2009 and had the aches and pains. It got real bad in March of this year. I'm now seeing a rheumatologist for it. I also found I was Vitamin D deficient. I've been spending more time in the sun here in Florida this year and taking a supplement. I have to say for the last 3 weeks, I have not had to take any ibuprophen for my knees where I was taking three, three times a day. Not sure if it will come back. My doc thinks I have pseudo gout in my knee.
Also, I've not had any problems with my hair. It is about like it was before chemo.
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Not ignorance Eph, just that darn confusing. My second onc. wanted to take me off Femara, and put me on Tamoxifen. I didn't answer her, because, being post-menopausal, I didn't really WANT to. She said to think about it, because of my bones (osteopenia) and fewer se's. She also said that it would have the same effect, that some older women do really well on it. I stayed on Femara.
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dsgirl....I am post menopausal due to an oopherectomy, so from what I understand can't take Tamoxifen. But, as stated above I'm confused about those who are taking it well past menopause?? Seems there is no standard at any stage of this disease.
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I've been taking Femara for about 9 months now and right from the start the oncologist recommended taking calcium and Vitamin D with it. So far, I have some general aches and pains that don't bother me once I get moving and there are some effects on my hands. Even then, I can still manage fine on my own in the house, use the computer, play bridge and hold my grandchildren. All the important things carry on.
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Tamoxifen can be taken by any age woman because it blocks estrogen (produced by the ovaries and/or the adipose (fat) tissues of the body) from getting to the cancer cells. The Aromatase inhibitors (Femara, Arimidex etc) work by blocking the production of estrogen in the adipose tissues so it is more suited to post menopausal women. Pre menopausal women do sometimes take AIs it but they have to take a drug to stop their ovaries working for it to be effective.
The decision of which to take can be influenced by existing medical conditions and the drug side effect profiles as well as menopause status. Eg if you have bone loss it may be better to take Tamox as bone loss is not a side effect but if you have thrombosis problems AIs might be better as Tamox has that listed as a side effect. And if you prefer to worry about achy joints rather than an increased risk of uterine cancer you might choose and AI over Tamox. Having said that, some women, probably as they are at greater risk of recurrance, are prescribed both - 5 years of Tamox then 5 years of an AI.
Hope that clears things a little
Rae
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Thanks Rae...good info, and nice to know there are more options.
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Yes, thanks gals! When I first went to the Breast Surgeon, she said she would do a lumpectomy, then implant the MammoSite device, & have radiation for the 5 days....She said after that I could take Tamoxifen....Then I went right over to the Radiologist, & even she said, yes, Tamoxifen for 5 years....I was kind of happy, because my dear friend, who is even older than I took it for 5 years, & that was 11 years ago, so I kind of knew what path I was on. It would have been kind of hard to hide the fact, that I'm almost 73, ha! But at the time, I didn't know about any other drugs that follow up BC. Also, we didn't know what type of BC I had....So after the surgery, & knowing that I was ER & PR positive, I DID go to an Oncologist & he thought I should have Chemo, without even checking anything else. It was such a shock, because I hadn't heard this before. I said, but I don't think so....my Docs didn't say anything about this....And I want to start on Tamoxifen. He gave me a prescription, & ordered the Onco type test....And it confirmed MY thoughts, that I didn't need chemo...I was "20"...I changed Oncologists after that....He scared me to death, advising I should have Chemo, without even knowing. I think SOME just think that they should do EVERYthing to prevent cancer from coming back.
And I trust you gals....I know some have terrible SE's, & some don't! And I have been taking the vitamins all along with the Tamoxifen....So maybe if I have to start Femara.....Maybe if I am NOT metabolizing the Tamoxifen, I will stop being such a baby, & go with you gals, & be on Femara.
I know the Doctors know more than I do....Maybe I should trust them more...But these tests will help! Thanks....
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Good info Rae. My grandmother died in the mid 80's. She was on tamox at the time from having BC many years before. My mother took Tamox until she died in 1997 before these other meds came out. What many don't know is that it was the ONLY drug out for many years.
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Exactly....my mom and her sister both had bc. They both had a mast and did nothing else except tamoxifen for 7 years. My mom died of lung cancer...totally new primary, not related to her bc. My aunt lived almost 24 years, never any more cancer. So yes the AI's are good, but tamoxifen isn't past its prime, and worked for many women for many years.
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I had to stop the Femara after 10 mos due to SEs. Then I went to Arimidex with same SEs. At that point, I told the onc. I was DONE! He had me try Tamox and, I must admit, it is tolerable. I feel I can stay on this another 4 years if I have to, whereas I never would have done that with the AIs.
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Ladies, good input & lots of food for thought.
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I agree with the posts about the Tamoxifen - it's suitable for pre or post menopausal women - it's been around forever and it's been shown to work. My onc had suggested it when Femara was giving me so much trouble with the side effects. I back on the Femara - but ready to give the Tamoxifen a shot. I can't handle the night sweats and hot flashes. The aches and pains are better with Gluclosamine and Calcium/Vitamin D tablets.
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I had mammogram it showed up something and now will. have a breast biopsy. I have been taking femara for 18 months has anyone had developed cancer in other breast while taking femara.
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Hi Nanna,
Sorry to hear about the results of your mammogram, if it's any concellation I had something show on my mammogram last year and they were sending me for a biopsy but then the onc decided to send me for another ultrasound instead just to be sure and that came back clear, so no biopsy. They do have me still go for 3 monthly checks with the onc. Maybe if my mammogram in August comes back ok then they'll change the check ups to ever 6 months? Did they automatically do an ultrasound when you had your mammogram, my onc now insists as she says mammograms are not 100% reliable? I do have various lumps and bumps on my BC side but hopefully it is just scar tissue and nothing more sinister, guess I'll find out in August! For now I'll try not to get fixated on it.
Love & best wishes Gaynor
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I just found this forum and am glad to know that I am not losing my mind. I was disgnosed in June of 2009 in the midst of my father's final bout with bladder cancer. I had 2 lumpectomys last summer and then 10 radiation treatments with mammasite device, I had the balloon catheter put in the first day of funeral visitation for my father. I think that I just put everything out of my mind in my grief. I sailed through the radiation and then had a total hysterectomy in September, took 2 and a half weeks off work then back to regular routine, taking care of my mother and 17 year old son and working. In January I had a little fall apart (which I figured that I was due) and then back to my old routine again. In April 2010 I started taking Femara, within weeks I was having terrible hot flashes/night sweats and was just miserable. I talked to my oncologist and he suggested an anti-depressant and/or accupuncture. I have a friend who is certified in accupunture and Chinese Medicine. The accupunture has helped hot flashes/night sweats, but now in the past month I have started noticing joint pain, problems sleeping and forgetfulness, I thought perhaps I was getting depressed. Now, I think that it is due to the Femara. I had an EMG last week because I thought that my carpal tunnel had reached the stage where surgery was required. I am an attorney who is employed as a Magistrate (like a judge) and I write constantly, my thumb and index finger on my left hand are numb and both my hands and fingers ache constantly. As a diabetic I worry about neuropathy and permanent nerve damage. Has anyone had carpal tunnel surgery while on Femara, if so, did it help your symptoms? I also use a computer frequently, but that is a problem also because of my hand pain. Thanks
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moemom I have mentioned here before that Femara seems to be affecting my hands more than most other parts of me as well. The encouraging thing is that it doesn't (after 10 months) seem to be getting worse and worse, just that different parts of my hands quit working from time to time. Fortunately, I have never had to stop using the computer or the mouse. My handwriting is worse, but still doable. I am counting on this being temporary (considering five years as temporary) and much better than the alternative of a BC rerun.
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moemon
I am so sorry to hear that you have had such a heavy burden to carry in the last year. It is hard enough dealing with your own dx without losing your Dad as well.
I know just how you feel - I thought I was losing my mind at one stage too. I lost my Dad 18mths before my dx and although I had passed the worst of my grieving, the same deep emotions came flooding back once I had got through surgery and started Femara. I too thought I was getting depressed but my doctor said it was normal to greive and it could take up to two years to get my head and heart back to a new 'normal' and was loath to put me on medication. Physically I was ok on Femara for about 3 months and then, like you, the pain in my hands, feet, elbows and knees started. I started taking glucosamine/condroitin tablets and that has eased the pain to a bearable level. I used to run 8 kms a day but cannot do that now and even walking a long time is a challenge. I manage to keep playing tennis by using painkillers/anti inflammatory the day before I play, on the day and the day after. I don't have carpal tunnel problems but different fingers pose problems at different times - some days they will all ache, some days one or the other will have very sore joints like arthritis setting in, other days the pain will be more in my hand/wrist area and very rarely I will have a day without noticeable pain. Feet and knees are sore most of the time. Hot flashes/night sweats were certainly revved up for about 12 months but are starting to ease again now after 15 months. Sleeping has been a mission since dx and Femara only made it worse. I started bike riding and tiring myself out physically seems to at least help me get to sleep but the night sweats still wake me about 3 times a night. The forgetfulness is what actually annoys me the most because I am usually not like that at all and can't do anything to fix it. For example not long ago I went from my car into the coffee shop to get my husband and I a coffee - he wanted a flat white and I have a latte - and in the space of about 2 minutes I ordered 2 lattes - forgot completely that he wanted a flat white!!!!! What do you do about a goldfish memory like that?!!
However, despite the pain and frustration, the best things in life are usually the ones we have to work hardest for so I am with lassie 11, I will deal with these (fingers crossed) temporary SEs hoping it means not having to deal with BC again!
My thoughts are with you as you fight to find some level ground in your life now.
Rae
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Hi Moemom,
I just read your post and I could identify immediately with the "forgetfulness" syndrome. I was diagnosed back in June 2008 and started Femara in February 2009 following surgery, chemo, radiation and an oopeherectomy. I have suffered the joint aches and pains in fits and starts, they are always worse when I am anxious or stressed about something but once I calm down the side effects of Femara seem to calm down also, apart from the hot flashes and night sweats which continue with vengance. I cannot fully remember the last time I had a full nights sleep and before BC I never had a problem sleeping through the night, apart from my husband's snoring (LOL). I have considered stopping taking Femara many times as I hate the side effects, it's no fun being 45 and feeling like 90 some days but I'm hoping it's all worth it in the end. I have recently been told that I am in now in the early stages of osteopenia thanks to the Femara also, and we are looking at my options right now. Unfotunately Zometa is not considered a standard of care in Ontario right now so it's not covered on OHIP or my husband's health insurance through work.
As I said earlier I have found that the SEs are much worse when I am stressed or anxious about other things in life, lets face it having a teenage son and working in a somewhat stressful environment can be difficult, so maybe you should talk to your onc or family doctor about taking an antidepressant for a while and see if that helps. You have been through so much of late and you deserve to have a break.
Take care, love
Gaynor
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Moemom, I had carpal tunnel surgery while on Femara. I have been on Femara going on 6 years this year. My onc has kept me on it due to the number of nodes (14/32) involved in my situation. I am truly blessed to be alive today, and I believe it is due to several things, Femara being one of those. I have experienced SEs from it but believe it is my best option. I had osteopenia in one hip that my Gyn had been watching prior to my dx in 2004. I am taking Boniva (have taken Actonel and Fosomax also). The generic Fosomax did not improve my situation so my Gyn changed me to non-generic. I wanted to take a once-a-month med so we switched to Actonel. That worked great.....bone scan at Gyn shows strong bones (even though on Femara) and the osteopenia gone. I have just recently switched to once-a-month Boniva because my co-pay is less for it than the Actonel. I had taken it before and it had strengthened my bones, so I feel it will do the same now. I also had trigger fingers which may be contributed to the Femara, but had surgery for those as well (about 3-4 years ago), and so far so good. The main SE I am experiencing now I believe from the Femara is pain in my feet, but after walking around for a bit it gets better. I have suffered from hot flashes/night sweats long before my Dx. They seem to be really bad..........then a reprieve..........then bad again. I do take Effexor and that has given me some relief. It is a difficult drug to withdraw from however. I wanted to see if I still needed it for the flashes (never taken for depression) so went off for a while. The flahses were much worse off the Effexor so I am now back on 37.5 mg. It seems to help. So.........no problems with carpal tunnel or trigger finger surgery while on Femara.........it just corrected the problems. Hope this helps.
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NURSECAL: Want you to know that I really appreciate your posts. They are informative and very helpful. My onc just prescribed Effexor today for my SE's on Femara. I have tried to tough it out for the past 2 months, and now I feel like I need some relief. I feel like crying all the time, I don't sleep well at night, hot flashes come and go. My co-worker has noticed a change in my disposition, and I know that I am hard to get along with. I feel like the world has gone on - and I've been left behind somehow!! It is embarrassing when other people notice and ask if I'm OK!!!
I still wear my wig to my full-time work, and just not having enough hair to go topless is discouraging. Plus the wig drives me crazy by mid-day, and I can't wait to get home & take it off. With my hot flashes, it is now super hot here in Nebraska in July!
Lastly, my left hip is screaming at me on a daily basis. I'm tempted to try a chiropractor, but feel that it is joint pain from the Femara. Will I experience any relief right away from the Effexor?
I should add that my life has been blessed - and I am extremely grateful to be alive. (This message was starting to sound like a self-pity party!!!)
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emegram, so glad to hear that I am of some help during this journey. It is long but gets better each day. I completely understand the wig thing. My daughter got married 5 years ago and I asked her if she preferred me in a wig or al natural. She chose the latter, for which I am greatful. I hated the wigs. My hair, at that time, was like a buzz cut, had just started growing back. I have a wonderful picture displayed at home of me helping her with her pearl necklace. I simply love it. I worked throughout all my rads and did not wear a wig (worked in hospitals). Don't know where you work, but I would think that scarfs could be substituted for a wig, if you feel comfortable with that. The Effexor can take anywhere from two weeks to four weeks, depending on the person. It is a very gradual change and is not something that will necessarily stand out to you, at least it didn't to me. When I tried going without it is when I really noticed the difference in the flashes, aches and pains and mood, I guess since I had been on it for quite some time. Now that I am back on it, like I said the only true ache I have now are my feet, and I work through that. I work out daily on the elyptical (? spelling). At first it was quite difficult on my feet but it seems now they don't even burn any more when doing it, only when I get up in the morning for a bit. Hope this helps Feel free to PM me if you would like. Take care and keep your chin up....it does get better.
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Hi ladies, I hope you don't mind if I jump in here too? I'm going on my second month of Femara after a failed attempt at Arimidex. I'm getting a lot of good information from all of you; I so appreciate the input. I see my onc tomorrow and I plan to ask her what I can do to help alleviate some of these SE's. I don't want to get more prescriptions if I don't have to, so I'm hoping she has some ideas for natural remedies for the night sweats, muscle and joint pain, fatigue, etc. I tried glucosamine to no avail, I know I'm Vitamin deficient and currently taking 2,000 iu's a day -so if my D is still low I might need to increase that. I'm reading back through the posts for ideas on things I can ask her about...I have carpel tunnel in both hands and at the moment the right one is so bad some days I can barely use it. I'd really like to get that under control without having to have another surgery (I've had 3 in 3 years so I'm a little surgeried out!).
Does anyone here get vitamin b12 shots? It's something a co-worker recommended to combat the fatigue, but I'm not sure if the onc will agree with that one? Any tips are appreciated...
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I switched from Tamoxofin to Femara about 4 mos. ago -- I do believe the jt./muscle/bone pain is worse -but I did have all that on Tamox. Due to a bad case of poison ivy I was put on Prednisone 2 days ago -- like a miracle -- all pain is GONE!! I feel like I have my body back -- but it makes me sick to know that when the Pred. is gone ( and it's terrible stuff too) the pain will be back. So, I am on a search for natural herbs/supplements to replicate the anti-inflamatory affect of the Pred. -my onco confirmed by message today that it is the anti-inflam. affect of the Pred. that is making the difference. So far I've seen Curcumin as a good supplement and Tart Cherry Juice - I'm on Calcium and D-3 already. Any other suggestions? I'm 53 and have been in great health other than BC -- always exercised and careful w/diet -- so it's distressing to be hobbling around like I'm 90 and not sleeping due to bone pain! Thanks. Karenanne
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navygirl, I get Vitamin B12 shots, once a month. Just started doing this a couple of months ago, but I do have more energy.
My GP prescribed Meloxicam, 7.5 mg.day for my joint/muscle aches - it's an anti-inflammatory, I have noticed an improvement. Taking a warm bath with Epsom salts or Dead Sea salts a couple of times/week also helps.
I also take glucosmine chondroitin, Omega 3, 4,000 units of Vitmain D3, Curcumin, Calcium w/magnesium, a multi-vitamin. I've been on Effexor 75 mg./day for 3 years now, which basically stopped all the hot flashes and eased my anxiety.
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Thanks to lassie 11 and raeinnz for your encouragement, it helps to know that I am not imagining things, it is a little harder for me to admit to others (the attorneys and others that I work with) that I am having a hard time. Although the attorneys all knew my father, as he was a practicing attorney for over 50 years, many of them didn't know about my dx until after I had my hysterectomy (I told very few people as I didn't want my parents to find out until I knew how the lymph node biopsy turned out, my dad never did know). Oddly enough, my aunt (who is only 5 years older than me, had almost the same dx just a few weeks after me, so we are supportive of each other, she is having some of the same issues on Arimidex that I am having on Femara. It's hard to talk about the things with people who have not been through the experience. I had my first check-up mammogram in January and it was clear, my next one is in about 30 days, I am confident that it will be clear also, but there is always that little voice in the back of your head...I am going to start walking again, I was doing 5K and 10K and was supposed to do a half marathan at Walt Disney World in March but was having some trouble with my back and had to sit it out, so I am going to try and start slowly and work back up to my prior level, 3 miles a day, perhaps that will help clear my head and help my aches. Thanks again, Megan
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In the time it took me to write a post at least 3 more messages were posted, this information is great! I am taking notes and will talk to my dr when I see her in 2 weeks, don't see the onc. until Aug., so will start with my GP. I am also diabetic and have HBP so I will have to see if any of these meds/supplements will interfere with those meds. I am taking Calcium with Vitamin D and fish oil. Thanks to all for posting your great info, I feel very encouraged! Megan
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I started femara about a month ago. My thumbs are driving me crazy--they are so sore. I am dropping stuff all the time because it feels like that grasp using the thumb and bones that connect the thumb to the hand is not working correctly! Also, my big toes feel the same way. LOL
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To all: Femara is a monster drug! At least to me and to most of the posters on this thread. I stopped this drug after only 5 months of use and it did nothing to decrease the tumors in my liver as the chemo did. Even though I did have some self-limiting SEs of the chemo; Femara has taken the crown! After a trip to the Urgent Care and ER, an MRI did show a development of a Bakers Cyst in my right knee and a benign tumor that showed up as well. I am currently scheduled to see an orthopedist to determine what's next. My oncologist has stated that these new developments are a result of the Femara. So - please ask your oncologist to send you to a rheumatologist or an oncologist. Specialists are there for a reason.
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I completely agree with Vilma. See a Rheumatologist. Mine told me that after having cancer/chemo, etc. our bodies can be attacked by something that may have been lurking there anyway. I have pseudo-gout in one knee. Right now with Vitamin D, I'm sooooo much better, but I know I will have flare-ups again. I've been on Femara for 16 months. I'm not going to stop taking it, it is the best for me, but I got to where I could hardly walk. See a specialist if your symptoms don't get better.
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Is anyone else having pain in their hip(s) since taking this drug? I'm trying a chiropractor - and lots of Advil.
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I had my lumpectomy in March, where they took out a very small tumor (3mm) and got all the margins. I had 33 radiation treatments and started on Femara on June 25. I have felt terrible since the second day. I have bouts of extreme nausea and diarrhea, my back and hips hurt so bad I can barely stand, and feel generally lousy. I first took them at night with 75 mg of Effexor and the hot flashes were awful. I switched to taking them in the mornings and split the Effexor into two doses a day of 37.5 each. The hot flashes are a bit better. I have not slept more than a few hours a night since I started taking Femara. I was already on a Women's vitamin pack plus Vitamin D and Black Cohash.
I had a full hysterectomy in 2006 at the age of 43. I used the Estrogen patches for several years but they did not seem to make any difference. Last July, I saw a doctor who specialized in hormone therapy and we started working on bio-identical hormones. I upped my does in November and when I had my usual yearly mammo in January, they found the tumor. As soon as I was diagnosed, I went off the hormone treatments and the doc prescribed 37.5 mg of Effexor for the hot flashes. I had some, but they were not severe and did not interfere with sleep.
It seems to me that the hormone therapy had a hand in the BC, but the oncologist doesn't want to make that association. I am only 47 and the idea of spending 5 years feeling as bad as I have felt since June 25 does not sound great. I felt better and had more energy the morning after my lumpectomy! I am seriously considering stopping the Femara. I see the oncologist on July 23 and plan to let her know that I would rather take my chances and feel half decent. My Mother had BC in 1993 and hers was bigger than mine. She had the same treatment and has been cancer free for 17 years. She never took any meds after her surgery and she still has her ovaries. My check-up mammo is Tuesday, so if it is clear, I am going to talk to the doctor about stopping the Femara and staying on the Effexor and being diligent about checkups. I am not overweight, do not drink, and eat a very healthy diet 99% of the time.
Has anyone else made the decision to take her chances on going off the Femara?
Denise
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I think I'm already having some bad issues on femara, too. I just started taking it a month and a half ago, so if it's this bad already, I'm really in for it!
My fingers and especially the thumb movement is weakened. I just posted about it last week (up above) but it seems to be getting contiously worse. Is this normal arthritis caused by the AI? I'm especially curious because after seeing my onc and telling her about it, I noticed down in the routine tests/orders she had ordered a whole bunch of tests that seemed to be for rhuematoid arthritis, lupus, C3 & C4 complements--don't know what that is. She ddidn't tell me she was ordering these, so now I'm nervous (what else is knew!) When I get up in the morning my ankles are also really stiff and they almost feel like they can't take my weight--they feel like they might just crack under the weight. Help, please!
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Denise...After 5 months on femara, I decided to go off....mainly to see that the side effects WOULD go away! I, like most, had severe joint and bone pain, numbness in fingers and hands, and 2 (almost) trigger fingers. Without telling my onc, I went off on May 23. After doing much research and not really finding a whole lot, but still realizing this drug has a great history of preventing reoccurence, I decided to go back on it on July 5. However, I am only taking half a pill (1.25mg). I feel like, from what I've read, this dose does provide estrogen suppression. I am to the point that it's that or nothing, so it has to help. I have had an ooph, hoping that is an advantage as well. The only side effect that went away the 6 weeks I was off, was the numbness in my hands. I still feel like I'm 90 years old...not exaggerating...very hard to move. I never had ANY joint pain prior to starting femara. I was very fearful what 5 years would do to my body. Yes, I do fear what cancer would do as well. And what I've chosen won't be the right decision for many. Please research, talk to your Dr. and hopefully you will find the best thing for you. I'm praying I can tolerate 1/2 a pill!!! I do see my onc next week and will discuss everything with him at that time.
Joni
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Now that I am finished Herceptin, there will be a chance to see if Femara is the culprit for my stiffness. As for feeling like I'm 90 - well, I do feel stiff, and justified in some moaning and groaning - but this week I am going to stay with my 95 year old father who is coming home after several months in hospital and rehab. I feel positively spry beside him! It's all relative.
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I have had Osteo arthritis since I was in my 20's, so I take Glucosamine/Chondroitin daily and have for many years. I also take 2 Alleve every night. I so feel a bit stiffer than I am used to, but I guess because I already have arthritis, I don't really notice that as much. I was tested for RA back in December before all of the BC stuff started, so I am sure that I am RA negative at this point. It does run in my family, which is why I got tested. I will see how things go with the Femara until I have taken it for 2 months, then decide. I think the oncologist thought I was being a baby when I brought up side effects, but I am definitely not a baby. I was up vacuuming my house the day after my lumpectomy and I have only missed two days of work in 10 years, despite having had a hysterectomy and cervical disk fusion surgery. We'll see. If I get the same impression from the oncologist next week, I may change to someone else in the practice.
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HI Girls,
Question for you - does anyone else get a weird "rash" around their toes while taking Femara? I have been to the doctors and they said they believe this "rash" is from the Femara, the same as hand & foot syndrome from chemo. At first we thought it was athletes foot but I tried all the remedies for that and nothing helped. I notice that if I stop taking Femara for a few days it goes away so I do think the doc is on to something. Just wondered if anyone else has the same problem. It starts like big lumps then the itching and then the skin peels off in thick layers. I don't wear closed in shoes at all right now, thankfully it's summer, but I also notice it gets worse with the sun. It's quite bad just now so I have stopped the Femara for a few days till it goes away as it drives me mad, it's like having huge mosquito bites and when the skin peels off it gets sore. The doctor gave me hydrocortizone cream to help it heal but no sooner has it gone then it's back. It's bad enough having feet and ankles that don't want to touch the floor on a morning.
Best wishes
Gaynor
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Gaynor,
I have a rash that sounds like that on my hands- we were thinking it was from the neratinib trial I am in but could also be femara. I am using a steroid cream right now because it got so bad!
Kristy
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After stopping my Femara for a month to see if side effects would lessen (not really), I am back on it, but with a few changes. I take the horrible little yellow pill at night and in the morning I take 2 Aleve tablets and 1500mg Glucosamine HCI. I truly believe my "aches" are better. I can't say I sleep any better though - hot flashes are still a major problem - but I do feel I can get through my day better. Now instead of feeling 76 when I'm just 56 - I feel more like 66! LOL Gotta be grateful for that at least. Hugs to everyone out there struggling with this nasty little pill.
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I have been Femara for two months and I have gained1 to 2 lbs per week. I can not keep gaining weight like this. Anyone else had weight gain on Femara? I'm going to see my onc. I started with Arimidex but I had terrible joint pain now with Femara no joint pain but weight gain. Help!
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SusanZ - Absolutely - weight gain is a side effect of all of the AI's - it's part of menopausal side effects and you've been thrown into the deep end of menopause with these drugs. I started on Arimidex also, then switched to Femara. I still have joint pain, but it's better with Gluclosamine and Aleve everyday. Best of luck
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susanz
I was post menopausal when I was dx. I gained about 22 lbs over the first 6 months on Femara. I didn't eat any more and some of it was because I wasn't able to do the exercise I had been doing but still it piled on. At 6 months the gain stopped thank goodness. At that time I was able to get back to some exercise but I think also that my body finally adjusted to the new 'normal'. I used to run 5 miles a day but sore joints mean I can't run at all now so it is walking and biking and tennis but they don't seem to burn up the calories like the running did - haven't lost any so far but am keeping at it.
Rae
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I am starting Femara on MONDAY. After 3 treatments of TCH I was in remission. Continued for 3 more treatments, and am now going to be on maintenance of Zometa, Herceptin and Femara. Yay!!
My first question is, is there a best time of day to take Femara. My next questions are - how many of you experienced joint pain and hot flashes? Also, how about weight gain? Just curious. Thanks for any help you can provide.
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(((I've been taken off of Femara and have 23 extra tablets - pm if you want me to mail them.. i know they are very expensive for some people))))
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I have not had one side effect to Femara at all. Each person is different. When I was first diagnosed in 2008 I was on Taxotere & Cytoxen and not 1 single single side effect except hair loss. Then I was on Tamoxifen and again not one single side effect but my estrogen came back and so did my cancer so I went on Abraxane & Avastin and again not 1 single side effect except hair loss. Now I am on Femara and guess what not 1 single side effect. I personally attribute this to the fact that I work out 6 days a week no matter what. And I have the cleanest diet ever.
I have talked to people who were on one drug and had horrible SE's and then they switched and never had another one again so I guess it just depends on the person. And I thank God every day that I was so blessed to not have any SE's
Jennifer
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Wow another forum to look for answers. I have been on Femera for 1 year. Hot flashes, insomnia, no libido, joint pain, night sweats, high cholesterol and severe digestive problems about once a week.
Will try the supplements for the pain and do find walking is best. Anyone else have problems with their gut? I have done the yogurt, pearls, cut way back on carbs and fats, but still feel like I have been prep for a colonoscopy every week.
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flachica - I find evening is best for me - but you may have to try both morning and evening - seems everyone has different reaction to the little yellow pill. Keeping my fingers crossed that you don't have major side effects on it.
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I now take Femara at night right before I go to bed. That seems to work much better for me. I did not have any hot flashes but major joint pain. It's been 1 year now and I think I have finally gotten the right combination of vitamins and exercise. I work out 4 times a week and that has really helped with the joint pains and the weight. It's been a long year but it is worth it. I have 2 grandchildren coming this September and I'm looking forward to dancing at their weddings.
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check out the arimidex link, one gal (MTG) included an article of a study that shows if we gain weight our AI won't be as effective i.e. we should be within the normal range weight wise. Boy that little pill comes with a nasty punch: for some of us it makes us gain weight and if we become overweight the pill is less effective. Gosh. I was on arimidex, then aromasin and maybe on femara in the fall (on holidays at the moment because of severe joint pain caused by the AI;s) The ones I took made be put on lots of weight, so does this mean I may as well have not taken the pill at all. Mmmm, I wonder, not a pleasant thought.
Glenis
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Unlike most ladies on this topic, I am just about to finish my 5 years on Femara. I am scheduled to see the Onc. on 9/7. However, my current prescript. will run out before then and I am not going to get it refilled (which would be for another 3 months due to insurance plan). I am going to take the 30+ remaining little pills and celebrate my 55th bday (8/30) by not having to take a Femara that day. I have not had even so much as a three day's break in the five years and even if the Onc. wants me to continue Femara or switch to something else- I will have had a little time off. The side effects have diminished or just become a normal way of life now and I don't pay attention to them. I have had only minimal weight gain, but try to go to the gym and really work up a sweat 4-5 days a week. I am a three time survivor and don't take this decision lightly at all, but I think I will enjoy not taking the pill or at least having a break from it. Each of us has to make our own decisions so my thoughts and prayers are with each of you. To quote Lance Armstrong- "Fight like Hell".
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aspen-thanks for your post! Today is the start of my 9th month on the little yellow pill. I have joint pain, intermittently, hot flashes, fairly frequently, but I feel like it's better to take than not. I like your determination!
flachia-when I start in Nov '09, I was taking pill in AM & had horrible fatigue. Switched to bedtime in January. What a difference, for me.
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I have been on Femera for 14 mos now,i have the neuropathy in my feet,legs,hands etc,they affect me mostly at night while trying to watch tv in my recliner.My feet burn,hurt tingle and it goes up my legs as far as my knees so far.My toenails are ugly and they feel like they are growing inward,they're not.My wrist both hurt a lot of time ,and the right more than the left,i have to wear a brace on it when i drive.I also have some back pain,and pcp had me get a bone scan a couple weeks ago,nothing was found,thank goodness.
Jacee,how on earth do you cut that little tiny pill in 1/2,it's so small and slippery....
I was on aromasin first and the SE'S were much worse.
Oncologist had put me on Lyrica a few months ago,i didn't last 3 weeks on that,sufice it to say the se's to me were'nt worth it,as i told the dr,i couldn't live like that as it wasn't living.So i went off it,and yesterday he put me on neurotin,told me to only take 1 for the first week at night b4 bed,then the next week work up to 2 and so on til i'm taking 3 a day IF i can tolerate them....
Still have hot flashes as well as chemo threw me back into menopause,i'm 72 now and thought i was done with that,surprise!!!
All in all i take it a day at a time and do what i can,and for an old lady i do a lot,especially gardening.Most people don't believe me when i tell them my age,they think that both dh and i look good for our ages,he's 73,even the dr's have told us that!!
I also told the onc yesterday that my hair is still falling out and he said he has a couple patients that say the same thing.I had to get a finer strainer for the tub so all that hair doesn't go down the drain..
Hang in thei gals,we can do this!!!!!!!!!!!!!!!
Kathi
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Question,How come all my post say Edit delete under them,am i doing something wrong??????
Kathi
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Kathi-those "edit" "delete" buttons are options for you. Edit is for adding to or subtracting from your post. Delete is to get rid of it for whatever reason.
Joni
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kathi..haha...it was a little tricky to cut the little pills in half. Used my big Wolfgang Puck knife witha rocking motion. Got on a roll and cut them all in half at once! I DO feel much better only taking half...tho it's only been 2 weeks now that I started back.
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That's crazy Jacee,i can just picture you doing that.Me i have to use my fingernail to even pick it up out of my pill container.
Onc put me on Gabapentin aka neurontin for the neuropathy since i couldn't take the lyrica.We'll see how this goes.Fell yesterday,don't know if i lost my balance from the meds or slipped in the water as i was watering my potted plants.Didn't get hurt too bad,just a bunch of bruises,and scratched up my glasses and messed up the frame on them.Glad it wasn't any worse.Falling is a scary thing when you get to be my age.72.
Kathi
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Kathi
I am sorry to hear you had a fall but I am glad to hear you didn't do any more damage to yourself than bruises and scratched glasses. Falling at any age over 40 is scary. My husband fell off his bike yesterday but he was unhurt and we were able to have a good laugh about it. He has a new bike with pedals that special shoes fit into and you have to twist your foot to get the shoe out of the clip. We were going along a boardwalk and he had to stop for a lady with a buggy and forgot about taking his foot out. I saw him in slow motion just fall over to the side - but hey presto, his feet both came out of the clips as soon as he hit the ground! We laughed on and off for the rest of the ride and he was VERY careful when we went out again today!
Rae
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Hi Kristyann,
I think I've found out what the "rash" is - it's a form of eczema called DYSHIDROTIC ECZEMA. It can be brought on by all kinds of things, stress included. You can google it to find out more. I was trying to find out as my family doctor said it was hand & foot syndrome but when I looked that up it didn't quite look the same and that usually occurs during chemo where as I found this started after all the chemo treatment was finished. I do think that by having gone through the chemo treatment it changes our DNA forever and therefore we are more susceptible to other things that our bodies never reacted to before. I do find that STRESS plays a large factor in most everything that now happens to our bodies, it's like having gone through the BC thing our bodies just don't tolerate things life throws at us like they used to do pre-BC. Having checked out the eczema thing I will follow the care instructions the website recommends and see if that makes a difference as I do not want to have to use steriod creams all the time as it's not good for skin to use it long term. I did try the zinc oxide cream last night and boy oh boy did it make a difference to the itching & burning so I know I will continue with that until this episode goes away.
Well have a good day everyone.
Best wishes
Gaynor
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Just an update....Started femara Jan....quit on May 23 due to severe pain in joints. Stayed off for 6 weeks. Started back on July 3 taking 1/2 a pill.
Finally went to onc. Discussed what I had done. He doesn't really like me only taking 1/2 a pill. But he noticed I had gained 12 lbs since last visit. I told him, I did good to get up off the couch, much less exercise, as much pain as I was in. This now puts me about 50 lb overweight. He agreed that if I take a full pill and can't exercise and keep gaining weight, my body will be producing alot more estrogen from the fat. He thinks losing the weight would be most beneficial. I asked him if it would be better to take a whole pill every other day, or 1/'2 a pill a day. He said 1/2 a pill would provide a consistent level every day. 1/2 is working much better FOR ME. Please note that he still doesn't like it, but he knows it's either that or nothing for me. I am able to do 3-4 miles a day walking...still hurt afterward, but I'm going to do it if it kills me!!!
On a side note, chest xray was clear, tumor markers are at 15 (CA 25-27). All lab was normal. Other than gaining 12 freaking pounds...a good report!!
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Sharing my femara experience - started in 11/09. Initially, fine - after a couple of months had a slight feeling of creaky joints in the morning (I am 46 and thrown into menopause early by chemo like many of you). By spring, still not too bad, but have no sex drive (sorry if tmi). Don't think I had gained weight, but could not seem to lose the 10 pounds I gained during chemo.
My onc. told me in June that yes, many women gain weight on femara, but she felt it was menopause metabolism related, and told me not to get psyched out - it is possible to lose weight on femara.
I started running (have never been a runner but have usually done some kind of working out). I LOVE it. My joint stiffness in the morning is gone, and I have lost 10-15 pounds and my other issue is completely resolved. It was hard to mentally decide to run but I figured if the contestants on the biggest loser can run, I can run. I started gradually, and at the high school track that is very cushy. Run two laps, walk two. I now can run 8 laps fairly fast.
Thought I would share!
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aprilgirl1-what a studette! I think I would pass out if I tried to run! But I walk several times per day.
I too have gained some weight. Scale doesn't say as much as I feel like I've gained & it's all settling in my stomach so I know it's the worst kind of fat!
I just need to ramp up my resolve to do something about it!
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GaynorI....For your exzema, try this....Get the packets of Domeboro...Walgreens....& try blotting that on the itchy spots. I mix mine with water in a little plastic container, blot it on with my fingers, & use it about 3 times a day...then refrigerate it...or not! Then I rub a little Caladryl on it. And you are right stress can REALLY cause any rash to flare up. Just don't scratch it! Makes it so much worse. Let me know....xoxoxoxo
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eph3 - same here re: belly expansion...that is where I was gaining - nothing like an expanding waistline....scale isn't that much higher but couldn't zip my pants!!! I have never been a runner, so far it is working. I felt fairly defeated when I started Femara like that I was destined to be chubby, so i'm happy to see some results.
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Hi everyone, yeah I'd be afraid of passing out for sure. But I walk also.
Sorry you fell Kathi. I hike alot in steep terrain and I am worried about the Femara. I already deal with just about all its side effects every day from CFS/FMS and Spine problems, except the hair loss, so not looking forward to it! In fact I do remember alot of research about FMS/CFS that adrenal blowout can cause the FMS symptoms, which is exactly what we are doing now. Downright crazy thought, but I need to know exactly what they are shutting down in my body and where I can get a test to see what I hve left producing to begin with. Any way to track the production rather than the destruction by the drug? Thnx if you have any links to that.
Due to start the Femara, after radiation. I need to have a long talk with the Onc. I'm beginning to wonder myself, Jacee, if the pill isn't too strong to begin with for everyone! Remember birth control 30 years ago? 10X too strong! I think we should all speak up about this. It's just not right, and does anyone know exactly how much production of their adrenal glands need to be shut down to be safe? I've been researching that part and can't find much. All I have found is thousands of women who are suffering from this drug, which is widespread.
Sometimes I wonder about the drug being too high a dose, just to make sure [for the drug company] that the numbers beat the Tamoxifen, because one must REALIZE this has to happen if they want to sell it! ;~) And I'm in no mood to age myself to 80 in a hurry, just in case I don't live that long! [jus some funny, realistic sarcasm which I have developed recently. Please excuse... lol]
Take care everyone. I wish the very best for all of us.
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soulswithin-Very interesting line of questioning you bring up. Have to admit I'm a dog in a dog & pony show--do as I'm told, don't question very much. I think that the line of thought of determining how much one's body is producing before being placed on a one-size-fits-all pill is a great idea. I'll be asking at my next onc appt which isn't till Sept, but I'm writing it down now, so it doesn't pass thru my swiss cheese brain! Thanks!
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Guess I'll chime in here. I have been taking Femara since May 4. I developed terrible hip pain which made walking UP steps difficult. I have gone to chiropractor 5 times, and he really worked my hip joint over. Surprisingly, hip is much better!! When I first started on this drug, I had hot flashes, night sweats and woke up in the night unable to go back to sleep. I was also very irritable. Mind you, I went through menopause over 10 yrs ago!! Onc put me on a very low dose of Effexor (25 mg). It has helped the hot flashes tremendously. I also take the Femara at night about an hour before bedtime. I still wake up at night, though, but I did that before all this cancer business, too.
I am 62 yrs old and have gained 15 lbs since doing the chemo and being on this drug. Bottom line -- I now have a big belly!! Ugh!! I have to get with an exercise routine, but the hip pain has made walking difficult. I'd like to hear from other 60-something women as to how you are doing on this drug.
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Emegram -- I'm a year younger than you and have been on Femara for 21 months. I've also gained about 15 pounds -- ALL around my middle -- and although I go to the gym regularly and am quite proficient at sit-ups (!) and walk a great deal, and have a pretty low-fat diet and small portions, I just cannot lose this weight. Unlike AprilGirl, I cannot run -- tried it last summer and did some damage to my knee so that was my warning that running is not for me!
As for aches and pains -- I do go "Ouch ouch ouch" when I get out of bed in the a.m. because of really painful feet, but a hot shower gets rid of overall aches. I did have some months of very painful wrists, but now that seems to come and go, usually with weather changes.
Never really had hot flashes during menopause (just "warm" ones!) and haven't experienced any on Femara. However, the one SE that I really find annoying is daily sinus-like headaches. They usually occur in the afternoon and I've ruled out everything else (process of elimination) so I'm fairly sure it's the Femara (which I take in the evening after dinner).
So that's my story!
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My side effects from femara went away after one year but unfortunately femara is no longer available in my country. I`m from Bulgaria in Eastern Europe.They substituted it with a chipper one. The side effects are terrible,I feel nostalgy about the time i was on femara.
Best wishes
Krissi
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Re dosage
I found this on a body bulding site which discusses Femara use to reduce estrogen:
Chemical Name: Femara
Drug Class: Type-II Aromatase InhibitorLetrozole is Novartis' entry into the breast cancer treatment world. It's a Type-II Aromatase Inhibitor (AI), which means that it competitively binds to the aromatase enzyme and inhibits the enzyme's ability to metabolize testosterone into estrogen. This drug was developed to fight breast cancer by inhibiting the aromatization.
Letrozole is probably the most powerful Aromatase Inhibitor used by athletes today. It has been shown to reduce estrogen levels in women with breast cancer by 98% or more (1). SO clearly, it's useful for administration to male steroid using athletes who are eager to prevent some of estrogen's nastier effects on their bodies- development of breast tissue, water retention, etc...
.... As you can see, Letrozole is a very powerful drug, and as a result, only very tiny doses are necessary. An effective daily dose of Letrozole for most people is usually about .25-.5mg/day, even though clinically, it is typically used at 2.5mgs/day. Twenty micrograms of Letro was enough, in one study done on men, to reduce estrogen levels by almost a third. (4)
Letrozole's effects on cholesterol are, really difficult to pin down precisely. They are, in the words of one researcher: "inconsistent." I can tell you that in my opinion, reducing your bodies estrogen to virtually nothing, will eventually take its toll on your cholesterol profile, and will kill your sex drive and your joints- all of which require estrogen to function safely and effectively.
Even if you take very low doses of Letrozole, it will build up to reasonable blood plasma levels, as it has a 2-4 day half-life, and this long half life also means you need to take Letrozole for 60 days to get a steady blood plasma level (5), and that it will take a very long time to clear out of your system.The whole article can be found and there are plenty of similiar articles if you Google femara bodybuilding.
These articles show that on these men, who have larger bodies than us and take drugs that increase estrogen production markedly in their bodies, that a very small dose can be effective in reducing estrogen production to virtually nothing ie .25 - .5mg and we are taking 2.5mg. However, having said that, when they use it clinically to treat gynecomastia (enlargement of the breasts because of steriod use) they build the dose up to 2.5mg over 5 days, retain it there for a week or so and then reduce the dose gradualy over another 5 days. From reading, I think we are probably right to assume that a lower dose may well be effective for some of us but I think it is a bit of a gamble to just drop the dose without having tests to monitor our estrogen levels before and after dropping the dose. My other thought is that when we go on other drugs for cholesterol or high BP we are usually started on a low dose and then tested to see if it is effective and then the dose is adjusted up if necessary. If Femara is so potent why doesn't this happen with this drug too? I can see that oncs want to use a sledgehammer approach to stop any cancer cells in their tracks but surely it would be possible to safely adjusted the dose down over time if SEs are a major problem?
As with all this BC treatment we have to be proactive and ask the questions and maybe patient pressure over time will alter the way things are done.
Rae
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Thanx for the useful information, Rae and everyone. Sorry I took so long to get back here.
I've had Shingles lately and still have one more margin surgery this Fri, so I had to get away from the cancer stuff and keep my mind free of stress. So I took off and rented a boat and photographed bald eagles and bobcats. A great distaction! ;~) You can see why I worry so much about the Femara and I'm not even on it yet. It takes everything I've got physically to do what I do at age 61, and Femara may put me over the edge of not meeting the physical demands I already endure.
I've already gained 8 lbs. and havn't even started femara yet,
and swiss cheese brain it is since the surgeries. Headaches from another heart pill I take, FMS/CFS fatigue and pain, spine and joint problems already! Exactly, Rae, I understand why the doctors want to sledgehammer the cancer, but I think it will take another 5 years until they figure out dosage......in the meantime, Femara is making the drug companies a ton of money and we are the ones making their agenda trials successful, and we remain alive, our lifespans result won't be available for years to come. Thanks for the leads on doses for athletes.
Hope your days are good ones this week! I've had a few glorious days with wildlife this week, and now happy to settle down and get this 3rd and hopefully LAST margin surgery done friday! I'll face the radiation/femara anxiety later I guess.
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Recurence or poor quality of life that is the question...or maybe not.Who knows?
Is there any valuable statistics about how long femara could keep us cancer free?
Thanks for your postings with useful information.
I am glad I speak English good enough to read them and wishh you all the best and enjoy the summer!
Krissi
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Krissi
You do very well with English. I wish I could speak another language but am glad my native language is English as I believe it is very difficult to learn.
Aromatase inhibitors (AIs) are relatively new drugs so there are not very many statistics available on their effectiveness long term. As soulswithin says, those of us who are taking the drugs now are the ones trialling the drug long term so it will be a while before many valuable statistics are available. In theory however, if hormone therapy works for an individual, it could keep us cancer free forever but the side effects from estrogen depletion (which is what the AIs do to us - stop our body producing estrogen) long term are not good - organ damage, especially heart being the worst. My concern about Hormone therapy is that it does not kill the cancer cells as chemo does - it only stops them growing, sort of puts them into hibernation. The hope is that the cells will either naturally die off after a certain length of time or will 'starve' from not having estrogen to grow on. When I asked my onc how long the cells take to die he said they do not really know and it could easily vary from person to person so the standard time for taking AIs, if it is 'insurance' HT, is 5 years (the same as Tamoxifen) hoping that that will cover everyone. Women with a higher chance of recurrance however are commonly kept on HT for longer ie some women are on Tamox for longer than the standard 5 years and some women have 5 years Tamox and the 5 years of AI.
Wish it was summer here - I am in New Zealand and we are in the middle of winter
Rae
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Rae
Thank you!
My own researches gave the same results. All my information is from Internet though.Doctors here are very reluctant to speak with their patients .
So enjoy the winter then. The temperatures here are above 90F/30C.
Krissi
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while taking femara what is the survival rate increase. My onc told but can't remember what she said
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Hi Nanna,
I think my onc said around 50% less chance of recurrence but I don't think she gave a survival rate as that depends on so many other factors too, it all depends on your initial diagnosis and prognosis though, what your % of ER & PR+ was. For me those % were high, around 85 - 90%, I seem to remember. Unfortunately, or fortunately, we get bombarded with so much information early on that it all seems to get confusing, maybe it would be a good idea if they gave us information drip by drip so we could digest everything. I have come to the conclusion that it's all just a guessing game, they give us all the means available to try and fight this thing from coming back but in the end it's down to good luck and fortune - we have to remember there is no cure right now, just ammunition to keep fighting back. We are fortunate that we have all the medical means we have, years ago many of us may not have still been around to tell the tale and complain about the side effects of the drugs we take - that's the conclusion I have decided to come to, let's just be thankful for what we have and take each day as it comes.
There is a thread going on right now on ARIMIDEX where ladies are "fighting" over the whole survival rate thing, it's getting quite heated and I'm not sure it's all worth it, but maybe you can find some answers there.
Best wishes for the weekend,
Gaynor
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Gaynor - I am with you on the statistics issue. We know Femara helps - and that's all I need to know. The statistics can't tell on what side of the numbers any person will land. There are no guarantees.
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Has anyone lost weight while taking femara? If so how did you do it.. I am not having any luck
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Not me - I gained about 20lbs in 6 months and only managed to stop the gain when I got my sore joints under control a bit and was able to get back to regular exercise. Haven't lost any though as I can only walk, ride and play tennis a little - used to run 5 miles a day and that kept my weight just right.
I am thinking I will just have to go on an 'eating less campaign' for the first time in my life. Don't want to call it a diet cause I will never stick to it.
Rae
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Hi Girls... I have an un-opened container of Femara - Letrozole Tablets - 2.5 mg - 30 tablets....free to good home. My Onc gave them to me and I decided to not take them. I will be happy to send them to someone here - hopefully to save someone "a few bucks". PM me if you're interested. Be well. Best wishes to all of you!
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Haven't been on here for a few weeks. Looks like all of my complaints about Femara are shared by most of you. Went to ONC last week and talked about my joint aches. Told him that with the research I'd done I knew it was from the Femara - oh no, he wants to check me for rheumatoid arthritis. Also took me off the Femara for 2 weeks to see if I feel better. Gave me Tramadol for pain. Felt like it was working first few days, but other than making me really sleepy, don't see much difference. I actually have lost some weight since starting the Femara. I seem to get full quicker and make myself just stop eating at that point instead of finishing my food.
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So much info .... after skimming through the posts here I am as confused as ever ... LOL
I was declared in remission just this last wedneday. I started taking femara the same day. Less than a week & I am already having significant side effects ... muscle pain and weakness, joint pain, and nausea. These are very similar to the effects I felt when I was having chemo. I do have RA (rheumatoid arthritis) ... but the way I am feeling is worse than a usual flare up. I have been taking motrin....it is not helping the pain.
I know that recovering from cancer takes time ... and chemo & radiation effects can last a long time. And now side effects from Femara ... this is no way to live :'(
During radiation I started walking and doing water aerobics .... I want to be able to continue these activities ... but hard to do with so much pain.
I plan to call DR tomorrow and hope he has some answers for me ......
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njdalex10 - What you are feeling seems to be the normal side effects of being thrown into the deep end of menopause due to the Femara stopping your body from producing estrogen. Estrogen is needed to help joint movement. I have taken to taking my little yellow pill at night. I take 1500 mg of Glucosamine HCI and 2 Aleve every morning - major difference in my joint pain. Still working on not being able to fall asleep and the hot flashes - but at least I don't feel 20 years older than I am anymore! Best of luck to you. I think you will find that your DR will not have much to offer you in relief of your symptoms. They have a tendancy to brush our aches and pains aside since they've taken the cancer out of our bodies - stop your whining about a little pain.
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Femara makes me hurt in places that I didn't know I had on me.
I've been given prescription after prescription for various SEs to the chemo treatment, so I know when the worst of the worst started. It has to be the Femara. I have had pneumonitis and other breathing complications. I really don't need something that makes it even more difficult to breathe.
Most medications say that the physician has decided that the benefits outweigh the side effects for you. Horse hockey. I'm not buying it.
sessna1
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I just got that same diagnosis from blood work. I'm wondering if that just shows up in people on femara, or people who have been through chemo. Maybe doesn't really mean we have an autoimmune diseaese.
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Wow...again...I just started taking Femara, a couple of days ago, and I'm ALREADY feeling these AWFUL ses!!! I almost feel like I'm going through chemo...
It's good to know this thread is here, as I'm sure I'll be coming here quite a bit now???
I hope y'all have a good week, or as good as can be???
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I haven't posted on here for quite a while-doesn't mean any of my side effects have gone, tho. I have been on femara since July of last year and side effects are worse now; doesn't seem like anything gets better. Besides the side effects I had been having, am now getting the headaches in the pm around the same time every day. My left arm (most lymph nodes removed in 94 with mastectomy) is giving me fits. Underside is numb from wrist up to shoulder; but still "burns" at times; it is swollen more; and the lump under my arm (recurrence in May 09-surgeon couldn't get it all because had attached to an artery)-well the size of it has changed in the last month. I have an appt with onc next month. Am anxious to see if everything is ok or something going on. The worst side effect is problems I am having with my respiratory system BUT my onc doesn't want to hear this. Kind of funny, tho, didn't have this problem til the femara got into my system really good--like 6 or 7 months. Is anyone else having this problem? PLUS I look like a 64 year old pregnant woman; I know I am getting older but this weight gain is ridiculous. I went from size 12 pants to 16 and have to take up the legs because they are way too big-must get this size tho to take care of the "belly". And have to buy larger shirts to hide the stomach!!! I am afraid to stop the femara tho, mainly because they didn't get all of my cancer and the dr. says it will choke the cancer to death. Guess we will see!!
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Getting ready to get zometa infusion.I was just wondering if after you get zometa infusion do you have to keep taking those calcium and vitiamin d pills
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THat's a good question. Does anyone know?
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Has anyone figured out a way to kick start some weight loss on femara? Seems like I am stuck no matter how little I eat
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I've really thought about the weight loss thing. For some, I wonder if it is because Femara has put you into premature menopause. I had already gone through menopause before being dx. with pc. About a year before being dx with bc, I found out I was diabetic. I lost about 45 pouds prior to mast surgery, etc. I gained back about 20 of those pounds during chemo eating too many carbs. What it took before bc to lose this was to restrict my caloric intake to approximately 1100 calories a day. After about 3 weeks of this, the weight just fell off. I haven't been able to force myself back to that strict routine again, but I have lost a few pounds recently by just cutting back on portions, not snacking on carbs, etc. I just don't know if I even start this again, if I won't lose. That would not be fun.
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With nothing else working, I have decided to walk 3-4 miles every day..no matter what!! I've lost about 3 lbs. in the past 4 days. But, I can lose that much in a day some times just between morning and night. Then bammm, it's back the next day. So will just have to wait and see how this goes.
FYI--I'm one who cut my femara back to 1/2 pill a day due to s/e's. I've been on 1/2 pill for a month now after taking 6 weeks off. S/E's didn't go away during 6 weeks, but haven't progressed any further either. Still severe joint pain, terribly painful feet with numbness....surprisingly, my feet don't hurt when I walk. Hoping the walking gets me in shape. I'm having reconstruction on Sep 3, and know I'll be down for a few weeks at least.
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Did anyone start having ses immediately, after starting Femara, or am I the only one??? I think the 2nd day I started taking it, I started feeling the effects...and damn it all to hell, if I have to feel like this for two years??? Y'all are troopers for dealing with the ses!!!
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Where did you get the dissolvable glucosamine- I may try that- Ive been on femara since January 2009 and my achiness is at a high point currently. I am also in a neratinib trial which doesnt say it has those same side effects- but truthfully it is hard ot know what is femara versus what is neratinib. My trial ends Oct 7 so Im trying to hold out until then to see if anything goes away when that drig stops.
Kristy
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Sharon, I think my se's were noticeable after about 2 weeks. Hang in there!!
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Hi nanna,
(I had to delete the above message because at the end of it there was a lot of garbage - turns out it came from some program I had downloaded - got rid of it and now I can post normally again).
I just wanted to say that my onc also said to continue to take calcium and vitamin D. I had my first Reclast infusion about 10 months ago and am looking forward to my next Dexa scan - I sure hope my T-score is better - hope you do well on it, too.
Hugs,
Karen
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I have found that the caution in the fine print about sun sensitivity is all too true. If I stay in the sun, even with sun screen, my forearms become red and really really itchy. Sometimes the red turns to little blisters. My current plan is to stay out of the sun and/or to get one of those shirts with long sleeves that advertizes itself as acting as a sunscreen. Any one else have this reaction?
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I found out the hard way about the sun also.I know i had read about it b4,but with swiss cheese for a brain these days i had forgotten.
I was working out in the yard one day,had on the long sleeves,but no hat.When i came in about 4 hours later and got in the shower,my head hurt when i washed my hair,didn't think too much of it ,the next day it was even more sore,so i got my hand mirror out so i could see the back of my head and my bald spot,and sure enough it was beet red and sore as hell.After a few days it started peeling.Now i try to remember to wear a hat,even though i hate them.
Kathi
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I took Femara steady for about ten months and the side effects snuck up on me. I quit for about six weeks because of arguing with my ins. co. Went the the onc and he read me the riot act so I started back and the se came roaring back with a vengence. They were nowhere near this bad before. I am rapidly developing trigger fingers on my left hand and the shoulder on that side stays sore all the time, and the bone pain is far worse and more widespread than before. I am starting on a study next month and will start Zometa. Maybe that will help with the bone pain.
I just got one of those shirts they sell on HSN with the built in sunscreen but haven't tried it yet. Will let you know how it works. Darla
PS I had massive liver mets with new spots on lungs and bones and the Femara has cleared them. They were not visible on my ct or bone scan, so I guess the se are worth it. Darla
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darla - fantastic news that the Femara has cleared the mets. I can understand why the onc read you the riot act after a dramatic improvement like that - he would hate to see you relapse when you have had such a positive result. Great news for the rest of us too - it certainly encourages me to keep taking the drug and deal with the SEs.
Rae
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kdeit, what is reclast? Is it a bisphosphonate?
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Hello all,
Right now I'm just posting so that I can get this topic to be a "favorite." I've spent the evening learning from all of you. Both sad and glad to find that my side effects are not uncommon.
Rae, I am 65, active like you, was in pretty good shape when all this started.
I have been on femara for about two months. It took me a couple of weeks to figure out that it causes nausea. (I thought I was sick and stayed in bed for a couple of days!) I also have minor joint/hot flash/fatigue issues but for me the worst is that I seem to have lost mental acuity. I keep making stupid moves. This happened "all of a sudden" so I think it's the femara. I guess that fits with the estrogen suppression, since some people do hormone replacement therapy to help keep their marbles. I really like having marbles though.
I will post again when I have something useful to say. In the meantime, I will be learning.
Thank you.
Deirdre
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Welcome to the boards Deidre. Yep, you do learn heaps here and it is 'real' information from those who have been there before you. When you are reading however, remember that everyone's experience is influenced by many factors other than their cancer's characteristics, so read lots and then decide on a middle ground. You will also find friendship, support and real understanding here so visit often and keep in touch.
I agree, I like having my marbles too but some days I feel definitely ditzy. I find that I can usually think alright but it is thinking translating into doing where the problem lies for me - the body just doesn't seem to get the message straight sometimes. Now that I am aware of it I just make sure I check after I have done important things and when I am driving I don't have any music on anymore - too much distraction - I need to concentrate.
Rae
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so is this my excuse for doing poorly at playing bridge these days?!
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lassie11 - lol! Doesn't seem to have affected my tennis - I am playing better than ever since getting back into it following dx - maybe brawn is more important than brains after all!
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I'll bet that you play tennis in the daylight. My last (really bad) game was in the evening - how about if I use as an excuse that Femara can cause fatigue and when the bridge game is in the evening I am too tired to focus properly? Then I could choose the daytime games and see how that works out.
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Hi Weety,
Reclast is Zoledronic Acid. Here's a link to their website:
www.reclast.com
There's more information there.
The way my onc described it, is that Reclast is about 100 times more powerful than Fosamax, and so I'm hoping it'll help get my T-score back up again.
Hugs,
Karen
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lassie11 - I play tennis day and night but am better in the day. Good idea to try Bridge in the day - nasty thing this Femara fatigue - nothing seems to ease it and I am definitely struggling to focus by evening. I used to play Bridge when I was younger but haven't played since the kids arrived - I wouldn't have a show of playing at all with this Swiss cheese brain!
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Post deleted by member
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pat - it is so depressing, after all we have been through, to have to struggle with weight too
I exercise and my DH says I eat like a sparrow (which is a bit of an exaggeration) but I haven't lost any of the 25lbs I put on in the first 6 months on Femara and I always feel as though my fat cells are desperate to pounce on any extra calories and plump up.Best of luck with your decisions
Rae
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Well here I am back on Femara, or should I say letrozole now as it seems we are now on the generic brand here in Ontario. I had a little vacation as the rash thing on my one foot got so bad I had to stop taking the little orange pill till it more or less cleared up. I tried arimidex for a short time too but had the same problem. The insomnia quickly returned but instead of being constipated it's now gone the other way, not good either - not sure which I prefer.
Had my annual mammo & ultrasound just over a week ago and I haven't heard anything yet so I'm taking it that no news is good news. I feel some lumps and bumps and I get strange feelings in my armpits but if nothing shows on the mammo etc then hopefully I can assume everything is ok and it's just my imagination. Does the paranoia ever go away? I guess not!
Luckily for my so far I have not had any weight gain issues - still at 95lbs or there abouts, remained that way throughout treatment - excellent metabolism rate I assume. I do wonder about the bone density problems as my last bone scan showed a loss but I am not eligible for Zometa even though it was advised by my onc, it is not a standard of care in Ontario yet so I will see what alternative they come up with next month at my onc appointment.
Well just thought I'd touch base as I haven't posted in a while, wishing everyone well.
Gaynor
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I have a lapband and lost a lot of weight pre BC- but not all of it. I did not ever have my band tightened furing treatment thinking I needed all the nutrition I could get and really didnt know what side effects I would deal with. HOWEVER, now that I am through that I am going Saturday to have the band tightened to see if that will help get the weight loss going again- I relaly would like to lose another 20-30 pounds! Exercise almost daily so I am thinking the combination might work- when they tighten the band I will have to go really low carb and higher protein for a while to make sure I am getting in the needed protein daily!
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So reclast is the same as zometa???
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I have been on Femara for 14 months. I have some of the normal side effects that everyone is talking about but I also have a feeling of nervousness and anxiety a lot. I first thought it was from being diagnosed again after 17 years of being cancer free. I had my gall bladder out and it was breast cancer in the gall bladder, bones, skull, ovary and a few other places. I thought maybe it was from that but when I look back I started Femara 2 days after being told it was a breast cancer recurrence. I am wondering if anyone else has had the nervousness and anxiety. It is not every day but then neither is the sleeplessness an every night thing. Also there are days I just have to lay down for a few hours and rest, my body seems like it just can not go on and I feel like I did 17 years ago when I took Chemo, when you reach the point where you just hit the wall. Has anyone had any problems like this? Any help would be appreciated. Thanks
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Hi weety,
I believe it is, but it's not as strong. My onc is hoping Reclast will work, if not, then I'll go on Zometa. Are you on it?
Also, I just did a little research, and both Reclast and Zometa are zoledronic acid (which you already knew) but I found that zoledronic acid is a form of bisphosphonic acid, which I had not realized.
Hugs,
Karen
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I have taken Zometa for the last year once a month and now will take it every 3 months. I was told to continue to take my calcium with vitamin D in it, 1800 of calcium but I don't think he ever said how much D. I guess I need to ask him when I go in a couple of weeks for a checkup and Zometa treatment. I think I am taking 1000 of the D. I have had no side effects from the Zometa that I know of, does anyone know if there are any side effects from it?
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Is anyone else experiencing headaches on Femara? Every afternoon I develop a mild but annoying headache which sort of feels like a sinus headache, which eventually dissipates with an advil. I've been on Femara for 2 years and this seems to have started at just about the time my hand and wrist aches disappeared. How about that? The aches just move around.....
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After about a year on Femara that's what I'm finding too - the aches kind of move around. My hands are feeling a bit better and now my knees are complaining a bit. No particular headaches to report - maybe that's something to anticipate at the two year mark!
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jeanie - I am sorry to hear you have had a cancer dx again - it must be horrible to be having to go through all this emotional turmoil again not to mention treatments. I don't get the anxiety but I do have the fuzzy brain/ lack of concentration problem, sleeplessness and the fatigue, which sounds very like what you are experiencing when you say you 'hit the wall'. The fatigue is there from the minute my feet hit the floor in the morning but I get up and make myself keep going but sometimes by 4 or 5pm I just have to lie down for a while - my body also just feels like it can't go on. It is very like the tiredness I had post bmx for many weeks but I didn't have chemo so I can't say what that tiredness feels like.
lindsa - I don't usually get a headache but most days I feel like there is one lurking in my forehead and quite often I take a painkiller just to clear my head. About a month after I started Femara I had to go on a hayfever prevention nasal spray as I was getting stuffed up noses most afternoons and it was hard getting to sleep with it bunged up. I hadn't had to use one before and I thought is was just the very dry summer we had had getting at me but when I went off it last winter the stuffiness came back so I am sure it was the Femara doing something to my sinuses. The nasal spray keeps my nose clear but the 'almost' headache is still there quite often.
Oh man, how many other 'annoying' SEs are going to raise their ugly head over the next 4 years? I AM SICK OF FEELING SICK ALL THE TIME!!!!!!!!!!!!!!!!!!!!
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On the subject of headaches - YES YES YES ! I'm a migraine sufferer and I have been going through my Maxalt like it's water and it ain't cheap! Extra Strength Excedrin is also my friend. Fatigue is becoming a major problem with me also. No strength or desire to do things that should and need to be done. I'm very grateful to have an understanding husband about this. I feel like I'm not keeping my end of the marriage up somedays. I still have reconstruction surgery to get through the end of October and I know I won't be in any shape to do the normal daily tasks around here. Trying to plan a September wedding for my daughter and get Christmas shopping done before reconstruction - maybe that's why I'm tired??? LOL One day at a time has become my motto - one chore today - one tomorrow!
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Wblibrary - that's exactly how I feel too - no desire or energy to do things. Yep, I think wedding planning, the thought of recon surgery and Christmas shopping in August! would have me stopped in my tracks too - just can't get my head around that many stressful things at once nowdays - I walked the dog today, I've done my one thing! I seem to have heaps of energy to read and post here though
I had bad migraines until I became post menopausal then they lessened dramatically but since being on Femara I haven't had one!!! Must be the only good luck story associated with Femara I reckon!!! Estrogen was definitely never my best friend it seems!
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I take calcium citrate with vit D these pills are huge is there any smaller ones i could get?
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nanna, I take Walgreens brand Calcium 1200 mg for bone and colon health with Vitamin D (1000 IU) and Minerals. They are chewable and I usually get them when Walgreens has their buy one get one free sale. I have taken them for a couple of years with no problems. I have trouble with other calcium pills, they bother my stomach but I do not have any trouble with these. Hope this helps
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Thanks jeanieb will pick me up some this week
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RE: weight loss. I had gained about 15 pounds with chemo, instant menopause, etc. I asked my onc. about it and she said that you can lose weight on femara, but it is more difficult than usual.
I was pretty bummed, but in mid June started running. I am not inactive, but walking the dog is more typical for me. This running has really helped me mentally and physically. I have lost 13 pounds from the end of May to the end of August. I did not drastically change my diet - but did REALLY cut down on the amount of treats I was eating (which was plenty).
I realize that running is not for everyone, but I think if you can kick your fitness up a notch, which could mean walking, or using an elliptical trainer at a gym (supposed to be better for knees I think) it will make a difference. I just feel so much better. Since I can see a difference in my clothes I am way more conscious of the food I am eating, where before I kind of felt like oh well - can't lose the weight so why bother.
Anyway - that's what is working for me. Hope you all enjoy the last weekend in August!
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Has anyone else had problems with rapid heart rate. I started on Femara 7 weeks ago and noticed I was getting some weird feelings, being nervy. Last Tuesday evening had some bad news & my heart rate & blood pressure shot up. I spent 18 hours in the emergency dept. & they did every test they could think of but nothing showed a cause of symptoms. My oxygen level was a bit low too. Dx was sinus tachycardia + hypoxia reason unknown. I have also seen my gp and am being referred to a respiratory specialist. I do have hypertension & they have added another blood pressure med that works to bring down the heart rate. All the docs I have seen have discounted any of the meds I'm on being the cause, I'm going to call my onc on Monday to ask if he thinks it's a possibility. So anyway sorry to ramble on but just interested to know if anyone else has come across this.
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jane - your heart problems sound scarey - glad you are getting them checked out. I've been on Femara for about a year now and no heart problems. My blood pressure is even down from when I was on chemo - with no blood pressure meds.
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Once in a while, I find myself having an irregular pulse, but I was pretty sure it was from the herceptin I'm still on, since I had it during chemo as well (and that was way before I started on the AI's) so I don't know. My blood pressure has gone up a little since being on femara, but I was always on the low side before, so it's still well within normal limits.
Has femara caused any of you to have higher blood sugar levels? I had gestational diabetes that resolved itself, but every once in a while I would still check my morning fasting level since it always seemed to be at the higher end of normal. It used to run in the mid 90's, but since starting on femara, it's been pretty consistently in the low 100's (usually about 104). I know that anything over 99 is considered to be "prediabetes" so this has me a bit worried.
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Hello gals,
Have been on femara for 4 mos. now and about 2 weeks ago have noticed thinning of eyelashes and significant hair loss - argh! Am so concerned as I am so happy to have my hair back, very short but I have hair. Also wondering if anyone has osteoporosis and are taking fosamax. If you decide to go off the fosamax, (do not tolerate well), do you then have to switch to tamoxifen since there doesn't appear to be the same amount of bone loss as there is with femara. Always questions? Would so appreciate a response.
Take care all!
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Hi Chico
After femara my hair line receded and was told it is because the lack of estrogen I use Regain(Rogain) off the shelf and am almost normal now but still poor eyelashes. We use Zometa infusions two times a year for osteporosis there are somestudies going on to verify it has cancer prevention effects also.
hh
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Thanks bonnie for responding. So am I correct in assuming that you do not currently have diabetes, but you have noticed that your blood sugar level has increased since starting femara? What can we do about this?
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I started Femara last May (2010) after finishing chemo/rads. I have my last Herceptin treatment this week and I will be able to get my port removed next week if the blood work comes back marker free
Here's crossing fingers. But to the Femara... I had tremendous stiffness with the Femara in the early days. My Onc is so adamant about taking it, he actually told me that in his professional opinion, he felt taking the Femara was more important to minimizing the chance of recurrence that undergoing chemo and radiation combined! (Gee, that makes me feel great!?). So, been doing Femara for 3+ months now, and honestly, I really hate it. I do Yoga classes three times a week and do long hikes on the weekends. The pain is really in the morning when I get up (in my joints), or after I have been sitting for long periods of time. After I get up and move around, the pain diminishes considerably, if not completely. What bothers me the most about the Femara is what the lack of estrogen is doing to my body I swear my skin texture has changed dramatically...even my friends are noticing. The moist supple skin is being replaced by dry wrinkly skin, which I guess makes sense as isn't they why women take estrogen supplements? I feel like taking Femara is starting to age me quicker, but perhaps it is in my head, or perhaps it is because of the chemo. My hair is growing in thick, though...so the lack of estrogen does not seem to affect my hair growth? But, it is definitely affecting my skin. Also, my Onc has permitted me to use a low dose of estrogen (Vagifem) in my nether region, as this Femara is kicking my private area almost completely out of commission. Let's be real...suppressing the production of estrogen in our bodies will produce many side effects...and certainly hasten the bone loss process, too... I am also on the Zometa trial (I was found to have Osteopenia right after chemo), so I hope the Zometa will be helpful. Not having any trouble with weight management (but that was never an issue for me before cancer, so, maybe this is why Femara is not affecting me in this way?). Can anyone recommend good doses of Vitamin D and Calcium? -
I went from Tamoxifen (pre menopausal) to Femara. I have been on it for a year now and the side affects are getting worse. You name it, I am feeling it, and feel 20 years older than my age. The worse side affect are the leg cramps at night. I am up for hours with them and going to work on an hours sleep. Has anyone just quit the treatment and felt better?
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My onc has me on 2000 IU of Vitamin D3 daily and I take 1500 mg of chewable calcium- but Im on the neratinib trial and cant really eat dairy right now
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Hi guys, I am now in the Femara Club. Had too much joint pain with Arimidex, having been on as of Dec. 1 and stopped June 19. I took my first Femara today, will skip a day for each pill, and continue to 15 pills then go back to onc. I am still suffering with the wrist and joint problems in my hands. I am hoping that they subside and will experience less problem on Femara.
I also take Calcium with Vit D. Oscal and Fish Oil 1200. One of my neighbors who is also a BC survivor has been on Femara for 3 1/2 years, could not take Arimidex went to Femara and never had a problem.
Well at least I found another site to visit.
Hugs,
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Hi guys, I am now in the Femara Club. Had too much joint pain with Arimidex, having been on as of Dec. 1 and stopped June 19. I took my first Femara today, will skip a day for each pill, and continue to 15 pills then go back to onc. I am still suffering with the wrist and joint problems in my hands. I am hoping that they subside and will experience less problem on Femara.
I also take Calcium, Oscal with Vit D and Fish Oil 1200. One of my neighbors who is also a BC survivor has been on Femara for 3 1/2 years, could not take Arimidex went to Femara and never had a problem.
Well at least I found another site to visit.
Hugs,
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Hi guys, I am now in the Femara Club. Had too much joint pain with Arimidex, having been on as of Dec. 1 and stopped June 19. I took my first Femara today, will skip a day for each pill, and continue to 15 pills then go back to onc. I am still suffering with the wrist and joint problems in my hands. I am hoping that they subside and will experience less problem on Femara.
I also take Calcium with Vit D. Oscal and Fish Oil 1200. One of my neighbors who is also a BC survivor has been on Femara for 3 1/2 years, could not take Arimidex went to Femara and never had a problem.
Well at least I found another site to visit.
Hugs,
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Thx KristyAnn!
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spoke to my onc and he said while it's not impossible it's highly unlikely that the tachycardia/hypoxia is a SE of Femara. Guess I'll have to wait & see what the specialist has to see. I googled the specialist I've been referred to & he is a specialist physician with an interest in among other things respiratory problems and difficult dx, a bit like House. I hope he can work out what's wrong in a less dramatic way than House
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jane59-less dramatic but perhaps with some flair!
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Sorry I've been MIA for awhile. I was working on my fundraiser event for my American Cancer Society's Making Strides Against Breast Cancer walk. It was a huge success!
I can not get caught up with these threads. Hope everyone is doing great. It's been 8 months for me on Femara, and I seem to be doing ok.
Jane59,
Good luck with your tests. Hope it's nothing serious. I'll be thinking about you. Keep us posted.
Hope everyone has a great weekend!
Harley
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Hi Harley,
Congratulations on your successful fund raiser!! Do you mind me asking what you did? My team is selling Yankee Candles - they donate 40% to charities!! When was/is your Strides walk? Ours (Metro Orlando MSABC) is October 23rd. I'm chair of the Mission Integration Committee for the event - education and advocacy. Got several presentations coming up soon.
Hugs,
Karen
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Got my 1st Zometa infusion thursday. It went well my next will be in March. Only had minor aches and now doing good. I pray the next one does this good.
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I'm switching from Prozac to Effexor to see if it will help with my hot flashes from the Femara. My question is to those of you on Effexor - better to take it in the morning or at night? I take my Femara at night. Pharmacist said Effexor could make you drowsy, so I'm leaning towards nighttime at this point. I start them on Tuesday! Any comments from those of you on Effexor would be appreciated. Thanks!
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Is there anyone out there who has been on Femara for longer than 5 years. I was on Tamox for 3.5 years starting in 03 and have been on Femara since. Almost 7 years seems so long to be taking this. My onc says there are still studies being done, but I wanted to see if my aches and pains would improve so I stopped on my own in June. Are there others who have been on it for this long? Would love to have some responses.
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jto703 - women with a very high risk of reoccurance are often on hormone therapy for 10 years - usually 5 years Tamox and then 5 years on an AI. I went straight onto Femara and my onc said 5 years is the standard time to take it. He said the same as your onc 'that research was going on all the time' and the suggested time may be longer by the time my 5 years is up. There are serious SEs with long term estrogen depletion (which the AIs produce in our bodies) though affecting particularly the heart. I wonder if see-sawing between Tamox and AIs (say year on, year off) would have any benefit for post menopausal women as they can take either, that would give the body a rest from the estrogen depletion full time. All very difficult to get your head around at times isn't it?
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Hi Ladies, I hope you don't mind if I join in your discussion. I've been on Femara now for 13 months and only recently have begun have severe aches and pains, as well as some anxiety. Is the anxiety also a symptom?
As for duration, I've seen the studies -- and my oncologist concurs -- that using a combination of Femara for 2 years then Tamoxifen for 3 years is just as beneficial as being on Femara for the entire 5 years. That's what I intend to do, if I can stand the pain for another 11 months! I am very concerned about the total estrogen depletion of staying on it longer than 5 years.
I was happy with my latest bone density scan, taken 12 months after starting Femara. My bone density had stayed exactly the same as it had been the year earlier.
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Gg08-Bonnie, my oncologist told me I would be on Femara for the next 15-17 years at least or longer, just depends. I also take Zometa, I had it monthly last year after being diagnosed again after 17 years. I started Femara and Zometa in June 2009. After a year I get Zometa every 3 months instead of monthly and I understand that will continue for the next 3 to 5 years and may eventually be able to go once every 6 months. I have been reading some of the other posts and you are the first one I have seen that said they will take it this long. Everyone else seems to be 5 years. I am glad to hear someone else will take it this long, I was beginning to wonder if the oncologist was right. I have never questioned anything he tells me, just figure he knows more than I do:)
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This is the frustrating part of being on Ai's - you get a different answer from different doctors - there is NO set plan because they really don't know the answers even after all the research. Tamoxifen was the standard for so long until the Ai's were produced. So Tamoxifen became the PREmenopausal drug - Ai's the post. Case closed! Now with all the side effects of the Ais - the case has been reopened. Doctors are scrabbling to keep us on some sort of medication so they can say I told you so if we go off and have a recurrence. Is it for covering their butts or is it really for our own good? Is 2 years enough or do you really have to stay on them for the 5 they recommend? I don't think there's a true answer out there or a study that has shown effective results. If anyone can point me in the direction of an exact study that shows being on Ai's ONLY for 5 years stops recurrence - please do! I'm frustrated as hell and want my life back without side effects.
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Texas-357 I have been on Femara for 15 months now and I have more aches and pains than I did before, I did not know if it was Femara related or just old age creeping up on me, I am 58 so not antique yet but some days I feel it. I also have had bouts of anxiety. I thought it was from the recurrence of breast cancer but then I got to thinking about it and wondered if it is the Femara. I was told in June 2009 that it was back and started on Femara within 3 days of being told that and have had anxiety off and on every since. I even wake up in the morning sometimes with my heart racing and being very anxious, it hits me as I am just waking up so I have not even had time to think about anything. I wonder if anyone else has this problem also. I thought as my body adjusted to taking Femara the side effects would go away but it seems to be the opposite.
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wblibrary... I've been taking effexor since dx and always take it with my other meds in the mornings. Maybe I'll try it at bedtime and see if it makes any difference. The femara gives me serious hot flashes and the effexor seems to help with that, but not as much as when I was on arimidex. --bonnie
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I have been on femara now going on my 6th year. I have recently started taking it along with my effexor in the evenings. Don't know that I notice any help with my rest but do find that I have much more energy during the day. Hope this helps.
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jt0703 I have been on femara now going on my 6th year. My onc was going to stop it at 5 until we discussed the number of nodes involved in my dx (14/32). She decided that she wanted me to continue. I guess the research has been completed for the five years but not for longer (I would guess that should be coming soon). My SEs have changed since the 5 year mark, especially my feet feeling like egg shells when I first get up. When I did the elyptical at the gym my feet would go numb. The more I do that, the better it gets. The egg shells go away very shortly after I move around. Other than that, had sx on trigger fingers several years ago I believe was SE from the femara. I believe it has helped me the way it is supposed to and my bone scans show good as I am on Boniva I believe. Hope this helps.
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Hello ladies,
Was just wondering......have any of you ladies had any hair loss since been on femara. Have been on since beginning of May and each week for about the last month my hair has become thinner and thinner. Especially along the hair line around my face seems to be moving back further and further. So sucks.....was so happy when my hair came back after chemo, full and curly now this. Sigh!!!!! Any suggestions?
Stage 1, grade 2/3, 0 nodes, HER2+.
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My hair is very fine and straight now that I've been on Femara. I started Femara in November and when I got my hair cut in Dec. my hair stylist noticed and asked what was going on. She knew about the BC but didn't realize about the Femara. She said it actually felt nicer that it was before when I actually had some curliness and thicker hair. When I went to visit family in Jan., my mother asked if I was losing my hair, so I guess it can have that appearance, although, I do have a lot of hair in the shower and sink!
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Chico - thinning hair is a possible SE of Femara. I started Femara only 6 weeks after my last chemo in July 2008. So, coupled with the chemo hair loss, my hair regrowth was very slow and is very thin, especially on the crown, compared to what is was before BC. Fortunately, it has retained its wave (was straight before BC) so that helps! But I have to wear it short now. I only wash it once a week, and then use Moroccan Oil styling cream.
As for how long to stay on an AI -- my onc told me it may well be for the rest of my life, or until research says otherwise or something better is developed. It's really the only arrow oncs have in their quiver (since they must follow standard of care) in helping us protect ourselves against recurrence. Although it would naturally be beneficial if oncologists as a group would look "outside the box" for other means.....
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Has anyone tried the Femara Cares Program? It's a prescription discount card. Femara cost is $10.00 for 1 month supply. 866-280-7727. Call this number for more info on it. Onc doctor gave me mine. Hope this helps
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wldflwr, yes, I've been using that for months now. My presrciption is for 90 days and I get 90 days worth for $10.00. I just have to remind the pharmacist when I get it filled.
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I'm counting the months until I'm off Femara. I had just started getting eyebrows and eyelashes but the Femara brought that to a halt. I'm getting eyebrow tattoos next week because I can't stand looking in the mirror and still seeing a cancer patient. My hair is also thinner and drier, and my skin is also much drier. I'm much more comfortable with the mechanism of action for Tamoxifen, and at least one study shows that AI/Tamoxifen combo over 5 years is just as effective as 5 years of Tamoxifen.
I tried using the card but the pharmacy only gave me the discount that first time.
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Jane59, perhaps you could take a break for a couple of weeks from the Femara to see if the cardiac and respiratory side effects subside? If they do, then you'll know it was from the femara. In your shoes, this is what I would do. Seems like a simpler way to find out than going through all kinds of testing and having to deal with more treatments and possibly cardiac meds as well.
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rgiuff, Hi Rose thanks for the reply I had considered doing that but I think I want to have all the tests that way I will have an idea of my overall health & if it turns out it is the Femara I can say "I told you so"
Honestly I'm not sure which way I want to go, with Tamoxifen I had hot flushes, leg cramps & the risk of blood clots slightly higher was a worry, but it was good for protecting bone density & cholesterol. With Femara the flushes are worse and possibly the cause of the tachycardia but I'm of the belief that it's more effective re: the breast cancer.I saw the specialist today and I really liked him (I've been very lucky I like all my docs) When I was in the ED they did a lot of the tests already. Because of my high blood pressure & the fact that it's taking 3 drugs to control & I'm only 51 he wants to make sure there is nothing else going on. Tomorrow I'm having more blood tests & for the next 4 days I have to collect my urine for testing, then a few days before he gets the results. Depending on what they show he'll either call me or send a letter with the next step
The new bp med has given me more fatigue but I don't mind that because I no longer have those horrible anxious feelings. Also there is a possibility that I might be able to go on a larger dose of this new med & drop one of the others which would be good because it's a quarter of the price.
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Today is my onc. appointment to decide what to do now... I have pulled my 5 years with Femara. I have actually been off it now for a few weeks as I took all my pills and decided to hold off on getting any more (have to get 90 at a time due to insurance) hoping I am done with it. We shall see. I am a three time survivor, but all three were Stage 1, no positve nodes (DCIS, ILC and final one was DCIS with IDC). I have started to notice some subtle changes since being off the Femara- eyesight is improving which is weird.
Hang in there everyone.
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Aspen, I hope this concludes your Femara! I can't imagine hurting as much as I do now for another four years. I've been on Femara since July 2009. Last night, I went to reach for something on my nightstand and had to turn my entire body because the pain in my arm and shoulder was too great. I can't even take off a tee shirt anymore. This has all happened in the last couple of months. My next oncologist visit isn't until next month. I'm hanging on by my fingernails.
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Just back in from the onc. visit. I am officially done with Femara. Because I had neg. nodes, he said that he recommended stopping it. If I had had positive nodes, I would have continued for another 5 years. I still have the shoulder pain at night too with stiff fingers and feet in the mornings. Hopefully, the SE's will diminish with time. I can honestly say I feel better with more energy since stopping the Femara 3 1/2 wks ago when the pills ran out. Hang in there if you can. My SE's eventually got a lot better the longer I was on Femara. Physical activity helps with the soreness, stiffness even though it may be tough at first.
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Congratulations Aspen!! Be healthy!
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Thanks everyone for the congrats. Hugs and blessings to all. Headed to the gym.
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Hi Texas: Understand completely with problems in hands and wrists.
Please hang in there.
Hugs,
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I read about so many terrible side effects for Femara. It made me afraid to even start it but the doctor insisted. But.......I am on my 20th day of Femera and NO side effects. I must tell you that every day before I take the medication I hold the bottle of pills in my hand and I pray over it and ask God that there will be no side effects. So far it is working. So, if you must start on Femara, please don't be fearful. You need not have any side effects. Ask God to help you.
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I didn't start getting SEs until a year after starting Femara. I feel blessed for having one really good year finished anyway.
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I started Femara about a month ago. I already have osteoarthritis so I'm not sure I'd know the difference between a Femara SE and what I'm already experiencing. I am a candidate for knee replacement, so I'm already in a bit of pain. Arthritis-strength acetaminophen helps a lot.
Michelle
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I'm glad Texas 357 didn't have any SE for a year but there will always be those who do not honor and trust God and prayer. I know she is saying for me to just wait. My SE will start. I do not believe so. I will continue to pray and ask God to protect me from all SE and He will. I encourage all of you to do the same. Even if your SE have started. Start praying now and watch them stop. God is able. He is much bigger than cancer or medications.
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Maranatha, how dare you be so presumptuous! Do not put words into my mouth or chastise me about my spirituality. Your last post is completely out of line.
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Marantha wrote "Even if your SE have started. Start praying now and watch them stop. God is able. He is much bigger than cancer or medications."
If all it takes is spirituality or praying to get rid of side effects or even the cancer, why did we bother with surgery, chemo, radiation and drugs?! I think your solution is lovely for you Marantha, but most of the rest of us are happy to trust science and our doctors to guide our recovery. And most of us do get some side effects from Femara - praying or not.
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I have to agree with the other ladies, Marantha!
You have only been taking the meds for a short period of time, almost too short a time to be able to make such bold comments about your situation or anyone elses. I do hope that you continue to not suffer with any side effects, we are all individuals and we will all be affected differently by many things in life.
It is nice for you to have such a strong faith in God however I do not think that this forum is the place to push your religous beliefs upon others. There are many fellow BC sisters who are religious or that say prayers for our friends but this is the first time I have seen anyone admonish another for not having that same strength of faith.
Prayer can be a very powerful tool in helping us handle different situations throughout life however I wish that dealing with cancer was just that easy. I have friends who are very religious and I know that they pray for me constantly however they would never have suggested that I leave my treatment in God's hands alone. Lassie11 you are absolutely right when you say the rest of us trust in science and doctors to guide our recovery, and that's where my friends prayers come in for me, they pray that God will guide the scientists and medical professionals to care for us all in the best way possible.
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I am a firm believer in God and prayer but I do not think anyone has the right to get on here and say if you pray the pain will go away or no side effects. I was told by someone that I needed to take these pills as God must have given them to me to take, pain and all......I do pray everyday and I pray for people on here I have never talked to or met. I will say that if Maranatha is so strong in her believe then why is she taking these pills anyway?
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Just found out that my triglycerides were up to 591 and was put on something called trilipex. Also that tachycardia now is intermittant (only when upset or frustrated) so I made an appoitment with a cardiologist just to see if everything is okay. I read somewhere that femara raises cholesterol....for me it doesnt give me unbearable pain (most of it is restricted to the mid back and neck) but when I was on Osteoporosis medication like Boniva holy mother...I could barely move for a day or two after taking it. I do have cardiovascular issues that run huge on my mothers side (my uncle at age 37 got up to change the channel on the tv and fell over dead before he got a chance to do it) and my mother had a stroke at age 60 something (I'm 53) and a massive stroke at age 80. I had an abnormal electrocardiagram just before I started chemo and got the "red devil" stuff anyway.
Anyone else have cardiac issues with femara or a year or more out from chemo? How were you treated for it?
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This disease isn't like the common cold where people's experiences are virtually identical. Not only are there many variations in breast cancer, but we differ in our treatments and in the way our bodies respond to those treatments.
We come to this forum to learn from each other and to support one another. This is, above all, a place where we come for understanding and compassion.
Every second of every day is simply too precious to spend any more time focusing on someone who apparently doesn't get that.
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Marantha -- I can see telling people to pray for comfort in trying times but telling them that praying will cure cancer or its medicines side effects is just plain wrong and no better (at least in my book) than the people who tell us to drink "Holy Tea" or worse yet to just sit back and pray (and wait to die). If God is "much bigger than cancer or medications" then why did so many of us have to go through living hell to be treated? Didn't you also go through chemo and other treatments for your breast cancer?
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Pat634, it's got to be frustrating to need medication to treat the side effects of other medication. I haven't had heart issues but I do insist on having my cholesterol checked regularly as long as I'm taking Femara. Have you looked into using an aged garlic extract to supplement your cholesterol medication? I've seen studies indicating that it can help to lower total cholesterol.
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No never heard of that before but will try it. I had cholesterol levels in the 300's as early as age 21 so I think the femara is just adding to an already established cardiovascular problem. Does this taste like garlic? One of my issues during chemo is that all beef tasted like it had been drowned in garlic and made me very nauseated.
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No, there is a very faint garlic aroma when you open the bottle but there is little if any garlic taste.
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Re cholesterol levels and garlic: I was put on Crestor for off-the-charts cholesterol levels after chemo. Crestor bothered my digestive system so I purchased aged garlic extract in capsule form (my brand here in Canada is Kyolic). It also contains lecithin. I take two a day. While my HDL levels are still a little high, my LDL levels really dropped and the ratio is good. So I do believe aged garlic extract is a great alternative to statins.
Kyolic has absolutely no smell or taste. One time when I ran out, my DH picked up garlic capsules at Costco and I just couldn't get past the strong garlic odour (and I do love garlic!! -- but only in food, not pills....).
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Had my zometa infusion about 3 weeks ago. I really think that it is helping with my body aches and pains. They seem to be not as bad as before I have really good days lately. Has anyone else seen difference since taking zometa?
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Hello .... I have been reading your posts since February. Started Femara in March. I have been having a "Femara vacation" for the last 4 weeks due to bone and joint pain. Joints have gotten much better being off the Femara but my wrists and hands are constantly hurting. Is anyone else having this problem and if so, found anything that helps?
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jadams - I have been taking both Aleve and Glucosamine everyday and it has definitely improved my pain. It's not a cure - but it sure does help. Worth trying.
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I second Glucosamine/Chondroiton for helping ease joint pain. I take 2 capsules (750mg glucosamine/250mg chondroitin plus supporting minerals copper, manganese, sinc, selenium and boron) a day. I tried the gluc/chondr without the support minerals and it wasn't as effective for me.
My cholesterol has shot up since taking Femara too so I was put on Simvistatin about 6 months ago. This is a bit off the Femara track but recently I started to have leg cramps mostly at night about twice a week which I mentioned to my dr and he has me on a personal clinical trial to see if it is the statin - 3 weeks on, then off, then on. Anyone else had leg cramps from statins?
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Hi
By the end of the first year My joint pains and muscle cramp were worse. SE reduced drastically ever since this may be due to Zometa, calcium and D3 or was a someone had suggested a while back that menopose caused by chemo and the sudden deprivation from estrogen has kind of seteled down.
I hope every one's side effects will ease off as mine.
HH
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Thank you to all for your response. I have now been on the Femara since May 25th and the side effects were worse the first couple of months.Hot flashes are still present but a little less often...sometimes sweating. I will try the pill at night instead of during the morning hours and see if that helps. I have the stiffness in the morning and if I am sitting for a while...and I have had some fluid retention resulting in carpal tunnels. I have had some increased weight gain which I am currenlty working on. I admit I am not doing as much walking as I should and plan on picking up on that after my reconstruction surgery on Oct 6th.......( am sooooooooooo nervous)
Thank you again...you are all wonderful.
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Thanks for the recommendations for wrist/hand pain. I will definitely try the glucomine, I already take Advil everyday, 3 times a day per the doctor. Hope y'all don't mind if I chime in every once in a while, I have gotten a wealth of information from reading your posts.
Jane
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I do believe that Aleve works better than Advil - you may want to give it a try - not as hard on your organs either.
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raeinnz, I had the leg cramps, too. I also take Femara and Lipitor (a statin) because the Femara made my cholesterol go way up. I discovered through trial and error that certain things I was eating (cinnamon candy) and drinking (green tea from China) were the causes. Now that I avoid those two things the leg cramps have never returned. Thank goodness because they were horrible.
infohh, I have been getting Zometa every 6 months (5 infusions so far), I also take D3. The test for D3 showed mine is in the normal range. For me they did not make any impact on my chronic joint pain. Joint pain and hot flashes have been with me for nearly 5 years now. Wish it were otherwise. The only thing that helps me sleep is aspirin. Other pain relievers haven't helped.
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I am still having sleep issuse any suggestions. I thought about taking melatonin.Has anyone tried this and did it work what mg did you take?
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Sleep problems are a side effect of Femara. I take Melatonin to help me sleep, and it works well.
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I have been on Femera for a little over a year,and had problems from day one.Feet,legs,arms,and hands,and now back.Onc has tried me on some different meds for the neuropathy,and i can't tolerate either one so far.I go back to see him the 2nd week of Oct.I'm also on lipitor and i think that is adding to the problem,as when i first started it(femera),it sent my cholesterole way high.I had only taken a statin once b4 in my life and it gave me horrible charlie horses in my legs and feet,and trigger fingers.
B4 i started chemo they ran several test on my heart,not because i was having any problems that i knew of,but they wanted to include adriamycin in the mix of my drugs,but the muga scan showed there was a slight problem with the left ventrical so the decided against the adriamycin,since it can cause heart damage.Thank goodness for that test!!
MY problems with the femera get worse by the day,i feel like i'm 95 years old.Feet all parts of them hurt,my legs hurt ,my arms and hands,wrists hurt and i get trigger fingers.Then this last week or so,my back has started hurting,also have put on a few pounds that i don't need or want.Seems there's always something going on and we just have to make the best of everyday.
Kathi
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What mg of melatonin do you take ?
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nanna - there has been quite a discussion recently on not sleeping and sleep aids on the "Can we have a forum for 'older' ladies with BC?" forum - worth reading through the last 4 or so pages for info on things to help you sleep. One of the ladies there take 4mg of melatonin.
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Hi
I bought melatonin as I have sleep problems but my onc said "NO", it wasn't a goos idea but she did elaborate on why, just not a good idea for breast cancer patients like me, so I am assuming it was something to do with hormones.
I have had continued sleep issues from doing chemo onwards and it only got worse with Femara. My onc and personal physician prescribed me zopiclone for a long time, only to find out when I was having major anxiety problems that it was the zopiclone and you are only supposed to take it for 2 weeks max. Imagine my horror after I had been taking for 18 months. I now do not use a sleep aid!!!!! I continue to have sleep issues and fatigue, by 2 in the afternoon I just sit at my desk and want to fall asleep. Recently we bought a hot tub and I have to say that really seems to help, half hour before bed helps, now I only wake up once or twice through the night which is a huge improvement from it was.
The aches, like everyone else here, continue unabated, but for now they are do-able. I have told my onc that if they get worse then I will rethink AIs. I have tried switching but that doesn't help. Two years down, only 3 to go - at least that's what I hope.
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I just take one tablet of whatever melatonin is the least expensive at the drug store.
The longer I'm on Femara, the more side effects are showing up. With some people, it's the exact opposite, so I'm hoping the side effects will subside again!
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My back has been giving me major problems since 2006 -- 2 years before dx, -- so getting to sleep is always a challenge. I take a sleep aid (currently Zolpidem) and sometimes a pain pill every night, but it is still difficult to relax enough to sleep with pain in the picture. I've been on Femara since May (was on Arimidex for a year before that) and don't really know how much of my pain is from Femara and how much is from my disc problems. Whatever the cause, sleep is becoming more and more difficult. Since my hands and feet are also stiff and sore, my guess is that some of this pain is from the Femara. I remind myself every day that Femara is keeping cancer away and that makes it all a little easier.
Later today I will have my annual mamm and I'm anxious, but expecting things to be fine. Tomorrow I see the PS to figure out the best solution for my CC and Wednesday is acupuncture -- this girl has really forgotten how to have a good time!!
Take care,
Bonnie
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Dear Seashell and Miami- You may want to check out the topic about arimidex vs. not taking it. There is alot of info very similar to what you are saying here and they are virtually the same drugs with different chemical compositions. Only aromasin (exemestane) is a steroidal aromatase inhibitor. Arimidex and fFemara are both non-steroidal. Hope you can be at peace no matter what you decide.
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Bonnie, good luck with the mammo. I completely understand your anxiety.
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Hello Femara Sisters,
Does anyone but me pay less than $500 per month for this med???? Does anyone buy Femara through Canadian Drug websites? I was sent a Canadian site where the Femara only costs $154 per month. Any thoughts.....throw them my way!
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Mammo was clear -- woo hoo!!
Femara would cost me $510, but my insurance co-pay is only $35 so I'm very lucky -- don't know how I could possibly pay $510/month. Hope you get some good ideas from others, ktmimi2.
Today I see the PS and don't even know exactly what I want from this visit. Going to Target to shop and figure it out before the appointment.... Also have another UTI that started up yesterday. I caught it soon and Cipro is doing its job, so I don't feel too bad.
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Hi ktmimi2,
I have been getting my Femara from www.alldaychemists.com. It is $7.00 for 20 pills. They are a generic form of Femara manufactured in India. Contact me privately if you'd like to have more details - I've been ordering from that company for several years - not only Femara, but meds for my COPD and other co-morbidities that I have.
Hugs,
Karen
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ktmimi2 - I take a generic form of Femara called LETARA. It is made in Fiji by a reputable drug company called Douglas Pharmaceuticals Ltd. I only pay a NZ$3 dispensing fee - our government health system provides some drugs free - but the cost listed on the receipt is NZ$26.55 (US$19.60) for 30 pills. I just wanted to say, in case you are concerned about taking a generic drug, that I noticed absolutely no change in my SEs when I changed from Femara to Letara about 8 months ago so I believe the new one is doing the same job as the original Femara. A generic drug would be a much cheaper option if you can source it.
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Hi ktmimi2,
there used to be a $10 a month coupon on the Femara website. I haven't been on it in a while but it was supposed to be good until June 2011. I havent' had any issues when I go to get it filled. Good luck.
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I used the $10 month coupon from the website. Just printed it off, gave it to walmart pharmacy, they entered it in their computer and told me I didn't need to show the coupon again, it would ring up $10 every month...and it has.
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I pay 9.00 for a 3 month supply thru express scripts.DH is retired military,thank God.If the base carried it i could get it free,but they don't,so i have to order it online and they ship directly to me.
Kathi
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Hi lukelessesmom
I have exactly the same problem. My middle fingers on both hands are trigger finger and worst in the mornings. I have had every test known to man/woman including MRI's and there has been no further progress on why. I think it is just the Femara. I have been off it for 6 months now (big risk) and there has been no change. Pity but hope you have more luck.
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Hi,
Many of you have spoken about statistics of recurrence with Femara or without. The one point I seem to notice is missing from most posts is that everyone is different. The stats depend on many things.
1.Size of original tumor,
2. Number of lymph nodes invaded,
3. Family history
4. Previous diagnosis,
5. Whether or not patients are highly hormone receptor positive or not.
6.Stage of life eg: how far through menopause the person is
7. Type of cancer (in situ- lobular, ductal)
So as you can see there are a lot of factors to take into consideration. My oncologist put all these factors into his computer and worked out the probablility of recurrence and the stats. But of course the body is strange and can react to many other things despite the oncs best efforts.
Good luck all of you,.... I hope this may have been a bit helpful. I don't think its a case of statistical manipulation as many fear (understandably) but the great unknown.
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Hi everyone. I am basically a newbie to Femara, (switched from Arimidex) because I just could not handle it. Onc started me 8-29 1 pill every other day.
On Oct. 11 I will start taking the pill every day. I still have wrist problems I guess left over from A.
I do have night sweats but again I am not taking the pill every day. My neighbor has been on Femara for 3 years and has had no s/e's. How lucky she is. She also could not do A.
Today I reordered my prescription and used a Novartis coupon and paid $10.00 for a 30 day supply, and it is good for 12 times renewal.
I believe I got the coupon from this site.
Have a great evening.
Hugs,
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I've been on Femara for just a few months (was on Arimidex for a year before) and am noticing increasing stiffness in my hands, feet and knees. It's the worst when I get up in the morning -- hands woke me up several times last night because they hurt and this morning I could hardly get up because of the knees and feet. Is this typical? Should I call my onc or just wait and see if this goes away? Thanks.
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Unfortunately, that's a pretty typical side effect. Sometimes every joint and tendon in my body seem to hurt. Fish oil supplements as well as glucosamine/chondroitin seem to help to some extent. What pain remains I treat with ibuprofen.
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Thanks, Texas. I had a heck of a time getting out of bed this morning, but now that I've been up awhile my joints are moving and feeling better. Do you know if the Femara typically causes digestive problems like gas and bloating? I have to be extremely careful about what I eat, especially dairy because it makes me feel sick. These SEs are definitely not fun, but I guess they are worth it. Some days I wonder.....
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It can cause constipation, diarrhea and nausea so my assumption is that it definitely can affect your digestive system.
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Pepto bismol finally calmed my stomach down yesterday, and whatever was causing the queasies is much better today. Pain from the Femara was terrible last night and this morning and when I went to pick up a different Rx, the pharmacist told me to try putting my hands in cold, running water for a few minutes. She said that cold water sometimes "confuses" the pain receptors, so I tried it and it did give me some minor relief. I would like to find a way to manage this pain because going off the Femara is not a good option for me.
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Pepto bismol finally calmed my stomach down yesterday, and whatever was causing the queasies is much better today. Pain from the Femara was terrible last night and this morning and when I went to pick up a different Rx, the pharmacist told me to try putting my hands in cold, running water for a few minutes. She said that cold water sometimes "confuses" the pain receptors, so I tried it and it did give me some minor relief. I would like to find a way to manage this pain because going off the Femara is not a good option for me.
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Bonnie - It takes a month or two for the AI to fully do its job, but when it does, then you start feeling the effects of estrogen withdrawal. I think we're all really surprised at how estrogen helps every part of our body, and we only notice it when it's suddenly not there. My suggestion is to give your body some time to adjust. I've been on Femara for just over two years, and I can honestly say that for about the past year, my joint aches and pains have been decreasing to the point of non-existence, except in my feet (plantar fasciitis). I found a rub-on product called Voltarin Emulgel to be very helpful in easing the pain in my wrist joints, and fish oil capsules were also a big help.
Good luck to you! Linda
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I order Letrozole (generic for Femara) from CanadaDrugs.com. $270 for 90 day supply (vs about $1,300 for Femara). Xubex has a patient assistance program that provides a free 30-day supply of Femara. Limit one per patient. Script must be faxed by your health care provider.
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Thanks for the information, Linda. I suppose all of this pain means that the drug is doing its job and that is definitely what I want. Now it is just a matter of learning how to control the pain so it doesn't totally ruin too many days.
After the most painful weekend I've had in a very long time, I am feeling nearly human again today. The pain is still with me, but much more manageable. Last night I used Arnicare (Voltarin will probably work even better) on the most painful joints and on my hands and also took a Darvocet before bed. Pain woke me a few times, but the improvement today is truly amazing. I feel so much better that a shopping trip is on the list for this afternoon! Thanks again!
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Hi Bonnie,
I always find retail therapy works for me no matter what the problem is, you get so engrossed in the shopping it takes your mind off everything else!!! Go Girl, shop your heart out.
Gaynor
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Gaynor - yup I agree, retail therapy is good medicine for any ailment!!
Bonnie - for me too the SEs are easier to deal with because I see them as an indicator that the drug is working but I am lucky in that they are not so terrible that I cannot deal with them. My joint SEs hit with a bang one morning when I stepped out of bed about 3 months after I had started taking Femara. Like you, the pain in my feet was excruciating and I had to take painkillers before I could walk that day. I had read on these boards that glucosamine/Chondroitin capsules and fish oil help with the joint pain so I went out and bought them that day and started taking them and after several weeks they made quite a difference. Joints (feet, knees, hands, back) still feel stiff and sort of painful but unless I overuse them in a day they are not so painful that I have to take painkillers regularly and I am not usually woken by joint pain at night now. I have also learned to manage the SEs to avoid making things worse - for example, if I know I am going to play tennis or do a lot of hard work in the garden or something like that, I take anti inflammatory/painkiller (Voltaren is my drug of choice) the day before, the day I play and the day after and that keeps me pain free.
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I was having horrible insomnia with Femara. I switched to taking it in the morning, and now I wake up feeling rested.
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I have been on femara and lupron for about 15 months.... the se's were worse when I was taking it during the day--- I added glucosomine and vitamin d (2000iu) about 3 months in and did see a great improvement in the hands and feet stiffness... Exercise has helped tremendously---
So, the things that are still troublesome for me are some "fuzziness" in my head, occasional pain in my hip and more importantly the vaginal dryness and lack of libido..... I am starting to get really frustrated by my lack of desire.....
I must admit that I think often about getting off these drugs.... just trying to get my body back....but then I worry about the effects of that.....
sigh
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With respect to Melatonin, recent studies have proven that it is beneficial in preventing the recurrence of BC. My onc has assured me that it is fine to take regularly or otherwise.
Heather
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In reference to the Melatonin, my oncologist actually suggested I try taking it for the insomnia. I tried 3 mg then 6 and then 9, I did not know how much you could actually take so I quit at the 9, if anyone knows how much you can take please let me know. I can't say that it really helped because I will go for a week or better not being able to get to sleep and then I will have one really good nights sleep. My oncologist also put me on another 1,000 of Vitamin D for a total of 2,000, I have been exercising regularly and I find I do not have the stiffness or aches and pains I had before, unless I walk 5 miles or more. I have been on Femara 16 months and the side effects have seemed to get better, whether it is from the Vitamin D and exercise, who knows. I will have to take Femara for at least the next 15 years or more so I am thankful that some of the side effects seem to be better.
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Has anyone else had problems with dry hair/skin and sparse lashes? I had chemo, and so lost my hair and lashes, then started on Femara before it had all grown back. My hair and skin used to be very oily and I had very long, thick lashes. Now my hair and skin are bone dry and I can practically count my eyelashes.
Looking for ideas.
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Hi Texas357,
I did start taking Biotin to help with my skin and hair and it has helped. I take one capsule 3600 mcg. The one I use is called "Healthy Hair Skin & Nails plus EGCG and Bioflavonoids." Recently my leg skin has gotten drier - but I have been having to shave more often and have turned the heat on in my house....I've putting lots of Eucerin on from knee to ankle to help with that.
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Thanks, I'll get some.
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Hi everyone, just keeping up to date on stories with Femara. Onc. took me off A because of severe s/e's. Still have severe wrist problems as a result. Started Femara Aug. 29 one pill every other day until yesterday. Now every day. My wrists hurt like crazy (even due to bad weather),but otherwise towards end of day a little better. Will keep reading your posts. I have said before, one of my neighbors has been on F for over 3 1/2 years and not one side effect.
My wishes to all of you for easy days.
Hugs, Ronna
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Ronna, have you tried changing the time of day that you take it? If you start to feel better by the end of the day, maybe taking it night makes sense. That way the worst of the side effects would happen as you sleep.
I only mention that because Femara was keeping me up at night. So I switched to taking it in the morning, and now I'm sleeping significantly better.
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and I was having trouble taking it during the day. night time is the time for me!
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Just an update....started femara in January. Got the severe joint pain, numbness starting in fingers, almost to mid palm of each hand..also was on my way to trigger finger in one, and like a clicking in 2 other fingers. Took a month off of femara. Then started back on only a half of tablet. My oncologist wasn't thrilled, but completely understood. I've been on half a tablet a day now since June. All the hand issues have gone away. And the joint pain is very minimal. I may try again at some point to increase....maybe 3/4 of a pill...and see how that goes. But what a pain to cut the little pills!!! For me, I had to make the decision on my own....I felt I was losing alot with the hand issues. Fortunately, my onc agreed, that quality of life was very important. I reminded him the femara trials were done with a dosage of .5 mg. So for me I felt taking 1.25 was sufficient. (I think those numbers are correct). Anyway, doing great for now! I know this isn't right for everyone....we all have to decide.
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jacee -- I went through the hand and wrist pain too. Even had a trigger finger in each hand. I can't be sure whether it was time passing or the fish oil capsules and extra Vitamin D I started to take, but the pain did go away, and I've had no problems (crossing fingers here!) with any other joints. I do have plantar fasciitis, but I had that long before Femara.
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lindasa....I started femara just 2 weeks after finishing taxol x12. Had toe numbness from that. I have to wonder if maybe getting all the taxol out of my system might have helped me tolerate femara better. I just had recon Stage 1 DIEP and am recuperating from that, but I think soon I will try femara again at full strength. I did start taking fish oil and my friend who's a chiropractor said take gelatin capsules. Maybe that helped some with joint pain. Had Vit D level checked Monday and will get that result tomorrow. Very encouraging to hear your pain did go away. Thanks for the info.
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After a bit more than a year of taking Femara my trigger fingers have gone away too - as has much of the hand and wrist pain. The only thing changed is that I take an extra calcium along with the Vit D and regular multivitamin. I think time has been my friend on this one.
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If the femara trials only used .5 mg, then why is 2.5 mg considered the standard dose???
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weety- sorry, didn't mean trials didn't include 2.5mg. The info that I am referring to from the Femara info page that talks about the trials mentions that estrogen suppression was acheived in all participants at levels of .5mg or greater. There are other trials that show a better outcome with 2.5 mg. For me, I was at the point of not taking the drug at all due to se's. So knowing I could achieve suppression at a lower dose was good. I do hope I can work back up to 2.5 at some point. There's a pdf file you can pull up from the femara website. Click on prescribing information.
Some of it is a little over my head, but interesting.
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Where are you in AR? I'm in Hot Springs Village. I started Femara in July of this year and feel the SE started at 2 months, hip pain and insomia. Becky
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hey Jacee! good to see you.
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Becky- I am in Rogers. This is Craft Fair weekend in the Ozarks....beautiful here. My diagnosis was 2 weeks after yours.
Eph3_12-- You look great. Good to see you too. I just had my Stage 1 DIEP, so I'm in recovery mode, but doing well. What a difference a year makes,huh?
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Hi everyone, does anyone feel that the weather increased the pain in wrists and lower palm and thumbs.
I have not gone to the beginning of this site, has anyone ever had accupuncture and/or cortisone shots to help.
Texas: I did not know that you could take the pill at night. It might be a thought to change my routine.
Wishing everyone a painless hand day.
Hugs,
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ronqt1, My pain in thumbs and knees did increase in the cold. I did have a cortisone shot in my thumb, hurt for a few days after but now much better.
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Ronna, yes I get pains in my wrists and thumbs. One day, it felt like my thumb had dislocated (it hadn't, but it felt like it had).
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I have pain and stiffness in my hands too, especially at the base of my thumbs. Some of it is related to the Femara and the rest is osteoarthritis. My hips, knees, feet, ankles and lower back are always sore and stiff when I first get up, but things loosen up with more movement. The doc has offered me steroid injections, but I've decided not to go that route quite yet.
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DIZZINESS. I have been taking Femara now for 3 months and have been experiencing increasing pain in almost every joint, and am also developing carpel tunnel syndrome and a Baker's cyst. I have just recently started with dizziness. Getting up in the morning, leaning over, turning my head, etc. etc. In my reading the literature, it doesn't seem like too many people experience that side effect. How many of you are experiencing dizziness?
DIURETICS. I have read two articles stating that MRIs of the joints in patients suffering arthralgia caused by Femara show fluid in the synovia. Apparently, some doctors are treating their patients with diuretics. Have any of you had experience with diuretics helping the joint pain?
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Hi Sistershelpingsisters. When I saw onc last, that is exactly what he called my problems with my wrists and joints around there (arthralgia). Just keeping tabs on my ability to cope with F.
However what you write is very informative.
Hugs,
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Hi sistershelpingsisters- absolute "yes" to the DIZZINESS question. Horrible last week. Started during yoga and went on and off for the week. Yuck!
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What have your onc said about the dizziness? I have an appointment in a couple of weeks and will find out what mine thinks then. I know it says not to drive, etc. until you know how the Femara will affect you, but the dizziness seems to come and go. I never quite know when I will be dizzy.
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I was already taking a diuretic for BP before I started Femara so I can't say whether it helps ease the arthralgia or not but I would hate to think what my joints would be like if diuretics do help arthralgia!
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I take diuretic for BP also but going ask onc about it next month.
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I have been taking Femara for 7 months now, the SEs started shortly after starting it, first the hot flashes, then the body aches. I had carpal tunnel surgery 2 weeks ago, I have had bilateral carpal tunnel for several years but it was manageable. I was to the point that I nearly couldn't write. The joint pain seemed to settle in my right knee, after suffering with the pain for over 2 months I went to my doctor who ordered an x-ray which should moderate to severe arthritis, she sent me to an orthopedic surgeon, he ordered an MRI which showed a torn meniscus, bone spurs and almost total loss of cartilage. I am scheduled for arthroscopic surgery on December 3rd. I have had arthritis in my knees for decades, but after taking the femara it seemed to have advanced rapidly. My oncologist won't even consider taking me off the femara! I have had some relief from the hot flashes and the joint pain with accupuncture and pain meds, but this is so frustrating. My oncologist keeps telling me to lose weight, how can I exercise when I can hardly walk! I really hate this drug!
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Moemon, I started Femara full dosage on Oct. 11, had my first night sweat last night.Was on Arimidex for 7 months which caused me excruciating hand wrist pain, which I am also dealing with.
My sincere wishes that you have a "painless" day.
I feel so bad for you.
Hugs,
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I've been on femera for a little over a year.Still have all the pains the rest of you have as well as hot flashes.I went thru menopause in my 50's and here i am going thru it again in my 70's.I also have neuropathy in my feet,legs,can hardly do anything with my hands.fingers hurt,hands hurt,have a cyst on the left wrist,and these last few weeks i've been suffering with back pain,and at times some bad pain in my stomach.
I was at the oncologist on the 14th of this month and he said the blood test all came back ok.amd he didn't seem too concerned about the back pain,but it is getting progressivly worse.
Saw the cardiologist yesterday,and he cut my lasix in half for a week,then told me to stop it all together.He thinks that may be the cause of the dizziness,that i'm getting dehydrated a little.I drink a lot of water all day,but again i pee it all back out,so i guess that's possible.
My heart itself is good though,i never had a problem with it that i knew of,but b4 chemo they ran a muga scan and said the left ventricle was a bit sluggish,so they were'nt able to give me one of the chemo meds and since then they check my heart every 6 mos.I don't mind that,rather be safe than sorry,especially since heart disease is #1 killer in my family.
Had my port taken out last thursday,that in itself wasn't bad,but i had an allergic reaction to the tape and the cleaning solution they used.Gave me a lot of itchiness,red rash and water blisters.I pulled the tape off the next day and washed off all the solution,but i still have some of the rash and itchiness and a couple blisters.Have to go have it checked tomorrow.Always something,right???
Wishing you all pain free days and nights.
Kathi
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Wishing us all pain free days and nights.
Hugs,
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(((Kathi))) - it seems hard to believe that hot flashes would return having gone through menopause but that just shows how much estrogen we must have in our systems naturally even after meno. I was right in the middle of hot flashes and they intensified for about the first 18 months but have eased off quite a bit now thank goodness. With summer on the way I hope they stay away! Another milestone passed with your port being removed. And you are right - there is always seems to be something lurking in the wings ready to 'get' us - and sometimes I get to the end of my endurance and just think 'enough' but in the morning I still take the little pill and prepare to deal with the SEs again.
(((Ronna))) (((moemom)))
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Hi Raennz: Wow, your summer is starting and we just started fall going and then Winter in the USA.
I hope my "hot flashes" come when I am out in the freezing cold when I have to walk the dog. However, the same freezing cold makes my "new girl" do her own thing.
You are right, what's next.
Wishing all a good night.
Hugs,
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I saw my Onc today and he switched me from Femara to Exemestane (Aromasin). Anyone ever been on this drug that can tell me about SE. I also saw my BS and I told him about this pain that I've been having in my collar bones. He told me that it could be from the Femara, or possibly arthritis because there is a joint there. Who knew, certainly not me. So I learned something new today. lol
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I've been on Femara just about a year now. went to onc yesterday for 3 month check and she is taking me off it for 3 weeks to see if joint pains subside. she thinks that body should be used to drug by now and I should not still have these issues. My wbc is a bit low and my bp is high, more bloodwork done. I have asked her if the wbc and bp could be from Femara and she says no. I wonder...I'm just glad to be able to take a break from it!
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I've been on Femara since May (switched from Arimidex after just over a year because of SEs) and SEs from Femara were truly awful for the first 3-4 months. SEs have been subsiding recently -- less joint pain, fewer and less harsh hot flashes, etc. I hope this same thing happens for others, but know this drug acts different for everyone.
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I have been on Femara for well over a year and have been taking Glucosamine and 2 Aleve every day to help with the joint pains. Well, I am now scheduled for reduction surgery and was told to stay off all pain medications for 2 weeks prior to the surgery. I have been off of the Aleve now for 5 days and every day my joint pain is getting worse. I can't believe the difference in such a short time. I thought I'd be okay with just the Glocosamine - but NO! The Aleve was really helping me more than I knew. I feel like I have arthritis all over my body and my ankles are swelling. I think I will be going off the Femara until I have healed from the surgery. There is no way I can deal with both the surgical pain and recovery AND this horrible debilitaing joint pain. Now comes the fun part - how do I tell my oncologist?
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Well hello ladies. As of tomorrow, I'm joining the Femara club.....ugh! My BS has switched me from Arimidex because of SE's but by the sounds of things, I'm swapping the witch for the bitch! Oh NO!!!!! I just hope it gives me an easier time...lol Take it easy all.
Peace, strength, love n hugs. chrissyb
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@chrissyb - been there done that! Can't say you will see much change with Femara from the Arimidex, but I wish you the best of luck!
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My onc says she doesn't know why, but some people really do tolerate one AI better than the other. Good Luck--hopefully you're one of them!
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KAC -- if you look at the listed side effects for Femara, one is leukocytopenia which is fewer white blood cells. My white blood cell count is also below normal and I am pretty sure Femara plays a role.
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Texas, Thanks, I sometimes wonder if the Dr.'s don't pay attention to the side effects listed and think we are crazy when we have issues. She did seem to get more concerned about the low wbc whe she realized I did not have chemo. I think the high BP is from it as well, as it says it can cause heart issues. I've been off it since Thurs. and I don't feel a difference yet in anything, hope soon, though. good luck to all.
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Hey crissyb-welcome to the wagon train!
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Thanks Eph, just getting them ol' hosses hitched for a long slow ride...lol
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And I thought I was the only one! I called it a "bloated" feeling. It's odd, and it started about 2 months into Femara. Other SE's much the same for me as on Arimidex. Hot flashes faded to nothing, but guess what? After 4 1/2 yrs with no period, it's baaack. Are you kidding me?
Called Onc & am going for bloodwork in next day or so. OK, so am I going up the rollercoaster hill, or coming down?? Just hanging on for the ride! Take care y'all. Mav
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Hi all.
I started on Femara but have run out of funds to pay for it. I've reached the gap in my prescription insurance. Have not taken Femara since August. Has anyone else run into a financial problem? Has anyone NOT taken Femara for the recommended 5 years?
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Birengen,
Go on to the Novartis website and see if they still have the coupon for Femara. For the past couple of months I have paid $10 a month for it with the coupon. When I pick up the prescription I have to tell them there is a coupon on file and they reduce the price.
Cheryl
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Birenegn-I get samples from my onc
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Laurie,
I was on Aromasin first,those SE'S were worse for me than the femera.I was dizzy,everything hurt,couldn't keep my balance,blurry visison,nauseated etc.After 4 mos of that i told the onc i couldn't do it anymore because to me that wasn't living.So he took me off for a month,then switched me to femera.Had problems with that as well,but not as bad as aromasin.Last month he put me on effexor said it would help with the neuropathy,and may help with the hot flashes,and the other pains.It's been 3 weeks on it now and i can tell the difference.Praise the LORD!!
So if my se stay like this i can deal with them.Cardiologist also took me off lasix,said that may be dehydrating me some and causing the dizziness.I also went off the coumadin this week since they took out the port.
Still healing from the port removal,mostly the rash caused by the tape,the incision is looking pretty good.
Still losing my hair though,showed my onc a picture of it that i took after just running my hands through it while watching tv.He said he's sure it's from the meds,femera.but he suggested i stay on them,which i didn't feel i even had an option there,and actually i don't if i want to be around to see my GGK'S grow up,and i certainly want to be around for that.
I'm learning to deal with things that i never even thought of b4.We do what we have to.
Kathi
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Well Girls, the first one is down the hatch! Count down begins and I hope it goes on for a long, long time before I get any SE's. Actually I hope for none and I keep saying to myself 'miracles do happen' repeated in a mantra fashion....maybe that will influence my body reaction...lol......a girl can hope, can't she?
Kathi, Í have hairloss as well and I was on Arimidex (until today). The loss of estrogen is the main culprit for it but that is caused by the meds....a nice snake chasing it's tail !
Love n hugs. chrissyb
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Hoping for no SEs for you chrissyb!
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Hi Ladies. Here is the link for Femara prescription plan.
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Thank you all for help with funding -- I have been on the $10 Femara and it was denied the second time I tried to use it. I'll keep looking
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I was placed on Femara back on 4/27/10 once I completed my chemo and radiation. I also currently continue with my Herceptin treatment every 3 weeks, this will continue until March, 2011. Because of the SEs I was experiencing my onc took me off the Femara for about a month. I resumed taking it 2 1/2 weeks ago. I am wondering if the pain I am now experiencing in my wrist has to do with the Femara. Ironically, it started while I was off the Femara and now it is just getting worse. My onc says we can try another AI but that Femara is the best out there in his opinion and the other AIs have SEs too. All I know is that I have some sort of pain every day. I did not have such pain during chemo or radiation. Sometimes my wrist and middle finger feel like they are popping out of place. I want to take the course that is best because I want to fight this BC but I also don't want to be in pain all of the time. @Wblibrary---does the Aleve really work. I cannot take too much tylenol or motrin because of effect such have on liver and kidneys. Would appreciate any insight as to taking something to manage the pain. Thanks to all. I send my hugs, love and prayers to all of you.
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I find "wrist pain" is almost universal with Femara-what's up with that do you suppose? Seems like a weird joint for almost all of us to have problems with from this itty bitty yellow pill!
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I have bad reactions to Aleve and all NSAIDS due to 1991 - 1997 Tamoxifen doing a number on my stomach among other parts. However this week I could ot bear the increasing pain my my left hip any more, and so I took one Aleve in the morning with a full meal - did not let my stomach empty all day - kinda browsing my daily allowance of food instead of three full meals. It worked very well the first day. So i did the same the next day - amazing! No pain in the stomach - then I took a day off to let my stomach recover - today I took one as the pain/inflammation was building again. I am going to try one - then half then a day of then one then one half then a day off. The inflammation is what gets all the nerves and joints going and Aleve is what I used for years (naprosin prescription in the Uk then 35 years ago) for a back injury until Tamoxifen here in the US for BC. So I am back on it after about 20 years and amazingly, even at the half dose I am taking it is helping. Warning still go easy on the affected joints even though they hurt less and do not take it at night - take it early in the day with a good breakfast.
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This board is a great resource, for one thing at least I know that I am not the only one experiencing all these problems. My knees are killing me, especially since the weather got colder here in Ohio this week, I just limp along, I usually take Motrin or Aleve, but I do have Viodin for the evenings if the pain is really pain. I have never looked forward to surgery before! Next week I see the radiation oncologist, the medical oncologist, the endocrinologist, and have my pre-op testing for my knee surgery, what fun. I am going to have a serious discussion with them about the Femara, I just don't think I can deal with this for another 4 years and 5 months. I was talking to a co-worker who is just finishing up her 5 years on Femara and she gets Reclast IV for the bone issues. We just have to continue to be strong and lean on each other! Thanks!
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Yesterday I was diagnosed with a frozen left shoulder and de quervain's tenosynovitis in my left wrist...I will be undergoing physical therapy and possibly need cortisone shot in my shoulder to break the adhesions...My onc said that he has not seen the tenosynovitis as a SE of femara but I swear it is...until taking Femara I never had any problems with my joints, tendons, shoulders, nothing....now I feel like I am falling apart...oh I Fight On! but this is crazy...while I do not like others having to experience the pains I am at least I know I'm not alone or that I'm going nuts...thank you...
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Mariana, definitely not nuts, but we each carry our own bit of craziness after all the bizarre stuff we've been through to get to this point. Welcome. FYI, my understanding from other friends on BCO is when you 1st sign up to be on the boards, you can only post 5 times in a day until you reach 50 posts, then you're good to go. You can private message as much as you want. For instance, you'd click on my name on the left side of this post- it takes you to a screen with info about me & up in the right corner is a header that mentions sending me a private message. Click on that & you get a screen like e-mail & you can communicate with me directly.
Joni
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Hi all, well day three, so far so good. Am feeling a bit more fatigued bo so far the aches and pains I have, have not changed. Maybe I need to wait a little longer for the Arimidex to leave my system. I've had to give in and admit that doing floors is now beyond me and I've had to register with the, get this, Paliative Care Services........WTH!......All other services available couldn't help as I'm not 65, I'm 59 next month and so even though I qualify in every other aspect, me age prevents me from recieving the services. It's a long, long time since someone told me I wasn't 'old' enough...lol. Have a great day all!
Peace, strength, love n hugs. chrissyb
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Chrissyb: Welcome, I was on A for almost 7months. Could not deal with it. Started F every other day on 8-29. Started F full dose on 10-11. Still dealing with the wrist pain from A. So far, so good, but I don't want to jinx myself.
I wish you better days with Femara.
Hugs, Ronna
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I am so glad I found this thread! So I am on Femara a little over a month now, after trying Arimidex & Tamoxifen/Effexor with no luck. The side effects were too difficult for me to handle with the first two meds. Just this past week I have been experiencing hot flashes, and have had nausea off & on since starting the Femara. But much, much better than either Arimidex or Tamoxifen. Even with side effects, etc. I am so thankful I have the meds available to hopefully help prevent a recurrence - I am blessed! Have a great weekend everyone!
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Hi all, well, day five and the fatigue is still there but I'm coping. The hot flashes are still here but I had them on Arimidex as well but there is a difference in the intensity......that's a good thing. They seem to be slower rising and a bit less intense and don't last as long. Actually, I'm liking that. The tip of my right thumb is numb don't know if it's got anything to do with the Femara, I'll wait and see and this morning when I woke, where I have arthritis in my right foot it was hurting like a beach and that never happened before. Dry mouth city happening not very fond of that but it is handlable. Ho Hum........another day, another SE. Maybe they'll all settle down after a while and I won't have any.......Yay!!!! I wish!!! Have a good day all and welcome Puppers!
peace, strength, love n hugs. chrissyb
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chrissyb-are you popping your pill @ night or in the AM?
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Eph, I'm taking it AM when I have breakfast.
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Fyi, when I 1st started taking Femara almost a year ago (the 16th of this month) I took it in AM too. By mid-January I could hardly stay awake thru the day. I was coming home on my lunch hour, taking naps. I read on the thread about taking it at night, so I tried it. Could not believe how quickly I felt more energized. I've taken it at bedtime since & it helps me sleep & I am not so tired during the day. This doesn't work for all, but It does for me. Joni
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I'll give it a go Eph and see if it makes a difference for me. Thanks
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chrissyb - Ho hum alright! Revved up hot flushes were the first sign Femara was doing its work, then my feet. One morning about 3 months in I couldn't stand on them when I tried to get out of bed. I hobbled round all day like a cripple if I had to move - fortunately it was a weekend so I didn't have to miss work - and sent my DH off pronto for glucosamine/chondroitin capsules and lived on Voltaren until it finally eased after a couple of weeks. Never had arthritis problems before Femara but doc says I have it in some of the small joints of my feet now - great Running 8kms a day is never going to happen again!
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Rae, I am one of the unfortunates that have arthritis in just about every joint. It makes life hard at times but I don't usually winge about it as I know I'm not the only one and you just have to keep going. I have been taking glucosamine/condroiton with fish oil added for many years and for the last twelve months I have been rescribed Panadol Osteo three times a day which does help. What doesn't help is when you are given medication that as a SE effects the joints......that is so not funny. I was a dancer and a squash player have been very active all my life untli BC reared its ugly head now I'm on disability pension and can do almost nothing and that is what I really hate about this journey. I guess it's one way to slow down though....lol!
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sheila -
Absolutely not funny to have existing conditions exacerbated by drugs! I think the emotional toll of getting BC and the going through the treatments make my SEs worse or at least harder to deal with. It all happened so fast - from being probably the fittest I have ever been, because I had just spent the last 3 years losing weight and getting fit and running up to 20 kms if I just felt like it, to four months later just not being able to walk without major pain, was like being dropped into a very deep dark hole with very slippery sides. I have struggled out of the hole but now life just seems like a never ending circle of pain, reminders of what I can't do anymore and finding a way of coping and it gets tiring. But you are right - we lift our chin and just keep going, we don't complain (except to our understanding friends on BCO) and we get through the bad days and thank our lucky stars we are still here to see each new day with hope in our hearts. -
Sorry it's taken so long to update my results. It looks like it is Femara that's responsible for my rapid heart rate, oxygen is normal and was only low when I was in ED so probably all part of the whole anxiety thing. After all the tests I know that as far as they can tell my heart, liver, kidney & thyroid are all ok. Cholesterol has gone up a bit still in the high normal range, sugar is ok too. I don't have Cushing's Syndrome or something else which I can't remember the name of but is basically a tumour on the adrenal gland. And no blood clots in lungs.
When I saw my GP she was going to give me a script to go back on Tamoxifen to see what happens, but I had a lot to ask her about & we both forgot. At that time I was ready to quit Fem for Tam because the hot flushes had become horrendous & were really affecting my QOL. But they lowered the dose of one BP med and upped the one that lowers heart rate and it's worked a treat. I feel like my old self. Mind you the fatigue is worse. I noticed it when I first went on Fem, my body just got used to that then the new BP med did the same thing and again when the dose was upped.
Right now my hot flushes have decreased both in intensity & quantity to the point where it's better than when I was on Tamoxifen, My hypertension was pre BC but I think the weight gain has made it worse. I did have arthritis in both big toes before Fem but it's worse now. Have been getting some pain in my hands occasionally and sometimes my hips, lower back and thighs ache but none of it is bad enough to need any pain killers.
I'm going to try taking Fem at night after reading some of the above. I was taking Tamoxifen at night but switched to mornings because of insomnia but now because of the fatigue thing I'm going to swap and see what difference, if any, it makes.
I also think my hair has got thinner since starting on Fem so because of that and the hot flushes have had it cut super short. It's very comfy
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i was having terrible pain in my feet also, my GP had given me Voltaren Gel for something else so I thought what the heck I'll try it on my feet WOW what a difference, it is a godsend. Just a suggestion. I suffered so long with my feet hurting, and as you know if your feet hurt you don't want to do anything. This has made such a difference, its amazing!!
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Hello all,
I have now been n Femara for 2 years and just in the last 4 months or so, my hair is getting so thin! I hate it! Still have hot flashes often.....weight gain.......sore joints and bones......dry skin.....I am seriously thinking of stopping the Femara........This drug has really changed my body and my brain.......isn't quality of life something to consider too?
Please, any advice or comments needed!
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Hi there
I thought I'd put a positive post on here for the newbies. I'm 58 and have been taking femara for 2 years. The first week was the worst (felt just like chemo and thought I couldn't do it for 5 years) but then the s/e disappeared. My feet are a bit achy in the morning but that soon goes, and I feel hot during the night (not sweaty) but nothing that I can't cope with. It's been fine.
I just don't want all those starting on the little pill to think that everyone has the awful side effects because they don't. Those who have no problems don't seem to post. It's just those who have the awful side effects.
So basically, just give them a try and see how you get on. You could be like me. I'll have no problem with continuing these pills for another 3 years.
Good luck
Mal
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I am having breast reduction surgery this week and was told to go off all my "pain" meds for two weeks prior. I had been taking 2 Aleve tablets daily, along with the usual calcium and glucosamine pills to deal with my Femara side effects. Well, I stopped the Aleve and have been in total pain ever since. My knees, ankles, hands ache and feel swollen. I ache all over! I had no idea how much the Aleve was doing for my joint pain. I have since stopped the Femara too. I know from experience with stopping the Arimidex that it does take a while to get out of your system. I do not plan on recuperating from this surgery AND dealing with this horrible joint pain at the same time. I have not told my oncologist yet - I know he will not be happy - but it's my quality of life I'm dealing with here. I'm having reconstruction surgery in another couple months too. Haven't decided if once all this is over to go back on the Femara or not, but if I do Aleve will be part of my daily regimen. If anyone hasn't tried Aleve for their joint pain, I highly recommend it.
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I've been on the femara for about 15 mos or so.Had all the same problems as the rest of you,foot pain,hands and arm pain,hot flashes again etc.Doc tried a couple different meds neither worked,then he tried effexor 37.5 mgs of it.It took a little while to get in my system,but finally my hot flashes and the pains have subsided quite a bit.He said he will up the dose a little if it works,so maybe i'll have him up it just a little.I don't want to become dependent on it.JMO
Kathi
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From my experience it is best to take Femara at night before bed...even my onc and nurses said to do that...Hugs to all!
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I was taking Femara at night but it was giving me terrible insomnia. Once I started taking it in the morning, insomnia went away.
My skin is so dry that bandaids stick too much and tear the skin, especially because I have to wear one right now on my radiated skin where a spot is being a little slow to heal. Frustrating.
For pain management before surgery,my PS allowed me to take Tramadol which is by prescription.
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Will finish rads Dec 1 and should start Femara on Dec 13. Had tried Arimidex before starting rads and had to stop after 3 weeks. nausea was too much and med onc stopped it and said we would try later after rads. He wanted to get a start on HT but said it did not matter when I started.
Looking for info on Femara. What kind of side effects should I anticipate? When are ladies finding it best to take it? Any info would be appreciated.
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Well, week one down and not too bad. The mouthful of ulcers I had when I started Femara have finally healed and so far I don't feel another coming as was the norm for me. Heres hoping they stay away for awhile. Eph, thanks for the night suggestion, have done it the last two nights and don't feel so fatigued through the day. The only problem is, I tend to want to sleep twelve hours straight, guess I'll have to start going to bed earlier if this continues. Scalp tenderness, itch and hair loss continue, sometimes I feel like a monkey with fleas the itch drives me nuts. I'm using a shapoo recommended by the hairsresser for sensitive itchy scalp and it does have tea tree and lavender in it as thats what I smell so it should help, and I guess it does a little.....grrr. The aches and pains? in general not too bad although sometimes it's hard to tell if it's the arthritis or a SE. I think overall, that he Femara is better for me than the Arimidex, but, only time will tell. Hae a good day all!
Peace, strength, love n hugs. chrissyb
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I've been on femara since April and I'm having intense hot flashes again. The weird thing is that they had seemed to die down a bit back in Aug/Sept and now they seem to be back in full force! What's up with that?
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Just got my script for Femara today. Woo, and indeed, Hoo.
So my onc said to take it in the morning. After reading some of your comments, now I'm wondering if I should take it at night instead. I need to be at my best early in the day because I'm a homeschool mom.
Any words of wisdom, ladies?
lulubee
"God bless us, every one." -- Tiny Tim in A Christmas Carol
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lulubee -- Your onc probably had no good reason for telling you to take it in the morning! I take it in the evening after dinner, but you need to experiment with it and find the right time for YOU! Best of luck,
Linda
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Weety - I am in the same boat as you. I started Femara in April too and was doing so good with the hot flashes, but lately they are happening more often. I take Effexor to help with them too. Hope it is just a short lived phase.
Lulubee -- I take my Femara dose in the evening like Linda. Good luck to you!
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cindy and weety - hang in there - it should get better. My hot flashes really revved up for the first year on Femara - even had some night sweats which I had never had before - but now 18 months on they have settled to a few mild ones during the day - just have to take a layer off for a few minutes and they abate - but in bed at night I still wake up 3 or 4 times overheated.
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I also take it at night after dinner.
Weety,where in S.Ca are you?? I'm in oceanside.
Kathi
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I'm live in the Long Beach area.
I'm going to try taking the pill at night. I'll see if that helps any. I wake up at night drenched in sweat sometimes. It's really getting old!
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I took it at night but got such bad insomnia from it that I started taking it in the morning. That solved the problem for me, and I'm now sleeping soundly again. But I think when you take it all depends on what side effects you develop.
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I've been taking Femara since the end of August. I take it at night but it doesn't help me sleep. I've got a good prescription sleeping pill for that problem, which I use a couple times a week. I haven't noticed any significant side effects. I'm a decade past menopause and have experienced hot flashes during that entire time. They are no better/no worse than before. I also have osteoarthritis in my knees and my hands, so I already take anti-inflammatories. And I don't feel like anything is worse, which is good. I had a bone density scan in September and my bones are perfect, so I'm hoping that I escape the osteoporosis side effect. I have upped my VIt D so I am taking 2200 ius a day. My test in August came back at 45. I'd like to be closer to 70, but it's getting chilly and darker now. So I won't have many hours of sunshine to help.
Things could be worse for me, for sure.
Michelle
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I started on Arimidex in Jan 2008. In June of 2008 I thought I was going down a black hole. Switch to Femara. Not so depressed however when I work over 40 hours I pay greatly for it later. I tried to switch to Tomoxifin(sp) and that was horrible. I don't handle steroid based drugs well. I am now back on Femara with 3 more years to go. I admit at times I just want to take my pills and flush them. My hips feel like they are 80 years old. I just take it day by day and hope for the best. I have been feeling like an outsider at work and no one understands. My doctor suggested I find a site for BC. Glad I found you all. Now I know I'm not just crazy. God Bless.
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Hi Jan and welcome. We're glad you found us so you do know that you are definately not alone. There are many lovely ladies here to give support in any way that you may need it. Come visit often.
Peace, strength, love n hugs. chrissyb
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birenegn: Hi, saw your post awhile ago re: denial of Novartis coupon. I just came back from CVS. After using the coupon once, I was told today for my 2nd time, no good. I refused to leave the store until they called Novartis to see what was going on. They called whoever they had to and I paid the $10.00 with the coupon on file for me.
I would call Novartis to see what is going on. They should stand by their word.
Hugs to all
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I've been on Femera for 8 months (preceded by Tamoxifin) - original S/E of joint pain and hot flashes has gotten better (no pain reliever involved)...I still have an odd heel pain, but overwhelmingly better than the first 3 months when I resembled a 87 yr old. My main frustration is the ongoing weight gain. Onco tells me to keep working out, because my body benefits - but the weight gain is mentally a major problem. I didn't gain on tamoxifin - then had my recon surgery which added 20 lbs, started femera, and have just keep going up. Going on anti depressant will add pounds - and I'm not ok with that approach...any thoughts?
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Hi everyone, back again after posting a few minutes ago. I am on an anti depressant when needed and did gain a few pounds. Now feel nauseous so hoping to lose some of the few pounds.
With severe wrist pain I have from A and continuing with Femara, my general practiontioner gave me a script for physical therapy, even though it might be neuropathy. The physical therapist said all we can do is try and hope it helps. I start Mond. Can't wait.
Yes, I agree with you Ruth, mentally I can't stand the weight gain. I only had not flashes once since starting Femara full time in Oct. BC and the fight after BC really is crap. Sorry. No other way to put it.
Hugs to all again, Have a peaceful day.
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Well I started Femara 2 days ago. I'm already finding my neuropathy is acting up. Does anyone have any advice, it kept me up most of the night last night. After looking at this thread, I'm thinking it will be a month or two before I really know how I'm going to react.
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kira -- I found that L-Glutamine (500mg at bedtime) really helped with my minor neuropathy (which was mostly in my hands). It can't hurt and it might help!
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lindasa, I will give it a try. For me it is in my hands and me feet and legs. It was a very unpleasant feeling.
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Hi Girls! started Femara on the 5Th of Nov. after being on Tamox since April. Had a hysterectomy at the end of Sept. so that is why they switched me.... Now they want me to take an infusion of Zomedia once every 3 months.... Does any one else do this treatment ... What are the SE of Z..???? I must admit I had so much more energy on T then I do with F...Aches and pains with F but stated to walk in morning so that it works the pains out. Hopefully it doesn't get worst.
Donna
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I have been on Femara since Feb and I have had bone and joint pain I am seeing a pain management dr next month. any advise about Femara would be great
Sue Ann
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Hi -- I've been on Femara since May and was on Arimidex for just over a year before that. Onc switched me because of SEs. Have had a rough couple of weeks -- implant removal after second capsular contracture and then huge hematoma surgically fixed last week. Also had blood work done and learned that my cholesterol is pretty high, which is SE from Femara. Finally starting to heal, but am seeing Onc on Thursday to see what's next to get cholesterol down. Also have the typical aches, pains and low energy, plus the foot and leg neuropathy from Femara. Neurontin helps with the neuropathy at night. The rest is just something I live with and try to accept.
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Hi Nana,
I purchased Calcium with Vitamin D softgels from Puritan's Pride [check their website]. While they are still quite large, being a softgel makes them go down a bit easier. Hope this helps.
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Well girls, day 16 and actually all things are not too bad at all. Loss of strength is a bit of an issue, but I also had this on Arimidex so not much of a change in that direction. The best thing that has changed for me is the all encompassing fatigue that I was experiencing has retreated and I find I'm actually looking forward to finding physical things to do, within reason. This started to change about three days after I changed to taking the little yellow pill at about 8pm each night. Yahooo! One SE has finally been put to bed and for that I am very happy. The joint pain is still there but not as bad and I'm guessing that what I do feel is from my arthritis and not the Femara. All in all, the change has been good for me so far....here's hoping things continue to improve on the SE side and that I get a good long run with NED on this drug.
Peace, strength, love n hugs. chrissyb
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Well, it's day 5 for me. I'm taking the L-glutamin at night, so more numb hands and feet. The only problemI have is a feeling of fullness, which has resulted in a 3 pound weight gain. Boy I hope that resolves itself, I know weight can contribute to cancer, anad I have enough trouble with my weight already.
Chrissy, glad you're feeling better on the little yellow pill and hope it continues. I take mine at night too.
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ariesrottie,
There are quite a few women on femara or another AI and zometa. I am waiting for clearance from my dentist, and then I'll start zometa also. Do a search for zometa--there is a ton of info and lots of threads on it.
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Interestingly, but probably coincidentally, since implant removal on Oct. 26th, my aches and pains are about 50% better. I have a routine appointment with my onc tomorrow and will see what he thinks about this.
Someone suggested oat bran to help with the feeling of fullness, so I've been adding a couple of TBSPs of fine oat bran to my morning cereal and it really has helped me.
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Bonnie, Glad the oat bran help with the full feeling. I will have to give it a try.
I don't know if it is the meds, or going back to work, or everthing I've been through but I'm just down in the dumps today. I feel like a good cry is what I need, but of course I won't.
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kira -- Among the many possible SEs of Femara is mild depression. In my case it comes and goes (although lately it's been staying awhile...).
You mentioned that you're taking L-Glutamine but I don't understand your second-to-last post. Do you mean that it's helping or not? Hope it is!!
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lindasa-I think Kira meant to insert a "no" more numb hands & feet-altho I could be wrong.
I have a "full" feeling too girls, but it's because I eat like I'm feeding quadruplets-not every day mind you - just 6 out of 7! Ha! My walking routine helps works off some of it, but we have the dreaded weight gaining time of year just around the corner-yuck!
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Last week I underwent breast reduction surgery (surgery in conjunction with upcoming breast reconstruction surgery due to my mastectomy). The doctor had taken me off of ALL pain meds 2 weeks before this surgery. I had been taking Aleve for joint/bone pain from Femara side effects. Three days of being off this medication - I felt like an arthritic old lady (I'm 57). The pain was intense and my whole body ached. I had no idea how much the Aleve had been helping with my pain. Well, long story short - I made the decision to go off my Femara until at least after the surgery or until I was able to go back on the Aleve. I have been off the Femara for almost 3 weeks now and I can't tell you how wonderful I feel - this is one week after the surgery! I feel human again! In February, it would have been two years of either on Femara or Arimidex. I have decided - I'm done! I know my oncologist is going to kick and scream at me - but I've reached the decision that I want ME back! I'm done dealing with this little yellow pill ruining my quality of life. I just had a breast reduction surgery in my "good" breast - no cancer found. I'm having breast reconstruction surgery (Tram Flap) in a couple months and I will finally have a "chest" again. I look forward to being able to buy a regular bra - no prosthesis! I'm on the road to getting ME back! If the Big C does enter my life again - I will deal with it at that time. NO ONE has shown me WHY we have to stay on this lousy little pill for a full 5 years. There are NO studies of it ALONE for 5 years showing true results. I'm counting on my time served on this pill as being enough. I'm also a no-nodules involved survivor - if I wasn't - maybe I'd be thinking different. I applaude all of you for your determination & stamina, Best wishes to each and every one of you now and those to come that have to deal with this horrible life-changing disease! Hugs!
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wblibrary-good luck! And congratulations on getting on track to getting your you back! I hope that everything goes smooth as silk for you from here on out! Hugs back to you.
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Thank you Eph3_12! My fingers, toes, eyes and knees are crossed on this one!
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Linda, I mean the L-Glutamine is working.
As far as the depresion, I'm sure that's at least some of it. I went back to work this week as well, and working with Kindergarten kids seems more than I can handle at this time. I have taught 2nd grade for years, and find the little kids so much more work. I don't want them to lose out because I'm not myself, but is what I'm afraid is going to happen.
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wblibrary - thanks for that info. I was going to ask if anyone new what happens when you go off Femara. I've done 2 years of Tamoxifen and have 3 to go on F. My se's are tolerable but I was tempted to go off it because I wanted to get back to me. I think I'll stick it out for the 3 years but it's nice to know that it does get better afterwards.
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I am a 3 time survivor and pulled my 5 years with Femara and finished this past August. I am now starting to see REAL improvement in the way I feel. The aches and pains are really subsiding, even weight has started to slowly decrease and yes the tummy-pouch is better. I have much more energy. The only thing that has not improved is sleep. I don't think I sleep as well as I did on Femara- I took it before bed and I think it wiped me out. Of course, the stupid timechange doesn't help either. And the hot flashes..... ladies they are almost non-existent now! I chose to hang in there for the 5 yrs. Each of us has to make our own decisions but it does truly get better... at least for me it has.
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Rita, Glad you are finally feeling better since stopping Femara. I wish it would wipe me out at night, but unfortunatly I have hot flashes all night long.
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Rita, I'm a change over from Arimidex and since I've changed the time of taking the little yellow pill, I now take it at night, I am seeing great improvement in SE's. I know it's only been a couple of weeks, but what I feel now is waaaaaaayyyyy better than what I felt on Arimidex. I actually feel like I am beginning ti return to the land of normal for me. Yay!!!! This makes me sooooo happy!
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Aspen - I applaud you! Femara has just worn me down. I agree - once the pill starts to leave your body - the real YOU starts coming back.
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chrissyb - I am so glad your SEs are better. Interesting isn't it that two drugs that ultimately do the same thing to our body can have quite differing effects.
wblibrary - good on you for following your instinct. In many cases the HT is seen as 'insurance' therapy against 'escaped' cells and when I asked my onc how long it took for 'escaped' cells to die he said 'we don't know but we think 5 years should do it'
So, you could well be right that the two years has been enough and it will definitely have been better than none I reckon. The depression SE is what wears me down the most - never had it before and I don't feel like 'me' at all but it is not bad enough for medication - hope I can keep on top of it for another 3 years. Get some great laughs from some of the other threads and that helps heaps. Is the healing going well after surgery? -
Raeinnz - thank you for your kind words - we all have to do what our heart and body tell us is best for us. I'm healing fairly well from the breast reduction surgery - have one little patch of my incision that won't cooperate and close up - but antibiotics and time should do the trick. I'm very happy at this point to just be dealing with the healing from the surgery and nothing else. Best of luck to you in your quest in keeping the Big C at bay!
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Rae, I'm truly amazed at the diffrence changing the meds have made, I only hope that the changes keep happening, and that they keep me with no more progression.
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chrissy - I second that!!!!!!!!!!!!!!!
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I am feeling more and more like me so the next thing is to try and loose some of the weight that has gone on my body for the last 18mths
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Know that feeling too Have put on about 12 kgs mainly because I cannot exercise as much as I used to but the Femara is not blameless. I had spent the 3 years prior to dx slowly getting really fit and down to a really good weight and then, in the blink of an eye is seemed, it was all just piling back on - terribly depressing and just what I didn't need when I was dealing with all the BC crap.
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I agree whole heartedly with that. I have a real problem with loosing weight because of the knees that need replacing but very, very slowly, I had managed to loose about 12 kgs before we found the mets. Unfortunately, that 12 and a few more has decided to attatch itself to me once more and Arimidex is the culprit as nothing else has changed.......
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I did the same thing - switched from Arimidex to Femara - I have to admit - Femara was easier on the body than Arimidex - but neither of them is for me.
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Hi Wb, I take it that the change to Femara hasn't relieved much for you......I'm really sorry to hear that. What are you going to do next, do you know? Whatever it is I do hope it will work for you without too many SE's.
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ChrissyB - I have taken myself off of the Femara - completely for over 3 weeks now. I don't have any plans to return to any form of AI. Check out my post from 11/17 - to see what has been happening with me. Best of luck to you
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Wb, I went back and read your post as you suggested. I'm sorry that the little yellow pill made you feel so bad. I also read your diagnosis line and it is very close to mine except, that I am stage IV now. I hope for you that you never need to face the beast again and all things go well for you with your reconstruction. I am a year older than you.
Peace, strength, love n hugs. chrissy
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ChrissyB - at Stage IV - I think I'd still be on the little yellow pill too! I'm truly rolling the dice that the beast nevers face me again either! Best of luck to you always - we all have to do what we have to do!
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ChrissyB, I see you had to stop the chemo because oof issues. I have also had to stop after 1 treatment. It is so scary not having that treatment as well as the other things we all get. I am sure hoping the SE's with the Femara are not to bad for me. I'm so glad they have not been to bad for you so far.
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ChrissyB- My oncologist once told me that the AIs were actually a better treatment than the Chemo - so you are doing the right thing!
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Hi everyone, WBlibrary, wishing you well on regaininig "your life" without F. I wish I were as brave as you.
My physical therapy for my wrists and hands have helped a teenie weenie. I get a free parafin each session. However, I get about 2 hot flashes a day. Considering all, not bad, much better than A. Oh well 4 years and 2 months to go. Almost there.
Hugs,
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Thanks girls, I do so want to stay on the AI's for as long as possible as I'm really quite scared of chemo due to my reaction the first time round. The big difference would be my state of health if that makes any sense. Even though I have stage IV BC, I am actually so much healthier than I was at first DX and my liver and kidneys are functioning better too. A friend I was talking to on Thursday said to me 'A journey of a thousand miles begins with the smallest step' and I so agree that one small step after another gets us a long way down the road.
Peace, strength, love n hugs. chrissy
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It's been two weeks since I started Femara, and so far so good. The first week, my hands were stiff and painful and I didn't sleep well, but those problems have eased off this week. I'm having some blazing crazy hot flashes, but those had already started in earnest after my oophorectomy five weeks ago. (And heckfire, ladies, who knew hot flashes were *that* hot?! Wowzer.)
I just want to keep the side effects at bay as long as humanly possible! As soon as my hands started aching last week, I got real serious real fast about taking curcumin, glucosamine + chondroitin, and fish oil. I was already taking 5000 IU of D3 daily because I am chronically deficient -- my first D3 test a year ago came back at 8! So I took 2000 IUs for about a year, but it only got up to 30. So I decided to crank it up a bit, especially with winter coming on. Despite my D3 deficiency, my baseline bone mineral density last week came back normal, thank the Lord.
Now I'm just eager to get past the recovery phase for my abdominal hyst/ooph in October so I can start exercising and keep my joints moving.
ChrissyB, you started Femara just a bit before me, right? How are you doing?
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Hi Lulubee, I'm doing pretty good actually. The hot flashes are getting less which is good and it seems that probably every third one is a doozy but the others aren't too bad. The one that annoys me most is the one I get when I first wake up, eyes open, I move and BANG! there it is my friendly good morning. I was on Arimidex before and didn't realise how bad it made me feel until I changed to the Femara. Not quite three weeks and already I feel a whole lot better all round. Don't get me wrong, I still get the aches but they are no where near as intense so I tend to ignore most of them. The exercise that you are looking forward to is perfect as that really does help a lot with alleviating some of the aches and pains. Most of what you glean from the ladies here is hydration and movement. Another thing that helps or rather has helped me is to take the little yellow pill at night. This was suggested to me by Eph/Joni and has proven to be perfect for me. I am not feeling so fatigued and am actually looking for things to do that are a bit more physical in nature. Hope it goes well for you.
Love n hugs. chrissyb
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Hi, Chrissy and Lulubee,
Hope the Femara is working for you both. I'm going on 23 months on it and it has kept me NED for over a year so far.
I've noticed the SE's come and go. I had almost no reaction the first 7 months, then began having hot flashes, but haven't noticed any of those for a few months now. My wrists do bother me sometimes, but ibuprofen helps. I get kind of a stinging, aching in them, and sometimes the stinging in my toes a little. I'm also drowsy sometimes during the day, so I take little naps. At night I'm ready for bed by 9. But, all in all, Femara has been tolerable for me.
My onc tends to downplay the SE's, saying most of it is probably arthritis. But, I really do think it is the Femara the way it came on so suddenly and skips around my body. It does seem that I've seen more complaints about SE's from Arimidex than Femara. Don't know if that's really the case or not. I've actually felt better these last couple of months. Maybe it's just my "new Normal", and I'm adjusting to the aches. But, that's okay.
I've put on a few pounds, but that could mainly be due to depression and lack of activity over the past 2 years. Have been able to lose most of those, but, dang, it does seem to cling to my upper hips and tummy - lack of estrogen I guess. I do hate that. But I intend to fight it for all it's worth! And, I feel like I'm retaining water worse than I was before, although that has always been a problem for me. I do think motion is a large part of the answer. Everything seems to tighten up when not being worked. Knitting really helps my fingers, whereas when I read for a couple of hours my fingers and wrists hurt from no motion. Kind of weird!
Hoping few SE's for you both and a long, long time on Femara. Going on 2 years for me!
Lane
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Hi All,
Tomorrow I go to U of Pa for a clinical trial on using accupuncture to reduce the SEs of AI's. I've been on Femara since September and have all the aches in my feet, knees, hips hands, and neck areas.
Has anyone used accpuncture to mitigate the effects of Femara?
Thanks!
Pat
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Hi Pat, I personally haven't had accupuncture but one of the ladies on another thread has. Forgive me but I can't remember her name but the thread was the Arimidex SE's thread. She had good results by having regular sessions of the accupuncture and was recommending it to others. Hope this helps.
Love n hugs. chrissy
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Thanks Chrissy - I'll try to find it! Pat
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Good to know about Acupuncture for SE's. Haven't tried it, but if it's known to work, I might at some point.
Lane
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Well I've been on Femara 11 days. With lots of ideas from you all my nuropathy seems under control. The hot flashes seem to really hit me at night, so sleep is something I am lacking. It was hard last week while I was trying to teach. My principal has decided to have me co-teach with another teacher for the rest of the year. I am so glad that pressure is off me till I adjust to this little yellow pill. One question, how quickly can I expect the aches and pains in my joints.
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I started taking Femera in March - aches and pains within 2 weeks. But the good news - many of the s/e (aches, hot flashes) faded by September. I try to ignore them as just part of life, and many days they are not an issue. Odd coincidence: I switched to taking the pill at night and noticed better sleep, but had a lot more joint pain...I would rather sleep poorly than have the daytime pain, but I'm not sure they are related. Because I'm getting ready for nipple recon, I can't take aleve right now - so am going to re-try the nighttime approach after the surgery. Today I am focused on how thankful I am to be so far through this journey. It has made me a much stronger (if not thinner) person. So when I hobble to the bathroom in the middle of the night, at least I'm not bald and lopsided anymore, and my fabulous husband snoring beside me loves to be warmed by my hot flashes.
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Well I'm not as far along as you, I'm still bald, and really hate it. I've only been on Femara 10 days, aand have already put on 3 pounds. At least I don't have the really bloated feeling any more.
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I found on another thread Femara has lower estrogen levels than the other AL's, I wonder why thats so and is it a good thing. I am worried about bone loss.
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Hello everyone. I would like to join you here on this thread. Finished chemo the end of August, finished rads on Nov 12th. So, I'm still rather bald and have a nice burn along my collar bone. I just threw my first Femara down the hatch and waiting to see what it is going to do to me. Typically have not had many reactions to much of anything so I am hoping that may be true with this little pill. Somehow, I don't think so.....
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kira123 - my joint pains didn't show for about 3 months and then one morning I couldn't stand on my feet when I tried to get out of bed - the pain was excruciating. DH was sent off for glucosamine/chondroitin and fish oil tablets that day and with the help of Diclofenec (sp) for a couple of weeks it settled to what it is now - manageable. I can't run any distance anymore but I play tennis with the help of painkillers and walk lots. I had rapid weight gain for the first 6 months but some of it was just lack of exercise post surgery and during inflations and about 9 months it stopped. Hot flashes are still worst for me at night but have lessened in intensity over time although I am still woken 3 or 4 times a night by them. Fatigue and a muzzy brain are the most frustrating SEs for me - just can't do anything about them and I have had to adjust my way of doing things to be able to keep going. Fatigue didn't hit til about 6 months but I noticed the muzzy brain fairly soon. Oh well, it's all better than having BC so I will keep shoving the little yellow pill down for the next 3.5 years. Wishing you a good ride with Femara.
My onc said that Femara IS the best AI because research has shown it does lower the estrogen levels in our body better than the other AIs and the possible SEs are the same for all AIs. AIs work for us because our cancer used estrogen and/or progesterone as fuel to grow, so the drug which lowers the level of estrogen in our body the most has to be the better choice if we can tolerate it. He said I could try the other AIs if I couldn't handle the Femara because some people do better on different AIs.
joan888 - welcome to our thread - hoping you have a SE free ride with Femara too!
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Hi Joan, You and I are starting Femara at about the same time. Good luck, hope the SE's aren't to bad for you or me.
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Does anyone know what a good "suppressed" estrogen level would be? Asked my Dr. to check my estrogen levels to see whether or not the femara was truly suppressing it. Just curious if anyone knows. Or maybe it's been discussed and I just haven't run across it.
Thanks,
Joni
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Joni, My Onc. hasn't even check my levels. I see him in January, and may ask him to check my levels. As I understand it Femara brings us as close to 0 as possible. If takes us lower than the other AL's. The others as I understand it are about 5% estrogen left in body.
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Welcome Joan888, wishing you an ez journey with us.
Hugs,
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I think, but not positive, that anything under 8-10 is good. My first test even before the femara was not specific enough, but my result came in at "less than 10." My ob-gyn wasn't so sure if I still needed the femara, but my onc was pretty adamant about still taking it. She said the closer to zero, the better. I wonder if I should have paid an outside facility to run a more sensitive test before I started the femara and then after. Maybe I'm causing all these extra problems for nothing!
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I seems funny to me why the Onc's aren't that concerned with checking our estrogen levels. How do they even know it it is working. My first Onc. refused to even discuss testing at any time while on the meds. I haven't broached the subject with my new Onc. so have no idea what his feelings will be.
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I see an endocrinologist for my thyroid, and he is actually the one who ordered the test for me. I haven't even mentioned it to my Onc. I will have the lab in Dec and see my Endo. in the first part of Jan.
Joni
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My oncologist also refused testing. I had the same question: How did he know it was working? But since I did have my blood tested after starting Vagifem, and discovered my estrogen levels were lower despite the heavier 'loading dose" of this medication, I figure that Femara is working as it's supposed to.
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Well I guess it's working, my hubby and I tried tonight, and for the first time in our married life it really hurt. I hate it, cancer seems to have taken everything away. I may be old, but till now we really enjoyed sex even if we were rather old farts. So here I am on this damn computer instead of cuddeling with my hubby.
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Kira, there is a thread about mojo and also the girls on the A and coping with SE thread are also discussing this very issue. It might pay you to check them out so you can get some ideas that may help. Good luck!
Love n hugs. chrissy
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Chrissy, I will do that. This whole thing stinks. We haven't even tried for months, and tonight was not fun at all.
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kira, I'm sorry that's the case, but at least you have someone to cuddle! I've been man-less for 7 years and even tho I don't miss one on most occassions, every now and then I miss good sex!
oh my - did I really say that!!??!?!?!?
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Eph3, I'm sorry you've been manless for 7 years, but then think about all the things you can do with out having to worry about how he would well about it. My daugher is 32, and has chosen to remain manless. She loves her freedom.
So the last couple of days I want to eat everything in sight. Is this a SE of Femara? If it is I that will be a problem. I'm already about 30 pounds over weight. I even want sweets, and I never eat sweets. I couldn't eat them as a kid so never developed a taste for them. Well now I just ate a cookie from the batch I made for DH.
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Kira1234,
I've been on Femara almost 2 years now. I do think my appetite increased, but not sure whether part of it might have been due to depression. Seems I either tend to eat more, or lose my appetite completely when I'm depressed. I do know it's harder for me to make myself exercise when I'm depressed. So that must be part of it, too.
Trying to get things under control. I'm exercising more, which makes my muscles feel better. The depression has been helped with Celexa, and I'm FINALLY adjusting to Stage IV. It takes a long time for any of us to accept a diagnosis of cancer.
The mojo thing needs to be addressed. Man, it's just one thing after another! Just ask my DH. I feel like I have zero estrogen, but the Femara has worked almost 2 years.
Happy Thanksgiving and blessings to everyone!
Lane
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Oh trust me-I prefer the single status, in oh so many ways. I mostly wish that I could have a man's (healthy) paycheck to add to my puny one!
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Lane, You are so right about the reduction of estrogen. I'm really looking forward to 4 years 11 months 2 weeks of this crap. I'm sure my levels will be getting much lower than they are now. I just don't understand how this is good for us.
I had a really interesting thought while I couldn't sleep last night. What are men who have prostate cancer given? I know it is also driven by estrogen. Some how I can't see the men putting themselves through this.
Yes the mojo does need to be addressed. I'm taking myself right over the that tread, plus I'm ordering some personal things on line. I live in a small town, and somehow bumping into one of my parents doesn't appeal. I'm a teacher by the way.
Happy Thanksgiving and thanks for being such a great group of friends.
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Kira I've heard that men with prostate cancer are treated with much the same drugs as we are.
HAPPY THANKSGIVING ALL !!!!!!!!!
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Hi Carol1949,
I read your post on Feb.9. My mom has been on Femara since March and I'd like to see her get off it. I have been trying to find her an Oncologist in the Connecticut area who is open minded to alternative therapies. This is difficult since I live in Florida and don't know the doctors up there. I was wondering what alternative therapies were encouraged? I've read about bioidentical horomones and have been looking in that direction. Any suggestions on alternative therapies? I'm all for alternative as appose to the drugs and I don't want to see my mom suffering from any SE's of the drugs.
Corie
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Nanna,
I am a stage IV gal and this is my 2nd antihormonal drug (1st was tamoxifen). I have tolerated the Femara personally much better than the tamoxifen. I have absolutely no side effects, it has put my cancer in temporary remission and I feel better than I have in years. So, go figure.
I hope you have a similar experience. I realize many are not as lucky as I am.
Cat
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Cat, Glad you're doing so well with Femara. I have used it only a couple of weeks, but ok so far. I'm just happy we have something to fight the cancer.
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Well hi all, it's been a month since I changed to Femara and I actually feel pretty good. The only thing I can grump about really is the fact that the mouth sores are still hanging around although I did get a break of about a week without them.....yay!!!!! Hopefully the breaks will come more often and last longer........I'll just have to wait and see. Still get tired but I guess that's par for the course and to be expected and I must admit that that is a bit better since I've been taking the little yellow peril at night rather than in the morning. Verdict for me? So far, so good and I do feel a whole lot better than when I was taking Arimidex. Be well all.
Peace, strength, love n hugs. chrissyb
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I've been on femara almost a year. I began with arimidix, misery. My Dr. changed me to aromasin ended with a severe reaction within 3 weeks so now I'm on femara. what do you do about thinning and I mean thinning hair? I can handle the aches and pains, sleepless nights, and some of the cognitive miseries. I have 4 more years of this. Thoughts?
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Hi PEG73, I've had the hair loss as well but it started when I was on Arimidex. I started taking Biotin each day and the hair loss has gone back to normal and my hair is already starting to grow again. Also, I take the Femara at night and I sleep much better.
Peace, strength, love n hugs. chrissyb
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chrissyb, how many mgs of biotin do you take per day? And how soon did you notice it helping?
I'm about to start week #4 of the little yellow buggers. Hair fallout is one S/E I'm really watching out for because my hair is already trigger-happy these days. I've already had two rounds of major fallout from PTSD flares over the past three years since dx. I took biotin during the second flare this past summer, and it did seem to help. I don't recall how much I took, though.
Golly, if it ain't one thing it's another, huh?
lulubee
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lulubee - interesting you mention hairloss due to PTSD flare ups. I didn't notice any hair thinning until I had been on Femara for about 4 months and it calmed down about a year after starting it - thank goodness or I would be totally bald by now! I put it down to the Femara but your comment has got me thinking it may have been partly due to PTSD. I had it really bad from about 3 - 12 months post op and that is much the same time the hair loss was at its worst. I think I will try the Biotin too - I pop so many pills - drugs and support vitamins and minerals - that one more in the pile won't be a problem - lol!
chrissyB - yay for you feeling better on the Femara. Hope it carries on!
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raeinnz-- It IS hard to know what's causing what, isn't it? Your hair loss might well have simply been from surgery or hey, just simply from going through this pink corner of hell. I do know that general anaesthesia and oxygen can do it. I lost wads of hair after my BMX, for which I was under general anaesthesia for almost 10 hours. I lost more after all three subsequent reconstruction surgeries. I just cut it shorter so it wouldn't freak me out so much, took my vitamins, and eventually it thickened up again.
And like I said, both times my post-BC PTSD has flared (which was before Femara), my hair has come out like crazy. Like when I swept my bathroom, the dustpan practically had a cat in it. I would just choke up over it every time; I had no idea if or when it would stop. And I would check the shower floor every time I shampood, and just be horrified. I lost probably 40% of my hair during the first flare, over about 4 months' time. It was just beginning to feel thicker again a year later when my teenage daughter almost died of mycoplasma pneumonia in ICU this past summer while she was away on vacation, and I was in isolation with her for a week almost a thousand miles from home, not knowing if she was going to make it. I could literally feel my adrenal gland revving up a big PTSD cyclone there in ICU, and sure enough, two weeks later my hair was hitting the floor again. That time, I got myself to the acupuncturist right away, starting taking Adrenal Health (an herbal formula by Gaia) and biotin... and it stopped much sooner that time.
My daughter recuperated beautifully, by the way. However, about two months after being on high oxygen for a week, her long, beautiful hair started coming out in wads, too. I was *very* sympathetic. It kept falling out for about a month, but just lately stopped. She took biotin and used my biotin shampoo.
So who knows. You might have had hair loss even if you'd never popped the first Femara. You know, we've all been through hell here, and anymore I kinda suspect that anything can cause anything.
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Hi im new here im from Manchester England, can i first say if it had'nt been for you ladies on breastcancer.org i really don;t know where i would be to day so thank you . i am on Femera and Zoladex for the last 12 months my hair as thind and ive lost some eyelashes i have joint pain and i walk in a morning like a 90 year old and im 52 i have had weight gain but im here ,when i was dignosed 12 months ago i never thought i would see christmas this year, you are all amazing and i thank you i wish you all the best for 2011 x x x x
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Hi juntom - yay, you are 'here' and you are here on the boards. I know what you mean by feeling like a 90 y/o at 52. I am just turned 54 (52 at dx) and feel the same way most mornings too but we get up and we get going and I guess that is the key - not giving in! I think most of us here feel exactly the same about the other ladies on these boards. I didn't join until I was a year out but I read the boards and it was so comforting to know that what I was feeling was 'normal' and that whatever I tx I had to have someone had been there before me and that it was all 'doable'. Even now when I am past the worst and on Femara I just love to come here and chew the fat with all these lovely ladies. All the best for 2011 to you too.
lulubee - oh my goodness, that must have been terrifying having your DD critically ill. There were some nasty pneumonias going round in NZ last year mainly associated with the flu and a number of people didn't make it. Lucky she was young and strong and had you to hold her hand all the way through. I am definitely going to get some Biotin (if someone would post the dose I should get) and give it a go.
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Hi Juntom and welcome to the family of BCO. We're not a bad bunch and some of us have been around for quite a while and plan to be around for a whole lot longer yet.
Lulubee, I take 300mcg of Biotin. per day and it was probably was about a month later that it finally penetrated my foggy brain that I didn't seem to be loosing so much hair. After that, I started to monitor each day what ended up on my floor and it wasn't long before I realized that I wasn't loosing more that you would normally.
Thanks Rae for the well wishes. I too hope that they continue unabated.
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HI Raeinnz and Chrissyb Thank you for your welcome,talking about a foggy brain thats me my lovely hubby keeps blameing my age ,could this be due to the femara x x
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juntom, the foggy brain comes more from the lack of estrogen and seeing as the Femara depletes the estrogen then yup, you could say it was the Femara....lol.
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Thanks chrissyb , thats another thing i will be blameing my medication on...lol x
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I've been using the biotin hair conditioner and taking biotin supplements. So far I haven't seen much improvement but I'm going to keep up with them. I really want my full eyelashes back. They used to be one of my best features.
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Rae -- I purchase Biotin in 5,000mcg capsules and take one in the a.m. and one in the p.m. Started to take it when my hair wa so slow to come in after chemo, and continued after starting Femara. My hair is still thin on top but full coverage on sides and back. And my nails are STRONG!!
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Hi Ladies:
I'm the one...I LOVE acupuncture, it has helped so much with the Hot Flashes etc. I started out with the "A" pill, well after two weeks tossed those in the river. Starting the "F" pill next week.
They pulled me off all HRT in May when I 1st got BC, I thought I would die with all the HF, but since having Acupuncture, I have very few..
Hope it helps
Julie
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juntom - foggy brain here too - multi tasking is a dangerous word in my life at the moment. I have learnt to do one thing at a time especially in the kitchen! I don't have music on in the car when I drive now as it distracts me. I am not quite sure how I manage to keep on top of my job but I think after 32 years automatic mode just kicks in.
Ladies - re Biotin - I am confused here. There seems a huge difference between chrissybs 300mcg per day and lindasas 10,000mcg per day - can you take as much as you want? and does a bigger dose do a better job?
Texas - yikes, 13 surgeries in 2 years
I had 2 surgeries in 13 months and that seemed a biggie at the time . I hope you have finished with surgery now and that you are happy with the results and I hope your eyelashes grow back think and strong SOON.Hi julie - am glad to hear you found something that eases the SEs and fingers crossed that you will tolerate the Femara better.
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I'm on Femara 4.5 month since July 2010. SE started a month later with a light bones ache and tinnitus like a thermopompe which I even didn't supposed to be in my head. It was tolerable with yoga 15 min every morning and glucosamin 2 tabs until the strong headache appeared in October which lasted two weeks + tinnitus. I had an impression of blown head which is going to explode at any effort. Today, I had an appointment with neurologists during 2 hours. They are puzzled - if it can be a side effect like this? They recommended me to do the brain scan and , if nothing shown, then MRI. If anyone had this - headache and tinnitus?
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mariana23...i never had any trigger fingers or finger joint pains prior to femara...i am going on 6 years as onc is keeping me on due to the number of nodes involved in my dx.....after the 5 year mark i noted different se's....i must say however i never thought of not taking it.....i have had sx for the trigger fingers, in fact all but two have been released.....my feet feel like egg shells int he mornings when i get up and after sitting for a while....i just walk through it and it gets better after a short period of time....if have never felt the se's were so debilitating that i even considered discontinuing the femara...i truly feel it is what has allowed me to be here today, that and a lot of positive thinking and support. it's all worth it to me and i hope to you....everything is possible when you put your heart, mind and soul into it..............Best of Luck!!!
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fromMontreal - it's probably not much help but your headache sounds very like what my migraines used to feel like - when they got really bad I used to hold the top of my head down because it felt like it was going to explode. When I had migraine swarms the headache would come and go, varying in intensity over a week or more, and would eventually work up to a full blown attack. Since being on Femara I have not had any migraines though (yay, a good SE). Haven't had any tinnitus ever either.
Caren - I agree with you, the possible SE of not taking Femara (BC recurrance) far outweighs the SEs of the drug - I will keep taking it and dealing with the SEs for as long as my doc thinks it is helpful to me.
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Hey Guys, I'm new here too, a little late and I could have used this a lot the last 5 years. I started taking Femara right after the last chemo treatment 11/2005. To me, it just seemed like the chemo never ended. Why still tired, achy all the time. Was lucky not stomach problems. Just stopped Femara 3 weeks ago, onc. said 2 1/2 months til I felt better. But now have really bad headaches every day, strange dizziness and nausea off and on. Is this to be expected maybe? Sex life is almost gone, that is the saddest thing after the recovery. When hubby and I do try, it really hurts and I bleed a little.
Does anyone know of any female drugs that would help that do not affect hormone levels? I need some female viagra or something. How come they never address us when it comes to sex?
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Hi Sue,
I've been on Femara a year so can't help much with the side effects of going off the Femara. I can tell you what my Onc nurse gave me for the dryness, she had me use replens and that worked very well for my pain during sex. I used it before sex and, for me it wasn't messy. I was fortunate that I only needed the replens about 3 or 4 times and I've been good to go since then (used it in the spring and haven't needed it since) but sometimes women need it every time. It hasn't helped the libido but at least it is tons more comfortable for both my hubby and I. Hope this was somewhat helpful.
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My six week break from tamoxifen is up and I am now joining the Femara club. Hard to believe that it has been six weeks since my surgery. Oh joy. I am not looking forward to not sleeping and stomach issues again. Oh and muscle aches. Dr. said I would most likely have the same ones I was having before. Way to many pages to read but I can say I am just as scared of the side affects as I was the other one. I agree though that it is what will hopefully keep my alive to see my girl grow up.
Just had my yearly scan and I am now 9 months NED.
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Any advice would be awesome!
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Yay for you Kitty, 6mths NED, awesome! I've been on Femara for a month now and I was advised to take the liitle yellow pill at night to help with the fatigue so I did and that works very well for me. The advice going around for muscle and bone pain is less gluten in your diet, fish oil and glucosamine and get your Vit D checked and suppliment if neccessary. Hope this helps.
Peace, strength, love n hugs. Chrissyb
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Hi chrissb and kittydog i have been on famera for 11 months the first 6 months was the worst, has time goes on it gets better i still find it hard to walk in a morning but its getting better,i have just started zumba which is a form of excersise which is really uplifting and as made me feel a lot better x x x
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Help to sleep: I wouldn't recommend nozinan - very long lasting, don't fall asleep easily, when finally fall asleep 3-4 hours after taking, gives 7-8 hours deep sleep, don't feel hot flashes though, but difficult to wake up in the morning. Suddenly discovered, common known diphenhydramine of any brand name (dormex or benadryl or any other), just 25mg before going to bed gives a good sleep and no muscle and bone pain in the morning! The headache also is almost gone. Also, better to take Femara before going to bed, the head is clear during daytime, no memory difficulties.
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Hi! Sitting here with aches and pains from Zometa... Had my first treatment yesterday..I was su ppose to have before Thanksgiving but had a bad cold.... Not happy how I feel... Just when you start to feel great they always bring you down... On couch most of the day. Will touch base tomorrow.
Donna
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Hi Donna, did you drink heaps of water the day before, the day of and the day after? I have read from other girls doing Zometa that this really helps with the ouch of the treatment.
chrissy
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Hi All,
I'm in the accupuncture clinical trial and had my first treatment on Friday. I think I must be in the placebo group because there wasn't any difference whatsoever for me. I have another 9 treatments and I'm hoping that something positive re the aches and pains of Femara. My knees are like an 80 year old woman (I/m 58 and used to feel about 10 years younger thn that). I've got the knees, feet, hands, neck and occasional hip aches from the drug....maybe the accupuncture takes a couple treatments to make a difference? I'm hoping! I won't be unblinded at the end and have a gut feeling after Friday's experience that I didn't get into the real accupuncture but into the placebo group (they still put needles in but not in the right places).
I never had accupuncture before.
I'll keep posting to let you know how I'm doing re the accupuncture and SEs of Femara.
Ciao,
Pat
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I've been reading about how in some women Tamoxifin isn't metabolised as it should be. Does anyone know about the AL's? They are newer, but is it possible some of us don't metabolize them either?
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Hi ladies, I have not posted in awhile. I too was on A for 7 months, off for 2 and started F 1/2 pill every other day in August, then every day as of Oct. 11. Much better than A. Clear mind most of all. In previous posts I spoke about my wrist problems which were severe due to A. I have been in PT for about 2 weeks now, and wrists hurt but not like they did. I am a little sluggish in the a.m when I get up, where before BC I would jump out of bed. Other than that, not bad. Down to 1 flash a day if at all.
Just wanted to get back on this site.
Hugs,
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I started taking Celebrex (1 pill a day) and the joint pain almost went away completely. If I was at 100% joing pain before Celebrex (could hardly walk without limping) I'm not at about 15%. It's amazing the difference 1 little pill makes!
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I'm beginning to realize that I have a little brain fog now, probably from the lack of estrogen. Thanksgiving night I put a leftover goat cheese appetizer in the freezer rather than my fridge. My dh found it yesterday. I had looked everywhere and even called my kids to see if they could remember seeing me putting it away.
Now, I'm sure there have been other things, but probably nobody wants to mention them. They're probably whispering behind my back. Jeez!
Lane
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Montreal, I just started having ringing in my ears - and sex life is painful...desire is low and when we do it hurts.
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I've also had the tinnitus (ringing in my ears) a few times to the point of distraction. So far, it's always gone away again.
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I finished my five years of Femara in August. I have started having the ringing in my right ear now, after I have finished tx. Don't sleep as well as when I was on it (took my pill at night) and have headaches more, but...... all in all do feel much better without nearly as much joint pain, almost no hot flashes and finally getting some control over the chubby tummy thing.
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Hi girls! Well after my regular visit to my GP to update him on the latest scans etc that the BS surgeon did six weeks ago, I am actually feeling on top of the world. After I told him that the BS had changed me from Arimidex to Femara and why he asked me how I was feeling on it and I said a whole lot better in general. His comment was, 'I knew something was different as you are back to your bubbly self and not nearly so stiff when you walked into my rooms. Obviously the Femara agrees with you.' Like WOW! I knew I felt better but that good that other people were noticing and commenting? Who knew? Mind you I'm very happy that it's doing it's job and giving me a much better QOL in the process. It's my seven year cancerversary today! YAHOO!!!
ps, the new avatar is me with my two DD's at my birthday lunch on the 12/5.
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chrissyb - CONGRATULATIONS ON THE 7 YEAR CANCERVERSARY.
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I've been on Femara for 1 yr and 3 months - I was getting very sore in the feet, trigger fingers and lots of hot flashes and sweats. I took a month off and felt almost my old self again. I am back on it for 6 weeks and am beginning to have sore feet again and other symptoms coming back as well.
I take lots of glucosamine, MSM, bromelain and turmeric. I have also added 5000 units of Vit D to may regime and feel it is helping a lot. I added gel inserts into my shoes and it makes walking so much nicer. I also drink lots of herbal teas now too - roobois, green and white teas and am keeping my ph level as close to normal as I can.
One other little tip to help the hands - i cut a square of the rubbery drawer liner and use it to help grip lids on all size bottles for easier opening.
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Chrissy -- congratulations on your anniversary and feeling better!
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Will be seeing my onc on Monday morning to talk about starting Femara. Will have lots of questions for you ladies. I am going to try and delay starting until mid January.
Tried Arimidex for 3 weeks and got too nauseated. Don't want to take a chance with SEs over the holidays.
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Thanks Jo and Texas for your good wishes, they were much appreciated. Still feeling better and very glad of the change to the Femara. It's six weeks now and things seem to be just getting better and better. If I could loose some of my excess weight, I would be and extremely happy little lady but I guess we can't have everything, that would just be greedy. So, I will plod along and just be content that I now really know how bad I felt on A....lol
Love n hugs to all. chrissyb
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Texas357 - Where in Texas are you? I live in deep south Texas close to the Mexican border. I am in Donna which is 50 miles north and west of Brownsville as you follow the Rio Grande River.
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One week down. Constipation, warm flashes and problems sleeping have come back just like it was while on Tomixfen for the three months. Hoping week two goes just as great.
Welcome Jo1955.
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KittyDog - Thanks for the welcome. I am 8 days post rads, did not do chemo. Still really fatigued and red in the boost area.
I'm sure I will have lots of questions after Monday.
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Kittydog, do you take the little yellow pill at night? I do and it actually helps me sleep.
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Hello all Femara Friends, Haven't posted for several months; but just had a wonderful visit with my oncologist this week and want to share. Diagnosed in March 09, couldn't get all the cancer because part was attached to an artery. Began taking femara shortly after being diagnosed. I get intensive blood work at every appt.--dr. walks into room and tosses my blood work results on the table and says "your blood work is PERFECT" Thank you Lord, because this lets me know my cancer is GONE!!!! Will continue with the femara, tho, because I feel will have less chance of another recurrence. My two biggest complaints now are the tiredness and the big tummy!! Am having a little trigger thumb; hoping this will go away soon. So, girls, there is hope; this little yellow pill can be a bugger, but if it helps, let's keep on taking it!!!
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Hi gauleyeagle that's fabulous news for you, YAHOO!!!!! Keep those good reports coming! Thanks for sharing!
Love n hugs. chrissy
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I just wanted to second kira1234's question from Dec 4 about some of us not metabolizing the meds as expected. I was first diagnosed in 2006 and after lumpectomy and rads, went on tamoxifen. It didn't work for me. The BC came back on the other side in 2008 and the tumor was ER/PR+. So I had a bilat mastectomy, chemo, more rads, and recon. I started on femara in July 2008. The SE's were noticable in the beginning -- mostly joint pain and hot flashes. Now the joint pain is pretty much gone and I only get an occasional hot flash. Maybe I should just be thankful, but I get concerned that without SE's it could mean the stuff isn't working. Am I overreacting?
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Hi
I started femara in June of 09--like you, I had lots of side effects in the joints, etc. But they have pretty much subsided and I attribute that to exercise, vitamin d and calcium.... once in a while a hot flash--- I wonder if it just means our bodies are adapting--- or that we are adapting to the side effects??? Not sure if there is a test that tells us.
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I do take the little yellow pill and at bedtime. Woke up this morning with the stiff joints and muscles. Hoping it all settles down once my body gets use to it.
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I also take the little yellow pill at night. For some reason I'm still tired in the morning. I am also finding lots of chemo brain memmory problems that are much worse with Femara. I told my DD we were having oatmeal instead of meatloaf for dinner Friday. She had a rather odd look on her face and said oatmeal for dinner?
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Thanks... I'll choose to stay optimistic and assume the best. But I think I'll ask my onc about it at my next checkup. I also have to ask him how long I will be taking the little yellow pill. With the tamoxifen, I understand it actually stops having any benefit after 5 years. But I'm not sure what the story is with the AI's. BTW, I take mine in the morning when I take my vitamin supplements. I've never noticed any fatigue from it.
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Finished rads Dec 3 and saw my onc today. Got my RX for Femara and will be starting it tonight. What SE's should I expect and for how long? I have read through this thread and saw alot about joint pains - what is everyone taking for this? Have hot flashes already - been subsiding since BC - are they going to get worse?
Lot of questions. Would appreciate any help
Jo
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My oc wants me to take E-clast once a year and my gyn started me on actonel once a month and I am going to stick with that but I do have joint pain for a few days after taking it.
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What is E-clast?
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Cataracts, anyone? I've just been told I have the beginnings of a cataract in my right eye. I'm just 53!! I've been on Femara for a year and Tamoxifen for a year before that. Thank you.
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onc told me to stop taking femera for a week to see if the tinnitus stopped...it didn't so she said to go back on and see my GP. The biggest change was I had major issues sleeping. Otherwise, back on it tonight. I'll let you know what my GP says - Onc said she hadn't heard of that SE...
Jo1955 - my experience is the first 5 months are the worst for joint pain, then they seem to change a little. Bloating/weight gain seems to be a pretty consistent issue. The fatigue is pretty gradual and the plus side is you will probably sleep pretty well. For me the hot flashes are getting less often, or less severe. Some of it is you have to set your mind to ignore as many of the SE effects as you can. This can be the hardest part of the cancer tx's because you lose the focus of the people who supported you during surgery and rads. I would say there are weeks when I don't notice that I'm taking anything - and days when I sit in a lonely pity party.
That's why I love this board. -
rseaw22 - Thanks for the info. Have started to get out the rad fatigue - will just set my mind to it that I may have it longer with the Femara. That's okay too. I have a great boss and if I have to take a nap in the middle of the day, so be it. I just hope I don't get any nausea like I did on Arimidex. The rest I can manage.
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Jo, just signing on after a few days. I'm in the Houston area. Congrats on finishing rads!
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Has anyone had a rash on their joints and finger tip tingling? I also have cold hands. If anyone has had what remedies work?
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I had neuropathy in my fingertips from chemo that was expected to diminish within a year. Thanks to Femara, it hasn't gotten any better.
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Texas, have you taken anything for the neuropathy? I had the same problem with my fingertips. Started taking L-Glutamine (500mg) at bedtime, and the neuropathy disappeared after a couple of months. It might work for you!
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Texas357 - Such a good feeling to finish rads. Started Femara on Monday - so far so good. Hoping no SEs or if I do not until after Christmas.
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Kerry lamb - (and other ladies here...) I too follow same regiment. green tea, black tea, Vit D, Fish oil etc. Exercise is a must and all kinds of it, swimming best over-all, soaking in a hot tub too releaves a lot as well as hot tubs and general strteching daily. If you can dance, dance, flexibility helps. Glutacosmeine (sp) will help as well. I personally decided to stop my Femara, been on it almost 4 years and nothing but problems and major SE's. I experimented on myself and it seems now two months out of being off it, my hair is thickening, super healthy, soft and my skin radiant. Back pain, etc. very very minimal....no depression, no mood swings, no nothing, only better, but each of us are individuals and you need to consult your onc, I only did what I wanted to do for myself, because my bone tests and scans and cancer markers are all well under what they would be concerned about, so personally, I'll do what I have to to be comfortable and happy...Pain very minimual, as I changed pillows too, a Sobakawa Cloud Pillow has aligned me and I'm feeling grand. Sure we all have aches and pains daily, older age, what our bodies have been thru is enough, but learning to do more for ME and relax then ever!
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Jo, the fatigue from Rads is MUCH worse...for me, I don't realize how tired this makes me, til I stop taking it for a week or two (due to upcoming surgery, etc). If you ever did sprints, then added ankle weights...I can still do the sprint but it's slower and harder.
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rseaw22 - Tell me about the fatigue from rads. It was horrible. I am just a little over 2 weeks post rads and I am starting to feel more energy. Thought it would never quit.
Started Femara last Monday and had to stop it today. Got too nauseated and dizzy - just like Arimdex. Called my onc. He is out of town for the next two weeks, so will set up an appt to see him when he gets back. Guess I will have to do Tamox. Wouldn't even think of starting that until after the holidays anyway.
Since my BC surgery on Aug 30, all kinds of things have gone wrong. Surgery follow ups were fine and no problems there. The rads and meds have been a nightmare.
I just want to feel good for once. Almost can't remember what that is like.
Yea, I am whining a bit. Just so frustrated. Looking forward to 2011 and a better year.
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Jo, the good news on the fatigue from the rads is it does get better. Use the next weeks to keep recovering and deal with your next choices when the Onc gets back. It's an amazing 3 month journey - you need time to mentally get ready for this next phase. For me, surgery was the easiest part - Rads the hardest, and now the long mental strain of Femera/Tamoxofin. Enjoy the holidays!
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rseaw22 - Your journey sounds just like mine. Surgery was a piece of cake - mostly due to my amazing surgeon and his angel of a nurse. They have been there for me through it all. Rads really sucked. Have tried two AI's and both are not going to work for me. The past 4 months has been on heck of a roller coaster ride. It does give me so relief to know I don't have to think of any more treatment for the next couple of weeks. What I really need right now is a whole lot of sleep.
The rads fatigue is getting better. Finding more and more energy everyday. The holidays is tiring anyway and I am trying to pace myself. Glad I have a short work week.
Have a Wonderful Holiday Season
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rseas22- you got it re the Hormone therapy. The whole treatment and especially the SEs seems to be trivialised by the doctors - my GP said, after he had just told me that I had cancer, 'if you are lucky you will only have to have some surgery and take a pill for 5 years' - sounded so easy... Coming up two years on Femara for me on April 1 - excellent April fools joke every year!
I didn't do rads but the fatigue from Femara has been pretty significant - I feel tired all the time but the worst is the lack of stamina when I am exercising or have long days at work.
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Hey ladies,
Had a bad day today - woke up this morning with muscles so sore and painful, especially shoulders, upper arms and lower back. Started Femara this past May and seemed to be doing ok until about 6 weeks ago. Called my oncologist a few weeks ago and he told me to go off for about 1 week to see how I feel. Went off for 2 weeks and muscles and over all wellness started to feel better. Then went back on for 5 days and whamo, hurt so much this morning I just sat and wept. Called oncologist back and he said to go off and come in next week to decide which other drug, tamoxifen etc. I feel so discouraged and don't know how a lot of you ladies stay on these drugs. I will try tamoxifen, but if I feel the same, I will be packing it in. Can't spend the next 4 1/2 feeling like this! I was diagnosed with stage 1, grade 2/3, her2neu+, weakly estrogen positive. Have 3 more herceptin infusions left. I don't know what I can expect to hear from you gals, guess am wondering if anyone been in the same boat and of course to vent! Thanks everyone...take care.
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I was on Arimidex for a year and then switched to Femara because of side effects from the Arimidex. The aches and pains from Femara were pretty bad for the first 3-4 months and I was about ready to call it quits when things started to get better. I don't have nearly so much pain now and feel fairly decent, so am glad I gave the little yellow pills a chance.
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My aches and pains come and go; it's the thinning hair and other side effects that are a daily reminder.
Chico1: you've got to do what's best for you.
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You are right, Texas -- Femara has different SEs in different people and the severity has a huge range, so Chico1 and others using this drug have to decide what's best for them based on their own experience.
I'm happy to tell you that, beginning this month, my hair is no longer thinning and is almost back to normal! Fingernails are a different story -- still very fragile and seem to split and break if I look at them wrong. Also have mild osteopenia that showed up in last week's Dexa scan, so there is definitely a price to pay for taking Femara, but it gives me a much better chance of avoiding a recurrence. My onc told me from the beginning that an AI would be the most important part of my treatment to keep the cancer from returning, so I'm going to take this little yellow pill for 5 years and then see what is recommended.
Have a good day, ladies.
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Well this is my 2nd year on femara. I have 3yrs to go yeah! It has been rocky sometimes i still have aches and pains sometimes but, some days better than others. I take one day at at time.
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I am taking a self-granted week off of femara- I was hurting so badlyl in the knees, ankles and hands/wrists- I always had some achiness but with the shopping and standing on my feet cooking it became unbearable. At this point I will probably go back on and tell the onc what I did when I see her- the only other time I remember being this achy was before they built my vitamin D back up!
It will be 2 years in January since I started femara!
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To you ladies whose hair is thinning, I take 5000 Biotin a day and it has stopped coming out completely. I have a question about trigger finger; does is last long or come and go after a while? Also the tips of my fingers on my left hand are numb and tingly. This has only been doing this for app. a month. This trigger finger sure does hurt.
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gauleyeagle - sorry don't get trigger finger but I get the tingly hand and fingers especially when I am driving and my hands are in one position for a long time and in bed at night. More on the right hand than the left. Didn't notice it until I had been on Femara for about 6 months and it isn't any better or worse now at 20 months.
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Mollydog (from 12-15 post),
I too have early cataracts. I'm 58. Had an opthamologist tell me 3 years ago that I had them, and would need surgery in 6 months. I ran fast from him. I still haven't had cataract surgery since, I've seen two other good opthamologists who both agree I'm about a 4 out of 10 in need of surgery, and to wait until I feel my eyesight in any one eye is getting to be a problem, like with driving. One even said I wasn't bad enough yet for insurance to qualify it for coverage. They say continue to use opticians to get best eye sight correction I can get, and I could do just fine for some time (years).
I have no reason to think my cataract issue has any connection to my BC... but then again, the heel bone is connected to the ankle bone, which is connected to the leg bone....
Glad I found this forum. I've started Femara about 10 days ago. Noticed one middle finger 'firing off' when using the mouse. Glad I read about 'trigger finger' here!
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I'm in the "cateract" club also - been aware of it for several years and have been on Femara since Oct. 1 so I don't think the Femara had any effect. My thyroid r/x had to be increased and I do think this was an effect. My joint pain has been minimal and never strikes the same place 2 days in a row - usually disappears after several minutes. I am amused to find out that some of you young gals in your 50's ( not in any way to be unsympathic to your pain) say that you feel as if you are 90. I am 70 and cannot imagine what I would feel like at 110 ! I pray that all of us have a great 2011 !
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hi there, my first time here. I just wanted to add that I had early cataracts from Bc drugs and I had surgery in both eyes- all paid for by my insurance. And it was a miracle surgery that lasted 15 minutes! i chose the vision I wanted to be the best ( the distance from my computer screen and music stand-I am a professional flutist) and now I never need contacts or glasses except for driving and movies. Don't let cataract surgery scare you. Unbelievable what they can do these days. JS
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hi there, yes I have had the same exact responses. I was on Tamoxifen for about 4 yrs then switched to femara and then to aromacin.. both made me hurt a lot, joints, muscles, etc. so I went back to to tamoxifen 2 months ago, but no change yet. I won't do those AI's any more. Good luck with yours.. I think tamoxifen is easier for me in any case. JS
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julscol - welcome. Just a note to let you know that until you reach 50 posts you can only post 5 times in 24 hours. You can however Private message as much as you like by clicking on a person's name and then clicking on the Send member a private message words at the top right of the page.
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have you tried the estring? it helped me a lot. and doctors find it safe. I used to think I would never have sex again, and now my sex life is back to normal. libido is tough, but once I jump start it I can usually remember why sex is worth it. hope this helps.
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Kristy, you mentioned building your Vitamin D up? How much do you take daily? Can you elaborate on this a bit please. By the way, I went to my GP regarding the ringing in my ear - he thinks it is related to an inner ear infection so am on antibiotic to see if it will clear it. I just went through my first real paranoia that the big C was back - ugh. I had my 6 month visit with Onc and forgot to complain about Femera
I guess that gives me my perspective...... -
To you gals running from cataract surgery---don't!! I had both my eyes done and this is the easiest surgery there is. Your eye is completely numb when you go in for the actual surgery--I watched the cataracts being peeled off. Amazing. And, with my last surgery, had the most minimal anesthesia that you could have; because, this let me get out faster so I could get my coffee!!!
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I take 2000 units daily of D3 now- a year ago I was on 1000 per day and my levels were not increasing so the onc put me on an 8 week series where I would take a mega dose once a week for 8 weeks- it was prescription and I believe it was D2. Apparently Vitamin D is like a tank- once it gets empited it is hard to refill so the idea is to top the tank and then keep it full.
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I am also having problems with my D levels. I am currently taking 4000 units a day. During chemo they had me taking the prescriptions one too. They were fine this summer then fell again,
I have been on Femara a month now. No new side effects so far. I did have a hot flash in Church but taking my coat back off worked. lol It didn't go unnoticed either.
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Hi girls! Happy New Year to you all!!!! I hope 2011 treats you well and you have a great year.
Been on the Femara for two months now and I can't believe how good I feel! No aches, no pains and energy like I haven't had in such a long time. By taking it a night I am even sleeping very well which is definately an improvement for me as I usually have real problems in that area. My moods have lifted and even my DD's have commented that I am more like my old self before the BC reared to ugly head. I am sooo happy that this med is doing good things for me and I truly hope that nothing upsets the way I feel now as I really don't want to return to the way I felt on Arimidex........
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Hi
Have you seen the note on the main bco board about AI's vs. tamoxifen? They did a panel about the risk of cardiac events on AI's--apparently slightly higher than tamoxifen. I would past it here but of course I cannot find it again. Anyway, my onc was on the panel and everyone on the panel said they would be talking to their patients about the AI's and each patient's particular risk. I don't think I have any cardiac issues, but I am really looking forward to having the conversation in May about this drug-- I am coming up on 2 years and wondering if maybe I can take a break....even though the SE's are not terrible, I would love a reprieve!
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I've been on Femara for 1 1/2 years and do have trigger fingers however they come and go. Today I have one but have had up to three.
I wanted to wish everyone a healthy new year.
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Chrissyb,
It was really nice to read your post about how good you feel! Congratulations and I am truly happy for you.
I have read so much bad stuff about Femara and since I know that I need to take it in the future it's nice to read about someone who feel good while taking it!
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Happy new years everyone!
I started on Femara in early October, and now battle nausea/sick stomach feelings almost every day, along with real fatigue in the mornings - VERY difficult to get out of bed!
I also have VERY dry skin and dry eyes/eyelids, and have found relief from AmLactin lotion for my skin, and Refresh PM gel for my eyes at night.
From your experience, would taking Femara at bedtime help the nausea??
I am needing caffeine now to "get me going" in the mornings....any better/healthier alternatives?
My sisters - God bless you all today!!!!
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Lisa, I don't have the nausea, but I find taking the Femara at night helps with the tiredness.I would at least try it at night to see if it helps with the nausea. I also use the Refresh PM for my eyes. Even with it my eyes seem to tear a lot which my eye Dr. says if from dry eyes.
As far as coffee or caffeine no help there. I need my fix to get going in the AM too.
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Nana,
I had to go to my GP to renew my blood pressure medicine. I told him that I had a problem with my sleep(I would sleep at night but when I woke up I felt that I had been run over by a train and I had to take a 2-3 hour nap every day. I also told him what I could not lose weight as this medicine (Femara) had cause me to gain weight. He gave me Nuvigil which helps me with my sleep (I have not had a nap during the day since I have been on this medicine.). I feel like a different person. I am limited on what I can take due to my blood pressure but this medicine works wonders. I lost 11 lbs in 1 month. The medicine is not cheap (cheaper than Femara). My insurance approved it.
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Does the nuvigil cause weight loss??? What is it usually prescribed for? Is it a sleep aid?
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nuvigil is a sleep aid, but I was wondering about the weight as well.
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I was sleeping at night however, when I got up I felt like I had been run over by a truck. I slept but did not rest. I was taking a 2-3 hour nap everyday and still felt like a zombie. I told my doctor that I had trouble losing weight as well. He told me this (nuvigil) would help with this. After finally getting it approved by the insurance company, I started taking it. I feel like a totally different person. I also lost 11 lbs in 1 month.
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I have problems with my hand/fingers on my left side (side I had the lumpectomy) tingling--anyone else.
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I also have numbness and tingling of fingers on my left hand--same side I had breast surgery in 94 and then in 2009 for cancer under arm in same side. It really is a big aggravation but don't know what to do about it. Unless it might be a side effect of the femara; because oncologist said he didn't know what was causing this. Have been on femara since July of 2009 and worst sides effects seem to be not sleeping and being so tired all the time. Everything else just seems to come and go!!! I would rather that all was GO!!!
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I have been on Femara for 4 yrs now and have had a range of SEs...tendonitis, fatigue, very painful joints, stiff muscles, fuzzy brain, loosing words, I could sleep for days at a time and then have a great stretch when I feel great for a few weeks.
I am afraid to stop it because I do not think I would be able to start up again; its hard enough taking this pill KNOWING what it will do (both good and bad) everyday for who knows how long.
What has helped the most? light exercise (walking, Curves, swimming, yoga-type stretching, TaiChiGong and others like that) Hot baths or hot tubs/heating pads, lots of fluids, really cutting down to little salt, sugar, processed foods, little caffiene or alcohol, good sleep. Getting rid of as much bad stress as possible.
I wish you all the best, with little pain and much love and happiness!
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dear all,
I have some of the side effects--- some joint stiffness, mostly eradicated with exercise, the vaginal dryness--somewhat helped by coconut oil and replens.... but the two big ones I want to check with you are: what feels like extreme forgetfulness--honestly, I will be in a meeting, we will make decisions and an hour later, I cannot remember (I do write everything down and that helps), but I was NEVER forgetful--I could remember everything.
The other issue is lack of emotion--I am on lupron and femara- and I feel so neutral-- now, this is sometimes a gift-- I don't tend to get all worked up about stupid things as I did in the past, but I miss that feeling of my heart welling up with emotion about my kids, things like that. I don't think I am depressed because I generally am pretty optimistic, but this lack of sort of "physical" emotion (also the extreme lack of sexual desire) is really strange....
anyone else have this?
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momand2kids, My onc warnded me about the forgetfulness, so yes it is a side effect, and yes I have it too! I do not have rhe lack of emotion though, probably the opposite, I cry at the drop of a hat. I am not on lupron though. salty
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Amen to the ... what? huh? oh yea ... the forgetfulness. It's a side effect.
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an extremely noticeable one!
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I was having real problems with forgetfulness. I started taking a large dose of vitamin b12 and it has gotten much, much better.
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I am so glad to hear others are having this forgetful problem, too. I get so frustrated because it's the same situation here--I'll do something, or make a decision about something etc and later I can not even remember what I did or said. It's like the whole episode is just erased from my mind! I never had problems with memory before, either. I was one who could remember everything and never had to write things down. I'm a teacher, and before bc I could tell you scores and specifics about every single one of my kids in the class--now, you'd be lucky if I could remember their last name. LOL! It really makes me feel dumb.
mbticsw, why vitamin b12? Was that recommended by your doc? Is it for memory?
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Whew! So gald to hear others experiencing forgetfullness. I have been on Femara for 7 weeks and I have been noticing that also. Was thinking it was leftover chemo fog, but probably is the Femara. Wow, after five years of this stuff, my mind will be completely blank!
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Which means we won't hold grudges and everyone we meet will be new. We can read any book, see any movie and it's all a clean slate!! Whoo hoo!
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Too funny Joni
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Joni
that is a great way to look at it--- I can now see a movie and have seen it before and really not remember it.... just came from the bookstore where I bought some new notebooks for work projects--my current system isn't cutting it since it was so dependent on my excellent recall.....I just wonder if it comes back when you go off the drug.....
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I have been on Femara for three months now and my SE are minimal. The usual hot flashes (started during chemo), night sweats, joint pains (try to take walking breaks at work), tiredness and forgetfulness too (I like the everything can be new) but hate forgetting names. The one thing that is really bothering me is insomnia, I guess the trick is to do as much as you can during the day to make you tired at night. I hate taking sleeping aids.
As for hair loss, as soon as I started taking Femara my hair came in fast, felt like a chia pet. Does that stop and then fall out? curious
On rads so other than mulit vitamins I am not for sure what to take.
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momand2kids - re emotional numbness - I have had all the symptoms of the avoidance and emotional numbing type of PTSD (see definition below) since dx but am mostly left with only the emotional numb feeling now. I thought I was depressed but my doctor said no because I was still functioning 'normally' in day to day life and he said it was PTSD. He said it should resolve itself eventually with time but at nearly 2 years out it is still lingering. I hate it but don't want to pump any more drugs into me so I am just going to wait it out. The following was posted on another thread - thought it might interest you.
Here's a definition of post-traumatic stress disorder (PTSD) from the Mayo Clinic website (http://www.mayoclinic.com/health/post-traumatic-stress-disorder/ds00246):
"Post-traumatic stress disorder (PTSD) is a type of anxiety disorder that's triggered by a traumatic event. You can develop post-traumatic stress disorder when you experience or witness an event that causes intense fear, helplessness or horror.
Many people who are involved in traumatic events have a brief period of difficulty adjusting and coping. But with time and healthy coping methods, such traumatic reactions usually get better. In some cases, though, the symptoms can get worse or last for months or even years. Sometimes they may completely disrupt your life. In these cases, you may have post-traumatic stress disorder."
Here's what the site says about the symptoms of PTSD:"Signs and symptoms of post-traumatic stress disorder typically begin within three months of a traumatic event. In a small number of cases, though, PTSD symptoms may not occur until years after the event. Post-traumatic stress disorder symptoms are commonly grouped into three types: intrusive memories, avoidance and numbing, and increased anxiety or emotional arousal (hyperarousal).
Symptoms of intrusive memories may include:
* Flashbacks, or reliving the traumatic event for minutes or even days at a time
* Upsetting dreams about the traumatic event
Symptoms of avoidance and emotional numbing may include:
* Trying to avoid thinking or talking about the traumatic event
* Feeling emotionally numb
* Avoiding activities you once enjoyed
* Hopelessness about the future
* Memory problems
* Trouble concentrating
* Difficulty maintaining close relationships
Symptoms of anxiety and increased emotional arousal may include:
* Irritability or anger
* Overwhelming guilt or shame
* Self-destructive behavior, such as drinking too much
* Trouble sleeping
* Being easily startled or frightened
* Hearing or seeing things that aren't there
Post-traumatic stress disorder symptoms can come and go. You may have more post-traumatic stress disorder symptoms during times of higher stress or when you experience reminders of what you went through. You may hear a car backfire and relive combat experiences, for instance. Or you may see a report on the news about a rape, and feel again the horror and fear of your own assault."fatigue, sleeplessness, forgetfulness, fuzzy brain, power surges, sore joints, hair loss - the SEs hit dramatically after 3 months of starting Femara but I have learned to manage them and 21 months since I started taking it I live a reasonably 'normal' life again. Sleeplessness had plagued me since dx but revved up once I started Femara but it has eased with time and dealing with the emotions that had been bottled up during active tx, power surges have lessened during the day but still wake me several times a night, hair loss just stopped at about 18 months thank goodness
, sore joints were helped by taking glucosamine/chondroitin and fish oil capsules and walking (still have to take painkillers to be able to play tennis and after long days on my feet though) and to combat the forgetfullness and fuzzy brain I make lists and notes and do not multi task anymore - one thing at a time and then I can't forget anything. Funnily enough I am a librarian and find that my long term memory is still reliable - it is just the short term stuff I have problems with - gulp sounds like Alzheimers - hope not!! -
I havent noticed the forgetfulness but I have noticed the emotionless or lowered emotion state- thought it was just fatigue and being tired and achy- maybe not!
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I have not had insomnia lately but that could be due to taking pain med before bed. Rt leg bothering the heck out of me but could be due to leg operation I had 2 1/2 years ago, cold weather or femara. All of the above. I have also experienced some emotionless or lowered emotion state-thought espcially after my last surgery in November to try recon on right side again (had first infection after BiMX and TE on right side had to come out, still have TE on left side). Which did not work. Have been overly emotional about it and I cry every time I think of doing any recon. Starting in March, it was one heck of a year, 2010. Looking for better out come 2011. I have been taking note from this topic to ask my onco next week when I see him.
Question about hair loss though. Since I have been taking Femara, my hair has been growing by leaps and bounds since Oct when I started. When does the hair loss start? Have a wig but not looking forward to it.
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mjbmiller: since my hair grew back from chemo, I have not experienced any hair loss. I've been on Femara since 11-09.
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Eph3_12 Thanks relives my mind that it may not happen.
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Did you know you could get your Femara perscription for $10 for one year? Up tp $800. So if you have no insurance it wouldn't help much. I haven't used it yet but I did print out a card and will try it next month. I found this on the Femara web site.
http://www.femara.com/patient/print-on-demand/print-on-demand-option2.jsp
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Rae
thanks for this--I am so glad I am not alone....as I mentioned, sometimes this "neutral" feeling is not a bad thing--- but it can be unsettling. I had not considered PSTD.....
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I know I've had PTSD symptoms. Sometimes I walk around feeling shell shocked. It's getting better.
I have neuropathy in my fingertips that is really annoying. It started with Taxotere and since it's also a side effect of Femara, it just kept on bothering me. I'm hoping that it will resolve once I'm finally off this drug.
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Seven months on Femara - and I am suffering from severe joint pain. My back - my hip - my knees - one shoulder - and my left hand. I could not go to sleep last night because my hip made it uncomfortable to get settled in, and I awoke several times. I finally got up at 3 AM & took some Advil. I'm also taking fish oil and the glucosamine chondroitin. Weather has turned bitter cold now so I have not been quite so faithful in getting to the gym to walk, which might help me somewhat. I don't know if I can continue to take the Femara. My husband suggested a two-week break to see how I feel.
I see my oncologist again Feb 1 and plan to discuss with her my situation.
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I have been overly emotional today, cry a the drop of a hat. Had #7 rads treatment today. Been trying to walk every hour to off set the joint pains. Took a hot bath last night, helped me to sleep with out pain meds. To cold to walk out side. When will this be over I think some days. But its OK, gota pull myself up by the boot straps and get going, I keep telling my self. I'll cry in the shower tomorrow and it will all wash away.
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MJBMILLER
IMHO I think your emotions want calm down until you are through radiation and have healed from any burns that it may or may not have caused. I think I cried daily through my radation treatment and I cried lots the two weeks it took my skin to heal. It is hard to move on when you are still in active treatment. Plus we have so little estrogen running through our body that we are hit with a double whammy. Give yourself time the episodes will get better. Then when you least expect something will make you cry. Sorry this happen to me last night. We have gotten a rare snow-ice storm and they were announcing the closing. Lexington Oncology came up and said that chemo patients would be called with a new appointment times. Gee it brought back all those memories from last year. All I could think was I was there in that same spot last year.
As far a Femara. Having a few warm flashes at night and still having joint pain. I hope my body can stay on this. I do think my neuropathy seems to be worse but not sure since that pain comes and goes anyway. Seems to be worse when I am warm so it might be the warm flashes causing it to act up. We can do it! Four years, 10 months and 3 weeks to go!
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mjbmiller;
Even though you don't care for sleep aids, might I suggest you try melatonin. It is naturally produced by our bodies but it decreases as we age. My daughter's neurologist has her using it to deal with migraines and sleeping problems relating to them. I asked my onc and he said yes to melatonin. My daughter takes 9 mgs/night and I usually take 3 - 6 mgs/night when I am having difficulty. I only use it once or twice per year.
Good luck. Heather -
Is the melatonin prescribed or OTC, thanks for the suggestion. Woke up again at 3:00am.
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You can find it in most any vitamin section. I use it whenever I have insomnia, which is several times a week. I have a nice deep sleep, and it's safe.
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Everytime I take melatonin, I seem to be groggy in the morning. I notice the bottle says it lasts 7-8 hours. maybe I'm groggy because I'm getting up before the 7-8 hours is up???
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I'm groggy when I first awaken but it goes away quickly. It's as if I'm awakened from a very deep sleep.
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I know that the Se's are different for everyone, so has anyone had pain that feels similar to hitting your funny bone? and if so, any advice on how to deal with it
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Okay Ladies, has anyone else seen a huge jump in their cholesterol since starting femara? Mine is up 50 pts from last year right before I started this crappy medicine! It was 158 last year and is now 208! It has got to be the femara, wouldn't you think? Or perhaps it might be the menopause thing (from ooph)--Anyone else with this???
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Mybails.... I am with you with the strange funny bone pain. I have only been on Femara for 8 weeks now. About a month after I started Femara, it showed up in one elbow, but recently it went away. The stiffness in my joints seems to be lessening also so I am hoping that I am going to be tolerate it.
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weety, Yes, the Femara can cause a huge jump in cholesterol; it did for me! I had to start taking a low dose of Lipitor to keep it under control.
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increase cholestrol & blood sugars, but starting to go back down after several months
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Yes, my cholesterol jumped markedly too (5.3 to 6.3). I suggested to GP that it might be Femara and he said he didn't know it had that SE but when he looked it up sure enough it was listed. I am on 20mg Simvastatin per day and that has lowered it to a level better than it has ever been.
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Mine went up from the 170s to the 190s in one year.
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Thanks all for all the info on chol & the AI's . My doctor also told me that it wouldn't have an effect on cholesterol. At what point is lipitor (or something like it--is it a statin? I don't even know what class of drugs chol-lowering drugs fall into) needed? How high is high enough to bring it up as an option? Mine is 208 now, up 50 pts from 158 last year.
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I have a two month followup with my MO next week and I have lots of questions for him. I have been surpised my SE have not been as bad as some. I have not had my cholesterol checked in a while but I am sure my MO is keeping track of that? I think I need to see my GP soon, he has been monitoring my thyroid levels since I am on syntroid.
Lack of sleep is better though.
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My cholesterol is up too. I hope in time it will go back down too. I wonder what GP will say when I see him next month. Ugh....
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Has anyone gone on a femara" vacation" to see if some these things resolve? I am thinking about asking for that this summer....
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My cholesterol went down. It was 225 in 2009 Had it checked in dec went down to 154 my md was pleased.
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momand2kids- I did go on a femara vacation. When I started it Jan 2009, I had slight trigger fingers in 3 fingers and severe joint pain within just a month or so. I took 6 weeks off, and it all went away. I then started back, but decide on my own, I was just going to take 1/2 a pill. My Onc agreed, though he would rather me take a whole one of course. No more trigger finger, but still pretty bad joint pain. I did have an ooph as well, so I'm sure that has contributed to the s/e's as well. I had my estrogen level tested, just to make sure I was achieving estrogen suppression with a half a pill. And it came back low, so I feel comfortable with that dose.
Hoping now to find some way to alleviate joint pain, without taking pain pills. Taking glucosmine/chondroitin, gelatin capsules, calcium and Vit D. Just started a low dose of Nuerontin (300mg) for hot flashes, and hoping to get some benefit for the joint pain from that. BTW, the nuerontin has greatly helped the hot flashes. I was having 8-10 hot flashes a day, and my endocrinologist said " that's alot". He said Nuerontin (gabapentin) is prescribed up to 5000mg for seizures, depression, etc., but has been found at low doses to help with hot flashes. I hated starting another med, but at the same time felt like I was about to burn up, dry up, shrivel up from all the hot flashes:)
Joni
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Hi all, have not posted in awhile. Having gone from Arimidex to Femara has been like a dream come true. Just finished PT for wrist problems which has pain has subsided quite alot from A which I was on for 7 months, had a vacation of two months and started F in Oct, perhaps one flash a day if any.
I go to Onc this Thursday, hope my blood levels and everything is ok.
Happy New Year to all.
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I am having trigger finger in my thumb!!! This stuff is so painful!! To all my femara friends who have had trigger finger, does it go away as a lot of the other things do on the med? Or is it here to stay? If it is here to stay, I am gonna talk to my oncologist about going to half a pill a day. Also, my last surgery was under my left arm. Cancer is now gone but I am having one heck of a time with numbness and tingling in fingers and also bottom of arm from hand to elbow. Has anyone else had this? I am wondering if it could be a build up of scar tissue. I see onc. again in March and will ask him about it.
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My fingertips are almost completely numb. I have found neuropathy listed among the Femara side effects. Not sure if that's why I still have numbness or if it's a lingering effect from chemo.
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I just read what trigger finger was. Evidently I had this slightly before cancer and yes it is acting up big time in the last two weeks. I have it in my middle finger. I too have numb fingers but so far the Femara has not made it worse. Mine is from taxol and I also have numb feet and from the knee down on the inside of my legs.
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I have my neuropathy lingering from my taxol treatments still. So far only my finger tips and toes are affected. I have an appointment with MO and have lots of questions since I have been on Femara for three months now. SE still have not been too bad.
KittyDog - like you my friend who started two months before me, had her whole legs affected. She seems to be doing better but still has problems.
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Ive been on femara 2 years now and I am having terrible joint pain- especially in my right knee. I see my onc in a couple of weeks and am tempted to ask for a bone scan because it hurts that much. Our household all got the stomach bug during the holidays and I skipped three days because I couldnt eat at all or take anything and the bone pain started decreasing in just those three days.
My cholesterol has also gone up- I really dont want to add another prescription for that so Im trying some alternatives. Also noticed some blood pressure increase- dont know if that is femara or some other SE of all the crap in the last 3 years.
My hair came back after chemo and is thicker than ever according to my haridresser!
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Weety - 200 - 239 is considered borderline high (it is numbered 5.2-6.2 in NZ). 240 and above is considered high. Mine has always sat at 5.3 (which is probably about what yours is now) but about 6 months after starting Femara it was up to 6.2 and the doctor said it was too high and put me on the statin. He said he had considered the four risk factors for stroke and heart attack - high BP, high cholesterol, diabetes and obesity when making the decision to put me on cholesterol medication. Although I don't have diabetes, I have high BP (although it is well controlled by medication) and I am now 30lbs overweight (thanks to Femara too) so the high cholesterol was a third risk factor which he wanted to get rid of. If I had none of the other risk factors my doctor would, and did, accept a cholesterol level at the lower end of the borderline high grading as a single risk factor. Best of luck with you decision.
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To my trigger finger friends, someday my wrists are affected with neuropathy. Somedays good, somedays not so good. First thing waking up with wrist problems is awful, but much better than in the summer when I was taken off Arimidex.
I have a question to ask. I had the Novartis coupon, and after 4 $10.00 prescriptions, CVS told me that Novartis pays only up to $800.00 of what the co-pay is. Tonight I had to pay $99.00. My co-pay will be 50% of the drug which has gone up to $522.00, last summer it was $430.00. Has anyone else noticed an increase in the retail drug cost. Oh well, it will keep me bz tomorrow calling the drug company. The retail price is going up and up and up. Has anyone on this site used the Novartis coupon. Will check back tomorrow.
Thank you. Good night.
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ronqt1- I got my femara prescribed last Jan, and I printed off the Novatis coupon...took it to Walmart. They entered the info in their computer and it was good for the whole year. $10 every month. I just got my new prescription, and thought that maybe I should go to the Novartis website and print out a new one for this year. So I did, and when Walmart entered it, it didn't work. They called Novartis and in about 15 minutes I got the prescription for $10. I did noticed it went up from $458 last year to over $500 this year.
Try again, or maybe you could contact Novartis yourself and ask about it.
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Okay, now I have a new problem to worry about (always something!) As you kknow, I am currently on femara, having normal side effects, but nothing too terrible (except the higher cholesterol) My onc asked me at my appt this week if the pharmacy had called me about switching to arimidex. I'm assuming they are asking all willing patients to switch since it is so much cheaper now that the generic has come out. I think it's pretty much a done deal (that's what happens when you have an HMO, I guess) but he did ask me again, right before I left if it was okay to switch. I told him I'd have to think about it--I'm not having any more than the usual side effects (besides feeling old and crickety etc) but I'm afraid to switch--what if it's worse? What do you all think? Should I put up a fight and kick and scream to keep the femara? Or should I choose my battles and let this one go, since they are basically the same?
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I just got my prescription filled two weeks ago at CVS and it was just $427.00 here if I had to pay for it. Thank goodness my co pay is only $30.00 Will let you know if it goes up when I fill it again.
I would tell them no. I want have that problem because the NP told me for some reason my Dr. does not prescribe that one. I guess if I run into problems he will try one of the other expensive ones. ugg.
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Ronna I get my Femara at Walgreens and I've been using the coupon for 8 months, every time I pick it up I have to tell them I have a coupon on file and they readjust the cost from my copay down to $10, can you call a different pharmacy and ask them if they accept your insurance and the coupon and see about getting your prescription transferred over?
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weety-when I was having some fairly bad joint pain which I attributed to the Femara around June/July last year, my onc tried to talk me into switching, but I didn't want to because at that point Femara was a known entity. I'm glad I stayed on it now as most of my SE have mellowed out to pretty much nil (Or else I just notice them anymore because of everything else that goes on with me). Anyway, passed my 1 year mark on Femara in November and barely even thought about it. It has been a year, just about right now actually, that I switched to taking it at night. That has made a lot of difference for me! Good luck all!
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Hi girls! I join the club of high cholesterol 6.1mmol/L , 6 months on Femara. Just discovered by neuropatologist by chance. The bons aches gone, flaches getting rare, mainly in the night, but cholesterol is up and thyroid is hyperactive.
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Should I be asking for a thyroid test as well?
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Hi everyone. Just found out Femara is going generic within the year.
Hi Cheryl: I also called Novartis directly. They put me on a patient assistance list to try and help me with co-pay. I have to wait to hear from them. Novartis people did explain that you can only use one coupon for the reduced amount up to $800.00 which I have exceeded. No more.
I went to Onc today, my hemoglobin is down, waiting to see other results of my blood work, (incl. iron)I told the dr. I am considering going off the med because it is either take the medicine or eat. He was nice and gave me some samples.
All in all, I find living is easier with Femara than Arimidex.
Can't wait for generic. Has anyone else heard this. Novartis and Doctor told me.
Hugs.
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To all, if I understand it correctly, the Novartis insurance company works with your insurance company and I pay 50% of a drug cost, or the contracted rate. My plan stinks big time. All my doctors are on my plan and don't want to change.
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We at least I do not have to worry about my thyroid as that has already been taken care of, was diagnosed with hyperthyroid in 2000, took the drug to slow it down then it started to affecting my liver function, stop it then had my thyroid nuked, opted for non removal since it is attached to your voice box. Now hypothyroid, been on synthroid ever since. Going to see my PCP about my cholesterol to see if it is high next week and see what other things we need to look at. SE at a minimum knock on wood. Except for the lack of sleep I am doing better.
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Getting ready to start Femara. Have been having wicked hot flashes since going off HRT in November (when I was diagnosed.) Any words of wisdom on what you can take for this (anti-depressant?) while on Femara?
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KatherineP, My onc. put me on 37.5mg of effexor, that did the trick!
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Hi, Katherine, I am on Paxil, 10 mg.
Mine also does the trick,
Hugs,
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Hi... sorry I haven't been on in awhile. I had a bone density test, and I have lost significant bone mass since starting Femara one year ago.
So... it's back to Tamoxifen for me...
Bye... good luck to all!
Harley
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Oh, forgive me but I'm whining today!!!! My hands hurt so badly ---- particularly my thumbs. I feel like an OLD LADY!!! I've only been on this crap -- sorry, Femara -- for 8 months. And I also take a statin for my elevated cholesterol & Effexor for the other side effects (sleeplessness, hot flashes, etc.) Joint pain is not fun, that's for sure!
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No it's not Bev. Sometimes I feel like beating people up when they make comments like "I'll bet you're glad it's all behind you!" If they only knew!
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Hi all, I sometimes feel I shouldn't post as other than the melting moments, I'm doing really well on the Femara. I feel a little guilty as a lot of you seem to be suffering badly with SE's. My thoughts are, that perhaps new takers of Femara need to know that not everyone has bad SE's. The same goes for all meds that are given to fight this beast. I know that the girls who mostly post are the ones who need the support of others going through the same things and to you, I wish for you the ease that I so far feel.
Peace, strength, love n hugs. Chrissyb
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chrissy, you are so right. Though many of us suffer through femara, women need to know it is very doable, for most, and some (lucky you) have little difficulty.
Of course you should post. It's encouraging to us all to hear success stories at every level !!
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yes it is nice to know that some are doing well. My knees and hips hurt today. Walked a lot yesterday.
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Does anyone have any idea why Dr's decide on which AL to give us? Mine said Femara, but I really have no idea why, he just said it was the best one for me if I could handle it ok.
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My last onc started me on Femara and the first onc wanted me to take Aromisen(sp), I asked her why she wanted me to take Femara and she said that she thought it was a better drug and worked better and that studies kind of proved it.....I truly think it was personal preference. The first onc gave me Herceptin when I did not need it. Why? perhaps profit...as he was the head of a cancer clinic.
I only have 10 months left for 5 years on Femara. My present onc says I might be able to keep taking it. Any thoughts on more than 5 years among readers?
Thanks,
Shirley
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kira-I know some of the s/e's determine which AI is used. I think Arimidex and Aromasin might cause blood clots more frequent than Femara. And some are worse for those with cardiac disease, etc.
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jacee that does kind of make sense to me. The Femara is the first he wanted me to use but did say if the SE's are to bad I could try the others. He did mention the blood clots and heart issues in general for all Al's. If the Femara causes less of those issues that might be why since he knew those were issues in my family already with a brother who has had a heart attack at the age of 50.
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I understand that because Femara lowers the levels of circulating estrogen, it prevents or slows the growth of estrogen sensitive cancer cells. And, according to clinical trials, it does a better job than the non-steroidal Arimidex. I for one would be willing to take this pill the rest of my life if it would prevent my cancer from coming back or developing in the other breast. The small yellow pill has been a part of my daily life since Nov. 1 and so far I've had no SE. I do continue to exercise and work like heck to maintain a positive outlook. So it's hard to tell if any muscle aches are from Femara or my Body Pump classes. Lifting weights will also be a daily part of my life forever to guard against bone loss. Best wishes to all.
Diagnosis: 9/10/2010, IDC, <1cm, Stage I, 0/2 nodes, ER+/PR+, HER2- -
Thanks Ladies. I am planning on trying 20 mg Prozac (my onc put me on Effexor about a month back - after 3 days I quit due to rapid heartbeat and having the jitters.) I'm hoping Prozac side effects aren't as bad. Also, I hear it's easier to get off Prozac? (Effexor takes a while to come off?)
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Katherine_P, Have you checked to make sure that Prozac does not interfere with Femara. I say this because Effexor is the drug being prescribed for breast cancer patients on hormone therapy because Prozac and others were found to interfere with Tamoxifen but I'm not sure about the aromatase inhibitors. I would ensure that it does not make Femara less effective before I switched if it were me. I will be finished with my five years of aromatase inhibitors in July of this year. I will have been on Arimidex for one year and Femara for 4 years. My oncologist originally put me on Arimidex but I asked to change to Femara after a year because I read studies showing Femara reduced circulating estrogen levels lower. There is no proof that Femara is more effective than Arimidex, not yet anyway as studies are ongoing but it made sense to me to switch. I do think that all 3 of the AI's are good drugs and it probably doesn't matter that much which one you take as long as you continue on some type of anti-estrogen therapy.
At my follow-up appt with my oncologist this month I asked him if I could stay on Femara and he agreed. He said that if my nodes were negative he would say no but that since I had a positive node he would agree. He would not commit to how much past the five years but I asked if I could stay on at least until the results of the MA-17R trial (which compares taking an AI for 10 years with only taking it for five years) are in which is suppose to be in 2012. He asked me about my side effects and I told him I basically have them all but I still want to continue.
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Hi Ladies. I have been taking Femara since January 2010. The only problems I have experienced with it is hot flashes and sometimes aches .I menioned to my PCP that our bodies need estrogen and she said that Cancer does too! So I will be taking it until my Oncologist takes me off of it. I am pr+ and er +. I have my alarm clock set for 8pm to take it. If anything goes on in my body while I am asleep I will not know it. It is very doable.When I have aches mainly in my legs I just take an Aleve.This happens mostly at night after being up all day.
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Ronna - I started on Femara in April 09 and in NZ Femara became generic late 2009 and I have been on it ever since. It is called Letara here. The cost is NZ$151 per year and our government covers the cost - I pay NZ$12 per year dispensing fee. The SEs haven't changed so I guess it is doing the same job as the original.
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Anyone knows when femara will be generic in U.S. I just had my prec filled 90 days was $1477.60 Last oct 90 days cost $1122.45. Iam on medicare and have part D coverage. So i will be able to get 5months this year before i fall in doughnut hole. Then they say. you can get half price who can afford $700.00 month. Have tried get help but have not been able to get.My income is only $1300 a month. I going ask onc if i can split pills
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ask the onc FOR the pills-they have samples!
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Hi Texas 357, I agree with your statement, the surgery seems easy compared to the effects of medications.
Hugs,
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Nanna, sometime this year the Femara pill will go generic, probably the end of the year.
My retail price for 30 pills is $522.00. Call Novartis directly and ask for patient assistance. Last June the cost was $430.00. Obviously someone is looking to make a profit before generic is out.
My onc. also gave me samples.
Have you tried the coupon on line. Go to Femara. There is a coupon. Try it.
Hugs,
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Shirley... Hey, my onc. said that we could take AIs ... for longer than 5 years. He said we could take them l o n g e r.... as long as we want, I guess...
I have a FULL BOTTLE ONE MONTH of Femara, if anyone needs it. Just pm me with your address and I'll send it to you. I can't take it anymore, as I have lost 'significant' bone density since starting it last year.
Harley
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Hi Ladies (and Gentlemen if applicable), This is my first post. I have early stage breast cancer, aggresive and margins less than 1 mm. I had two mastectomies (July and December 2010) and chemotherapy. The bone pain during chemo required morphine. After chemo, I started on Femara (mid-November). The hot flashes and night sweats diminished after about 4 weeks, but the bone pain has increased daily. I take glucosamine and chondroitin, Vit D, Calcium, fish oil, and just started this week on Actonel (bone builder) since I already have osteoporosis. I feel like I am 100 years old. I have the "broken feet", and pain in my long bones as well as every joint in my body. There are time when I need help to move. Note: I am not 100
only 61. I exercise, although this is becoming more difficult. I have led a healthy lifestyle, etc. My Question: Will this joint pain start to diminish in the next few months, or is this a 5-year problem? Help! -
Sheila-I am so sorry that you have this problem. I can only imagine. I have had my share of joint pain, but doesn't sound as if it was as intense as yours. I started Femara in Nov '09. I noticed by Oct-Nov '10 that my joint pain had diminished considerably. I am one of the people who endorse taking the little pill at night before bed--that helped my main side effect - fatigue- tremendously. You don't say, but if you take it in the AM you might want to try taking it at night and see if you are able to sleep thru some of the SE. Of course there are others who say taking it at night is worse, so who's to say. I would hope that as your body adjusts to less estrogen you will plateau on your pain.
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Thanks so much for your reply. I can hang in for a year to see how I adjust...hoping this SE will diminish. I am taking it in the am. The se lasts 24 hrs per day so I don't think changing my time will do much...however, I will try. Thank you for your advice.
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Regarding long term use of Femara...my mother has been on it for almost nine years. She started it after chemo for BC mets to the liver. Even though her prognosis was poor at the time of her DX, she's been NED for nine years. She's 88 and going strong. Yeah Femara!
I've been on Femara for 9-months and had no major SEs (maybe genetic? My mom has no SEs either.) My heart goes out to those who are suffering.
Patty
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Wow msmpatty-congrats to you & your mom & for the hope you both hold for the rest of us.
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Hi Sheila,
I am also 61. I have been on Femara since Oct.2009. I didn't have any SE until about 3 months out. The pain started in my neck then shoulders and stayed in my legs, feet, ankles, and hips. I finally had enough this Christmas when I started waking up and my fingers were locked in a curling position. I couldn't walk but a couple of blocks and to get up from the floor or couch was quite a vision. I also felt like I was 90. I got to the point that I was taking Vicodin at night, (1/2) and then had to take it during the day too. I couldn't imagine living like this for the next four years. I took a break from it for three weeks and I felt so good within 4 days. I actually started getting the pain back after three weeks....not like before but it was there, so I went back on it and I am taking it in the evening before bed. I have been doing much better with the pain issues since I switched....not sure why but I will take it. I did not tell my Onc that I went off but I go to see him in Feb and I will tell him. I have been doing lots of research on Natural Estrogen Blockers. I have all my paperwork so when I see him, he can talk to me about this. Now you had chemo and many more issues than I did. I had a lumpectomy but had to have a second surgery to clear the margins more. I did have radiation which was doable. These AI's affect woman each differently. I don't have hot flashes...just bone pain. I was to the point that I wanted to take my chances and not live like this anymore but when the pain came back after three weeks, I had my doubts if it was the meds. I am very active, not over weight and eat healthy and live a great lifestyle. Talking with all these women has been so helpful to me. My friends and family say, "you look great, I can't see that you are in pain". Well, I don't have enough time in the day to complain about the pain but as you know, it is there 24/7. Let me know how you are doing. Try to switch to P.M. Maybe it will help. I will keep you posted also. Hugs!!!!
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Hi ktmimi2 - Thank you so much for your reply. I am going to start taking my Femara at bedtime. I have "heard" that it takes up to 6 months to get rid of the Femara bone and joint pain after you stop taking it. Don't know if that is true or not. I just hope that I will be able to wear something other than running shoes in the foreseeable future. I have worked through everything with the exception of a few weeks here are there. In my job, I have to be "presentable" and my job also involves travel. Running shoes just don't cut it. Again, thank you for your response.
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Hi Sheila.....I have been on femara now for 3 years and the pain has been unbearable at times. I take it at night and it helps me to sleep I think. I tried several things and nothing worked, took a 2 month break off them last summer and felt better. I have gained a lot of weight on them and my hair has gotten so thin. As for the pain though my onco put me on cymbalta for depression and it has helped quite a bit with the pain. it constipates me but what else is new...ha ha I would check into something like that for the pain if it gets to bad. I have a horrible time with shoes now also and wear houseshoes around all day unless I am going out then it is mostly tennis shoes.....When I look back over the time though the 3 years has really gone by pretty quick....I am 61 in age........Good luck to you and hope it all works out....jude14
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Thank you, Jude14. Just knowing that there are others in the same position is very helpful. I refuse to take any more pills...seriously. I had thyroid cancer and kidney cancer 13 years ago and I am on meds for that. I feel like I could open my own pharmacy! I shall just persevere, and get used to the running shoes. Thank you for sharing your experience - very much appreciated. I am happy for you that your 3 years has gone by quickly. I assume you just have 2 more to go, or would you stay on it longer if you could? All the best - Sheila
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Shirley
I have been on Femara going on 6+ years. My onc decided since I had such a large number of node involvement (14/32) I should continue. The SEs are manageable and have been all along (the hot flashes drive me crazy) but I prefer the benefits. Hope this helps.
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nanna
Go to www.femara.com and you can get a card to get Femara for $10.00. It works. I use it now even though I have insurance because my copays cost more than the $10.00. Hope this helps
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When I went to Onc last week and had blood work done, it was determined that my iron levels were low and now I have to go for colonoscopy?? I am now on Fergon for as an iron supplement too.
Has anyone else become anemic due to femara??
Thank you.
For my sisters in north east, stay safe and warm. Snow snow snow and more snow.
Hugs,
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Hi ronqt....I have been running back and forth on anemia for some time now. I have been on femara 3 years. Was not sure if it was the femara or not. Had a coloscopy in July and it was fine so I guess it could be the femara as I have never been anemic before. I will ask the onco next week when I go in for check up......good luck with colonoscopy.....
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Hi Jude14, thank you for your answer and good luck with onc next week.
Hugs
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When my MO called about my blood work found out my body is still producing estrogen so along with the femara I will be getting a shot. When I starting femara my estrogen levels were low. I am glad I am on Femara even though it gives me joint pains and night sweats and some hot flashes. When I finish my rads, I am going to start walking at lunch time around the office. The MO said walking or some kind of exercise will help the joint pains. If it helps and I loose weight to boot I am for it.
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Sheila - I have been on Femara nearly 2 years now and like ktmimi2 my SEs didn't kick in until about 3 months when one morning I couldn't get out of bed because of the pain in my feet. Started taking glucosamine/chondroitin and fish oil tablets that day and hobbled round like a cripple for a few weeks until the pain started to settle down and now it is more of a nagging ache than sharp pain unless I overdo things. I cannot run any distance now (used to run 5 miles a day at least) but I still manage to play tennis by taking anti inflammatory/painkiller the day before, the day I play and the following day. Instead of running I have built my walking up to 1 - 2 hours a day and it doesn't cause any extra discomfort. My pain has always been below my waist in my feet, ankles, knees, hips and lower back. Fatigue has lessened over time and with increased exercise I think, but fuzzy brain is the worst SEs for me and nothing seems to ease that.
Hope you are able to push through this tough time and get your SEs under control.
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Hi Rae in NZ, Thanks for letting me know your experience. I have started taking the Femara at night to see if the SE are any better. It has only been 3 nights, so it is hard to tell at this point. I think, so far, I am sacrificing sleep in order to have less pain during the day...and it does seem to be a bit better during the day. Hobbling to the bathroom at night is a sight to behold, I am sure. I am only sleeping about 4 hours, so I'll have to sort that out. I used to walk about 5 km per day, up hills and down hills, at a fast pace. Now, because there is too much snow and ice on the ground, I am on the treadmill...almost at a crawl, but at least I am moving! I, too, have a very fuzzy brain, but that started with the chemo so I am not sure how much the Femara is contributing to that. Thanks again for sharing - it all helps very much. Take care, Sheila
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Sheila, I can so relate to the lack of sleep. I take Femara at night so I'm not drowning in sweat during the day, but must say I'm getting so tired. It seems I'm in bed by 8 at night because I just can't stay awake, but then up from 1 on. Tried going to bed later, but still wake up at 1.
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Kira, I stay up until 11 pm, but my internal alarm goes off at 3 am. I am then awake until about 7am, at which time I can fall asleep until 10:30am. Of course, when I am working Mon-Fri, that routine just doesn't work! I'll let you know if I find a way to turn off that 3 am alarm in my head. Take care and thanks for writing!
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gee. I can't get past the warm flashes the past few nights. It is after 3 before I fall asleep, then I am up with my DD at 6:30. Thank God for my morning naps once she goes to school. I told my hubby today that we will be putting in a window unit in the bedroom this summer. lol If I can't sleep for being hot and it is 64 in the house our 100 degree summer days are going to put me over to the lunny house.
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KittryDog, I can so relate. I live in Florida so the summers are mighty hot. At least this summer I can go swimming at 1 when I wake up.
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Hi Femara Sisters, okay I need some advice. I have posted that I have horrible hip, leg, ankle and feet pain. Now, my fingers are curled in the morning and 24 hours a day, I feel like a truck hit me. I have a high tolerance for pain but this is crazy. I had a bit of a bug the last three days so I have not taken my dreaded Femara or supplements. I don't think I can do this anymore. Has anyone tryed taking 1/2 pill each night? Just curious. I don't go back to my Onc until Feb 18th and he will be not happy with me. There has to be another way. Can you tell, I am getting desparate???? Any advice would be great.
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ktmimi2-contact Jacee. She does a half pill I believe. Sorry you are having such a hard time.
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ktmimi2- yes, I take a 1/2 pill once a day. Like you, my s/e's were more than I could take. I still have minor joint pain, but the trigger fingers I had went away. It is much more bearable. My Onc said that's much better than going off completely. I don't know, maybe 1/2 a pill for 10 years will work better for me than a whole pill for 5 years!!! It is a pain to chop the little pills in half though!!!
The trials show estrogen suppression occurs with .5mg. So, I'm still getting more than twice that amount. And I had my estrogen level checked last month...it is very low. So, I feel good about that.
I know how desperate you are feeling...best wishes.
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Sorry MJB; I've been off line for a bit. Melatonin can be purchased at your local drugstore. My onc said not to bother with the expensive brands. I am always on the lookout for BOGO sales. Good luck, Heather
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Ok today the knee joint pain has been bad. I took a water will yesterday for high blook pressure. It is only to be used as needed, and haven't taken one in over a year. My question could it be that, or are the SE's just starting to hit me now after 3 months?
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Hello fellow Femara users, I feel like I am very late to a party, so I am sorry if I am posting something that has been discussed too much already. I started my Femara in August 2010, and thought everything was going along swimmingly, until I started waking up in the middle of the night with tingling hands about a month ago. I thought I was just sleeping funny, but I mentioned it to my onc. last week and she said it was a s/e that some women get. So I came back to these discussion boards and see that it is quite common, but the feeling seems to come and go and I can't put my (tingly) finger on what I might be doing differently on the days it hurts worse compared to the days I feel normal. Do you all remember it coming and going when it first started, and then becoming more constant? I still have 4 1/2 years to go on this, and I don't want to give up on it too easily if it is something I can figure out how to control and live with.
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Jacee,
Thanks for your info. I am going to try cutting them in half. I head that you can purchase a "pill cutter" at RiteAid or your pharmacist. I am going to try anything before calling it quits. The SE's are horrible for me...just the bone pain. I have no other SE like some women have. I would be great if I could walk for longer than 15 minutes and get in and out of my car with some bit of grace. Will it ever end? I know this is the beginning but there has to be a solution and it is my goal to find it.
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I'm sorry to those who are experiencing horrible SE's from Femara. I guess I've been one of the luckier ones. I was on it 8 months before I noticed any SE's. I've been on it for 2 years now, and it has put my cancer into "no evidence of disease". For almost a year after the SE's did start I had noticeable, but not debilitating, joint and muscle pain. I know I have some arthritis, but the Femara seemed to encourage more of it, and maybe was the cause for some. For a few months I noticed "trigger finger" in a couple of my fingers, and my hands clenched tight during the night. Also, I hobbled around the first few minutes in the morning. Getting warmed up and moving around helps a lot. It has always been worse first thing in the morning. Also, I've noticed some fatigue.
But, fortunately, the SE's have gradually decreased over the past few months. Advil and Aleve helped, and now I don't need to take them except occasionally. Maybe I'm adjusting a little, also. And, since it's keeping the cancer at bay, I probably feel I can tolerate it. Funny how things can change with a cancer diagnosis!
But, just wanted you to know that my SE's are very minimal now, and I had heard that sometimes happens with time. I hope it works that way for you gals, also. But, I know that some can't tolerate it and have to stop. There are other AI's out there that work similarly and maybe a switch will lead to fewer SE's. I hope so! I've heard some that take Femara at night, and seem to have fewer SE's and sleep better. Good luck, and hugs to my Sisters.
Lane
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Well, I finally got tired of feeling "yucky" on femara, so I cut my pills in half, too. I feel soooo much better. I'm not as tired, not as achey, and the hot flashes have lessened, but I'm not sure if that's a good thing or not??? Does that mean that the 1/2 pill isn't suppressing enough estrogen? I'm petite and WAS only 100 pounds, but since starting femara (and having ovaries out) I'm now at 110. Thanks femara. I know 110 is still not that much, but for someone who was a healthy weight at 100, just small framed, 110 is a ten percent weight gain. That's a lot!
Jacee, what trials are you referring to about the .5 mg? I would love to read them, if you can find some links to them. I just don't know what to do. I'm tired of feeling so old when I should be feeling young at 40.
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weety- This pdf is from the Femara webpage under prescribing information.
http://www.pharma.us.novartis.com/product/pi/pdf/Femara.pdf
Paragraph 12.1 and 12.2 deal with the estrogen suppression occuring with .5mg. If you read through it all, yes, the results with 2.5mg are better. For me, I felt it was the best I could do for now.
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Weety and Jacee,
I have just cut mine in half too!!!! It has only been a couple of days but I needed to do something. The pain was too much for me and I have only been on Femara for 16 months. Please keep me posted on your levels and what your Onc's have to say. I go Feb. 18th and I will report in.
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Jacee and ktmimi2,
I was always on 2.5mg dose of Femara. I am surprised to hear that the drs. are prescribing any other dose except 2.5 mg... strange...
I was switched back to Tamoxifen because the Femara caused 'significant' bone loss...
Hmm...
Harley
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harley44- My Onc didn't prescribe a different dose, I made the decision to cut the pills in half on my own. It wasn't his recommendation. But, I told him I couldn't continue at the dose I was on.I asked him if it would be better to take a whole pill every other day, or a half a pill every day. He thought it would be good to get the same dose in my system every day. I don't want to give the impression that it's OK to take 1/2 a pill. It was just what I decided to do on my own .....rather than not take it at all.
Joni
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Thanks, Jaceee, for the links. I read the paragrahs you mentioned, but it looks like cutting the dose in half still provides ample estrogen suppression--you had said that it was not as good--maybe I'm not reading the right part. Where did you find that info? All I see is the part that says anything over .5mg suppressed estrogen serum levels, but it doesn't say how much. Thanks for taking the time to help with this!!! I also need to add in that I'm only "weakly" ER positive. Am I doing all this estrogen suppression for nothing? It's making me dizzy just thinking about it all. It goes around and around and around in my head, and I can't stop worrying and thinking about it!
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weety- you can scroll down to Table 16 and see some comparisons between .5mg and 2.5mg doses. Like you said, you are still getting more than double the .5 dose. I know how hard it is to not worry about it. My tumor was 97% ER + so estrogen suppression is very important to me!! We just have to do the best we can do . I may try to go back to a full pill at some point. My joint pain is so much better. We all have to do what is best for us.
I'd be interested to know what your Onc's say about reducing the dosage.
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I have to say I really do not like the way Femara makes me feel however I do not like my chances with a cancer that is ER+ and it coming back. but I take a lot of vicodin everyday for the last two years and I see no coming off any time soon.
is anyone still working with the pain or SE from it, I had to stop working and I just got awarded Soc Sec
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Diane
Vista Ca.
Kerry and other women out there. Ive been taking Femara since 2007. I blend in the morning 1 Tbls. ove flaxseed oil with two bananas choc. syrup 2 cups ove fat free milk. get out and walk jog run or go roller bladeing. come back and sing karaoke. or shop, keep busey. I work at the grocery store in the evening stocking shelves faceing shelves part time, raise two boys husband.Try to rest 1 Hr. before work. I feel good some hot flashes so far so good. I have a abe lounge I use and a gazel ski bike I use every day In the living room for tone.
Good Luck
WRITE back
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I, too, have always been on 2.5 mg...........going on 6 years. The worst SE is the feet feeling like they will crack when I first get up sometime.....at least now.. That started after the 5th year. But, it just takes a moment of walking around to make it better. I have said before and will say it always...........I had 14/32 nodes positive......and am NED for the 6th year. Hot flashes and sweats have always been bad. I just feel that the benefits outweigh the pain. I exercise but not a lot. I do try to keep active but have a job that gives me a lot of time of inactivity. I just want to say that you have to decide what your priority is. If this little yellow pill has saved my life for the past 6 years and can continue to do so............nothing else need be said. This is a personal decision and only you can figure out what is best for you. There are things you can do to counteract the SE's. You can only figure that our for yourself. Best of luck and God Bless!!!!
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Hi Girls, My femara is 2.5 also and I, like Jaycee, decided, ON MY OWN, to cut the pill in half. So far, I feel soooo much better. I can actually put my underwear on without lifting my leg myself. Each of our SE's are similar yet they effect us in different ways. I have NO hot flashes, NO VaJ.J. dryness, just horrible leg/bone pain which doesn't allow me to walk down my stair like a normal person or walk my dog for more than 15 minutes without pain. When my fingers were starting to curl as I woke up in the morning, I knew there just had to be something else I could do. They were crazy stiff like every other bone in my body. So.....I know I have asked you all this: Have you investigated the Natural Aromatase Inhibitor called: MYOMIN ? The key word is Natural with NO side effects. I have all my paperwork to bring to my ONC Feb 18th. I will pass along any info he relates to me. Like you, I don't want this to re-appear on my other side or anywhere else in my body but........my quality of life sucks right now. I am a very active woman and I eat healthy but if I keep taking pills to aleviate each side effect, then they will reek havic on some other part of my body. I can't live on Vicodin, advil, colace, etc each day. I want to go the Natural way if it is doable. If the MYOMIN will keep my estrogen levels where they should be for the next 4 years, yahoo!!!!! Please let my know if you have any info on MYOMIN.
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I think maybe the only way I (we) can find out if the 1/2 pill is suppressing enough estrogen, is to have a test done. I had one done right before starting femara, but at Kaiser the test isn't sensitive enough and my results came in at "less than 12." A lot of good that test did for me. I'm wondering how I would go about (on my own since Kaiser won't allow outside facilities) getting a more sensitive test run. I guess I could check my level on the whole dose and then check it a few months later on the 1/2 dose. Does anyone have any suggestions on how to go about this?
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weety-my estrogen level was the same as yours, only they said <50 and it was as low as it could be. I know I could have it broken down to the different types of estrogen and get a better idea. I know you can order hormone testing through www.lef.org type in hormone testing in the search box.
Just not sure I want to pay for that right now. Maybe when tax refund comes in
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thanks!
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Have any of you experienced vitreous humor tearing of the retinal part of the eye since taking femara? I just experienced that--apparently there is a link between the liquefaction of the viterous humor and lack of estrogen. So one more SE to add to my huge list! I am going to look into the MYOMIN--could it be a natural alternative with no SE? I am thrilled to read all of your responses--sometimes I feel all alone out here in the world--I also have joint pain, numbness, dry skin, eyes, fingernails breaking, hair not growing, etc etc etc, oh, let's don't leave out night sweats and hot flashes and being awake every night!!!!
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And weight gain! I cannot lose anything and I was way down before this stupid pill, now I have gained 15 -the Femara 15 over 2 years. Heading to Mexico thursday and taking a F holiday as well.
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Hi everyone. I thought I had overcome my wrist and hand problems with PT. However, I now cannot hold a pen or pencil without severe pain and it is an effort for me to write. Has anyone else gone through this???? I can type, it hurts, but easier that writing. Again, I was on A first since Dec. 09 and switched to F in Oct. 2010.
Thank you.
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I depend on the computer because my handwriting is almost illegible. I can't hold a pen worth a darn becuse my knuckles hurt and my fingertips are numb from the taxotere treatment.
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I hadnt noticed difficulty writing because I use a computer so much- but I am taking a class this semester and we had a written test last night and realized how painful it is to write for a while with a pen/pencil. Im going to talk to onc next month about being tested and possibly trying the 1/2 pill methodology.
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Hi everyone, due to my inability to write and hold a pen or even anything light in my right hand, my onc. has now suggested I go off Femara for 10 days to see if pain and discomfort subsides. I do have pain in both hands, but right hand is severly worse.
I am also to see a rheumoid arthiritis doctor. This is because I did have some hand problems before cancer.
Thank you for responding. I have no idea what to expect after the 10 days are up. This was my only s/e from Femara.
Hugs,
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Hi Girls! Been on F since Sept.... Bad knee pain today....The last few days I have felt very angry... I will bite your head off? Is that one of the SE? It's almost 4 in the morning... SO you know how I am doing in the sleep department.
Donna
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I would think the angry is part of it. I have knee pain this morning too. I feel like it attacks our weak areas when it comes to the bone and joint pain. I hurt my knee 7 years ago and I have also twisted my ankle several times. Those and my back are the areas that hurt the most.
I have no problems sleeping. I am very thankful for that. I have added 400mg of motrin to my night time medicine. Might have to start taking some during the day to if my back and knee don't ease off.
Wishing you a pain free day.
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Went to Rheumotologist this morning. Dr. called my poblem with wrist/hand tendonitis which I have had in the past pre-bc. Received cortisone shot and have to wear a patch and splint. Hopefully this will help me. I am still going to take the 10 days vac from F as the onc. said
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hope the shot's the fix Ronna
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OK Ladies I haven't posted in a while but I just need to vent - I am sicked & "tired" of the fatigue thing. I cannot believe that by 10am I am quite literally falling asleep at my desk, and I mean falling. I struggle to keep my head up and my hands on the keyboard, often I have to go sit in the washroom and battle the feeling until it washes over me. It lasts about an hour or two then I guess I get through the pain barrier and return to feeling normal, whatever that feeling is. I know it's the Femara - I have tried not taking it for a day and even that short break makes a difference. I used to take it at night but then I couldn't sleep so I switched to taking it in the am but now I have the fatigue problem. I am 2 years into taking this and I thought I had gotten tolerant of the side effects but then it throws something else at you, I can stand the aches and pains as I have a high pain threshold but this fatigue is really bogging me down. I need to be alert at work and I find this a real battle.
OK rant over, thanks for listening, it' s great to have somewhere to come and rant and know people will understand.
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GaynorI, have you taking melatonin at night so that you have a much deeper sleep? Femara kept me awake at night, so I also started taking it in the mornings. I am wondering if it's still not letting you have a sound enough sleep. One melatonin tablet knocks me out in about 1/2 hour and I don't budge until morning. Plus it is safe, and I've read some studies that say it's actually beneficial for BC patients.
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I was on an anti depressiant to help me sleep. MO said I could cause an increase in appetite boy did it. I decided not to take it any more because all it did was help me gain 10 lbs. Started taking melatonin and it has really helped me getting rest at night. I to get tired during the day but try to stay active when I get home after work I rest, going to start walking at least 30 min a day as recommend by my Dr.
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Gaynor1-I'm a proponent of taking Femara at night-when I took in the day, I was like you - falling asleep at my desk-I was going home everyday @ lunch & taking a power nap. I switched to night time & I take the Femara & an OTC sleep aid & I'm out! I know you said you did the night time trial, but you might want to try again, now that you have been doing day time for a while & just see if it's switched out!
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Could someone tell me how to take meds. All at once or a little at a time. I am on femera and blood pressure meds. and vits. and anxiety meds and baby aspirin a dayand I don't know if I should take all at once or all through the day , afraid the femera will get mixed up with all the other,
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Could someone tell me how to take meds. All at once or a little at a time. I am on femera and blood pressure meds. and vits. and anxiety meds and baby aspirin a dayand I don't know if I should take all at once or all through the day , afraid the femera will get mixed up with all the other,
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jrnld28 I take my HCTZ & lisinipril along with multivitamins in the AM. I take my atenolol, simvistatin, metformin & femara just before bed. I only do that because the PCP says to take the metformin @ night & I didn't want to take it all at the same time. The femara works better for me taking it at night.
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I take them all at night. 20 of them. yuck. lol I am suppose to take calcium and extra vitamin d in the morning but I rarely get that in. don't fuss. I have a very hard time swallowing the calcium. Wish I didn't. Thinking about trying the Carmel chew ones. Didn't like the chocolate ones.
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Thanks for letting me know, never know what to do it helps drs. are not good at telling you how to take .I am not very good at asking when I am in the office seems like I am spaced out or forgetful I asked nurse about being so forgetful and she laughed and said chemo brain and I asked the dr. about it and he just looked at me like duh. I have gained 30 lbs. since cancer but not saying its all from the femera because I quit smoking to. You can get scared smokeless. And I thought I had tried everything !
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jrnld28-FYI, until you hit 50 posts, you can only post on various threads 5 times in one day (or so I've been told) you can private message as much as you want. click on the person you want to "talk" and there will be a place to click that says something like "send private message" and then it's just like you are e-mailing that person.
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Thank you.
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EPH - 3
Thanks for the good thoughts. Today is second day. I changed patch this morning. Was able to even blow dry hair, still some pain. This better work, Femara has not affected me in any other way.
Hugs,
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I'm brand new. Am taking Femara to try to shrink my tumor before surgery. Been on it for one week. I'm wondering if anyone know if it's allowed to use Vaginal cream for dryness that includes estrogen. I'm guessing not, but it seems like Drs. used to say it doesn't get in your bloodstream like HRT. Thanks for any advice.
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no hormonal products is best, from what I've been told. A good high quality vitamin E oil can help with dryness and pose no risk.
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Thanks, I forgot about vitamin E.
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I use Vagifem, a vaginal suppository. It has recently been reformulated so that there is even less estrogen in it. I had my blood tested for estrogen levels before taking the heavy, initial "loading dose" of vagifem. Then I had my blood tested again, and my estrogen levels had gone down.
In fact, there was a gynecologist on Dr. Oz recently talking about the safety of this for breast cancer patients:
http://www.doctoroz.com/blog/lauren-streicher-md/vaginal-estrogen-women-breast-cancer
She said (in part): One study which was published in a medical journal (Climacteric 2003; 6:45-52) followed 1,472 breast cancer patients who routinely used vaginal estrogen and were found to have a LOWER recurrence rate than women who did not use vaginal estrogen.
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Thanks, Texas. That is a very helpful and hopeful article. I have printed it and will show it to my oncologist and see what he says. Thanks again for your help.
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Yes, thanks so much for posting that article. I will be showing my onc, too. I am so tired of being so dry down there. Sometimes it even hurts when I am just walking normally! I don't know if it is my underwear rubbing against dry spots, or if it is skin rubbing against skin ( lol--this is probably TMI!) but all I know is that it hurts!
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thanks for the info on Vagifem. I tried it a year ago and was too nervous to stay on it. Now I am so uncomfortable that it's time to try it again -- or try something to combat the dryness, discomfort and recurring UTI's. Anyone else on Femara with recurring UTI's? What a pain (literally) to get these about every 2-3 months.
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I have to add that I also have frequent UTI's now. I never had one in my life till the Femara, so know for sure that's whats causing it.
I will be bringing the article to my next visit with my Onc. We will have lots to talk about.
I do have a question, have anyone of you had neck pain and trouble chewing? These SE's have been rather bad this past week.
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I have started taking Femara at night, it's been three days. For those of you taking it at night, how do you feel during the day?
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Saw my onc today. Was talking to her about aches and pains and she told me to take 2 week break from femara. To see if it was my problem. I told her i have had fibromylagia. She said when i came back in 2 weeks if staying off femara helped she would change to another medication but what i have read they all the same so why change Anyone had any luck changing and not getting aches and pains. Then she said she put me on cymbalta for fibro. So guess wait and see
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That's part of why I really don't say much to my oncologist about aches, pains or other concerns. Their answer is usually to prescribe another medication, and I'm always concerned about each medication having its own side effects. That's just me, and I understand that some of Femara's side effects can be horrendous,making a second medication entirely necessary. I just hope I don't get to that point.
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mjb-I take Femara @ night-I feel so much better during than day than when I took it in the AM-When I took it in the AM-I had to take power naps pretty much daily to get through my work week. I hurt like crazy in my joints. Taking it at night has lessened the fatigue by major leaps & bounds, joint pain is somewhat better & it helps me sleep at night (sort of)
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I have been on Femara now for three months and think I am tolerating it pretty well. I have always taken it at night and think it helps me sleep also. My aches and pains seem to develop later in the day, mostly stiff leg joints. We live in a house that is a virtual stair master so evenings can be a little difficult. We recently spent some time visiting friends in Arizona who live in a typical Arizona ranch house. After a couple days, I started thinking, WOW, no stiff joints! Recently say my ONC and I told him I was willing to tolerate these achey joints without any further drugs for now. Trying to stay active as much as possible and have started swimming again. I think that helps alot.
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Hello all,
Not many people mention my second worst reaction to femara which was nausea. (Mental fog is the worst!) But several have mentioned antidepressants. I was so sick to my stomach for the first five months of femara, I thought I would not be able to continue. Then I started taking a little cocktail of low-dose antidepressants including wellbutrin, prozac and elavil. I mean really low doses. The lowest they make. And I am feeling much better. I think it makes sense because nausea is a central nervous system problem and these drugs go to the CNS. It's been three months now and I have almost forgotten about the "morning sickness" feeling. I think these meds may help the bone/joint problems a little too. I haven't gotten smarter though.
Thanks for all the information.
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Has anyone onc changed from one medication to another and not get same aches and pains. I am taking femara and she wants change to another for aches and pains. From what i have read they all have same effects?
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Hi Everyone,
Just went to my Onc last Friday. I mentioned before how much bone pain I was experiencing since taking Femara over a year ago. Last Oct., it progressively got worse and my fingers were curled in the morning with pain and stiffness. So....he took me off the Femara until April, then I will try taking it every other day. If that doesn't work, he said we will try the Generic Arimedex. He said, it is all about finding that right balance that works for you. I also have to up my Vit D. Maybe, if you are having the pain level I was experiencing, you can ask your Onc about taking it every other day. I did ask about the Natural Estrogen Blocker, Myomin and he said there is not enough studies on it and he would not take it. Good luck in finding what makes this drug work for you. Be incharge and try anything to make your quality of life manageable during this part of your journey.
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Hi Nana, I was starting to suffer greatly with the Arimadex and was changed to Femara almost 4 months ago. Since the change, I have had little or no side effects so a change just may help you to. The way my onc explained the differences was that even though they all do basically the same thing, they are put together differently and so have different effects for different people.
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Well my onc said she wanted to change me from femara to arimadex( ANASTROZOLE) Just found out that i can get this one for 90 days $10.00. Where as i was getting femara for $1435.78 for 90 days. So needless to say the cheap one I will get . I
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I have been on femara for about 9 months now, and I noticed all of a sudden, my hot flashes are more intensified again, much like they were at the beginning. They had never gone away completely, but had lessened in the number and intensity of them. Why are they back? Did this happen to anyone else?
That reminds me, nanna, that I need to put in my refill request for my femara. My onc told me that the pharmacy would probably be calling to switch my prescription to the generic arimidex for this next refill. I'm not sure if I like the idea of having to switch, but I guess I'll wait to see what happens when I put in the request. The cost is not an issue to me--I just pay a $5 co-pay, but I know the insurance will care.
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Hi Ladies,
I took into consideration your helpful comments and decided to change to taking my meds at nighttime. I am not feeling the exhaustion till later in the day, say around 1 - 2pm rather than 10 or 11am, an improvement although work is still affected. However I have also noticed that the hot flashes are more intensified and the aches and pains more noticeable, but I think this may be because these are happening earlier in the day now instead of when I am sleeping. Seems we are all stuck between a rock and a hard stone trying to figure out which SEs we can deal with and which we prefer not to.
I will talk to my onc when I have my next check late March. I am glad I will only have to take these orange pills for another 3 years, I have more or less decided not to take them past the 5 years as they have already affected my bone density adversely. My next bone desnity scan is early in March, last year I was early stage osteopenia, if it has declined further I am not sure what I will decide to do. My Mom took alendronic acid (bi-phosphonate for bone degenration) and had bad experiences taking this stuff orally so I am not sure I want to go that way, we did discuss Zometa last year but that is not covered by OHIP here in Ontario and is expensive, it is also not covered by our health insurance as it is not considered "standard of care" of Stage 3B here. I do not wish for the C to return however I am concerned that having osteoporosis is not a place I want to go either. I guess only I can decide whether the chance of recurrence is something I can deal with.
Well thanks for listening. Hope everyone has a great weekend.
Gaynor
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Hi,
I started taking my Femara at night (thank you all for your advice) and it definitely helped the s/e for awhile until I started taking Actonel. The bone and joint pain is as bad as ever - sorry to say.
Does anyone know the actual risk of not taking ht versus taking ht? For example, am I 25% more likely to have a recurrance, or is it more like 2.5% if I stop taking Femara? I am early stage and had a double mastectomy. I had vascular invasion but no positive lymph nodes. Also had very narrow margins. My doc said most women like the aches and pains of Femara because then they know it is working. Well, I know it is working 24/7. Rolling over in bed wakes me up. I can't wear shoes and I can't wear my snow boots (originally very comfortable). I can only be in a store for 10 minutes or so before I have to get off my feet. I fall in and out of my car....and I still work, although mostly from home now.
I am kind of thinking that exercise and diet play a huge role in the prevention of bc recurrance, but maybe I am just looking for a reason to stop this drug. Although none of you know me, I have never been a complainer and I have a very high pain threshhold.
Thanks for listening. I think this website is the best place ever.
Sheila
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Hi Sheila
Wow your side effects sound just like me! I also am not a complainer and have a high tolerance for pain. I have been on Femara for 17 mo. After a year the pain got worse and my fingers were curled in the morning with pain. I would have to take Vicodin at night for the pain and Ambein to sleep. Then it got so bad I started to take Vicodin during the day. By Dec I said forget this and I went off everything until Jan. I felt like my old self within 5days and it got better each day being off it. It was difficult to start back in Jan but I figured I would gut it up until my Onc appt in Feb. I went last Fri and he took me off unit April then I will start again but....only one pill every other day. He said it should eliminate the majority of the bone pain. He also told me to up my Vit D to 2000mg. This will help too. So I am willing to try anything at this point but I was not about to live with this level of pain for the next 4 years. Ask your Onc to try something different like maybe every other day or 1/2 pill each day so it is not so strong. Who would have thought these little yellow/orange pills would cause so much grief. I am loving being pill free right now. Do you have an Onco Score? That is a huge factor in reoccurrence . Mine is 18....right on the border of low to intermediate. Please let me know how you are doing. This is a great website with amazing women to vent to and help get through this time. Hugs to you! -
Morning gals...I'm new to your thread, but I know my Oncologist is going to prescribe Femara next month for me. I've been on Tamoxifen for 14 months, & everything was going great, except I lost my hearing. I KNOW I'm older...like 73, but it just happened 3 months ago, & kept getting worse. My last pill was last Sunday.
I'm going tomorrow to Costco for another hearing test, & hopefully hearing aids. I found 4 different web-sites talking about Deafness & Tamoxifen... One mentions 72% of women over 60 taking Tamoxifen, will have hearing loss. But it is sooooooo hard to get the Docs to believe this! Even reading the reports, isn't enough for them to buy it!
They said I have "nerve" damage, & it is irreversible ....But I just wish I could prove them wrong... and that my ears, would magically "open up."
So I guess I'm asking, at my age, what can I expect on Femara...I'm already taking lots of vitamins...It is easier on you if you take it at night? I'm used to the SE's of Tamoxifen, & found you GET them, but they don't hang around long... except for the hearing problem.
Thanks for any suggestions....
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Chevyboy: sorry to see you hear...hearing loss-Gemine Criminey Crickets!!!! I take Femara at night-helps me best. Have joint pain, but so far livable. I'm almost 57 so I'm not sure what you may be facing, but hopefully it will be ok.
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Oh Thank you Eph3....I saw your picture on another thread, & I'm so glad you answered! I was thinking about calling the Oncologist tomorrow to ask about taking 1/2 the Tamoxifen....instead of the whole pill...It's just hard trying to convince any Doc that this happened, even with seeing the 4 papers on Deafness & Tamoxifen. But I'll find out...
Yes, I read that on your other thread, that most women take it at night! Is it very expensive? I know my Insurance won't cover it like it does the Tamoxifen, because it is not generic....Thanks!
Edited to say...it was THIS thread where I saw your picture... Also, are all you guys post-menopausal?
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Hi Chevyboy, I'm post menopausal and have been on Femara for 4 months after taking Arimidex for 18 months. At Ephs suggestion, I started taking the Femara at night and have found that other that a few hot flashes and a bit of minor tiredness, I have no other SE's at all......for this I'm am very gratefull. I do hope that your hearing loss is not permanent. Good luck!
Chrissyb
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Nanny, I am replying to your request for an answer. I went from Arimidex which caused severe mental fog, tendoniitis, depressession and more, I switched to Femara and everything went away except tendonitis which was recently diagnosed by a rheumotologist who gave me a cortise shot in my wrist as my wrists and hands were in severe pain. The pain was caused by Arimidex.
Due to the wrist pain onc took me off for 10 days, and in this period I went to rheumotologist. I can now hold a pen again and write legibly. I am waiting for onc to call today to let me know if I will cotninue with Femara which I felt was much better than Arimidex. I just hope going back on Femara will not bring the wrist pain back.
I just felt that for me Femara is better than Arimidex.
Hugs
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I am going to try Arimidex see what happens I have been off femara for 10 days and still have aches and pains. So i can get generic Arimidex so will it at least it wont hurt my pocketbook too.lol
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Nanna,
Please keep me posted on your progress. I am on the SAME path as you are. I have been off Femara for one week and I still have pain but not as bad. My next step, if taking the Femara every other day doesn't work, will be switching to Arimidex. I don't start the every other day routine until April. I would love to know your progress. Good Luck!!!!
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I have thrown so much stuff with all parabens and other crap-get goat milk soap at the local farmer market and order stuff from noelle at elleoiner.com.she make h7er own products little store in canada.
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ellenoire.com is wonderful- Noelle (owner) is a breast cancer survivor and member of our May 2008 chemo group. She can also recommend products you can get locally if you dont want or cant afford to order.
her Bath boms are my absolute favorite indulgence!
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Just got my second Zometa infusion yesterday. Shew had rough night had flu like symptoms. I was awake all night. I drank plenty of water but, still was rough. Glad i just have it every 6mo.
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Dear All, has anyone had a positive experiences with femara - i.e. no side effects? Is it possible to have no side effects? I am trying to weigh up the pros and cons of taking it... Thank you
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I've only taken if for 3 weeks, but so far so good.
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I suspect there are some lucky people who don't have any effects (although in my case some of the "effects" I feel I had before Femara, off & on, so who's to say if it's really the med or not). I know some have very much less effects than others....I don't know if there's any rhyme or reason but I hope for less for everyone/.
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My onc wants put me on cymbalta for my pain she thinks that the fibromalygia is what causeing lot of my pain. Has anyone else used this for pain?
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Haven't posted in a while but am trying to keep up reading this thread. I have been on Femara for a little over three months. When I visited my ONC a few weeks ago, he and I both thought that I was tolerating it well enough to keep going with it. But the past couple weeks, I am noticing very stiff joints, especially later in the day. We live in a house that is a virtual stair master so I really notice it. As long as I stay on flat ground, it just isn't an issue. The bigger issue for me really is the HUNGER! Anybody else? I was doing pretty good at knocking off some of the 13 pounds I gained through chemo, but now I just need to tape my mouth shut!
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Ainemw, I have been on Femara for 4mths now and other than the fact that I tire easily and I have a few hot flashes, I have no other side effects at all. I was on Arimidex proir and the side effects I had from that were really terrible and yet there are women out there who have no SE's at all. We are all different and as such will react differently to the drugs. The only real way to know is to try ir for yourself.
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Ainemu, I have been on Femara for 5 months so far, and can say the SE have been minimal. I had lots of hot flashes the first couple of weeks, but now only a couple a day. My worst SE are the joint pains. For me keeping glutin out of my diet does help. Wish I didn't love noodles so much.
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I had slight lingering neuropathy in my feet from taxol. It had become minimal during 5 years of tamoxifen. I have been on femara for 6 weeks and it is getting worse. If it starts in my hands I will have to come off the drugs as I will not be able to work.
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To Chevyboy: I'm 58 yo, had been on Femara from Aug 2010 to Jan 2011. Stopped because of many SE's which started after two month taking: non-stop headache with tinnitus (was this a hearing problem or vascular - nobody knows), very strong breath difficulties, feeling I'm going to dye soon, hypothyroid, nimbness of hands and legs fingers, vision lost (black spots), insomnia (now don't sleep without sleeping pills), palpitation and symptoms of depressions. My doctor also coulnd't believe me that is from Femara and sent me for all kind of tests including brain scan and MRI. All tests were so good! Finally I called to the doctor and said I stopped Femara. Then, he prescribed me Tamoxiphen. I didn't started yet, so much I'm scared of any othe SE's. A month after stopping I feel much better, stronger, able to do everyday meeds (with Femara I couldn't lift things and bend the head, was very tied in the evening and couldn't drive). Hearing/tinnitus problem still the same. Thyroid function come back to normal very fast. Is Tamoxiphen better choice?
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Hi Montreal....I also sent you a PM....I just don't want to scare anyone who is taking Tamoxifen, but I am ALSO afraid to take anything else.....
I don't know if Tamoxifen is a better choice....The Doctors just try & prescribe us something that will keep cancer from coming back...but man, the SE's are sometimes worse than the actual disease! And so are the drugs!
I heard from the Author of Tamoxifen, Tears and Terror, & she said to avoid Aspertame at all costs....and I have used it for years....Maybe you all knew this, but since reading about this & it's relation to Breast Cancer...I guess I'll just give it up!
So sorry about your SE's!!!!! Talk to you later after I get my hearing aids...then I can HEAR you, Ha!
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Been oh Femara since September...For about 1 month I been having knee pain... So Bad that I need a brace.. I walk with a limp . Ice, heat , you name I tried it... I haven't called Onco yet because I just finished today with my tattoos for my Bi lateral Mx. I figured one thing at a time... Does any one else have this kind of pain... I hyper extended my knee about 2 years ago.. I feel like I did again... but I know I didn't do anything to my knee...HELP>>>>>>
Any suggestions. ??
Donna -
My knee kills me too and I also injured it many years ago. I have started taking two motrin at bedtime and one in the morning. My ankle also hurts and it to has an old injury to it. Makes me wonder if it isn't attacking my injuries.
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ariesrottie-not sure, but more than likely that pain will go away eventually, possibly showing up elsewhere. My joint pains were fairly intense initially (started Femara 11/09) but went away. About 4 months ago I was having some wrist discomfort; that's gone & for the last week, my left ankle, which has been severely sprained a couple times back in the 80s, has decided to start hurting. Trying to ignore, but thinking I may need to get & use an ankle brace for a while. Why don't you try a knee brace for a while?
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Went see onc yesterday. She told me go back on femara and see what happens see also gave me a prec for tramadol took it last night slept so good. When got up didnt have hardly any pain so pray this works. She also told me Femara would be generic in may my pharmist told me he heard end of march. Guess wait and see.
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I've taken Femara since May, 2010 and am 63 yrs old. I have developed "trigger thumb" on my right hand. Thumb joint pops in & out when bent & is so painful. I am also taking a statin for my elevated cholesterol, so saw my regular doc yesterday to ask about the combination of the two drugs & my joint pain. He told me to stop the statin for 2 weeks & not to take any Aleve (if I can manage) to see if the statin is contributing to my pain. My regular doc is also sending me to an orthopedic "hand" doc about my incredibly painful thumb. Anybody have any luck with treating a trigger thumb with cortisone shots, or as a last resort, surgery?? I can't imagine my future with this thumb problem. And I've got a long way to go before my 5 yrs on Femara are up!!
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Oh I want to know if anybody has sought treatment for it too. My Dr. offered to send me to an ortho but I told him let me see what my oncologist said first.
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Hi Ladies,
I have been on Femara for about 2 months. My hip feels like someone hammered a nail in it. I run lots, which I am sure does not help. My onc wants me to have a bone scan. I am pretty sure it is just the Femara. What do you all think? I really do not want a scan. I feel great other than the nail in my hip.
Take care!
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I've been taking Femara now for about 4 months and am having some pain in one thumb and I am wondering if it will turn into "trigger thumb". I had carpul tunnel surgery on my right wrist about 5 years ago and never had any problems with my left until about 2-3 weeks after starting Femara. I mentioned it to my PCP and my PT and neither of them will definitely blame it on the drug, but I really think it is. For now, I am wearing a wrist brace at night, and that at least lets me sleep. Any one else have trouble with carpul tunnel while taking Femara?
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I've been on Femara since June 2009. Since then I've had joint pain which I keep in check with Tylenol for arthritis. I had two trigger fingers one of which has gotten better and a trigger thumb. I had my chiropractor look at my thumb. He pulled it and twisted it and told me to squeeze a tennis ball to help it heal. To be honest I don't think anything he did helped but it did eventually go away. I blame Femara for my dry eyes and high cholesterol and belly weight gain but I won't stop taking it until my five years are up.
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This may be off topic, but I have seen others who are taking Femara complain about the cost of the prescription. Does everyone already know about the $10 coupon from Femara.com? My co-pay is $65 for a month's worth, but with the coupon it's only $10. The coupon expires in June though.
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Hi Sherri, does that coupon for $10 Femara only apply in America?
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Hi Montreal,
I am 56 years old and have been on Femara 3.5 years. Had every imaginable medical problem during that time. Bone issues, tendonitis in hand and forearms for 6 months, asthma (never had before), weeping rashes with no explanation, painful neck for 6 month, painful feet when walking for 3 years, back problems, hair falling out and very very thin now.
My latest problem is dizzy all the time with tinnitus.Have had it for the last 9 weeks with no answer at this stage. Had blood tests, then send to ENT, couldn't find anything. Why did your doc sent you for brain scan, did he think the dizziness was cancer in the brain. That is one test I have not been sent for. I am really freaking out about what the cause is.
ched
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Aussieched, I would imagine so, but it actually only says at participating pharmacies. Check out www.femara.com and ask your pharmacist. It's worth a try.
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Aussieched, are you presently using Femara? Your script should cost you no more that about $33.00 and $5.00 if you are on a pension with health card. If it is costing you more, your pharmacy is ripping you off.
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I have been on Femara for 5 months and the SE that bothers me the most is knee joint pains when I get up. I try to walk as much as I can and that seems to help. I did take the recommendation from Eph and started taking it at night and my SE are so much better. I am sleeping better at night too. I had neropathy in my hands and feet from chemo and luckily the Femara has not aggravated it so it has almost gone away in my fingers just some tingling, still have it in my feet. The SE are so different from one person to the next, my MO recommended it for me and I am glad. I use the prescription by mail with my insurance company and I get three month refill for $80 vers the $40 per month I would have to pay at the pharmacy.
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Each time I get up, I walk like I'm 90 years old. My feet hurt a lot, especially first thing in the morning. And I have almost no strength in my hands because my fingers hurt to grip anything.
Three years, 4-1/2 months to go!
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OMG, I am a mess. Supposed to start Femera monday, but after reading all these posts I am soooo nervous. Had ovaries out 3 weeks ago because the Tamoxifen caused a blood clot to develop. I am 53 years old, high blood pressure but other than that in pretty good shape. Is it better to take it at night?
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Many have recommended taking it at night, especially when the side effects were bad during the day.I have always taken it at night. Understanding your anxiety about starting Femara I have had no extreme side effects and the various aches go away quicky as I go about my morning routine.Hoping that you will have good results!
Jane(xgolfer)
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KittyDog & others with trigger thumb: I saw an orthopedic doc who specializes in hands today. He gave me an injection of corticosteroid in the joint at the base of my thumb. It instantly numbed my thumb & stung, but pain was tolerable. I am scheduled to get another injection in 4 weeks if this one does not cure the trigger thumb. He said I can have a maximum of 3 injections a month apart, and if the problem still persists, he will do a minor outpatient surgery where he cuts open the base of the thumb & makes a small snip to loosen the tendon. Hope this shot works!!
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lindajbar - just take a few deep breaths, pray. I have been on it for 5 months now with minimal SE and I am usally the kind of person who gets hit with all the SE. Taking it at night has helped so much. Same as xgolfer, hoping that you have good results.
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Dear ladies, I'm so happy to find this site!
I'm on Femara for 5 years. I found it the heaviest therapy of all before because of this long duration. It's my eleventh mounts, I started Femara in April 2010. The first two months I felt nothing special, than I got terrible knee join pain, but my ONC. Was satisfied and said "its works". I was taking ibuprofen for six weeks, then I took Vitamin D3, for a while it was better, later I also have so much bone and muscle pain, stiffness, depression too. Now I'm taking my pill before sleeping. It's better! As painkiller I take ibuprofen and not to destroy my digestive tract a pill of 30% tramadol with 70% paracetamol.
I see we all have the same SE's that cherries mi up.
Joint pain from taking an aromatase inhibitor can be troubling. But a 2008 British study suggests that women who experienced joint pain while taking hormonal therapy medicine were less likely to have the breast cancer come back (recur). Knowing that this side effect might indicate a reduced risk of the cancer coming back may help some people stick with treatment despite the side effects
Best wishes to all! Usha
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Thank you all for answering. I just found this site, and I am so glad I did. I don't have friends going through this with me and sometimes feel alone. Try to make good decisions with Oncologist, but still scary. I will start Monday on the Femara, and take it at night. Keeping my fingers crossed for good results. God bless all of you.
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I just got my scrip filled with the coupon and it took my copay down to 10.00 - before the coupon it was 176.00 because I took it to a local pharmacy. My insurance makes an incentive to do this type of prescription by mail BUT the mail order program wont honor the coupon- so I will take it locally until it expires or I use up the allotted amount and then convert to mail order which costs me 50.00/month requiring three months per order (so 150.00 total).
Kristy
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Thanks sincerely for all the replies. After extensive reading (amateur, non-medical background) of websites and also medical texts I have concluded that taking Femara is just not worth it considering the side effects and the relatively minimal advantages that taking the drug offers. See, for example: http://www.askapatient.com/viewrating.asp?drug=20726&name=FEMARA
Susan Love's material would also suggest that we should seriously consider the relative advantage of taking Femara in light of the side effects.
See the following relating to the actual advantage of taking Femara: http://findarticles.com/p/articles/mi_qa4070/is_200403/ai_n9396921/
Does anyone have a link to other trials that show that Femara gives an advantage:
4cm tumor, lumpectomy, HER2+, PR+, ER+, 7 lypmh nodes removed, no metastatis, I've had chemo (TCH), Herceptin for a year and now undergoing radiation therapy.
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My Onc told me that I will have Femara, but yesterday when I brought it up with him, he said that Aromasin is now the drug they suggest because of the high cost of Femara.
I had a very hard time to make a decision if I wanted to take Femara or not. It sounds good with the 50 % benefit, but in reality it's more like 10 % benefits (for me)
Now when I read about Aromasin and realize that this one has even more SE than Femara, (i.e Hair-loss) I don't know what to do.
I think QOL is very important and I don't know if I will risk that.....
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Femara will be available in generic this summer.
If you live in the USA you can print the coupon and get it for $10 a month or a total of $800 off the cost which ever comes first.
I personally think the side effects are worth it for me. My main complaint is knee pain, trigger finger and a few hot flashes. Of course my NP said that knee pain and trigger finger were not side effects of the drug. hahaha We all know that is not so. Yeah my weight may not be helping it but to many on here have that same side effect.
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My onc said femara would be generic in may.
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I read online that the generic brand will be available at the earliest in July. My onc said that even so will the cost be pretty high, he estimated it to be about $100 a month in copay if the insurance company cover it.
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I don't know about the copay. My copay now for Femara is only $30 and then I use the coupon from the Femara web site and get it for $10.
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I need to ask my onc to clarify for me why he will change me from Femara to Aromasin....
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My onc also told me that femara will be generic this summer. BTW, I have almost no SE's from Femara. My onc told me I should post this news to encourage others. She said it was all because of my positive attitude. Don't know about that.
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The only SE I have is a little fatigue but by taking the pill at night that is not bad at all. I changes from Arimidex to Femara in October partly because of the debilitating SeE of Arimidex and partly because of a small progression which has now been resolved. Good luck to you girls still making the descision whether to take or not to take.
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youlooklikeyouneedabeergirl-----Love your screen name!
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ainemw: The important thing is that you are making a well researched,informed decision. I knew about the absolute percentage info, as well as all of the potential side effects, before I agreed to take Femara. My thinking is that I will throw everything at this disease, not leaving anything to chance. But I also told my oncologist that I reserve the right to switch drugs if the side effects become too severe.
As with chemo, I've had every side effect on the list. It's just how my body reacts to this stuff. Some days I'm feeling like I'm hanging on by my fingernails, other days I feel just fine. It's been 20 months, so I've got a long stretch ahead.
Femara may only help 2% of the women who take it. But if you're one of those 2%, it could make all the difference in the world.
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Texas357,
from where did you get the info about that Femara may help only 2 % ?
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Actually my comments were a little skewed. The 2% is the absolute difference in the study comparing the women taking Femara vs. the women using Tamoxifen. It was 2% fewer women who had a recurrence using Femara.
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I am switching from tamoxifen to femara as soon as I pick it up from the drugstore with much hesitation. I have had a real bad time with the night sweaats and hot flashes. My onc gave me a month between and I am not sure that was a good idea because now I have very few flashes but from what I am reading from you guys I will be back in hell soon.. My bones are already all to pieces so I don't know where that will go and my hair is thin so I am hoping for the best but expecting the worse. Thanks
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Stefie, my hot flashes are sporadic. They were really bad to start with, but then tapered off dramatically. I noticed that if I indulge in a cocktail, I can almost guarantee having a personal summer a little later.
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Stefie taking it at night has sure helped me, my SE have dimished some
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Thanks all and Texas357, I've decided not to take it. Really, how can taking Femara be justified considering the side effects and that it BARELY improves chances of recurrence? Why are oncologists prescribing this drug? If anyone out there can convince me otherwise after reading the following links, I'd be grateful to hear from you:http://findarticles.com/p/articles/mi_qa4070/is_200403/ai_n9396921/http://www.dslrf.org/breastcancer/content.asp?CATID=0&L2=3&L3=5&L4=0&PID=&sid=130&cid=1393http://www.askapatient.com/viewrating.asp?drug=20726&name=FEMARA
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ainemw -
I felt the same way. I was very set on not taking Femara, especially after Tamoxifen caused me to develop a new disease. Then my good friend who I met in chemo was diagnosed Stage 4, mets to liver. We have only been out of chemo 18 months. I started popping that little yellow pill every night. I decided that if it was horrible I would stop, but I had to try. It has been fine. Actually, I feel great! My hip hurts, but I also run about 30 miles a week.
Take Care!
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Been on it only 1 week. Terrible headache and nausea which started yesterday. I have high blood pressure and take medication. Just took my bp, 132/94. Concerned that the femara is causing this. Going t call oncologist in morning. Just not sure what to do?
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A key question for oncologists is - how does femara improve my chances. Look for facts, figures and references to the publications that have printed the facts and figures.
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I went for my regular 6 month check up yesterday and we have decided I will take a 2 week vaca from Femara. Over the last few months I have suffered extreme fatigue, by 10:30am I am utterly exhausted, my arms and head literally are falling. It's like a wave passes over me and my hands literally fall from the keyboard at work and my head just doesn't want to function anymore, that lasts for about 1 hour then I am ok again for a few hours. It's not so bad if I am real busy but if not then it's chaos. Luckily I have an understanding boss otherwise I don't know what I would do. The flashes and night sweats have also amped up significantly recently which was a surprise as they seemed to have got under control for a while. I am having problems with my left knee and upper thigh also so I am hoping the vacation will take care of all that stuff. I also found out that my recent bone density scan shows a drop in my lower back also, my hip remained at the same level as last year so at least no further decrease there. The nurse practitioner I saw yesterday will talk to the onc about these changes and get back to me about what they want to do once they have had their discussion. I think I am about done with the Femara now but then ..... well you know what it's like.
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Gaynor1 are you taking Femara in the AM or before bed? Because what you are describing is what I had when I took it in the morning; almost all of it went away when I started taking it bedtime!
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Before you all decide to stop taking drugs, go to cancermath.net and use the breast cancer tools to show you the difference in survival rates between drugs, ovarian ablation, etc. I chose to be put into chemical menopause after being on tamox for 5 months. I am taking femara and can handle it better than tamox. You are going to get hot flashes anyway, so deal with it---it's normal.An acupuncture appt. every 2 weeks will help hot flashes---I read it in an oncology journal, I've done it, and it helps.
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Well, where are you guys? I checked out my own stats on cancermath.net and i have the same results on just lupron OR lupron and femara, which is making my hips come apart! Do this for yourselves, please! Check it out before deciding either way. Know your risks and outcomes. xoxoxox
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Hi Crazykitties.
I checked it out and it didn't tell me any different than I already know. We all have our choices to make, I'm not sure that I want to live to a ripe old age but be bent double with osteoporosis in extreme pain. I haven't made any decisions yet, I will talk to my oncologist again and see what the options are. My Mom has "bone issues" without having taken Femara and has restrictions on the activities she can participate in, most of which she enjoyed previously and misses out on now. I enjoy being active and I do not want to face a world with all the restrictions osteoporosis can impose. You are right in suggesting we should all know our risks and possible outcomes, but like I said these are "possible outcomes", nothing in life is guaranteed - we, of all people, know that only too well. Thanks for suggesting the website though.
Gaynor
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As I've mentioned before, I had to reduce my dosage to 1/2 a pill due to severe joint pain. I've been on 1/2 a pill for a year now. Well, 6 months ago I decided to have my Vit D level checked and it was 31 (right on the low end of "normal" which they say is 30-100). Anyway, I started taking 5000 iu a day. 3 months later, my level was 42, and shortly after that, ALL my joint pain is gone. It is unbelieveable to me, and the only thing that is different is I started taking Vit D. Now, I have to decide if I want to start taking a whole pill again. I feel totally normal again and it's wonderful. Anxious to see where my Vit D level is next week when I do labwork again. Trying to get it up to 70-80.
Joni
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Joni: I found your comments about Vitamin D levels extremely interesting. My diagnosis is so similar to yours, and the Femara has been difficult. I am going to try 5000 iu daily of the "D" & see if it makes any difference in the way I feel. I do take the Femara at night which has helped some with fatigue and the joints, but to feel completely "normal" again would be wonderful!!
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Bev....I didn't want to come across like some sort of fanatic, or that I have some sort of new breakthrough...lol. It's just my experience. I know you aren't supposed to take 5000 units forever. Just till your level is where you want it. I don't really know what else to credit the improvement to, if not Vit. D. I really struggled with the idea of lowering my femara dose, and my onc didn't really like it, but he admitted quality of life was very important. I felt severely arthritic...couldn't bend,, squat,etc. I'd be real interested to hear if anyone else does this and gets improvement. Have you had your Vit D level tested? I wasn't getting it tested, then after reading so much about it on these boards, I just asked my onc if he could add it to my 3 month lab visits. I don't suppose he would have ever done it on his own. So when I saw my level was so low, he said, "It wouldn't hurt to take 500-1000iu daily", but I had read on these boards about women taking 5000 iu's to get their levels up, so decided to try it. It has been wonderful to move freely again!!
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Bev- Make sure its Vit D3.
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Hi Ladies,
I have been taking 5000 iu's of D3 daily for well over a year and my level has not gone over 60. My onc. always trys to scare me and tells me not to take so much Vit D, but I make her test me every time I see her and my levels are great. I am feeling really good on Femara.
Take care, -
Hey, thanks for the insight on vitamin D! I have been slacking off. My left hip just did some crazy bad mojo 2 days ago, could barely walk, and this shocked me. I will take more D, thanks for the info. My post about cancermath.net was meant to be a loving, helping post. I hope I didn't insult anyone. I told my onc about it and he played dumb. I agree, that I would rather have some great years now, since none of us know the future. Cancermath.net helped me realize that I needed to go into menopause, that I would have a better result. That's all. Love to you all, and peace. xoxoxxo
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nanna, my mom takes cymbalta for neuropathy and other pains. She had taken neurontin and lyrica but they were terrible for her mentation. the cymbalta seems to be working great. she is 85 and back to herself again. started on a low dose and increased gradually.
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just remember you can go to femara.com and get it for $10.00!!!!
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emegram, i have had cortisone injections in hands for trigger fingers. they worked okay but nothing really worked until i had surgery. i did not have any trigger problems before femara (have been on it now going on 7 years). have had surgery on 8 of 10 fingers, one of which is my little finger on my left hand, which is triggering now, but not enough to do anything about. before surgery i was unable to do much of anything without pain. i am a nurse and my hands are definitely a necessity when it comes to drawing up meds. surgery is not bad. i convinced my ortho to do both hands at the same time because i was already off for some recon surgery and had time to recup without extra time off from work. it worked beautifully. good luck!
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youlooklikeyouneedabeergirl.........i totally agree with your onc.......i am 6 years NED, still on femara, had 14/32 nodes positive.........and truly believe that my faith and attitude play a large part in my survival.......still on femara due to the large number of node involvement........have suffered all the se's everyone here talks about but they go away sooner than later.....feet hurt in the am and walk like an "old woman" for just a few minutes, then up and running as usual....knee pain....on an on........but they do subside and "i survive"!!!!!! best of luck to everyone.
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jacee, it find it odd that your onc wasn't checking your vitamin d.....since studies came out several years ago regarding the link with breast cancer my onc immediately started including it in my labwork. just an interesting thing to note that docs are so different.
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so you just made me want to take my morning dose of Vitamin D. I am suppose to take it twice a day but I tend to forget the am dose. I am going to start taking it at night if I forget it. My Vitamin D level was 26 in Feb. I am currently taking 4800 IUD's. Maybe when I run out of the 2000IUD's I will buy the 5000IUD's. Thanks for the push!
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Caren- I, too thought it was odd.
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And I had to ask mine to run a Vit D level!
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Hi All, I went to cancermath.com - thanks Crazykitties, and I can't use it as I don't know what to select under chemotheraphy type - I had TCH (taxotere, carboplatin, herceptin) - it doesn't seem to be listed. Can anyone help
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A bone density scan is really important before you consider taking femara...
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I just wanted to mention that I was told to take the Vit D3 and fish oil together for best results.
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Jaycee: My onc has never mentioned checking my Vit D level. But I'm certainly going to ask her when I go for my next 3-month check.
Nursecal: Thanks for relating your experiences with trigger fingers. My first injection of cortisone has helped some, but not entirely. The clicking in thumb joint comes and goes. Orthopedic hand doc said he would try 3 injections before doing surgery. I asked him if he was familiar with Femara & joint problems, and he said he didn't know anything about this drug. Go figure!
Thanks for your comments, ladies.
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My family doctor was the one who mentioned increasing Vit D3 to 2000 iu per day, I have never had my D level checked either by doc or onc, not sure why as they have never mentioned it. I take 1000 in the am then 500 with supper and 500 before bed. I have tried taking Femara in the am and also in the pm but neither way has made a difference to me. I will wait and see if increasing the vit D3 makes a difference to my aches and pains, so far no change but it's only been a few weeks. Maybe when I get my recent blood test results back I will be able to figure out if the fatigue is due to Femara or something else, funnily enough the onc nurse said she had not heard of Femara causing fatigue, I felt like telling her she should check out this board as it could really educate her, but I didn't.
Wishing everyone a great weekend, Gaynor
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What's the point?
I went to cancermatch and it seems like AI's give you more benefits the longer the time past, but not so much during the first 5-6 years.
I'm starting to question myself again if it's worth it, if I'm going to feel like I'm 90 and not be able to enjoy my life the next few years, what's the point?
I'm very strong HER2 and I'm afraid because of that I won't be here to take advantage of the benefits from Femara.
It sounds so good when the Onc tells you it reduce your recurrence with 50 %, when in reality it's 10 % (for me)
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My Onc. said no to vitamin D testing as well as estrogen testing. So yesterday I saw my GP and asked him for the tests as well as the other blood work he does. He was fine with it. Will let you all know how my levels are. I've been on Femara 6 months so would espect my estrogen to be quite low.
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I just turned 50, have a 9 year old daughter, and I don't like feeling like a 90 year old right now. It sucks sometimes. I may get off femara---I was doing just fine on lupron shots alone, but my onc wants the safety net of an AI.
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I hear you all on feeling 90 yrs old. Blahhhhhh! I asked my onc if I reeeeally needed the femara since I'm only "weakly" estrogen positive, and she said, "Well, we just don't know which part of a tumor cell turns the growth back on." That was good enough for me--off to take my femara. . .
In all honesty, though, I do still question it since it is so hard to feel so yucky day after day. I keep hearing that the HER2 positivity trumps the estrogen positivity, but I keep truckin' along because I'm scared not to. Sometimes, when I feel like I've about had it, I take a half-pill for a week or so. Probably doesn't change much in that short time, but pyschologically it makes me feel better.
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Does anyone else take monthly treatments of Zometa? When I was diagnosed for the second time back in June of 2009 I started Femara and monthly injections of Zometa. In June of 2010 I was cut down to Zometa every three months. I have noticed more joint pain and most is in the hip area. When I had my three month checkup and treatment of Zometa I asked my oncologist if taking Zometa every month would help with the joint pain since the first year I did not have the pain but started getting it when I was cut down to once every 3 months. He said he would be willing to give me Zometa monthly for the next 3 months to see if it makes a difference. I do know that when I walk 3 or more miles a day and exercise it usually helps but not always. I am going to take the treatments for the next 3 months and see if it helps but just wondered if anyone else is taking it and if they have noticed any difference.
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Yes, I am sure you can go to a category that allows you to list your chemo. I am checking it out right now for you, and will be back.
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If you go to cancermath.net you need to check the treatment outcome link, fill out everything correctly; if you don't know the lingo for your chemo, find it out. This calculator is really good, and it should help you. I use it to argue with my onc and my nurse.
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kira1234....it is normal testing now for ob/gyn to test vit D levels.......these posts are really stressing me out because it is a standard practice now....i don't understand!!!!!
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My oncologist tests it, my primary Dr. now tests it, and my Gyn. also tests my Vitamin D level. It was never tested before my cancer DX.
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I really can't say why my Onc. isn't testing my vitamin D levels I only know they aren't. When I asked back in Jan. I was told we don't test for it just up you D vitamins to 2 times a day. I go to an Onc. connected with Moffit in Tampa Fl.
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I just asked my Onc to add Vit D testing to my 3 month lab tests and he did. So far insurance has paid it. None of my Dr's ever recommended it. You don't want to stay on 5000 iu indefinitely, only till your Vit D level reaches optimal levels. So I would think monitoring is a must.
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All I can say is that you gals are lucky to have people willing to test your blood levels of various things. My oncologist refuses to check Vitamin D (says it's a fad) and doesn't even believe in checking cholesterol levels (which I insisted on after a year on Femara). He wouldn't test estrogen levels before/after I started Femara either. Doesn't believe diet or exercise influence outcome.
If I sound frustrated, it's because I am. But I'm not sure my insurance company would cover "between" visits to oncologists just to interview them to see if I like them better.
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Texas357, I understand how you feel. Do you have a GP? In my case my GP has been willing to run the tests my Onc. seems to feel I don't need. He is running an estrogen test and a vitamin D level for me.
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I have been taking Femara now for four months and have gotten continuously stiffer and stiffer especially over the past couple months. Unfortuantely, our house is on 4 levels so plenty of stairs to navigate. I thought that these side effects would gradually lessen over time, but it seems to be getting worse. Is it time to ask my ONC about switching to Arimidex to see if I tolerate that better? Am I getting too impatient.
My ONC has no problem testing my Vit D level. I had to ask the first time, but he actually thanked me for the request. Then when my level dropped from 28 down to 14, he immediately put me on prescription level, 50,000/week for 8 weeks which brought it up to 53. Now will get it checked every 3 months and hope to keep it up there.
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My vitamin d level is at 32, lowest should be 30. I am upping my d to 5,000 iu's now.
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Had to stop the fermara, blood pressure just too high. Will have to talk to Oncologist about where to go from here. Anyone out there had a spike in blood pressure with femara? Had ovaries out in Feb, just starting to get horrible migraine like headaches. Has anyone experienced this? Thought headaches were related to blood pressure but the blood pressure is down now that I stopped the femara, and headaches are still horrible. Had a catscan, nothing showed. I am walking around in a migraine fog, help!
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texas, my onc doesn't believe in the testing of vit D or estrogen either, but as Kira said, my GP was much more willing to do it when I asked. I don't know why the differences of opinions....... If you can't get any of your docs to order the tests, maybe you might want to go to an outside lab. I don't think the bloodwork is too expensive.
One more side note-- my first onc (she just retired in Dec) said the problem with vitamin D is that it might be more of the chicken and egg theory. That's why I asked my GP to test it. I just told her that my onc told me to ask her for all the general tests.
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I don't have a GP (never needed one). I'm a firm believer in integrative medicine, but finding a GP around here who agrees with that philosophy has been impossible. So far, I can only find chiropractors and I don't need/want that.
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I get migraines from Lupron. I have heard that a beta blocker helps migraines, I am trying that next. How about weight gain???I am starting to get bigger on this crap.
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Here's what has really turned things around for me since starting Femara in November: in addition to my multi-vitamin and my liquid calcium/magnesium, I take 5000 IUs of D3, 5000 mg of curcumin, and a positively lovely herbal supplement called Inflamma-less by Irwin Naturals. If I skip *any* of these for even a couple of days, I start locking up and feeling OLD and tired and depressed. When I take them all, I have energy and feel pretty awesome!
My oncologist and my naturopath are both completely behind me taking the 5000 IUs of D3 per day. A little over a year ago, my D levels tested at 8. They are now at 56. My ND wants them at 70.
I felt a lot better after just one day of trying Inflamma-less. Now, after three months, I can't imagine going without it. I buy it through Amazon but I have seen it at Natural Grocers and Whole Foods. Curcumin alleviates inflammation, arthritis, and achy joints and is also a cancer fighter. I figure that one's a win-win.
Femara is not fun, but I am definitely sticking with it after seeing my PET scans from last week! They showed significant reduction in all my mets over the past four months, with some of my tumor sites now completely clear!
I'll put up with all the side effects as long as one of them is LIFE!
~Lulubee
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Great post Lulubee!! That will encourage many of us.
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Hi Jacee!
I'm taking many natural supplements but have decided that maybe, I'll give Femara a chance. I was on Tamoxifen for 2 months when I got a blood clot and the Dr suggested I stop taking it for a couple of months. When he found out I never started taking it again, he prescribed Femara. I haven't filled the script yet. Maybe like Lulubee, if I take other supplements, I won't have to suffer with terrible SE's. I'm hoping anyway. I feel for all you ladies with SE's and I guess I'll be back to tell you about mine soon.
Terri
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Terri,
Oh great to hear from you again!! Sorry about the blood clot. There is a coupon on the Femara website to get the prescription for $10 a month. Don't know if it's good in Canada or not. I've used it for a year or so. Otherwise would cost me $70 with insurance, or $525 without!!!
Don't know how much of the thread you've read, but I had to cut back to 1/2 a tablet about 8 months ago, due to s/e's. It helped greatly, and now all the joint pain is gone. ( I attribute that to upping my Vit D to 5000iu's).
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oops, hit enter by mistake.
Anyway, I'm thinking of trying a whole pill again soon and see what happens. Hope all is well with you.
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HI,
I have had so terrible SEs that I used - for the last 10 days - to take Femara every other day (without asking my ONC) it's much better, so I'll be back on every day.
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Hi Joni,
I've been reading this thread on and off for a while...lurking I guess as they call it. Every time I read about SE's I get scared off. I'm sorry to hear that your SE's were so bad you had to cut back but if it's OK with your ONC then maybe 1/2 is all we need to get by. I don't subscribe to a one size fits all regime. I didn't think that taking 20mg of Tamoxifen whether you're 100 lbs or 220 lbs or the fact that they give the same dose whether you have tons of estrogen or not makes any sense, but that's just me. I don't want to sound or come off like I know more than any of you on here. I've gone the natural route for many months now and I guess I'm starting to feel a bit unsure if I'm doing the right thing. I will fill my script for Femara and take it from there - wish me luck!
Terri
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Terri - I was so scared of Femara, but it has been pretty good (for me). I have been on it for a little over three months, and the few side effects I had are going away.
Take care!
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Just thought i would ask which of the med femara or arimidex .Is the best to take help keep from recurrance
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My feet are nearly impossible to walk on first thing in the am, and my hips feel like they are coming out of their sockets. Oh well....SE'S suck. What other options do we have?
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CrazyKitties.... ditto here. Four and half months for me and I have such stiff joints, especially hips and knees. I just ordered some Inflamma-less that lulubee suggested. Hope it helps.
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HI, cdean1971
II wish you to stay withouth SE's! Some does!
It's my eleventh mounts, I started Femara in April 2010. The first two months I felt nothing special, later I got terrible knee, join, finger pain, But I'm coping with, taking this as a part of healing process-
Best wishes!
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nana, Arimidex and Femara work the same way they are just put together differently. I started off on Arimidex but found the side effects too much to take and I had a small progression so I was changed to Femara and have found I have almost no side effects at all. Please don't be put off by my small progression as I am stage IV not stage I. Either should do just fine for you.
Love n hugs. Chrissyb
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Texas357...where are you? I have a great Internist in Houston as my primary. Now that I am going on 7 years my onc requires that I get most things through my primary now. I can go to any doctor without referrrals.
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lulubee....sounds great. Is your onc onboard with the other things as well? I have heard various opinions about the curcumin. Have never heard of the other. It my onc says ok I will definitely try it for the energy part. Thanks
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I have to say the more I move the less I hurt. Exercise is a must. My feet also feel like eggs that will crack if I walk but this subsides as soon as I walk around. It also comes for a little while and then when I first walk it is gone for a time. Never know what to expect. But, I have been on Femara for going on 7 years and will stick with it until my onc says no more. I just believe it is why I am still as healthy as I am.
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Why do some have take femara longer than 5 yrs. I thought 5yrs was the magic number
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nursecal ....seven years? I don't blame you for sticking with it though. I hope that I am still here in 7 years! But after just 4.5 months of Femara, my lower body joints have gotten so darn stiff. I called my ONC's office this week and his PA called me back to discuss options. Decided to stick it out on Femara until I see my ONC again next May. Guess I need to start checking out the Arimidex thread to see if anybody has had luck switching to Arimidex to ease the joint pain and stiffness. MY PA mentioned that alot of women do better on Aromasin as it has a small amount of a steroid in it.
I am better if I keep moving but not always possible. It is discouraging since I am used to being a very active, athletic person. Just whining today, sorry.
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nana, 5 years is the usual....my onc is keeping me on due to the number of nodes i had involved...each has their own ideas.
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Another SE of Femara is Meibomianitis which is a fancy name for clogged tear ducts that become infected. I looked this up and a cause was hormonal changes. Warm compresses and lubricating drops for 4 weeks should take care of this but if not antibiotics will be prescribed. My major symptom was waking up with a red eye. I just thought I would pass on this information to other Femara users.
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Wow, thank you for that dkerler, I have been wondering why I keep waking up with what I thought was "pink eye" so often but without the gritty irritation, now I realize perhaps it is not. My tear ducts do look kind of swollen/blocked when this happens. I have been using antibiotic polysporin eye drops to treat it and they seem to work well, but just when it seems to have cleared up back it is again. These boards are a wonderful source of information and sharing!
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I'm glad I could help. It's the least I can do after all the information I've gotten from these boards. It took me three trips to the eye doctor before we figured it out.
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Does anyone know when femara going generic i heard last of march then also last of may?
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I already checked, and was told no, no generic yet, just in India............not sure if that is right, but that is what I was told......you can buy it online from India, but I'm not willing to take that chance......
Ok, now my gripe............clogged tear ducts..........what the hell else can happen from tis friggin drug...........I am suppose to start this shit after i finish Rads, but the more I read the more I think..........the hell with it...........I am so fed up with the whole BC thing..........My surgery went well, my pathology was very good, margins ok too, but they still want to do Rads, even though I was told I can go without because of a small margin 1.2 in one area and that is very tiny. 2mm everywhere else. .............I'm not being ungrateful, and I'm happy with what result I got so far, but this bullshi-, of dealing with the SE of the Al,s is getting to me...............5 years of that crap, what about quality of life...............I've had it.......................
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Hi Duckyb1,
I felt the same way, but Femara has been fine for me. I have been on it 4 months, and sometimes I feel stiff in the morning, but only when I first get out of bed. When I first started Femara, I told my onc. that I did not want to take it and feel like crap. She understood, and said it was my decision. She asked me to give it a try for 6 months and then make my decsion based on my own body not what I read. I agreed, and so far so good. We are all different, and I know lots of people have terrible side effects, but lots don't too.
Good luck with your decision and take care!
-Crystal
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cdean1971.thanks for our input......I'm sure I'm gonna do it, just not happy about it, but maybe I will be one of the lucky ones who have few SE.
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Woke up this morning and my right bottom cheek and upper leg feel weird, kinda cold and numb. I can walk fine but the sensation is definitely not normal, feels like when you have been kneeling down for too long and your legs go dead. Anyone else experience this?
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Answering the question regarding help with payment of Femara. Went through the same situation. I exhausted the Femara coupon. I then called Novartis and was denied by their program because of income exceeding a certain amount. However, they did refer me to another company which I now pay $30.00 as a co-pay. My premium for insurance is $492. and cost of Femara as a co-pay is $261.00 and my pharmacy bills do not go towards deductible. Call Novartis and they will refer you to at least 3 corporations who might be able to help you.
Wishing you much health and luck.
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Have you thought about changing to arimedex. It is generic now. I am going change in july when i finish femara >I can get for $10.00 a month. If femara is not generic by then my onc said it is suppose to go generic at the end of may. Just something to consider.
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Gaynort............Don't know how old you are, but be careful what your feeling is something else and not related to Femara, although I hear the SE can be nasty.............Just make sure it isn't a mini-stroke.......don't want to scare you , but just giving you a heads up.
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AFter a yeaer, no major or bothersome SE's from Femara; love it and plan to stay on it as long as my body cooperates. Note that they seem to be finding that some women may have a genetic trait that predisposes to arthritis when taking AI's so that may be why it hits some so much harder than others....Good luck to everybody.
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Ciastypo
Thanks for that info. I had arthritis before BC.
Grrr. 5 months on Femara and my knuckles have started hurting. My right hand has trigger finger bad in the middle finger and the left middle finger is starting. Both knees still kill when I stand up or I have to bend them. The right is the worse it even hurts if I am sitting up with outstretched legs on the couch.
I don't go back to the Dr. until June. I will keep on taking it and saying ouch a lot.
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Yuk, gonna go on this crap after Rads which start Monday, and I already have bone loss (ostopenia), and some arthritis......................but Tamox is not good either since I have had phlebitis, and a mild heart attack........Thank ;you estrogen
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GRRRR.... I started mine a week ago. I think it's the "axe approach", but hey, I NEVER want to go through this again!!!!
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I read today that Femara will be available in US as a generic beginnning in mid-June....by Mylan...
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I've been on F'in Femara for 2years-argggggg, body ACHES are the worst! I am only 55, not 95, bit i feel it!
And weight gain. I start tamoxifen tonight, hoping for less SEs. -
Does tamoxifen tend to have the weight gain, too?
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Finished rads yesterday and took my first femara this morning. So far so good.
Hope to go the distance with minimal side effects, but 5 years feels like such a long time. Sigh. -
Good luck with it! I'll be joining you in May.
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Teal3Pink1-if you have trouble fairly quickly - especially with fatigue-change to taking it at night--I switched after taking it for 2.5 months in the AM & was having to go home @ lunch & nap, etc. Switched to bedtime & I am soooooooooooo much better-have been taking since Nov '09.
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I start on this crap right after Rads, and I really don't want to take it, but have to be careful what I take since I had a heart attack..............I really don't want to do this, but I'm not sure if not doing it will hurt me, after going through all this shit I went through.........The last thing I need is more aches and pains, with Ostopenia I have my share now.....they did a dexa scan this morning. I guess that is to see if they can make my bones more like swiss cheese with this shi--ing hormone........oh well.
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I developed a rash from, I think, Anastrozole. I'm off it for two weeks to see if the rash goes away. If it does go away, then she wants me to start Femara. I'm hoping I won't get all the SEs I've been reading about. Glad to read that a few people have tolerated it well. I'm kind of afraid to start something new. I took Tamoxifan for a few months, I just had to take a Clariton with it, because it gave me watery eyes and runny nose, like I had a bad cold. ha! I didn't mind because the Clariton really helped. But the doc said I should try something else.
My big concern is anxziety. I already take meds for that and have things balanced. I don't want to rock that boat; It's hard to get steady again. I noticed some anxiety with Anastrozole, so I hope Femara isn't as bad.
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yeah! femara is generic i get 3 months for $10.00
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Nanna: That's great news! Where did you find/get the generic? I thought it wasn't coming out until next month.
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I picked up a refill last week and generic was available- CVS in Tyler, Texas
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I am thinking it must be available here too because when I handed her my prescription today, she said wait a minute so I can make sure we still have the brand name. I guess they make more money off the name brand with that coupon from Femara because my generic copay is the same and my prescription said it was okay.
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It's been a week and so far so good. Was pretty tired over the weekend, but not sure if it's the Femara, still recovering from rads, or waking up at 4 am for the wedding on Friday!
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Oh joy. I've read of women having rotator cuff injuries due to Femara,and I think I joined them. I haven't done a darn bit of upper body exercise since last Thursday evening, and this morning I woke up with tremendous shoulder pain that I strongly suspect is rotator cuff.
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My mail order pharmacy just sent me my next 90-day refill for Femara and it is now generic. They still charged me $80 for the 90 day supply. The $10 deal with the Femara coupon is still the better deal.
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My mail order pharmacy (Medco) just sent me my next 90 day refill for Femara and it's now generic (pink tablets manufactured by Mylan). My co-pay was $247.49! For GENERIC!
Whoa! What a rip off....
Kessala
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Kessala.... my mail order pharmacy is also MEDCO. They charged me $80 for 90 day supply of generic. I'd check with them.
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Thanks for the tip Joan. I just got off the phone with a customer service person at Medco.
I explained the differences in our pricing for 90 days worth of generic Femara. I was told Medco's pricing isn't based on the fact you and I take identical medications but rather it's based on our individual medication insurance coverage.
In other words your insurance allows you to make a much smaller co-pay while my insurance does not.
When you mentioned you also used Medco the first thing I thought was I'll bet the pricing is based on our insurance plans. Sure enough.
Kessala
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Called my mail order pharmacy, Prescription Solutions and found out that the generic would be the same price as Femara, $118 for 3 months and because I have AARP Supplement insurance, I can't use the Femara coupon, Once I reach the Medicaire gap, the 3 months Femara will be $1200 while the Lorazepan would be $1400 because it's in their higher tier! Go figure!
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HI girls, it's a while since I posted on here but I just thought I'd drop in and see how everyone is doing. I've been on Femara for about eight months now and still no SE's that I can idenify so I'm assuming none at all. I just hope that it is actually working but I'm feeling fine so I guess I can presume that it is. I read what you girls pay for your medication and I'm appalled.....full price in Australia is $175 but it is covered by the Goverment PBS so we pay $33.50 and if you are on a Disability Pension like am, the cost is $5.40 per month. I know this because in Aus. the pharmacy by law has to print the full cost on the box.
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This generic Femara pricing is NUTS!
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Just a thought... but was just thinking that my local storefront pharmacy (OSCO) agrees to match Walmart pricing on any generic prescription. That makes one of my drugs only $4 when my co-pay would be $10. So.... maybe it wouldn't hurt to see what they charge for it at WallyWorld.
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Interesting! I didn't realize Femara now has a generic. I haven't had to fill mine for a while.
Chrissy, it's great that you haven't noticed SEs yet! Hope it continues, and it's working. Enjoy!
Still planning that trip to the U.S.? It's so much fun to plan a trip. As I said before, you're welcome to swing by Colorado if it works for you!
Lane
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i called medco back and this time they told me the generic femara was copay 28.00 but cost toward my part d was 1246.00 and the femara was 1458.00 with copay of 90.00. they call this generic. a few days ago i called they said it was 10.00 copay 120.00 toward my part d some one dont know what they are doing there. i then talked to one of there pharmaist.I can get generic arimidex for 90 days 28.00 and 20.00 toward my part d. i ask what was the difference from femara and arimidex he said they had same effects on breast cancer and i said 1000.00 in pay well i am changing to arimidex asap my onc said that was fine i dont see how they can have such a price difference in different drug co.
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Armed and ready! Picked up my first Femara prescription which I'll start this evening. I've already begun taking my multi-vitamin, Calcium, vitamin D 1000 mg, glucosamine condroitin, and vitamin C regimen to counteract the side effects. Am I missing anything?
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Thanks for the reminder of glucosamine condroitin! Good luck Ginger!
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gingerstix: sounds like you are ready to me.
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Gingerstx: First one down the hatch! How did it go?
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Gingerstx, hope all goes well for you with the Femara!
Lane, I would love to swing by Colorado as you put it.......lol....I just need to speak to my travel planner to see if it's a go. I'll keep you informed.
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Thanks for the support! I woke up with a headache but don't know if that's due to the Femara or the stress of getting reorganized now that I'm back home after more than 2 months. At my age (almost 68) you never know! I'll see how it goes.
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Hopefully you will have no side effects. I was 70 when I began Femara 8 months ago and although I feel my age since radiation and Femara I have to honestyly say that I don't think Femara has added any significant problems. I began it with arthritis problems with my bqck which I still have. I've found that if I can immediately begin my daily activities I do not notice minor discomforts. I'd rather suffer from Femara than breast cancer. Good luck !
Jane
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Happy Mother's Day all! Glad to report that I woke up headache-free, so my day has been great!
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Just did my mailing refill and confirmed that the Femara refill will be the generic. My copay for the refill will be $20.00 for the three months. I am so glad.
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Yup generic Femara is here. I picked up my prescription tonight and it was generic - there was a note attached to tell "the patient" that generic was substituted and in reality it cost me more than I have been paying as it was $15 and with the discount coupon that I have on file I was paying $10 for Femara but this is good news for those who don't have coverage at least now there is a low cost alternate.
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I called my pharmacy and they told me that the generic femara still cost $1245.00 but my copay is 28. the original cost $1455.00.but i will still fall in doughnut hole in sept. the generic is still to expensive
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Nana, That doesn't sound right. I'll bet the person you talked to didn't understand what you were saying. The price you were quoted I think is for the brand name Femara not the generic. I think the generic is around $465 without any insurance for 30 pills, granted that is still not cheap. On my plan the generic is tier 1 so it is the cheapest co-pay for me. Of course I could be totally wrong about this. I would question your pharmacy again. I hope it works out for you.
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gee none of that sounds right to me. A 30 day supply of Femara was $465 here. My copay was $30 but I was using the Femara coupon and getting it for $10. I don't plan on switching to generic till my coupon runs out.
My newest side effect. My finger joints hurt to even touch them. ugggggggg to that little gold pill that hopefully is saving my life.
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LADIES.
Anyone here on Medicare? Wifes Medicare drug company (AARP-United Healthcare)) told us generic for Femara is not approved and the medicare drug plan recepients in the donut hole will pay $262 per month.
Does anyone know if we can use the coupon mentioned in the blogs from Novartis while she is in the donut hole or is there any OTHER possibility to cut this price down?
Wife is doing fairly well on drug- Mood changes and depression are most prevalant so some good news about the pricing would certainly be welcome.
Ladies,please dont misunderstand, My heart truly brakes when I read these stories about the patients who have horrible side effects and I say a prayer for you all and hope with time that gets better.
God bless you
JB
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jbaudit : I'm on Medicare, have the same insurance company, and was told the same thing. I'd printed the Femara coupon and then read on it that it could not be used if you have insurance, Medicare, or whatever. However, there was no mention of "if your insurance doesn't cover this" so if I were you I'd contact Novartis and find out what they say about being able to use it if you're in the gap.
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My interpretation would be that if you are using it to cover a "deductible" type thing then no. I would think if you would just use it to cover the Femara as if you had no insurance then there shouldn't be a problem.
So print the coupon and go get it filled and tell them not to use your insurance for this one. You have up to $800 and or 1 year before it is no good. If your current pharmacy gives you in problems take it to another one and don't tell them you have medicare.
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That $10 coupon expires on 6/15/2011. It covers up to $800 of your out of pocket expense, co-insurance or whatever, but "Prescription Discount Card is not valid for prescriptions for which payment may be made in whole or in part under federal or state healthcare programs, including but not limited to, Medicare or Medicaid, or for residents in MA." It seems that Generic will be the way to go after June 16th.
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It is with a sad heart and soul that I post tonight. I was cancer free for a few months!!! Which is good but I was diagnosed again last month. Same general area; just another lymph node. So technically, I have failed the femara test!!! I am having to go thru radiation treatments now (31). Have had 12 treatments and aside from having excruciating pain caused by scar tissue at the surgery site last time (cannot raise my left arm nor reach back with arm), not having any trouble. I am one tough person; but this pain was just too much for me to stand. Doctor put me on morphine and oxycodone. To any of you ladies who have had radiation, please let me know your side effects if you had any. I can really tell that I am a lot older than the first round with cancer-back in 1994. Aside from dr. appts. and chemo dates, I only missed 1 day of work.
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gauleyeagle, so sorry to hear this news. I hope that you are able to power through once again now that you have some pain relief on board. For me, radiation was so much easier than chemo. I ended up being pretty crispy by the end but my main side effect was fatigue. I am assuming that you are no longer taking Femara; "just another lymph node" is still a shock to your system I am sure. Here's to a fast recovery!
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HI gauleyeagle
I'm so sorry you being so sad. What was your DX? I'm on Femara till 04/2010 and I'm coping with all possible SE's. Thought sometimes to give up and risk my life, but after taking a stronger pain killer I'm continuing. I presume your pains are not from rads, but because of Femara. My first reaction after taking it for two months was terrible, I couldn't walk, stay, every move was torment, but after 6 weeks on ibuprofen it grows tolerable. Now you are at very effective pills, wait a little, certainly you MO will find out a way to help you!
(English isn't my native language)
Thinking of you
Usha
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Hi Ladies,
Please advise. I having been experiencing pain in my upper left arm, and in my left thigh. It's not like muscle pain, sometimes it's a dull ache and other times more severe. I have had problems with my shoulders hurting since starting on Femara 2 years ago but this is different. My arm feels heavy and the pain is kind of like those growing pains you used to get when you were a kid, if you know what I mean. I hate to run to the doctor for every little ache and pain as I don't want to waste their time but I don't know about this ........ Has anyone else had these issues, is it yet another SE of Femara?
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hi Gainorl
Did you have mastectomy or lumpectomy on your left breast?
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HI Usha,
No, I had a mastecromy on my right side only and that was 3 years ago, why? I do have very slight LE on my right side which I have a sleeve for if it starts to flare up but this is different.
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Hi Gaynorl
I'm 18 month past my lumpectomy, had have no LE before, but now I believe
to get it a little if burdening my hand. I think you should ask a doctor not to worry about.
Best wishes
Usha
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Hi Gaynor, I had a similar sort of pain and unfortunately for me, it turned out to be mets to the bone. I know you don't want to run to the doc all the time but for pain that is not one you feel is a normal thing and lasts longer than two weeks, it's a good policy to get it checked out. Good luck and please let us know hoe you get on.
Love n hugs. Chrissy
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Hi Chrissy,
Thanks for the advice. I have to have repeat blood tests in a couple of weeks as my thyroid may not be working properly and then I will need to see the doc. So perhaps I will wait till then, which will be a bit over the 2 week rule, but not that far out. Hopefully this pain will have disappeared by then and be a non issue, if not I can have her check it out.
Thanks for the hugs n stuff, feel like I need some right now. Gaynor
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Gaynori, interesting that you say that your thyroid may not be working properly as it seems that is a common link with a lot of Dx's of BC. The testing done is usually on the PTH levels and this is for Parathyroidism. The parathyroid are four very small glands attatched to the thyroid itself and is often not working properly and can give very similar symptoms as the disfunction of the thyroid. It would be interesting to hear what your levels are. Would you mind letting me know? I am really interested in the correllation between the two.
Sorry Gaynori, didn't mean to go off on a scientific tagent but sometimes something will grab me and I just keep following like a hound dog....lol......maybe I was a researcher in a past life.
The two week rule (or there abouts) is a good rule to follow and tends to stop a little of the worry that goes along with this Dx by allowing us to ask the question of ourselves in a calm way, 'is this a normal thing ir something new?' and if it's something new, just being aware enough to keep track of it. This road is super scary sometimes and I think we have a tendancy to embroil ourselves in the 'what if's ' when all we really need to do is relax and watch. Good luck with your blood tests and your vsit.
More love n hugs coming your way. Chrissy
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Thanks for sharing Chrissy, I find this website so amazing. It's great to learn and share from others experiences, and it helps to cut down on the paranoia!
I will make sure I let you know the results of the bloodtests. I don't go for them retesting till mid June, so another 2 or 3 weeks yet, if I can stay awake that long, the exhaustion thing is a killer, I just don't have the energy I used to have and I find that so frustrating, and for some reason my patience level has been zapped too - some days the slightest thing can set me off. The weather here in Ontario is nothelping much to lighten the mood either, it's been raining almost constantly now for 5 days, and cool for the time of year - we have a long weekend coming up so I sure hope the weather improves by Friday. I'm sure I will feel much brighter in mood once this weather improves - roll on summer, blue skies, good temperatures and working/sitting in the backyard, oh yes please!!!
Thanks for the love and hugs. Sending some your way too. Gaynor
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ChrissyB
I have researched the parathyroid thing and I have found many similarities so I will be sure to ask the doctor if she is checking for that. Thank you for the pointer, let's hope I can get this sorted out and start to feel my old self, what ever that was! My mind is so scattered these days I just had to edit and resubmit because after I read thispost through it was so jumbled, oh well..
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Gaynori, ditto on the sub level of patience.....I guess it's due to the fact that we have been faced full on with our own mortality so we know that life can be short and so can't abide people or things that seem to be indecisive as that is purely a waste of time which we find precious. The returning to normal thing I think doesn't really happen but what does happen is we find a new and often better way which becomes our normal without us realising. All in all I think that we evolve a newness of awareness in all things and sometimes I look at people living their what they think are 'normal' lives and I feel sorry for them as they are so caught up with the day to day that living doesn't actually come into their lives at all. Most of them cannot sit quietly some where and just enjoy being, regardless of what is going on around them.
I find I can find joy in all seasons and beauty as well. I can find sitting in front of the fire on a cold, wet winters day and enjoy the moment, the warmth that comes from the fire, the beautiful colors and shapes that the flames produce depending on the wood that is at that moment burning. I can sit and watch the rain and track an individual droplet as it falls and find calm in that. I can watch a single cloud move slowly across a bright blue sky and transport myself or watch a bee bizzily going from one flower to another gathering pollen.........what I'm trying to tell you, is that joy and the enjoyment of, can, in itself create calm and in being or finding that calm, you can find peace and in that peace, you can find freedom.
The scattered way of mind is purely because of the stress level you are at at this time and it will get better I promise you. Hoping the next few weeks pass quickly for you and the results of your bloods are all good.
Peace, strength, love n hugs. Chrissy
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ChrissyB: your words are profound and poetic!
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Hi Chrissy
In my computer I have a file "thoughts about C" and I pasted Your sayings there!
Best wishes
Usha
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Chrissy,
So eloquently put, and you are right, sometimes we get so caught up in the everyday stress we forget to enjoy the simple things that can bring such pleasure and calm. I have to say though that watching the rain drops for almost a full week has now lost it's potential to create calm and soothing feelings - I do prefer the warm dry weather as I like to lose myself in gardening! That is my quiet time, my ME time.
I do undestand what you are saying about my scattered thought process right now, and this is something that previously was totally alien to me. I have always been a very structured person, if you know what I mean. I like order although I enjoy the pressure of multi tasking but I am finding that I do not have the patience or strength of mind to deal with nearly as much of the "multi tasking" - unfortunately this plays a huge part in my job, and hence the stress levels seem to be going through the roof. The people around me saw that after treatment finished, in their eyes anyway, I returned to my job just as though I had never been away and so expect the same extremely high standards and yet I am finding that my brain is no longer functioning that way. For a good 2 years after treatment everything seemed fine but since Christmas I am finding that the fatigue, aches etc are getting in the way. I am hoping that once the blood tests are done and we figure out the problem I can get treatment to at least get me into a nice "normal"!!!
Thank you for your kind words and encouragement, as they say "and this too shall pass..".
Not at work tomorrow and Monday, so looking forward to spending a nice relaxing weekend with my DH, we will take a ride out and enjoy the beautiful countryside. Hopefully we will find our way to one of our beautiful lakes and sit and just enjoy watching the world pass by undisturbed - heaven!!!!
Love Gaynor
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I just started Femara too and I'm gobsmacked to find out the the SE's could take months to show up. My mom is a 7 yr. BC survivor and she took Arimidex with no SE's. My oncologist said if I have trouble with Femara, he could switch me to something else. So far so good, but I will let you know. oxoxox
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Hi Rohanna and welcome. I'm on Femara and have been for eight months now with no side effects. I was on Arimidex prior and had all the side effects imaginable..........just goes to show, we are all different and tolerate different things in different ways. Hope it keeps being good for you.
Love n hugs. Chrissy
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Thank you chrissyb! I hope we both continue to have good luck with Femara. I'm feeling a little fatigue but I'm hoping it has nothing to do with Femara. oxoxoxo
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Rohanna, I also had fatigue in the beginning but I now take my little yellow pill at night and I don't have any problem with that now. Give it a try and see if it works for you........it doesn't make any difference to it's effectiveness if you take it at night.
Love n hugs. Chrissy
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Rohanna: I agree with Chrissyb... My MO had, in fact, warned me about the tiredness side effect and recommended that I take mine at night..which I've been doing. I take mine, along with my extra Calcium and second Osteo-Biflex, right before I go to bed. One of the benefits I've found is that I'm sleeping a lot more soundly than I have in the past 5-6 years.
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Have any of you notice a change in side effects after switching to the generic. I JUST started feeling good again, and my s/e's almost gone on the original after 15 mos. I'm a little nervous about switching over to the generic. But that's what the pharmacy gave me when I got my prescription yesterday.
Joni
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Joni, I can't help you on that one as we in Australia don't have the generic. Hopefully someone will be able to give you some ideas soon. I can't remember reading about any changes but I could be wrong.
Love n hugs. Chrissy
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I'm thinking of switching to Tamoxifen. It's been nearly 2 years since I started Femara, and the pain is excrutiating. Also,for the last few weeks I've had severe rotator cuff pain.I've heard of other women who have had to have rotator cuff surgery just because of aromatase inhibitors. I wasn't sure I believed that was the entire reason until now. I've done nothing to injure my shoulder but it's getting progressively worse.
I plan to call my oncologist on Monday.
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I've started taking my Femara at night with my calcium and Osteo Bi-Flex before bedtime like you suggested, gingerstx and chrissyb, and so far so good. Thank you for the tip! I have my first RAD on Thursday now that all the preliminary stuff is done. Waiting to see how it goes while I'm on Femara. Hugs and kisses to all.
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Rohanna I'm glad to hear that the switch to night regime is working for you and making things a bit easier.
Love n hugs. Chrissy
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Rohanna: So glad to be able to help! I see that your BC diagnosis was similar to mine, except I was stage II with a 3 cm lump. Like you, I was lucky that I could skip chemo and go straight into rads. Make sure you find out exactly what area is being radiated (halfway thru my treatments I found out that part of my back was getting some rays and that's the area that ended up giving me some pain as my treatments progressed) and spread whatever lubricant you're using liberally over your radiated area and the rads should be a breeze for you. One difference for me was that my MO didn't want me to start on Femara until I was completely done with my treatments. I'm sure there's some rationale involved in your MO starting you on it now, but if you find that you are experiencing any kind of side effects (from either the rads or the pills), you might want to ask your MO if it'd be ok to postpone the Femara until your rads are finished. Stay positive!
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rohanna- I started femard 3 weeks after chemo and before rads. Didn't have any problems taking it through rads, other than the normal bone/joint issues that most everyone has. I had 37 rads.
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Thanks Ladies! I'm so grateful to get information from people who have already been there. What lubricants did you use in your rad area and how often? I was told Aquaphor. jacee, how bad were your bone issues? My bone density test showed that I'm in the early stages of osteoprosis and I'm already achy from the Femara. Big hugs to you all.
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Rohanna: I switched to Aquaphor during my treatments because we thought I was allergic to the cream my RO had said to use. I'd developed a rash reaction to my rads so I did this regimen: First I cut off a piece of leaf from an aloe plant, slit it in two and rubbed the sap over the area. Then I spread cortisone cream over it, and finally I topped it with the Aquaphor. The Aloe is good, even if you have no rash, because it's cooling and does help with the healing of your radiated skin. You will find that the skin that's already been sunburned at some time in your life will start reacting to the rads first. Eventually, the entire radiated area will redden. So start lubricating the entire area from the get-go, even before you have any signs of redness. The secret is to keep your skin from drying out, which is why the RO probably told you to avoid using deoderants. My RO told me it's not the aluminum in the deoderant that she was concerned with.. it's the drying effect. Personally, I shaved my underarms at the very start of my rads and didn't apply any deoderant under that arm during the entire time. I'd heard that the rads kill the bacteria that produce the odor.. and for me it seemed to have done that.
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Just a heads up..............some time last month there is a generic for Femara. It's called Letrozole.
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Hi Ginger: I just joined as I was investigating Femara and read your posts. I think I will try taking it in the evening as you suggest. I was looking forward to August as my onc said I would be getting off of Femara but now she wants me to stay in for another 2 years and I am very upset. I have very bad osteoporosis (due to the long term Femara) plus constant pain. So I am just looking for opinions.
Also, since June 2010 I have been very ill but can't seem to figure out what it is. My heart rate jumps to 150/155; constant tightness in chest and throat. I have been to cardiologist, stress test etc. Wanted to see if anyone experiencing these symptons.
Also, what calcuim do you take?
Thanks for your input.
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Gingerstx, you're the best! I'm ready for my first RAD tomorrow and I'm nowhere near as worried as I was. Big Hugs!!!!
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Hi JanetFrancis
Glad to join our page! I personally want to congratulate you taking Femara for many years without wanted to skip it. Many of us wanted it. Looking at SE's from aromatase inhibitors there is said: can cause more heart problems, Speak about to your cardiologist!
Stay connected!
Best wishes
Usha
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Dear Femara friends hang on there.
I have been having more frequent bad femara days since December , my worst was in easter. Very stiff all the time could not move all day , I had Tam for two years, I had Femara for three years minus 6 weeks, and I stopped the Femara. Yesterday ONC said OK. I hung on there the whole five years minus 6 weeks, If I did it so can youuuuuuu.
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JanetFrancis: When my MO wrote out my prescription for Femara she told me that now the researchers are saying "at least 5 years" and that she might keep me on it longer, so your doc is probably just trying to cover all bases. The multivitamin I take in the morning only has 200 mg Calcium Carbonate in it so I take 1200 mg Calcium Carbonate with D (400 IU) before bedtime to give me the extra dosage required by females. In the morning I also take an extra 1000 IU of D3 to help with my bone health. I've been osteopenea (pre-osteoperosis) for several years and am rying to forestall any further bone denisty problems which I understand could be exacerbated by Femara. I'm also almost 68 years old and had all the "normal" age-related joint aches long before I was diagnosed last December, so I take Osteo Biflex for that. Mine says to take two pills a day, so I take one in the morning and the other before bedtime.
As far as you heart rate and other aches and pains, make sure you talk to your doctor about them. If your MO or RO won't do anything about them, see your cardiologist. About a third way through my rads treatments my BP jumped from its normal readings in the 130's to readings in the 150's, despite my taking my regular high BP meds. I told my RO about it several times and her response was that I should see my GP about it. The catch was that I wasn't at home but staying with relatives for those 2 1/2 months, and my GP was 1500 miles away! Once I did get home and took my BP, my readings were back to normal! OK, maybe it hadn't been due to the rads themselves, but I think our bodies "have a mind of their own" and even though I'd not "felt" stressed, perhaps the treatments were making me stressed.
Rohanna: Because I had to hold my arms up in that over the head position for at least 5 minutes longer, the only rads I didn't look forward to were the once-a-week session during which they also did some mammograms. Otherwise, the rads were a piece of cake and I never, ever worried about them. My rad techs were the greatest: caring, sensitive to my needs and concerns, and always upbeat and I'm sure that's what made the difference for me! Have a great day!
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I just refilled my femara prescription and I was given a bottle with pink pills. Mind you I have been taking Femara for almost 5 years and the pills were always yellow. The bottle does not say Femara it says Letrozole (which I know is the proper drug name) and says it is a subst for Femara. Has anyone had pink pills? I want to make sure it is the correct drug. Is this generic drug? If it is it still costs over 1,500 dollars for 3 months but I only pay $3.
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femara just went generic--has anyone had any issues with it? My old one was yellow, this one is pink....
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I got the pink pills too and have not felt any different than with the regular Femara. I also was on Femara before rads and had no problems. I have been on it for 7 MO's and still no major SE except for joint pains when I get up from setting. I am taking D3 and multiple vit. but not calcium. Will check that out. I already had problems with my thyroid, hyper then hypo after iodine treatment. On synthroid. Helps so much to take it at night.
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Yes........the generic is pink. I have them also.
Hope everyone has a great Memorial Day weekend and be thankful for the ones who keep our freedom.
Norma Jean
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Went to obgyn had test done everything fine. He told me since I had breast cancer that i needed colonoscopy I had one in 2004 but he said that I need one. Went to colon dr he also said i need it so will be having it done 6/13/11. I pray everything will be ok
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nanna, I was told the same thing. I had no idea colon cancer and breast cancer were some how tied together. In my case it was my insurance that called the Dr. to request the test.
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Thanks girls, I also had no idea the Breast and Colon cancers were possibly linked......I guess that's going to be another question on the list for when I see my doc next.
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It will be on my list of questions, too. Nana, did your obgyn say how often you'd need to have a colonoscopy done now? It used to be every 10 years if your test was negative.
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My obygn told me last year ask my onc about it. I did and she said no. Well when went to my obygn for pap. He asked me if i had it done told him she said no.He said he was goin make me appt.That they were tied together.We need get checked. Will find out after i have it done how often i need have it done.
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Hi ladies
I would like to share my experience with you: March 2009 I have the surgery of colon adenocarcinoma (stage I, no nodes, no therapies). I was doing fine, felt OK, till in Oct. I found a lump in my left breast. I was said it's the same adenoma as in colon. (stage II, all possible therapies) Have had colonoscopy same weeks ago - all OK.
We really should take care about all possible symptoms!
Best wishes
Usha
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Well you got me curious, so I went on Google to find out what I could about the relationship between the two cancers. Here's the best info I found:
http://coloncancer.about.com/od/faqs/f/Breast_Cancer.htm
Does Breast Cancer Increase the Risk of Colon Cancer?
It basically boils down to genetics. You may have heard of BRCA 1 and BRCA 2, commonly referred to as the breast cancer genes. Some research has determined that the BRCA genes increase colon cancer risk and other research has shown that they don't. There's also a genetic disorder called Peutz-Jeghers syndrome (PJS) which is known to increase a person's risk of both breast cancer and colon cancer.
BRCA Genes and Colon Cancer
These genes are actually a double whammy for women because they increase the chances of breast cancer and ovarian cancer. Scientists have looked into their triple-whammy potential (colon cancer) with mixed results.
For example, research published in the journal Cancer Genetics and Cytogenetics found that breast cancer plays an important role in colon cancer development. However, research published in the Journal of the National Cancer Institute found no association whatsoever between breast cancer and colon cancer. Then there's another study, published in Diseases of the Colon and Rectum, that determined breast cancer doesn't increase the risk of colon cancer but it changes the way people get it. Sounds a little odd, right?
It's actually pretty interesting. Researchers examined data from about 750 people, a third of whom had the BRCA 1 or BRCA 2 genes. Turns out, women and men with the BRCA genes weren't any more likely to get colon cancer than people without the genes. But, the people with the BRCA genes who did get colon cancer got it about five years earlier (age 62-ish rather than age 67-ish) and had better survival rates.PJS and Colon Cancer
Unlike the BRCA genes, PJS is pretty straightforward. People with PJS have more than a 90% chance of developing cancer by age 64. They're at increased risk for several types of cancer, but breast and colon cancer top this list. So in this case, does breast cancer increase the risk of colon cancer? Sort of. If you're diagnosed with breast cancer and found to have PJS, then you're at increased risk for colon cancer. But that's pretty unlikely since PJS occurs in about one out of every 120,000 people.
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Ginger, Thanks for the link. It is an interestin thing. I never heard of PJS before. I know I wasn't tested for BRCA since no one under my age has gotten breast cancer before. I believe my mom was the only family member with BC and she was 81 when it was found. I was 56 so much younger than her.
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I never heard of PJS either (but then, before being diagnosed, I never heard about a lot of breast cancer related stuff) so here's what I found out about PJS:
What is PJS?
- PJS stands for Peutz-Jeghers Syndrome (pronounced pertz yay-ger).
- PJS is a rare inherited disease that affects approximately 1/160 000 to 1/280 000 people.
- PJS is inherited in an autosomal dominant pattern: an affected person has a 50% chance of passing the condition on to each of their children, whether male or female.
- PJS is characterised by freckling, gastrointestinal polyposis and an increased risk of developing certain types of cancers.
- Not all patients show all of these features or develop any particular feature to the same extent as other PJS patients, that is, PJS is different in each patient.
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rohanna....sorry so long to get back to you. Have been out of town. My joint pain after starting femara was severe! It lasted about a year and almost went away. The only thing I can attribute it to was my increasing Vit D3 to 5000 iu per day.
I used coconut oil and aquaphor after rads. But anything oily needs to be cleaned off before the next treatment. Don't want to fry yourself. I have no change in my skin since rads. No color changes or anything.
Good Luck!!
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I've been on Femara for almost 3 years, and just recently had my Rx filled with the generic Letrozole. Made by Teva Pharmaceuticals and the pills are yellow, and in the same type of blisterpack as before. Haven't noticed any difference in SEs (which are minimal now anyway!).
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Thanks jacee. Did you use the aquaphor every night? I'm afraid I'm going to make the little clear circles and ink marks come off. I didn't get permanent tattoos because the dr. said they don't do that anymore. I'm going to ask the RADS people tomorrow what they recommend, but I find more and better information on this site. My chest is marked up like a tic-tac-toe board and I have those little circles on BOTH sides. I hope I have the same results with my skin that you did!
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Rohanna: Sine I'm up early, let me chime in here: I used Aquaphor and had the magic markings along with those tape circles. Don't worry about making them come off: They're pretty hardy; I never lost a tape. The ink marks can be affected but if you apply your Aquaphor while looking in a mirror, you'll do a pretty good job of avoiding them. What you will notice is that either before or after your treatments, the techs will touch-up whatever markings are starting to fade. Once your rads are done, it all will wash off and you'll find that having no ink marks left will help you start to feel "normal" again.
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I had rads 2 years ago and they used permanent tattoos. I was told they do this because you should never have radiation to the same area more than once, by permanently marking the area it would tell future radiation techs the area that should be avoided which kind of makes sense to me. The tattoos are mainly in areas that no-one else will see, just one shows when I wear a v neck or vest top but fortunately it is not that noticeable - I think probably only one person has ever made a comment about it.
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Hi Gaynorl
I have had permanent tattoos too, but only 4 prickles and some washing markings..
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Wow...didn't know this about the numbness in hands/feet. I have had that going on for several months. I have 3 more Femara pills to take to complete the 5 YEAR course! So excited! Hoping that the tiredness that I have experienced for 5 yrs will disappear! lol Really hoping it isn't just b/c I am old and fat! Hang in there, gals! Life is worth it! Hugs!
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congrats Shelby-how nice to have your end day so close!
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Congrats Shelby and I hope that you continue to stay well and cancer free!
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Thanks, gingerstx. I'm really glopping on the Aquaphor because I am already sore. I hate this! It feels like this monster is going to hang on to me for the rest of my life. I know there's light at the end of the tunnel, but it feels like an oncoming train. Oh well, at lest tomorrow is Friday. Can't wait to rest the poor abused skin! Have a great weekend!
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Hi Ladies
I stopped femara 6 weeks short of completing 3 years after 2 years of TAM. Does any one knows why are some people continuing to 7 years of hormonal therapy. My ONC is not a breast cancer specialist he said 5 is enough since I developed reumatoid artheritis, I just need to make sure I am doing the right thing.
HH
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Good question Infohh! I think maybe our MO's really aren't sure and that a lot of this stuff is "let's give it a try and see what happens..if a little bit works, more might be better." I have a friend whose daughter is a BC researcher at Georgetown who is constantly experimenting and looking to see what might work better than what's been done before. Also, since the Femara is an estrogen inhibitor, perhaps they've found that some women naturally produce more of it and therefore need to continue inhibiting it longer? In my own case, my MO doc said I might have to be on it more than 5 years. I didn't ask her why but my ER/PR scores were very positive so maybe that's why?
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Thanks ginger
I was thinking that maybe lymph node envolvment was a factor too????
HH
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Hi ladies,
Should be possible that younger ladies need hormonal therapy for longer, because they should live 20 - 25 or 30 years still more!!!
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Shelby, wow congratulations on keeping with the Femara for the 5 years - go girl. May you continue to life live cancer free. Hope any lingering SEs subside quickly and you continue to live a long, healthy an enjoyable life!!!!!!
Have a good weekend everyone.
Gaynor
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slousa: I just turned 68... unfortunately, don't think I could possibly fit into the "younger ladies" category. Infohh: My lymph nodes were clear, like yours, so maybe you're right.
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gingerstx....my onc has kept me on the femara for move than 5 years due to the number of nodes involved...14/32
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Hi Gingerstx,
LOL, I'm 71 and am hoping to finish Femara after 5 years, but one of youngest Oncos at our Institute of Oncology answered to a lady complaining about Femara extension, they must be treating her in the way to survive at least 20 years... joking apart, meaning it could be that the extension healing is giving a prolonged protection from recurrence... (sorry, English isn't my native language).
Sincerely greetings
Usha
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Slousha: Good for you to be finishing up soon! Nice to know I'm not the only elder in this discussion group! :^) After being a heavy smoker, eating all the wrong foods, and never exercising during her life, my mom was almost 94 when she died of old age. Before my BC diagnosis I'd always assumed I would live that long too, because my lifestyle had been much healthier! Ha! Maybe that extension would do it for me though, eh?
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Well my husband picked up my Femara prescription last night and I am disgusted to say that the makers of Femara are not honoring the June 15 date of the coupon. I am even more disgusted that my insurance is no longer honoring the $30 copay for it. I had to pay $97 for it. CVS want take it back and fill it with the generic either because I have taken three. There fault they didn't have it in stock and gave me three until it came in.
I sure hope next month that the generic copay comes in a lot cheaper. I can't afford to pay that much more on my meds.Still have knee and finger pain. I am always tired too. Other than that, I feel like I am trying to put my life back together unsuccessfully most days. The heat here is so horrible and it's not summer yet.
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Has anyone switched from femara to generic arimedex. Are you having any problem with switch?
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I'm filling my prescription for generic Femara tomorrow and was just wondering if anyone is taking just a half dose? I was on Tamox for 3 months and was one of the 1% that got a blood clot and I'm terrified to take the Femara. Are there any studies that show that taking less works as well as taking the prescribed dose? I know, silly question but there's a study that was done that showed that taking just 1mg of Tamox and not the prescribed 20mg works just as well.
Terri
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I haven't seen any studies on half dosage. I've always wondered why doctors don't do before/after estrogen level tests.
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infohh...I recently stopped femara after almost 4 years (did tamoxifen for 2) standard procedure. I too was nervous coming off and thinking why not just stay on. I so have pre-ost. and also arthritis has develpoed in my knees so staying on could have made that worse. Also about 6 weeks after stopping my period returned! My onc said no way so a bunch of tests were ordered, pelvic ultra sound and blood work. Blood work shows I am still post menopausal and all test showed everything healthy down below. Theory is that my 41 year old body was trying to start a cycle. Why wouldn't it,I am only 41. It does make me nervous though, what if my body suceeds and I start to cycle and build estrogen again. Thinking oopherectomy might be in order.
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I just got my Femara refilled using the coupon (making it only $10) for the last time since it expires this month. I'm anxious to know how much the generic will cost me.
Also, I thought I should share with you some results. I've been taking femara for 4 months in order to shrink my tumor before having surgery. I just got the results comparing an MRI from last week to one in January. The size of my tumor went from 1.3 x 1.3 cm to 0.7 x 0.9 cm. There is new evidence (in the news this week) that Femara might be helpful in preventing tumors from developing in the first place. Some women don't respond to this treatment, but for others there is proof that it works.
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Terri.....hello friend!!! I have been taking a half dose of Femara (1.25mg) for a year now. My s/e's were horrible on a full dose. Severe joint pain. I just couldn't do it! My Onc of course would rather I take a full dose, but understands that quality of life is important. If you go to www.femara.com then scroll down the page and click where it says for full prescribing info click here. It will take you to a pdf document. Paragraph 12.2 talks about there being full estrogen suppression achieved with doses of .5mg, which is even less than 1/2 a pill. I asked my Onc about taking one pill every other day, but he thought it would be better to have some in my system every day. My joint issues are much better. I might someday try a full dose again, but not for now.
Sorry to hear of the blood clot. Hope you are doing great otherwise.
Joni
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Sherri, that's such positive news. Thanks for sharing!
Joni, I'm going to look up that study info. I'd love to be able to reduce the dosage!
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Joni, I answered you back yesterday but now I don't see my post! Strange. I looked up that info on Femara and I think that I'm going to start off with a 1/2 pill a day and see how that goes. I read that even as little as .1mg cuts the estrogen but they suggest at least .5mg. I'll start off with 1.25mg and let you know how that goes. I'm sorry to hear that you have such terrible SE's but at least now you can function better and aren't in such pain. Thanks for getting back to me so quickly. I hope you are doing well, It's so nice to see you on here - seems like our June thread was ages ago!
Hugs,
Terri
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While we are all wondering about this or that, I wonder why the docs don't ever run the blood work to see what our estrogen levels are at any given point in time. Mmmmmm......maybe that's too straightforward & simple, you think?
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Norma Jean, my ONC tests for estrogen every six months along with progesterone, thyroid, CEA and CA125. What he doesn't test for is Vitamin D but I'm going to try to get him to test for it when I see him next week. I think it's very important for our Vit D to be at least 80.
Terri
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Well ladies it has been nice knowing you and all the great advice you have given me. My Dr. has decided to change me to a different AI. I have to finish my Femara that I have...darn I just filled it last week. Then I stop for one week and start the new one. I am hoping I will have less pain on it. It is all worth a shot. This week my fingers hurt to even be flat on my pillow at night. I told him I could deal with the knee pain but not my fingers hurting so much. Good luck to all and I know I will see you around the boards.
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Good luck Kitty. What alphabet soup do you try next?
Anyone having frequent urinary tract infections since starting Femara?
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Hi Eph I was starting to have some issues but I started taking 1000mg of Cranberry every day and increased the amount of water I was drinking and the problem stopped. That was about three months ago and it has not returned.
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so the 1000mg of Cranberry is a pill Crissy? Man, they put everything in caplets these days. I got some OceanSpray this afternoon, but called PCP (& got antibiotics) cause it was hurting! Not abdominal pain, just peeing pain-hate it! Sorry if that's TMI
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Eph, the Cranberry drinks are full of sugar so that's why I take the pill as I find the sugar, beside not being good for the waist line actually helps to feed the bug. The Cranberry tabs are available from the health food stores here so I would assume that it would be the same there. Hope the pain goes soon for you as the anti-b's kick in.
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I also take the cranberry pills. They have really helped me as well. I can find them at the local walmart.
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I will be trying Armidex next. Hope it works with less joint pain.
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Hi, haven't been on this thread in a long time.
Two month ago I asked my Pharmacist when Femara was going generic and he said he hadn't heard anything. Do you know for sure and do you have a date when it is to happen? Every time I get my prescription the Phamicist always ask " do you know how much this drug cost?' Geez, yes, I know I buy it every month and thank goodness for insurance because this is ridiculous. It's Not fair for us or the Insurance companies. $ 565.00 is crazy.
I have Osteoporosis and arthritis but my joints in my hands give me the most problems. Yoga helps a lot. Doc says I'm done with the drug in May od 2013. No longer because they don't see an advantage in more than five years.
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The generic came out around 1st of may
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artsee, I asked the pharmacist last week if I could have the generic for Femara and she said sure but she would have to order it. I asked why I hadn't been given it before and she said because I didn't ask for it.
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my560sel....
Doesn't your onco do a CA27.29 also? Last week got the answer to my question about testing the estrogen.............answer please !! .............was it would be pointless as I have no estrogen while on the aromatase inhibitors. Mmmmm........I would think this fat I have accumulated around this belly would produce some.
Usually I have a full metabolic panel with CEA, CA27.29 and I remind them about the Vit. D. Out of curiosity I think the next one done I will ask for the estrogen & progesterone to be done also. Have heard for years that the CA 125 was not reliable enough. Okay maybe "they" have improved it but at some point I am going to slow down the frequency of all this testing. Some things will not change quickly and I am tired of doctors offices !! Rant & Rave !!!
Everyone have a great day.
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Is anyone experiencing more aching in your joints since starting Femara? Is this a known side effect?
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It is a known SE and quite common Rohanna. A lot of women take glucosamin and fish oil to ry to alleviate the joint pain. Some say the joint pain will subside with time and others that it gets worse.......it's a very individual thing so hang in there and hope that your will fade with time.
Love n hugs. Chrissy
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Is depression one of the SE's of Femara. It seems I'm getting so depressed lately. The other day my DD was over for dinner and was concerned about me. I guess it has been creaping up, and just was aware how bad it had gotten.
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kira, depression is SE of cancer! Probably of Femara too. Talk with your doc-there are preventative measures you can do.
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rohanna,
you do have to ask for generics as they love to charge you for the more expensive one, or charge your insurance. The effective ingredient is the same so no reason not to go for the less expensive.
Yes, I ache every day since starting Femara last September. I have a love hate relationship with it. I love that it hopefully keeps any bc cells in my body from thriving and killing me yet I hate how sluggish and achey it makes me feel. When I get out of bed during the night I have to hold on to furniture to walk to the bathroom and it's the same in the morning. Going down the stairs I have to hold the handrail and by the time I get coffee, it starts to lessen up, but never quite goes away. Walking on the treadmill daily really helps - so try gentle walking? And yes, the joint aching is a very known, very frequent side effect. There are also drugs, like osteoease, which sooth some of the discomfort and is not a pain pill but more of an anti-inflammatory. Ask you dr!
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Kira, anything that depresses our estrogen will make us depressed........our bodies were never designed to function well with out it. Unfortunately we have to choose which is the worse evil no estrogen or BC. One good thing though, there are plenty of meds available to us to help make these SE's bareable. Please have a talk with you doc and I'm sure he/she will prescribe something for you. Good luck!
Love n hugs. Chrissy
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I guess I'll have to talk to him. I really hate the thought of taking another pill. It just seems BC is the gift that keeps on giving.
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Well the results are in for my thyroid function test, my thyroid is overactive which surprised me as i was expecting for them to say underactive because of the fatigue issues I have been experiencing. The doctor wants me to get re-tested in 2 months before deciding whether we need to do anything or not as she wants to make sure it is not thyroiditis which is a temporary thing. Personally I do not think it is. I remember feeling exactly this way prior to my BC diagnosis and starting treatment. My thought is that maybe chemo sorted it out without us realizing, not that I am saying it s cancer related just that the meds kicked it's ass too without us knowing my thyroid was even an issue. Anyway I now have to wait another 6 weeks (it's 2 weeks already since the last test) - my TSH levels had dropped further from the 1st test to the last so we have to wait and see if it drops more or not.
Well at least I know what I am working with now I guess.
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I was reading a lot of the posts and noticed that the folks taking more Vitamin D seemed to talk less of the joint pain and hand and wrist problems. Since my onc had recommended at least 2000 units I decided to check out whether making it 3000 would help. Well hello! YES! Definite improvement on the pain in the night in the hands and wrists and less stiff feet in the morning. I even nit6iced that my shoulders have a little more mobility. I think I may add another 1000 to see if I can end most of it totally.
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Mybails, have you had your D levels checked? Why I ask is, vitamin D is one of the vitamins that you can overdose on which brings with it it's own problems. Before upping your dose, get it checked more as a safe guard but also to know just what your levels are.
Kira, I used to be one of those people who never even took a headache pill to one who now takes a handfull morning and night. My grandsons call my pills 'first course' as there are so many. You will get used to the extra ones.
Love n hugs. Chrissy
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Has anyone just took zometa infusion once a year
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Hi Nanna, nice to see you. I don't do Zometa at all so I can't help you on that but if you try doing a search on BCO I'm sure you will find some information to help.
Love n hugs. Chrissy
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Nanna, I did a search for you and this is what I found.........
What is the current opinion on taking Zometa twice a year to prevent a recurrence and increase bone density? Is it harmful?
Answer -Eric Winer, M.D.: There was a large study reported at San Antonio using the drug Zometa, albeit more frequently than twice a year, to prevent bone metastasis. That study, unlike previous studies, did not suggest that Zometa helps prevent bone metastasis or other metastasis. At the moment, other than in very specific situations, most medical oncologists would not recommend the use of Zometa to prevent metastatic disease. It is a drug that can be used to prevent bone loss related to osteoporosis, but that would only involve a once-a-year dose.Hope this is helpful.
Love n hugs. Chrissy
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Thanks chrissy b for the info
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Making my mammogram ultra sound appointment. It will be a year on July 6th. Have a visit with the BS on the 8th, so need these tests done locally before that date so the info can be faxed to him. Needless to say I am nervous.
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(((((((Kira)))))) just keep thinking all will be well! We are with you and sending positive thoughts as well.
Love n hugs. Chrissy
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artsee; I went with the generic Femara this month. It is available and is oh so cheap!!! My prescription is called LETROZOLE. It is available and has been for a few months now. I'm a bit concerned that your pharmacist is trying to make some money off of you. Heather
PS. Hate to be so direct but you should not have paid for Femara with Letrozole available.
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Hi Everyone,
Have any of you ever "accidentally" taken two Femara in one day? I did, and I felt REALLY bad! Just and FYI...
Take care,
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cdean1971, Yes I did, and so agree. I had the worst hot flashes I had ever had. It wasn't nice.
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Oh heaven help me! The hot flashes are bad enough without the thought of taking 2 femara in one day! Some days the flashes just overwhelm me and I have to shower and change clothes. At night I often get up once or twice and change my sleepwear. I dislike Femara but dislike cancer even more so will soldier on..........
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justagirl, You really don't want the SE's of taking 2. I also have hot flashes that keep me up all night. I teacher, and it's funny, the kids look at me as if I have 2 eyes. I take the sweater off, I put it on over and over all day long. Not a pritty sight. Well 2 times that for that 1 day. yikes.
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Justagirl, if your hot flashes are really getting to you, talk to your doc he can prescribe something that will allieviate those symptoms somewhat. Good luck.
Love n hugs. Chrissy
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chrissyb,
I did ask my GP and my oncologist if there was anything they could prescribe to lessen the hot flashes and they both said no. They both said that usually in 6 months to a year my body will adapt....well it's been 9 months.............. Like kira1234 said, it's on and off all day with the sweater, and I can deal with that, but not sleeping for more than 2 hours without waking up in a cold sweat is getting tiresome. Since it's winter here, being in bed with damp hair and damp pajamas gives me the chills and I can't go back to sleep unless I get up, change and towel-dry my hair. It's amazing that my husband still sleeps in the same bed with me. I am a nightmare.
Chrissyb, your little grandbaby (yes?) with you in your photo is so precious. As my son is only 17, I know I have years to go to be able to experience the joy of grandchildren. My dog thinks she is a human, so I guess in a way I have a little baby, but 25 kg!
Good night Chrissy ---
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My Dr's suggestion for the hot flashes was to up my vitamin D. Now I know vitamin D is very importand but helping hot flashes?
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Justagirl, I'm an Aussie too.....there is an antidepresant that does help with the flushes but I know the Aussie docs aren't admitting that the flushes can be controlled somewhat.....duh!........I just wish we could give them to the men for a week and then they wouldn't be able to get their prescription pads out quick enough!!! There are some things in the natural line maybe if you go and see a naturapath or a chinese medicine practitioner or even a holistic practitioner they should be able to alleviate those symptoms. I must admit that this is the first winter in three that I've actually worn a jumper.....maybe mine are evening out!
The little one with me in my avatar is my niece and yes she is precious! My youngest grandchild is 12 and the eldest is 15...I have four, all boys and I love them to bits but that also is why Evie is so precious. My little dog is not sure what she is........we say she has an identity crisis going on.......sometimes she thinks she's a cat, others human and then sometimes she thinks she's a dog.......now that's what I call confusion!
Take care. Love n hugs. Chrissy
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Justagirl I take Effexor 37.5 mg for hot flashes!!! Works great!!! Its a low dose antidepressant. I actually got the prescription from my onc. I've been taking it since shortly after my dx in Nov. 08 Hope this helps and your onc will prescribe. salty
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Chrissy and saltykm,
Thank you - I'll check with my doctors!
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Justagirl, there's an herbal remedy called Black Cohash that is awesome for hot flashes. I took it to reduce heavy periods and when I went through menopause. Never had a flash! Hope you can find some and feel better soon!
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rohanna,
Never heard of Black Cohash but sure will look into it. My GP said like after a year my body will be used to not having the estrogen and progesterone and settle down. I will believe it when it happens.
Thank you!
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Hi girls,
Root from black cohosh - Cimicifuga racemosa - is known to moderate hot flashes in the menopause. Still some MO in Europe consider not to allow it for women healing cancer with AI-"Because it may act like the hormone estrogen in the body, black cohosh could interfere with hormone replacement therapy or oral contraceptives.Black cohosh may interfere with the effectiveness of the chemotherapy drug cisplatin."
Who should know? ( I dared not to take it)
Greetings
Usha .
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I've been having terrible pain in my hips, knees, shins and ankles for the last 2 wks. and haven't been able to sleep. This morning when I got off the couch to go to rads, my feet were hurting so badly, I could hardly walk. When I got to rads, I asked the dr. what he thought was causing it. He kept saying, "Eees not raadiation." Same thing his stand-in said while he was on vacation. So I called my onc when I got home and talked to the nurse. She didn't even hear all the symptoms before she said they'd had hundreds of complaints about the joint pain and Femara. She's going to talk to the onc tomorrow and she said he would probably take me off Femara and put me on something else if possible. In the meantime, she told me to stop taking it. I hope I have the answers at last. I need some zzzzzz's! The nurse also told me to double my calcium and vitamin D intake. Is she hinting that Femara may have turned my osteopenia into osteoporosis? I'm not going to ask when this is ever gonna end because I'm beginning to think it doesn't!
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Rohanna, taking extra Vit. D does help some what with the bone pain of the AI's. Hope you get some relief quick smart!
Love n hugs. Chrissy
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Hi Ladies................Femara still sitting on the countertop calling my name..............Can't make myself take it.........not even to try it to see what happens..................I hope I don't regret doing this...........but I feel wonderful, and would rather feel good for a few years then horrible for more years..................I know, I'm playing Russian Roulette, but I can't do it, can't take it.............think I'm gonna take my chances...................pray for me
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Ducky, with all the things we do it is always our desicion and this is yours......of course we will support you! This is what you think is best for you but I will say one more time, I feel great on it!
Love n hugs. Chrissy
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Chrissy...............I am beside myself, and so depressed about all of this AI stuff.....I just am scared to death to take it.................I guess I'm reading about so many women on here who have horrible problems, and very few who don't.....................Maybe the ones who don't say nothing because they are content that they have no problems..................I wish the ladies who had just minor, or no SE would come on and say something positive about this lousy drug
My kids are very upset with me, and want me to at least give it a try, and so does my RO, who has no axe to grind other then to say "you did so well on Rads..........please at least give this a shot"............I want to do what is best for me.............after all I've gone through it seems like I'm giving up now at the most crucial time.......God help me make a decision..........
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ducky, I have been on Femara since Nov '09-initially had SEs like hot flashes, joint pain & MAJOR fatigue. I am one of the ones who switched to taking the pill at night & lo & behold, most of my problems went away; that's not to say I don't have SEs---I still have some joint pain, usually daily, but not always the same joint & nothing that Ibuprofen or Aleve for the persistent ones can't help. The main benefit for me has been peace of mind (for the most part) & since taking @ night, no more fatigue. My main complaint-weight gain, not so much pound wise on the scale, but my inner tube around the middle has definitely ballooned. I walk 2-3 miles per day rain or shine; I can't imagine what I'd look like if I didn't do that. My eating is not very controlled so I can't blame Femara for all of it, but I do!
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Ducky,
I've been on it for five months and haven't had any problems. Why not take it and see? If you start having any problems then you can decide.
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Ducky, I've been on it for 2 months. Perhaps because I've already been through menopause, I've had no SE's except for some insomnia. I started having sleep problems about 5 years ago so had hoped that the tiredness attributed to Femara as a SE would help me sleep better, but instead my insomnia is a little worse. It's still a walk in the park compared to the possibility of having a recurrence of cancer in my life. It seems like everyone reacts to Femara differenlty and you just might be one of the lucky ones who have no SE's at all. Since it's already sitting on your counter, why not give it a try?
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Ginger have you tried taking it at night? It works for me!
Love n hugs. Chrissy
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Chrissy, when I first started it I took it before bedtime, but the insomnia kicked in right away. After two weeks I switched to mornings, thinking that maybe I'd taken it too close to when I wanted to sleep and it had made me overtired. I've been trying various things like warm milk and occasional sleep aids to see if any help, but so far haven't hit on a solution. I may retry taking it at night and see if there's any difference now that I've been on it a bit longer. I'm having my first lab tests early next month and I'm hoping that maybe they'll indicate some imbalance that's causing the problem. If not, I'll ask my MO for some meds to help.
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Ginger, if morning or night aren't working for you why not try lunch time? Nothing to loose. To help with the sleep problem I take Melatonin and I know of a lot of others wo do as well.......have you given that a try?
Love n hugs. Chrissy
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ducky,
Why do we get mammograms and check our breasts monthly? Why do we have lumpectomies and mascectomies? Why do we go bald with chemotherapy and let our breasts be fried with radiation?
Because, we all want this nasty breast cancer which is threatening our life to go away, and to once again, get on with our lives.
I sure haven't enjoyed taking Femara for the past 9 months, but I do appreciate what it is doing to keep any breast cancer cells from being nourished and invading my body. I think of it like insurance.
Sure, I was a bit tired when I first started taking it. My knees ached in the morning but got/gets better even after my first cup of coffee. Yes, I grew soft fine pale hair on my face (so I had it lasered off). It's all okay.
Femara gives me peace of mind. I would take it beyond the 5 years which is recommended now if that recommendation increased. It has clinically been shown to significently reduce reoccurrance of cancer. That's good enough for me.
It's normal to be scared.
As suggested, you could try it for, say, three months. My GP said it takes about a year for the body to adjust to the levels of estrogen and progesterone being decreased in your body and the side effects should lessen as it's the actual lowering of the hormone levels that causes the havoc, not actually maintaining the lower level.
Only you can decide for yourself.
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Chrissy, Haven't tried Melatonin yet but I'm planning to get some this weekend. I'll let you know how it works for me. How much do you take?
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I take 10mg about half an hour before I go to bed or I take it and go to bed and read for about half an hour. I started on 5mg, it worked but to me not well enough so I added another one and it works like a charm! Mine are 5mg per tab. Hope it works for you as it's a great way to sleep without adding more chemicals to the body.
Love n hugs. Chrissy
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My side effects from Femara went away after awhile. I'm still stiff when I get up from sitting a long time. (I have a bad hip, but I the hip's arthritic and I've overused it for years pushing a big gear on my bike, so not sure I can blame the Femara.) My doc has given me Aromasin to try instead, to see if my joints feel a little better on it, so I'll try it just for the heck, but I'd be happy to switch back to Femara. I take it at night, and I take Ambien to sleep. Primary doc thinks that's all fine.
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ducky, I have been one of those who has had a lot of SE. I have been on Femara since December. My Oncologist decided it was time to try a different AI just to see if my side effects ease off any. I have to say that taking 3 motrin at bed time has really helped, taking my 1200mg of Calcium and 4800 IU of Vitamin D have all made a difference in my pain. I would call and tell my oncologist but my insurance co pay will be cheaper with the other one. I was able to get on the floor this week on my knee....something I haven't been able to do since I started Femara. Even my foggy brain has let up some. I have one more week of pills left....I can't wait for my one week break!!! I will have to clean my house from top to bottom that week.
I say give it six months and see how you feel.
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I have been taking Femara for over 4.5 years. I am leading a perfectly normal life. The first month I had a little soreness and a bit...tiny bit tired. I take it at night now and all is well.
Give it a try....I am thinking of extending to ten years. It is worth it to live. I felt great when diagnosed with BC. Cancer doesn't hurt...until it does. Femara may stop the cancer.
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thanks ladies again.........................this is what I needed......your all right.............I can try it, and if it gets tough, I can always end it.
I am 76, so how much Estrogen could possibly be left in this ancient body..............I went through the change at 56, had my Estrogen levels checked yesterday, and waiting for the results.............if its low they say the drug doesn't have to work as hard, thus less SE's....................
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Two days off Femara and the joint pains are completely gone! And I slept 11 hours last night! Onc says he's going to try me on Arimidex. I'm not telling anyone not to take Femara. I"m going to stick to meds till I find the right one. Hope everyone finds one they're compatable with! Also, my onc nurse takes unused meds and gets them to women who can't afford them. Cool!
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Rohanna, you are doing the reverse of what I did.......had such bad reaction to Arimidex and am doing great on Femara.....Hope the change will be good for you and to you. Good luck!
Love n hugs. Chrissy
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Thanks, Chrissy. Isn't it funny how different things work for different people? My mom is a 7 yr. survivor and she was on Arimidex for 5 yrs. with no SE's. What were your SE's on Arimidex, if you don't mind me asking? Hope you're having a restful weekend!
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Getting ready to start Femara this week. Wish me luck !!!! I have been on Lupron since August of last year. SE are JOINT PAIN, HOT FLASHES and more JOINT PAIN and HOT FLASHES but that is it. Hoping that Femara and Lupron don't produce more SE's as these suck, but are tolerable for what the drugs are acomplishing:)
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Hi duckyb1
to mention only; at the time of surgery I was 70, my Estrogen level 100%!
Best Usha
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Rohanna, my SE's on Arimadex were, memory loss, hair thinning, every joint painful, I'm 59 but moved like a 90 yr old, depression and general malaise. I didn't realise how bad I felt until I stopped taking them but I knew I felt bad. The change of meds bought with it a whole new outlook....yahooo!! Goodluck with yours!!!
Love n hugs. Chrissy
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Slousha..............Wow girl, 100%............that is huge......................and shocking to me at 70..............I have excess body fat................not huge, but more then a 5ft. person should have........I read where your body fat causes you to produce more Estrogen.............if that is true......I'm not expecting "low %'s", when the test results come back......................Isn't it amazing when we're younger we think "oh I really need to lose weight"...............then it is because we want to look slimmer, better in that dress, wanting to be a smaller size, and just "hey don't I look hot".......................................now its.................."if I would not have gained that weight", maye I wouldn't be dealing with the "health issues" I have today.........................oh well.................can't worry about things past.......................just gotta learn from mistakes we made...................I'll let you gals know what my results are..........hugs.
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I have always tried to keep my weight fairly even and I succeeded for most of my life until I was Dx'd with BC. since then it has been a loosing battle and the lbs have gathered in placed I'd rather not have them....all I can do now is keep it stable and try not to put on any more but at 5'4" I look like an apple with limbs and a head!.....ugh!
Love n hugs to all. Chrissy
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Hi,
About estrogen level:
All my life I was a little fully shaped, haven't had any difficulties with menopause, I haven't had hot flashes, all was normal, then BC at70th! I was told from DR's my biological age should be lower as my chronologic therefore I got all the treatments for ladies till age of 60. It was a bit tiresome, but I got through. It could be possible the higher E levers could cause more SE's. I was really complaining about on these sites.
Best wishes!
Usha
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ChrissyB-I totally relate (sorry if this is duuble posted. Computer acting wonky!)
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I am on femara and will have been taking it for a year in September. I have not had many SE's. I take it at night. I have a trigger thumb and sometimes I have pain in my thumb when I try to move it. I do feel stiff and I do have hot flashes. I started to have hot flashes when I went thru chemo. I may go off femara for a month in October just to see if the thumb issues go away. I do not want to go thru 5 years of femara and find out it is was not caused by the femara. If it is the femara then I will probably go back on it as the SE's are really not that bad for me compared to what I have heard from other people. I also take a yoga class for breast cancer patients once a week. It really helps with the stiffness.
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Took 3 mg Melatonin half hour before bedtime last night and had a beautiful sleep. Thanks for the recommendation!
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Glad to hear it Ginger!
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Well, I am glad I stopped by tonight. Tomorrow I see my Onc for the last time. (He is moving) I have been on Femara for a month now. I am walking like an old lady. The joint pain, fatigue and after reading all your posts, I realize how emotional I have been latley. Although the joint pain and fatigue could do that as well.
I am thinking it's a quality of life issue. Tonight I want off. After spending a year recovering from BMX, chemo and rads, I just want to go back to being me. Tomorrow in front of the Onc I will give him all your suggestions and see what he says. I am only taking 1200 Vitamin D so perhaps upping it will help.
Thank you, beautiful ladies for your constant source of info. Onward
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Hello all! I have taken the time to read almost this whole thread before I posted. I have been on Femora for over a year. The 2 worst side effects I have is not sleeping and terrible pain in both arms. I have been absultely miserable all this time. But it has all changed!
At the start of the summer weather, I started going to our community pool. With the use of my pool noodle, I started doing swimming exercises using my arms and legs. I have to admit, it was not a pretty site! But I was moving! My legs were fine during the exercise, but the pain was unbearable. At first I was only able to go half the pool before I was almost in tears. Each day I built up more time with the arm exercise.
I am now able to continue working anywhere from one hour to 3 hours in the pool working. Maybe not all together, some breaks in between. But the results have been unbelievable!!!!!
The pain is very subtle, almost gone. My energy level is almost back to pre-cancer. AND....I am sleeping again! Before I couldn't fall asleep til 3 or 4am each nite, then sleep til almost 11am. Since last Thursday, I am up between 8:30 or 9 each day!!!! My energy level is great! Of course I don't know what I'll do if it rains a day! lol
I hope my experience can help others. I plan on increasing my exercise a bit each day. Helen
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Congratulations, HelenNC! That's great to hear! Hope it continues.
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Helen,
I too have been working out in my pool. I am blessed to have it only a few steps from my kitchen. But the bad news is I live outside chicago and our weather has been pretty lousy for swimming. Glad its made a difference for you and hope eventually it does for me as well.
Said goodbye to my Onc but he is giving me a script that should help with the joint pain and sleeplessness (failed to mention that) and I will give it another month. Onward
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HelenNC... so glad that you have had success with swimming and exercise. I was having the same result with lots of swimming exercises. Just had an exchange surgery and still waiting for my incisions to heal up a little better before hopping back in the pool. Can't wait!
Onward... hop in the pool! It's going to be HOT here in Chicago area later this week. Summer is finally here. Probably not the best thing for us dealing with Lymphedema, but that is a whole nother thing!
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Hi everyone, I am also onFemara and I have a question. Does any experience fatique from this med.? I sure do. I am going to try and take it at night. Hope the heck it works. Thanks
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Bette223-my fatigue went away after taking Femara at night instead of morning. Good luck
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My onc is changing me to arimidex (generic) I can get for $10.00 Hope i dont have any more are different side effects.
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thanks eph, I just took it now. Hopefully it will be better than taking it in the AM. I appreciate your feedback.
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Anyone have any idea how to get Femara at 10 not 35 or 50 dollars? The coupon that i just recieved yesterday from my oncologist expired 6/15/11. So this month i paid full price . I have only been on it since November. Shouldn't I get a full years worth or up to 800.00?
Any suggestions?
Donna
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Bette223- I am so tired with this... My legs feel like lead........ But hardly any side effects. I thought I had knee problem with it but that wasn't the case.
Donna
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Hi ariesrottie. Yes the legs discomfort is not fun. Mine got so bad I took a tylenol3. That seems to have helped with that problem. EPH suggested I take the med at night and very little SE's presently. I am hoping it remains like this. I am very greatful for her suggestion.
Have a save, happy and healthy holiday
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Hi again aires, do you know the med is now in generic form?
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Just got the generic yesterday for $15
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HelenNC- thank you so very much for sharing that!!! I had sx today and will hit the pool as soon as I have recovered. Your post gives me hope.
The anesthesiologist today told me thtat acupuncture really helps Femara symptoms- will let you know. Nighty night! - Daiva -
Onc took me off Femara today and is putting me on Arimidex. The SE's were just too bad and taking the pill at night didn't help. Wish me luck!
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sorry rohanna-hope that arimidex is the answer.
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Just wondering if anyone is willing to share their current estrodiol levels.
My most recent was 32. I am trying to make a decision about hormone suppressors/blockers
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Marilee: Just had my estrodiol level checked for the first time last week and it came back at
on the sensitive LabCorp test. I have been on Femera since Oct this year but the first of June I decided to take half a pill to see if my back pain lessened. So when I had my blood tested I had been taking 1/2 pill for 3 weeks. I was exceptionally pleased with the number. I have an apt with the MO on Friday next week and it will be interesting to see what he says about it. -
Rohanna
I took my last Femara last night. I get to take a one week break before trying Arimidex. I hope we both have better luck on it. The week I went back to my oncologist it even hurt to touch my fingers at night. I can deal with my knee and joints when getting up and down but I can not deal with the fingers hurting in my sleep. I also have trigger finger in both my middle fingers. The right one is worst. I am so hoping this improves.
I have not had my estrodiol levels checked since last year and it was a 23. My NP says it is not necessary to check it since I had the hyst. and ooph.
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Hello ladies,
I started Femara two months ago. I think I've noticed a few SE, but nothing unbearable. After sitting at my desk for 4 hours straight, I feel and look like a 100 year old woman trying to hobble around. Little spots of arthritis that I've had for a few years are more pronounced. Plus, I'm more emotional than I've been in 20 years. I don't know if it's caused by the Femara or just from life/work/cancer stress. I guess time will tell.
Kittydog, You mentioned that you take Vitamin D and Calcium. Were the amounts you mentioned per day or per week? I'm asking because I've been on 10,000 once a week for a year now.
I'm so thankful that I am not alone in this journey. It's such a comfort to listen to your stories.
Elizabeth
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I didn't realize that generic Femara is made by many different pharmaceutical companies.
June 6: The Food and Drug Administration has approved a dozen new generic versions of a drug used to treat breast cancer, the agency said Monday.
The FDA said that on Friday it approved versions of Novartis' drug Femara (letrozole) made by Teva Pharmaceuticals USA, Dr. Reddy's Labs, Sun Pharmaceutical Industries, Impax Labs, Endo Pharmaceuticals, Roxane Labs, Accord Healthcare, Synthon Pharmaceuticals, Natco Pharma, Indicus Pharma, Fresenius Kabi Oncology and Kudco Ireland
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Elizabeth,
That is per day. 4000IU's of Vitamin D and then what ever is in the Calcium I am able to get down. Having big problems still swallowing Calcium. Found some nice gummies and then read it is the worst type of calcium for you. However I guess some is better than none.
I wish all of you the best on this journey with our meds. I will still read from time to time.
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My oncologist refuses to check my estrodiol levels, my Vitamin D levels, my cholesterol levels ... etc. etc. etc.
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very well said Eph. I tried the med at night and you are so right. Feel much better with just a little discomfort during the day. However, not everyday. Thanks again for your input.
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Hi Donna. Taking the medication at night is so much better. Where in NYC are ya? Manhattan? I grew up and was educated in Flushing. Now in New Jersey
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I have dropped in on this board to ask one question about Femra. Those of you who have had SEs when did they start? I originally was on Arimadex for appox. 3 1/2 the SEs were more than I could stand. Next put on Femara.......true less SEs but the few I am dealing with is very worrisome.....unbelievably sore hips & knees, what is next?? I am HIGH risk osteoporosis. It seems crazy to put the Bovia (once a month), the calcium and Vit.D (wkly) in my body in the morning and that very same evening put in my body that is undoing everything. My husband is adamant about putting me on Tamoxfin. I am postmenopausal many years.
Is there anyone here that has switched from Als to Tamoxfin? Regardless, they all have their drawbacks. Can anyone help with info ???
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Hi Norma Jean,
Complaining to my Onco about heavy SE's he proposed to switch me from Femara to Tamoxifen, but having had thrombosis two years ago I didn't dare to do it. For months I was on pain killers; Glucosamine, D3, Calcium helped little by little, the most helpful are remaining exercises, massages, swimming, acupuncture and warm sunny weather now in summer.
Try to sustain still for some months, I'm getting better after 15 months ...
Some DR's are saying Tamox is very doable.
Best wishes
Usha
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Hi dear ladies,
Being on Femara for 15 months, having had a lot of SE's and coping with quite successfully, finally I got rash - first on upper arm and now all the hands over and on the back too. Getting Claritine (Schering) from my PCP didn't help. I'm looking for advice what you other ladies are doing or taking in such case.
Thanking in advance.
Greetings
Usha (English isn't my native language)
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slousha, are you sure you didn't get into something that's causing the rash? Sorry, I haven't had that reaction so I can't offer any suggestions. I HATE to itch! Good luck
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It's exactly BECAUSE I've gotten so many side effects from Femara and from chemo that I'm afraid to switch to Tamoxifen. Since I seem so sensitive to drugs' side effects, I'm terrified of blood clots. So I put up with the severe pain instead, and count the years until I take my last pill.
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I go to my onc next week i am going ask if i can get the zometa one time a year. I only have medicare and i have to pay $300.00 as my copay. I cant afford this.My husband has prostrate cancer and had to have seed implant and 25 radiation treatments and we have so many medical bills.I tried get help with them they say we make to much. we only have social security that is our only income.
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I have a question for you ladies. Has anyone had an ankle cramp or spasm? I had one in my left ankle last night that was so bad I almost called the ambulance but it went away in about ten minutes. Then five minutes later I had one in the other ankle which only lasted about three minutes. I'm chalking it up to not having drunk enough water all day.
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I will frequently get very severe foot cramps, so I can kind of relate. I was told to increase my magnesium intake, which helped. I started buying Citrical + Magnesium.
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I've gotten foot cramps through the years and have found that eating a banana after one strikes is a good antidote.
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I've been on Femara for almost a year now, and the side effects are still just as bad - hot flashes (which take me continuously at night), and aches in my ankles and knees and hips. Getting out of bed in the morning I look 79yo instead of my almost 59! At night I take a sleeping pill and often one or two Tramol (pain pills) My GP says I shouldn't need pain pills any more and she is worried about addiction. Hmmm, addicted to wanting to sleep for more than 1 1/2 hours at a time?
Where are you all on pain medications?
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Hi justagirl....I have been n femara or ne of them now for 3 years and 7 months. One year and 5 months to go......Had mammogram today and get results Friday this was my 4 year point. I am taking cymbalta for the pain and also a pain pill on the side as needed. The cymbalta has helped me more then anything for the pain but has made the hot flashes worse. My oncologist told me some people have more and different side effects the last year on these pills. He has never mentioned I may be addicted to any of the pain meds or anything else........The cymbalta and taking the femara at night helps me to sleep. You may want to give the cymbalta a try.....Hugs and prayers c oming to ya......Jude14
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My onc put me on tramadol 50 mg i only take 1 pills a day. This helps with the pain.
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Hi slousha !!! Long story short since I lost what I was in the middle of typing, I am now on Tamoxifen. This is the third med since finishing my chemo. I am so tired & frustrated with all of this that I would really like to go throw out every bottle of meds I have, but it would take more effort than I have. Now I am faced with the ugly decision of having a hysterectomy or a transvaginal ultra sound every six months. This just never seems to end. Has anyone ever followed everything to a "T" and seen the end on the proverbial tunnel??
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I started Femara 3 mos ago. I was first on Tamoxifen for 2 mos - then had my ovaries removed after my bi mx and 6 month chemo stint for stage 2 bc dx at age 39. I'm BRAC1+. Then did arimidex for 18 months. Experienced pretty severe hearing loss as a result (see side-effects - not a common one, but still is recorded). Switched to Femara and frankly - they are all the same. Fatigue, hot flashes, night sweats, aches, anxiety. Just got to suck it up. I wish you well!
Diane at www.pink-pockets.com The solution for patients with drains after surgery!
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Hi dear ladies,
EPH3_12- about rash, my PCP said it's a reaction of Femara and being exposed to the sun. He ordered to the chemist's to make up an ointment. This and Claritine helped and in one week I was cured.
Justagirl,that sounds as just the same we all Femara ladies experience. All hormonals are causing quite equal SE's!!! To hold on or not, that is the question! In spring I have had so hard times, various SE's were coming and going, I was taking pain medicines every day, now it's a little better I am trying to give them up...
Normayean, my ONCO said Tamox is the most tolerable and is applicable for decades. Many ladies tolerate it well. To avoid eventual uterine cancer (as SE) some checkups are needed. Ultrasound done from an experienced GYNO it's a little nasty, but nothing fearfully. I see hysteromies in USA are often recommended, in Europe rarely only if precancerous-like sights are found or PREVENTIVELY.
About pain medicines I was taking ibuprofen 1-2 hours before my evening Femara, and changed next day to Zaldiar (37,7 mg tramadol with 325 mg paracetamol) After I was sleeping well.
As said, after 15 months momentarily I'm going to be better...
Affectionate greetings
Usha
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Thank you for all of your responses in so far as the side effects and pain, all thanks to Femara.
I'll keep on taking it and if I need Tramol to get some relief at night - I'll see my GP next week and if she isn't happy prescribing the Tramol for me, then when I see the oncologist next month I'll get her to write for it.
Heck, I don't drink alcohol, don't smoke, my weight is low, I exercise 5 to 6 days a week and breast cancer still found me. I have spent the last 16 months fighting and I'll continue to take the Femara for the full 5 years as I want to do the best I can for myself, son and husband.
It's just that I don't have anyone to talk to here that is going through/or has gone through what we all are with BC.
good night and take care....
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Hi justagirl
Maybe you should ask your GP or Onco for an another painkiller - ibuprofen (or something similar). Taking it before Femara was helping me better as tramadol (morfine - you really could be addicted), Keep posting! Greetings from Europe to Australia!
Best Usha
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slousha,
They tried me on aspirin and ibuprofen and tylenol - din't help and my liver tests came back abnormal.
I just don't get how two pills a day can make me addicted if the information on Tramol says you can take up to 400mg a day and I take 100mg.
I truly would just love to sleep even 6 hours in a row. AS it is now, I have a difficult time falling asleep and then awaken every hour to hour and one-half. Start trying to sleep at 11pm and awake at 7am exhausted. I don't nap during the day if I at all can keep going, as that is supposed to make sleeping at night more difficult. I don't have coffee, tea or coke after 3pm and don't drink alcohol.
Where do you live in Europe, if I may ask?
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Hi justagirl,
To ask only: are you awaken because of pain or psychological moments? I see you have had lots of surgeries, could this be that reason? It's really terrible not could to sleep. You must find some help. Months ago when I was awaked of pain, get up, mowed, walked around, its helped sometimes.
Best Usha
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I took Tamoxifen for 5 years about 14 years ago. Lots of se's with it. When recurrence came to the bones they put me on Femara. No se's at first. Been on it since December 10. Hair loss, hot flashes and not just flashes, soaked and have to change in the middle of the night. The joint pain and muscle pain is pretty bad but I don't know if its Femara, zometa or the cancer! I do have severe ankle cramping on occasion in the night. Walking it off, drinking a glass of water and I eat a banana, yes, in the middle of the night. Lol. I can't change because the Femara is working! My tumor markers are coming down every month. I will try the glocosamine as others have. We just have to find things to combat the se's. I am on some major pain need because so many of my bones are effected. It helps but the I think the Femara is causing a lot of the joint and muscle pain, especially in my thighs. Anyone else with that?
Good luck ladies. God bless us all!
Deborah -
slousha,
To answer your question about my problems sleeping: I can't fall asleep because no matter how hard I try, I can't 'quiet' my mind - it keeps thinking and thinking of things I should do, things I did years ago (all negative things I think of) and I wonder what is in my future. I worry about finding a lump somewhere. Just a month before my DM this year, when I saw the PS she said I should have that basal cell carcinoma (BCC) removed from the left upper side of my chest. I freaked out! It was just a little red spot that never quite healed. Ran to my GP and she biopsied it and it came back BCC, so then she did an excision of the little thing leaving a 2 inch scar. Another cancer! First BCC I've ever had and I've lived in sunny warm places for the last 40 years of my life.
Ok, when I finally fall asleep I awake an hour or hour and half later, usually due to a hot flash thanks to Femara. I get up, change pjamas, get a drink of water and go back to sleep and do fall asleep fast. Then awake again in 1 1/2 to 2 hours later all hot and damp.
Lying still makes my muscles ache actually worse than activity so as the night goes on I awake when I want to turn over as it hurts.
If I lived alone I would probably go vacuum or watch tv but that would disturb my family. I am able to fall back asleep easily once I can get asleep, it's just staying asleep. Usually it takes me 30 minutes to 1 hour to get to sleep.
I've never been a good sleeper, probably due to working so many night shifts in the hospital. I used to work 24 hours in a row, so I kind of got used to pushing myself through the nights.
I really don't have any residual pain from my surgeries or my implants....just that darn Femara....and 4 years and 2 months to go. I see the oncologist next month and will ask her what I should do.
Foxlairfrm,
I think the Femara is giving you the sweats and aching ankles for sure. I wake up so drenched I have to change pajamas and often lay a towel down on the sheet as I sure can't change them in the middle of the night - I think my husband might protest. Funny, I too drink water and most nights walk down to the kitchen and get a banana - might as well bring it up with me when I come to bed. Femara is supposed to be one of the best drugs out there, so I'll keep on taking it!
good night.........
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Justagirl, calm down,
"From Wikipedia, the free encyclopedia (Redirected from Basal Cell Carcinoma)
Basal-cell carcinoma is the most common type of skin cancer. It rarely metastasizes or kills. However, because it can cause significant destruction and disfigurement, it is still considered malignant [1][2] by invading surrounding tissues. Statistically, approximately 3 out of 10 Caucasians may develop a basal-cell cancer within their lifetime.[3] In 80 percent of all cases, basal-cell cancers are found on the head and neck.[3] There appears to be an increase in the incidence of basal-cell cancer of the trunk (torso) in recent years."
I knew some people here having BCC, they had have surgery and are doing well for years. It's a disease that could be seen and treated and therefore not so risky.
As I see some ladies got a medicine to alleviate hot flashes, I cannot give you any advice, because I'm older and haven't had difficulties with, often was felling cold.
But what we have in common is this FEMARA and battling with SE's. I could completely understand and follow you. Dear Dr's don't like listen about, my Onco is looking through window saying "take the pill" or "cancer healing isn't something for weakly souls" So what is remaining? To cope with, or to give up? But we WILL BE ALIVE, WE WANT STAY WITH PEOPLE WE LOVE! And we must to carry on and being grateful for the benefit being ER+PR+.
Before years I wanted to get operate a week vein because of looking ugly and my PCP said: "every surgery, every narcosis, every numbing the body retains in mind."
Dear Debbie, it's heavy for a mother and wife to adjust with her owing to illness.
Please take pain pills cautiously and try an old advice still more: a big cup of warm milk, go to the bed, embrace the pillow and think about much more pleasant moments of your life, being there, living with.....Sometimes it helps!
Sorry for my modest humbly English!
Best wishes
Usha
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Justagirl - additionally
After 6 months of Femara, I was awaking many times at night when turning round from terrible backbone and rib pains. I started taking Vit.D3 at 2 -3 hours before Femara pill at evening (advised by ladies from AI posts) and I must recognize it is much better since then.
When are you taking your pill?
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I have found taking Femara in the morning works best for me. I'm active during the day and the muscle stiffness at it's worst comes hours after the pill. I do experience severe tightness in the muscles when idle, especially at night when I go to roll over or move. Tried in the evenings and it made things worse, especially the hot flashes. The pain meds do help but I am on pretty major stuff because of the severity of the bone mets. I can now walk and get out of bed by myself! I am more worried about my quality of life than I am addiction or side effectsnof the pain meds. If I can find things to combat the se's of Femara, my quality goes up. Hopefully I will live many years and I really want to enjoy those years. It does seem that the SE's I am experiencing are the same as others on Femara. The doc's and I have been trying to figure out if it's Femara, Zometa, radiation, or the cancer. Hard to tell when so much is going on. The good news is- it's working! They no longer want to pin both my legs so they won't break. The pin in my arm is feeling better. My back and hips... Well, they will come along.
Hang in there sisters!
Deborah -
You all are scaring me. I have had my big girl panties on through rads, but now that I'm nearing the end of rads I'm staring down a 30-day sample of Femara. I'd love a break to recover a bit from rads. And now here's the pill with the big SEs. My tumor was 100% ER +, so I know I'll have to have some sort of AI. Beyond that, I haven't done my homework on AIs; too busy resting from two surgeries and then rads. I was so taken aback by my RO giving me the Femara today that I didn't even think to ask her about Femara vs. Arimidex, so I guess I need to do some reading on these threads.
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Maybe484-by all means read up - - - I'm doing OK on Femara - 20 months for me so far.
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Maybe, they scare me too, but so far, after 5 months I haven't had any side effects. It seems to work best taking at night and along with Vitamin D3. Excersize seems helpful too. Some people don't get any side effects. There is only one way to find out and then if you do start having problems look into your options then. I can only say that the stuff works. I have not had my tumor removed yet since we are waiting to shrink it and it has been reduced by about a third in this time. I love taking it at this point, but you never know what's around the corner. You've been through the rough part I imagine.
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Maybe and Sherri, I have been on Femara since October last year and other than a bit of fatigue I have no other SE's. It is possible to take these meds and get no reaction so the best thing I can advise is give it a try, if the SE's are bad for you, you can always stop or change to something else.
I was on Arimidex before Femara and it gave me hell but I'm doing this one easy.
Love n hugs. Chrissy
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Well, I am almost at the two month mark. I am taking my calcium with vitaminD with every meal. I too have knee, hip and ankle pain. My toes are still numb from the taxol and I dont sleep well either. Some days I feel like rosannadanna. (My feet hurt, my knees hurt, I have agita, and gas)
Other days are way better. I spend part of every day in the sun cause I have a pool and its the best part of my day. I'm italian so the sun hasnt bothered anything but my lympedema and I am willing to deal with that.
Doc put me on amitriptyline for a month. He asked if I was depressed and I said I wasnt. Just angry that its been a year and I still feel like crap. I take it at night along with the femera. I have been sleeping a bit better.
It certainly isnt a disease for weanies....Big hugs to all of you.
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Have´nt much time to go into things ( should be cooking dinner ! ) have any of you ladies been on the generic form of Femara .....Letrozole ?
I´ve been on both and would love to kow if any of you have had the same experiences as me . Will hopefully post tomorrow .
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I started Letrozole about 2 weeks ago. So far I see no difference.
Onward-love, "It certainly isn't a disease for weanies!" I want that on a Tshirt.
BREAST CANCER-NOT A DISEASE FOR WEINIES!
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Well my onc changed me too generic arimidex. I ask if this did the job femara does. She said they were same that femara was first one to come out.I ask why was difference in price generic femara is $1239.00 and generic arimidex it is $117.00 for 90 days supply also.She the only thing was drug company everything else was the same just the price.Which both copays are $26.00 BUT I AM ON MEDICARE PART D AND WITH THE ARIMIDEX I WILL NOT FALL IN DOUGHNUT HOLE!!! HOPE THEY ARE SAME I DONT WANT MESS UP GOOD THING KEEPING CANCER FROM COMING BACK
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I'm amazed, though I shouldn't be, how oncs downplay the SEs of various treatments. I see a team of docs at a nationally recognized comprehensive breast cancer center associated with a teaching hospital. And yet.
Yesterday my RO suggested--to my surprise--that we cancel my five boosts and end with my final rad tomorrow (still ambivalent about that, since I for sure don't want a local recurrence, but my axilla--where my tumor was--and my arm are both swollen and my axilla very very red). But anyhow, she just casually handed me as I was leaving a 30-day sample of Femara with a P.S. of "oh, you'll want to take Calcium and Vitamin D and set up an appointment for a bone density baseline scan and with Dr. F (the team's MO)."
I'd prefer to have the scan before beginning the AI and would prefer to meet with the MO before taking any AI. That seems more--dare I say--logical. I have lots of questions, such as why Femara (as opposed to other AIs), how much calcium and D, what if I decide not to take an AI at all--what is my risk of recurrence, etc.
I called his office to ask if there would be any harm in delaying taking the Femara till I met with him (the RO wanted me to begin it immediately) and received the following circular non-answer, via his nurse: "I won't know until I evaluate you."
Thanks to those of you who've had the patience to read this ramble from an increasingly emotional and frustrated person at the end of her rad rope and facing the prospect of going even more postal, i.e., post-menopausal. Those of you who've had lumpectomy/rads, when did you begin your AIs? During? After? Or did you choose or were you allowed a window of recovery before beginning? TIA!
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Maybe-- i started femara 3 weeks after my last chemo. Then started rads about 3 weeks later. Noone ever even mentioned to me to take calcium & Vit D. I started Vit D3, 5000 iu a day after I asked to have my level tested and it was 31.
Oh, just reread your post...I didn't have a lumpectomy/rads, I had a mx/rads......hope you get some answers soon.
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Maybe, sorry for your frustration but it is very understandable. You asked why Femara as opposed to one of the other AI's which are Arimidex and Aromasin. They all do exactly the same thing but are put together a little differently and docs sort of have a favourite that they like to use first. For me, my doc started me on Arimidex. They all bring very similar side effects and there is an added one with Aromasin because it has a steroid base and of course brings the SE's of that.
The dosages for Vit D and calcium depend really on your levels and that needs a blood test to determine. The usual for people who have a normal level is 500mg Calcium and 1000iu of Vit D but should your levels be low, you could need a lot more. The reason it is recommended is for bone health as it is these two that help the body to put the calcium into the bones where it belongs rather than excreting it through the kidneys. The DEXA scan (for bone density) will give a baseline that can be checked to make sure you are not loosing too much bone structure due to the meds and is a good idea for everyone over 50 as we do loose bone mass as we age which leads to osteoporosis.
As to your risk of BC return if you choose not to do an AI, I'm sorry I can't answer that one. That question belongs to your doc but I do hope I have helped with the others. Goodluck!
Love n hugs. Chrissy
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I was put onto letrozole the generic form of Femara , as soon as I saw the onc after my lumpectomy , before I started rads .( did´nt have chemo .) Each month I would go to the same pharmacia and was usually given a different generic version . All in all , over twelve months , I was given five different generic forms of Femara , these came from five different laboratories , 2 from barcelona ,one from Madrid , and two from different laboratories in France .
I suffererd from so many s/e , my breathing got really bad .....two inhalers twice a day , my chlorestrol went sky high ..................tablets , started having palpitations , a rash and spots appeared on my skin , Urinary infections and dreadfully sore and swollen in that area . Bloated , with diahorrea evrey day . Plus the dreaded hot flushes , , every hour on the dot ..................take one tablet three times a day . That worked to the extent that I only have a hot flush every two hours ! You live your life , and tend to put up .
Then , one day at my pharmacia I was given a box of Femara . Did´nt think anyhting of it , but within 10 days , I noticed a big difference. My breathing was soooo much better , the air of doom and gloom that had been hanging over me lifted , and i felt more like my old self . My genital area began to calm down , my face cleared up , life began to look better . Hot flushes , the same in intervals , but although intense , over quicker . The downside is the joint pain and swollen ankles and fingers .But I can put up with that , I just feel so different .
So whats my problem ?
Spain´s austerity measures mean that only the cheapest drug will be prescribed . So Femara is off and the cheapest generic version is the order of the day .
Just as I find the pill I can cope with , so I´m told I cannot have it . The generic versions don´t do it fore me , maybe one is better than another , but certainly there was not the instant difference that i had with Femara . Also , there´s no continuity , one month this , then the next month that .
Some ladies get on very well with generics , they don´t have a problem . I do . Maybe its the fact that I´m intolerant to several foods , ie lactose , egg white , peanuts , lettuce . No idea , but my life is going to be very difficult now as I have to decide what to do . try and pay ourselves for the femara every month , go back on a cheap generic version paid for by the state , or give up the AL´s altogether .
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Jackwagstaff I'm really sorry to hear that you are having so much trouble with the generic versions of Femara. The Letrozole, wich is the active ingredient has to be the same in all brands it's only the 'other' bits that they add to make the pill their own so to speak that often cause the problems. Is the price very expensive for the 'real' Femara? I don't know what your Dx line is but it might be worthwhile to speak to your doctor about this. If the choice comes down to giving up the AI's altogether, perhaps if you ask what the percentage of possibility of return for you would be.
Love n hugs. Chrissy
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Jackwagstaff,
As a RN, I can say it seems you are 'allergic' to the generic forms of Femara, which could be life-threatening. As you are intolerant to several foods, it's no shock to me.
Ask your doctor to write to the government for an 'exception' and that you MUST take Femara or your life is endangered yet the generics have shown you are ALLERGIC to all of them.
If this doesn't work, consider getting your Femara by ordering from a pharmacy in Canada via email (your can post your prescription) Many people I know in the US get their drugs from Canada and save hundreds of dollars.
Whatever, don't give up!
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Thanks Chrissy and Justa , interesting that you are both from OZ ! It´s exactly right , the active ingredient , ie letrozole has to be identical , but the shell , filler , etc can be different , plus sometin¡mes even the active ingredient can be sourced from different places . Read an awful lot about it lately and it does´nt make me fell very secure about my generic meds . A lot of the stuff is now being sourced from China and other , to my european mind slightly suspect areas . I spoke to my oncologist , but he just seems to take the view that this is what is happening in Spain and that we must all put up with it . I just wish I could . I don´t want this stress . We all have enough to deal with without problems with our meds . Are you all still able to have the "proper " version , or do you get put on the cheaper generic brands ? The UK still has Femara under licence , but Arimidex has just come off causing a lot of problems for the women who find the generic forms , incompatible .
I did look up the cost of buying on-line , but it´s much more expensive than buying direct from the pharmacy in Spain , here it has come down from 169euros to 97 euros , May not sound a lot , but my husband is on a pension , and I don´´t get mine for another 12 months .
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Here in Australia we have a choice to get the 'proper' version of medications or the less expensive generic brands. If you are on government coverage for medications, as far as I know you have to take the less expensive generic ones as you get them free of charge. If you are buying without government help, you can get which ever one you want and just pay for it.
No, we all sure don't need any more stress or illness!
Hopefully you can carry the cost until you get your pension starting to come in. Good luck!
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Justagirl, I'm on a pension with a Government health card and I pay $5.60 p/month for thé 'real' Femara. I have never been offered a generic for any of the cancer meds that I have taken but for all other drugs, antibiotics etc I have a choice but what ever I choose my price is always $5.60.
Jackwagstaff, Justagirls suggestion about trying to get an letter from your doc that you can take to the Gov. Health Dept. there stating that you cannot take the generic due to ill effects but the real Femara is okay. I don't know how these things work in Spain but here, you can under special circumstances get very expensive medication under a licence number from the government that still only costs the normal for any Px. Does that make sense? I'm wondering if you have something like that there.
Good luck with it all.
Love n hugs. Chrissy
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chrissy,
I'm not on a pension and my husband isn't either, but due to his age he has the same health card you have. What I have from the Gov is after buying 50 scripts in the calendar year, all I need on the PBS list are free for the rest of the year. My sleeping pill, Stilnox, isn't on the list and costs me $27 every 14 days.. Tried your suggestion for Melatonin and 7 pills at 2mg each cost me $19 - too expensive for me, even though I thought they worked good but I was groggy in the mornings.
Had a double mastectomy with a lat dorsi flap in March with reconstruction, so needed medication for that.
When I go into the chemist tuesday I will ask them what I have to pay if I want the 'real' Femara.
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Justagirl, I can PM you a web site where you can get the Melatonin for a lot less than that and you only need either 3mg or 5mg. 14mg for sleep was too much and that is why it left you groggy. If you want the site or a bit more info just let me know and I will send. When I say cheaper, 120 pills for $16.95 for the 3mg and one per night is enough.
I also have the safety net ceiling with the meds and once we reach the limit all my meds on the PBS are also free. I reached it in December last year and it rolled over to start again in January.....I laughed when I got the notification that I had reached the ceiling two weeks prior to the new year.
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chrissy,
I only took 2m tab of Melatonin at night. Still would appreciate the website. Does it leave you groggy in the morning?
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wish I could start the safety net at the beginning of the year! Some of my scripts before the safecty net kicks in are $37 and $42 a month! The net limit used to be a dollar amount, now it's number of scripts..
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Justagirl, well there you go....lol.....I didn't realise that the rule had changed from dollars to numbers. When did that happen? The Melatonin doesn't leave me groggy but it did a little for a week or two but not any more that's why I like it so much because it doesn't make me feel drugged in the morning like sleeping meds do.
The site is www.biovea-australia.com and for Melatonin it can take three or four weeks to get to you so don't panic about it being slow, it actually comes from overseas. You, like myself could well find a lot more of the products to use as they are a lot cheaper than the shops which allows me to use some of the ones I was stearing clear of due to price.
Love n hugs. Chrissy
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Chrissy,
You are an angel! Thanks heaps. Deb
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Maybe484: I started taking Femara about 3 weeks after finishing my rads. I've been taking it now since May 4, 2010. I chose to take Calcium & Vitamin D3 on my own since I received no advice from my MO. However, she ordered a complete bone scan after my last visit - which came back "normal for a woman my age (63)," and before my next dr visit, I am to get my Vitamin D levels tested.
My biggest complaint right now is the size of my abdomen. I've always exercised, but my stomach has just become huge!! Could reducing estrogen do this, or is it just part of aging?
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Hi Emegram, your body needs estrogen to function corectly and when the AI's deplete us of it, our bodies increase the amount of fat in the sbdonimal area so it can convert part of that fat to an estrogen. So it becomes a snake chasing its tail, the meds stop the estrogen and the body compensates by storing more fat. So the answer to your question is yes to the reduces estrogen and also yes to the aging as after menopause, the body tends to do the same thing except not to the extent that we have now. Good on you for taking the initiative on the Vit D and Calcium and I hope your levels are good on your next testing.
Love n hugs. Chrissy
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Thank you for your reply, Chrissy! I believe your remarks are exactly right about our bodies storing fat in the abdominal area after menopause & then adding the AI's only increases this fat problem. Very frustrating at times!! But I try to find reasons to be grateful and count my blessings! And I have many!!! God bless!
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You said exactly what I´ve thought since I started taking Letrozole / Femara . I just feel that my body is fighting the medication all the way . that as fast as the meds ae trying to deplete every last vestige of oestrogen out of every little nook and cranny , so my body is saying " hey , I´m not having that !" and desparetly laying down as much as it can .
I´ve put on quite a lot of weight since taking the meds , on letrozole my midriff just turned into a huge spare tyre , ( going down now on the Femara ) I seem to be laying down fat as if it were going out of fashion !
I´m fed up of my body fighting itself . Yes I´m grateful , yes I love life , but five years on this , at my age (60) it´s taking away quality time and quality of life .However , I suppose it depends on your dx , mine was good cos it was caught so early , and for that I thank God .
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Jackwagstaff Novartis is the drug co that makes femara. On there web page they have info about supplying the drug for people who cant get the drug. Plus a phone number to talk to them directly. I would try that and maybe you can get the drug for free.
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Jack I'm on it until it stops working for me, but I hear what you are saying re the spare tyre around the middle. The rest of me has a bit of ectra weight but I had that before the Dx but the middle bit? that has decided to settle in and is definitely not moving no matter what I do. I think I'll just change the style of my clothes and accommodate it!
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I took the brand name Femara for 3 1/2 yrs. My health plan switched me to generic lotrazole a few months ago. After seeing this forum, I realized that I am getting alot more hot flashes than before! Could it be the generic lotrazole????
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ihopeg, if the changes have come since changing from Femara to Generic Letrozole I would say that you could blame the meds. Hopefully, as your body gets used to the Generic, it settles a bit for you and goes back to what you were having or less.
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Anyone have recommendations for vitamins or other supplements to take or not to take while taking Femara/letrozole? My doctor didn't say anything. I'm going for a bone density this Friday...
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Hi NewatThis, have you ever had your Vit D levels checked? If not, ask your doc to test them as it is important to know what they are. I take Vit D, Omega 3, Magnesium for my bone health and a lot of others take Glucosamin, Condroiton and Calcium. I also have arthritis and these help with my joint health as well. For the natural ani-inflamatory, I use Boswellia Serrata and find that fabulous.
Good luck!
Love n hugs. Chrissy
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My brain has been in overdrive recently.
Why am I taking Femara still if I had a double mastectomy in March and when they did the Sentinel Node Biopsy last year (with my lumpectomy) it was negative. I do realize my tumor was a Grade 3 and classed as aggressive and invasiveand I am estrogen and progesterone positive, but I don't have any breast tissue left?
I would appreciate your input. I am just having a rough time with the hot flashes, joint pains and not sleeping well.
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Estrogen is produced elsewhere in the body not just the breasts.
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Debbie, the reason you are on Femara after doing all the neccessary treatment is to try and ensure that the cancer does not return. Even though your nodes were negative, that is not the only way that cancer can spread.......it also moves through the blood stream. We think that the chemo is going to kill off each and every loose or stray cancer cell but this is not always the case so this is why we are given what they call adjuvent therapy to give you the best chance possible of staying cancer free. It is sometimes difficult to put up with the SE's of the drugs but you actualy have to make a choice.........possible return of BC or a drug that makes you feel aged and achy?
Do you take any supps to help with the SE's at all? Also, you do have the ability to change to a different AI if you think a change will be better. From my experience, I had problems on Arimidex but on the Femara I have virtually nothing. There have been a lot of women that have had problems with Femara, changed to Arimnidex and are virtually SE free. There are always options.
Love n hugs. Chrissy
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Thanks Chrissyb. Just curious, why an anti-inflammatory? (just curious because I'm having nasty chest pain/heartburn/ and wondered if it was from the meds). I must be getting good calcium from all the Tums I'm taking!
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Newatthis, I take the anti-inflamatory because most joint pain comes because the tissue is irritated and inflamed and the anti-inflamatory settles the irritation and in doing that, relieves the pain somewhat. The pain that you are having needs to be checked out by your doc, any chest pain needs to be checked. Your heartburn is more than likely from you meds but rather than eating Tums continuously, there are other tabs available to settle the acid that is causing it. Again, this is something you need to tell your doc. Unchecked, an excess of stomach acid can cause other problems and scar your esophagus which is something you don't want to do.
A glass of milk, a small tub of yoghurt and 30g of cheese per day is enough calcium but if your body does not absorb it properly, having more will not make any difference. Hope this helps.
Love n hugs. Chrissy
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amoccia, I thought thereason to decrease the estrogren and progesterone was to quit any breast cancer cells from thriving and growing. If I don't have any breast cancer cells, whats the purpose?
chrissyb; you are a wealth of knowledge and common sense. You are so right and I agree with you. As a nurse I have always believed in doing all one can to fight disease and after all I've done, including a double mastectomy and radiaiton, I would be a fool to not keep taking it.
Yesterday was a really bad day for me depression wise. I got up at 6 and went back to bed at 7 and didn't get up until 11. Just no up and go in me. Too much has been going on at home and I think with the hot flashes, not sleeping and aches I am just worn out and looking for answers. My almost 18 year old son is driving me nuts. My 77 yo dear husband is getting more stuborn and set in his ways every days and less tolerant of our son. Our house has required many repairs as I let everything go this last 1 1/2 years with dealing with cancer so in the last two weeks I have had the tree chopper guys for a day (we live on 8 acres in Doonan, Queensland), the paddock slasher guy, I've mended fences to keep the horses in, the paddock tidy-up man, the plumber to the house twice, carpenter to house, along with shower tiler, shower screen guy, window washer and painter to touch up last years paint to outside of house.
I like my privacy and peace and quiet. This has been too much for me to be at the center of. My dh and I were looking forward to repainting the inside of the house and redoing the carpet and screens in a few months but now I don't have the energy or the money for it. Guess I'm just bummed out. Today is the last repair man for this week and he will just be back once next week.
I want to sit out on my porch, in the sun, wrapped up, sip at a coffee and read my book.
I don't know where you get your calmness from Chrissy but please teach me!
Thanks Chrissy -
Debbie
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I had DCIS/rads. I first met my onc during rads then she scheduled an appt. a month after I finished rads; she wanted me to have some recovery time before starting AIs. Since that was almost Christmas, I got her okay to start on Jan. 1. Started with generic Arimidex and tried for 4 mos; but in addition to the hot flashes and terrible joint pain, I just couldn't sleep; so I tried generic Aromasin. It crippled my hands (tendonitis), and I quit after six weeks. I was off that for three weeks before starting generic Femera; again, she wanted me to have some recovery time. I've only been generic Femera for a week; I don't have the hot flashes just joint pain, so it's the least awful of the three for me. Instead of keeping me awake, I'm tired all the time; I can sleep 10 hours and the next night fall asleep sitting up in front of the TV at 9 p.m. I take 2000 of D3 and 600 mg of calcium + 2 glasses of milk/day; I can't take a lot of calcium because I had a kidney stone a few years ago. My onc said that the bone density degradation is very slow; I had a test after starting AIs and will have another in a year. (There's no significant radiation with that; the tester stayed in the room.)
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My surgeon told me that there is breast tissue beyond what we call our breasts; it extends under our arms and below the breastbone. My rad onc said he has seen cancer recur on the mastectomy scar in women who didn't have treatment beyond mastectomy.
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Hi Ladies: Femara's patent expired 6/15/11. I emailed Novartis to be sure. I was told yes it had expired. That is why you may be getting a generic. I called my oncologist's office today and they were unaware of it. They have samples and are going to give me a 5 month supply.
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Ladies: one other thing. I drink tart Cherry juice when I can't sleep. I saw it on the Dr. Oz Show and tried it. It works like a charm. It naturally contains melatonin. It is also good for a lot of other things. I don't have to drink it every night. I rarely have a hot flash since i started drinking it.You can google the Dr Oz show and put tart cherry juice in the search box to find out more information.
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I doubt if we can get tart cherry juice here , everything in Spain is a fair few years behind everything else .
I don´t think the licence on Femara is finished yet in the UK . They still seem to be able to be prescribed the "real " Femara . Arimidex came off licence there a few months ago .
Justagirl , you´ve been through an awful lot in the last couple of years , and a lot of it involves having other people , virtual strangers taking charge of your life , ie oncologists , surgeons, nurses , etc etc I´m not suprised that you want time to be by yourself and have some peace and quality time of your own . The problem with your husband and son is so typical of "father / sone " relationships . I have two sons , and their father was away a lot when they wer young , he was in the royal navy . However when they did get together , they clashed , I don´t think you can get away from the fact that this is normal , the younger male challenging the older , same in nature . Once your som¡n leaves home , they will become the best of friends , mine did . Unfortunately , you have to live through the interim period .............difficult ! Plus as you say ,. older men , ( mine is 67 ) can be awkward and contrary . You must have some "me " time . have you told your doc that things are getting on top of you ? I would , you cannot sort out everything yourself , sometimes we all need help , but as women , we are not that good at asking for help for ourselves . Hope you have a good weekend .
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Hey ladies..................Tart Cherry Juice.................got it today at Trader Joe's..............really reasonable......big bottle $3.79................thought that was a great price..
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Thanks Chrissy, That was really helpful. n.
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You can also find it at Walmart in the refrigerated section where the milk and juice is. It is a bottle of concentrated that will make 3 quarts.
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mscal - do you drink it at night? I need help with sleep! Don't want to take Halcion the rest of my life. ~ Daiva
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Dr. Oz says to drink it at dinner time. I drink mine about 1 hour before bedtime. My niece drinks hers about 2 hours before bedtime.
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thanks!
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Hi Femara girls,
Taking Femara for 15 months I have had so much SE's that I decided to spend a fortnight at a Medical Fitness Center at the seaside. During the day I have had a lot of treatments: all kinds of massage, baths, therapeutic exercises and I was very tired at the evening. Hoping it will be helpfully for the next months.
I reached BCO from there but cannot login or post. I read your post and felt connected with your questions and answers, dear girls.
Justagirl, I was thinking of you hoping some ladies will come with new suggestions to support you. This board is really connecting patients with BC all over the world...
Best wishes
Usha
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Clap for me ladies................took my first Femara today....................waited 6 weeks, swore I would not do it, but finally bit the bullet..........................I'm very nervous, very scared, don't want anymore aches and pains, nor all the SE that come with this shit, but I will not leave this world without at least trying it......................if I can't handle it, at least I can say I tried..................I'm sure I'm not going to escape the SE's, but it is what it is.......................just hoping for the best.................
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Hi all - my onc told me to take Aleve for the joint pain. I'm sorry, that's just not doing it. I was on Arimidex for 6 months and now Femara for one month. My hips hurt so bad that it makes me cry sometimes. Knees, ankles and now hands. Without some sort of rx, does anyone know what to do for such severe pain? Thanks so much.
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spendygirl.................my fear also............isn't it about quality of life...........i'm trying this crap, but if it causes me worse pain then I have just by being 76........it goes...............I refuse to live in pain...............what the hell kind of a life is that..................I'll take it till I can't take it anymore.....................thus the reason for all the delay...............good luck to you
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spendygirl,
My dr put me on Celebrex, which is an antiflammatory and usually given for osteoarthritis (which I have in my fingers also) to deal with the pain and aches in my hips, knees and ankles and it has really helped.
We really have to be proactive for ourselves so the 'living after diagnosed with BC' does not fill us with dread.
I know I have to stay on Femara for another 4 years, and I understand what it is doing to keep any BC cells from thriving in my body even though I just had a DM in March. I am doing everything I can to stay cancer free and if it requires taking some pills so be it.
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Hey Ducky!! Good for you girl!!! The option is always there to stop should things get too bad for you.
Hi Spenygirl! I have osteoarthritis and need two knee replacements. I started taking Boswellia Serrata about two months ago and am now almost totally pain free.........I was on Px strength painkillers 3x p/day but now take none. Sorry for sounding like an add but that little capsule has done me the world of good! It is a natural anti-inflamatory that doesn't upset my stomach as all other Px anti-inflamatories do.
I'm hoping I can stay on Femara for the next twenty years but I know that won't happen!
Love n hugs to all. Chrissy
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I am suppose to start my FEMARA but I am scared. I decided to give myself a week of "being normal" before I start taking it. My dexiscan came out very good. Is there anyone who has not had any side effects from this medicaton?
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Hi ktam96, I'm one of the people who have little to no SE's from Femara. I have been on it since October last year and other than a sleep issue to start and hot flashes that continue, I feel great. I take the little pill at night so that takes care of the sleep problem for me and over the time, the flashes are becoming less in number, intensity and duration. I also take some supps and believe that they help as well.
Always keep in mind with all of these meds, that you have a choice of others should you find this one too difficult but please give yourself a good few months before you make any decision to either change or stop.
Love n hugs. Chrissy
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I was wondering why my femara discount card expired. I got a prescription for brand necessary b/c I think I am having more hot flashes from the generic, and when I went to pay the $10.00 copay, they said it was expired and I would have to pay $125.00 for the brand. Back to generic and hot flashes. I will see if Onc office will give me any samples:(
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ktab96, I took Femara for 2 years and had virtually no side effects, maybe a little stiffness in the joints, not much and when it got worse in the hips was when I only took Zometa every 3 months. I was on a regimen of Femara and once a month Zometa, I think the Zometa actually helped with a lot of the joint pain. When I was cut back to once every 3 months on Zometa my hips would bother me a little more so we went back to once a month and it seemed to help. I did have hot flashes but, well who doesn't at some time in their life so side effects were not a problem for me and I hope you have no problems with it either. Good luck and keep us posted on how you are doing. I took it for 2 years but then had to switch to Aromasin because a bone scan showed a new spot and markers keep going up so will probably end up doing oral chemotherapy, will find out August 25.
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Good vibes for you jeanieb2!
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Justagirl: I am so sorry you are having such a rough time of it. I mean I am too. This femera is making me angry that at age 53 I cant even put on my own socks. And my fingers curl up at night and I need my other hand to open them. But, my onc said in my case, Femera was a 39% protection of return and since I am a stage IIIc, I have little choice.
For me I am angry. A year ago I was feeling just fine, enjoying my life, family and friends. If someone would have told me that a year later...
...I would always feel the streatching of my masectomy when reaching or lifting something.
...I still have an 7inch by 12 dark grey area, where they radiated.
...I would still be taking pills throughout the day.
...I would lose then regain, but still not have my old eyebrows and hair texture.
...I would lose sensation in eight of my ten toes.
...My arms would swell when ever they feel like it and I would have to forever wear sleeves on a plane.
...Gain a spare tire around my stomach, and let me tell you, it was already a shock to find out what was there before, hinding under my breasts....
...That I would be moved to tears everytime I see a women with a scarf on.
Would I still have gone through the last year? Truly I do not know.
As its been said, many times. This breast cancer is not for weinies!!!
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Whine, whine, whine. Shame on me, I am not normally cranky. Ok, I have increased my calcium and Vitamin D to 3 X a day with meals and it has seemed to work. But at the same time I began taking Advil twice a day , so I am not sure really what has helped. I had pain meds and just said enough and tossed them. Hmmm no longer having problems sleeping although like others, I take my pills at night.
God bless you women....thanks for allowing me to grumble. : )
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I started Femara in January of this year (switched from Arimidex due to bad leg cramps). I was doing fine until 6 months into it. I developed a knee strain in June, and I am now experiencing leg pain, muscle tightness, burning foot soles, hand stiffness, and ankle/foot pain. I am currently having difficulty walking. I feel like I need a walker sometimes. I am 47 years old. My onc said if I have severe side effects, I can stop Femara for a couple weeks and see what that does. I don't want to suffer like this for another three years.
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Met with oncologist today. After two years on Tamoxifen (and chemo induced menopause for 2 years) she now thinks we switch to Femara. My liver enzymes were elevated and my triglyceride levels are high...all other cholesterol numbers are not good as well. Diet and exercise did not do much to change things...has this happened to anyone? Do you take statins? Did your cholesterol improve or get worse on Femara...? Guess I will try it out after Stage 2 DIEP and see if I get any luckier with side effects.
Did you gain or drop pounds on Femara? Hair loss?
Thanks for any input.
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Nowords,
I have been on Femara for almost 4 years. This past month, my cholesterol and triglycerides were higher. Also, I have gained weight and have thinning hair. Since I ahve been on generic femara, I have been having many more hot flashes. Femara is doable though.
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Hi Nowords, I put on with Arimidex but am staying steady with the Femara and the hair started to thin but I take Biotin and that seems to have slowed it right down. I don't take a statin but my doc is watching my cholesterol with an eagle eye........all I see is it's rising
but very slowly. I have heard that this sort of thing is a SE of the AI's.Love n hugs. Chrissy
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onward,
You are so right! You can't be a weinie and fight this BC!
Like you, I know I must take the Femara to hopefully stay BC free. I resent all of the changes I have had to just take in the last 16 months. Insult after insult to my body, mind and spirit. I could kick every person who hasn't walked in my shoes who tells me to remain positive - it makes a difference or : you are so lucky you can get breasts any size you want!
I have had to fight to keep my weight down, yet it has creeped up from 55kg to 59kg. My hair is about 2" long and curly whereas before all of this I had straight long hair. My skin is dry and I have to slather lotion and cream on twice daily.
The hot flashes and muscle aches,pains and stiffness continually are pretty much too much!
It's good we are fighters! When I hear people piss and moan about minor things in their life that if it were me I wouldn't even think twice about it now - well, I just think to myself how silly they are.
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I am an 8 year survivor. i have been on Femara for 6.5 years. Has anyone else been on it this long? My oncologist seems to think that since I'm not having many problems with it I should just stay on it. Anyone else?
Barb
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Wow Sachi, you are an inspiration. Almost 2 yrs here, can't imagine more than another 3 or so.
justagirl, my hair grew back in poodle curly tight, but relaxed back to straight as a board by about 6 or 7 months. I wish the curls would have stayed.
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I was on Femara for 8 months, and got off of it! I had terrible aches, especially in my feet. I developed trigger finger on both thumbs.........I had to have a cortisone shot in my thumbs! OUCH.......... Hurt like hell! I have been taking Tamoxifen for 31/2 yrs.
It seems that I have thickening in my cervix, had a biopsy, and waiting for results. I am seeing that this is not unusual. I am do not want to develop more problems from this drug.
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Hi Annmarie and welcome to BCO. I'm one of the few who are allergic to Tamoxifen so I can't help you with problems it may cause. It seems that all the anti-hormonal drugs have a propensity to cause us problems one way or another and a thickening cervix and uterus are just two. Sure hope your results are of the good kind!!!
Love n hugs. Chrissy
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Thanks for the input ladies. I am thinking I will stay on the Tamox for now...I finally got used to it and the cholesterol issue seems to be a factor with either drug...
If I knew for sure that the nastier side effects were reversible, I might be more inclined to try it.
Disease free survival is good, but does anyone have info on the overall survival with Tamox vs. the Aromatase Inhibitors?
Not sure that the % of benefits outweigh the risks between Tamox and Femera. Quality of life is important. Does zero estrogen equal accelerated aging? So many of the side effects seem like aging rapidly to me...
I am certainly glad to have the choices that I have...seems with my stats it is worth taking something, just seems safer to stay with Tamox until if and when it fails and then move to something else if that is the choice...
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Nowords, with all the anti-hormonals you will get extra dry skin, skin that looses elasticity and looks crepey as well as the tummy tyre that often appears on elderly women so in answer to your question.....yes, unfortunately all these drugs give us the accellerated aged look. There are things you can do to make the best of this situation ie good healthy diet, good skin care and moisturisation, exercise. IMHO, this is way better than the alternative.
Love n hugs. Chrissy
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Chrissy you are so very sweet. Thank you for your input. I'm going to try the Boswellia (sp?). I'm just going to put this out there..I am not the same person I was even six months ago (started Arimidex in Dec, switched to Femara one month ago). Besides the God-awful pain, I'm so fat, so fatigued, and I can't seem to remember things. I also have trouble saying what I mean to say at times, like I know what I'm trying to say, but I can't make the words come out. Anyone else have any of these side effects?
Thanks so much, Tracye
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Does anyone have a hard time with remembering when to pay the bills or if we have an appt I will miss since I can not remember from one minute to the next!
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Thanks chrissyb...you have posted good info on many of the threads.
I have said that I want be around long enough to have to worry about long term side effects...so I hear you about the alternative...
The cumulative effects of the chemo, rads damage and lymphedema diminished quality of life and I learned to work around it and be thankful that I am still around. I am a 'just deal with it" kind of person. My liver enzymes are increased on tamox and all of my cholesterol issues have worsened since cancer treatment, despite diet and exercise. Heart and Stroke are in the family history. I do not smoke; my perfect blood pressure is erratic after treatment...so while I know I need to take advantage of what I can with the hormonals, I would like to do it as educated as I can be, so as not to survive and degrade my total health along the way. I need to stay NED and try not to destroy my heart, joints, bones and cognitive skills in the process...
The overall survival and NED survival stats in all of the studies really interest me...what do they really mean? Is it really as simple as "this combo or sequence of drugs kept group A disease free longer than group B, but no difference in how long A and B lived? If that is the case, then the risk vs. benefits are even more important. I want to live life as well as survive.....I am greedy
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Nowords, if you are greedy because you want to live a long healthy life, then so are we all! but we can only do the best we can with what life has dealt us. To tell you the honest truth, other than when I was Dx'd in 2003 I have not looked at statistics on anything. The studies are carried out only on a particular portion of the overall community to get the answers that they do and yes, there are benefits to them being done overall as I am the one who benefits in the long run. But when you get down to the absolute bottom line, just because X did well on that regime does not mean that Y will to so as far as I can see and this is just my opinion it comes down to what works for you and to find that, sometimes it is trial and error.
Love n hugs. Chrissy
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Hi moyarscs
Yes, mental disorder is one of SE's from chemo with Taxotere as from Hormonals too. Must to say my short memory after therapies is gone. I'm trying to improve it with exercising.
We'll see. Take care!
Greetings
Usha
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I often say to people during conversations " I can see the word whipping through my brain, I just can't catch it in time to say it" - you know what I mean, I know what I want to say I just cannot get the word(s) out, and yes I can be mid conversation and forget what I am talking about completely. I used to be able to memorize phone numbers and names but now .... not so good. Oh well. Looks like it's more than just you and me, spendygirl, that suffers from this side effect so it's a comfort to know we are not alone.
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chrissyb,
I know what you mean about not looking at statistics. I know that it is all trial an error on an individual level. I am a research junky by nature. Science is fascinating.
You seem to have made peace with the realities of living with breast cancer. On my best days I have, but a bit over two years since diagnosis, sometimes I think I vent by gathering data! LOL
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Nowords, I have long ago found my peace with the realities of living with BC as you say. I too love science and always have but not on the research side although that is facinating. I think if you can find something that soothes you when you are having a not so good day, and the good days far outweigh the not so good, then you are well on the way to finging your own peace and that is always a good thing.
Love n hugs. Chrissy
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Ok as far as memory loss goes, It was worse for me when I was doing chemo. But, since I am already post menepausal, who's to say if it's related to age or cancer. Duh, I remember complaining in my 30's that I could not remember a name for anything.
My hair is also thinning. My onc says its rare. It may be that the ladies who are having difficulties post and the ones who are sailing through are, well sailing through...
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Does anyone have zometa infusion while taking femara? How often do you take them?
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I've been on femara (generic) for about 10 days now. I'm also on zoladex to shut down ovaries.
I'll be having my first zoladrenic acid infusion in the next few days (aclasta which is 5mg) and its going to be just once a year.
I'm having it because my hips are osteopenic (I'm light build & active- my G'mother was osteoporotic)
I was told it helps prevent recurrence too, yay.
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Hello! First I would tell you not to necessarily expect side effects. It's so hard, with side effects that mimic normal aging issues, to tell if it's the drug or life. That said, I believe I have had a number of issues -- from very dry skin to foot, knee and now back issues that could have kept me from the active life I love. I have been on Femara for four years now and I guess, though I could have just stopped, I also believe it's really working. So I have about ten more months and I will stick it out. I come from a healthy family with absolutely no joint issues and I have plenty! I have piriformis issues, foot issues -- you name it! My biggest issue is an oncologist who really has no direction or answers. I don't think they have much experience dealing with those of us whose only issues relate to the drugs we are taking. They are busy taking care of those with active cancers! I am still looking for a general practitioner that I can actually talk to, but have had no luck. I think that is the biggest issue -- more than the side effects. So these forums give me lots more information than I ever get at the doctor's office! But honestly, don't read the side effects unless you think you might be having an issue. If you are like me at all, reading about them can sometimes create them if you know what I mean. Every drug has a really long list! Hope this helps...
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It´s good to know that I am not alone , that there are othre ladies out there with the same s/ e as me , so I am not "making it up " or "over reacting .." I´ve changed from generic to Femara . The s/e are quite different . Mainly it is now joint pain , ankles are the worst and make me look as if I cannot walk properly , toes , feet , knees ,elbows, fingers the list goes on , I really hope to be able to put up with these by excercise . Hair loss , quite marked , awful to pull it all out of the plug hole , but I sweat so much I have to wash it every day . Have I put on weight ? Is the pope a catholic ?! Far too much and struggling to lose it .
Yes, I agree this drug regime does speed up the aging process , which is sad . I want to live , but I want to be able to enjoy my life now , not put everything on hold until I finish Femara and then hope .............that I might return to "normal ."
I don´t like the fact that when Nanny sits on the floor with Sam and Abi , she has one hell of a job getting up again ! And as for playing "chase " ...........no chance , I cannot run .
I´m 60 going on 80 !!
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Hi cyclepath and jackwagdstaff,
You are so right saying how our oncos are dealing with complains about our SE's. I'm sure - thru all years - they know all about, but couldn't react, hormonals, with all SE's, are accepted as official healing and so it is! They are being ill at ease knowing they couldn't do anything.
Active cancer healing for them is more acceptably.
To be a medical oncologist with omniscience is a hard profession.
Wish acceptable SE's to all BC sisters!
Usha
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I'm so excited I just had to post... I've been on Letrozole for 2 weeks and so far my only SE is some diarrea (knocking on wood). My insurance doesn't cover prescriptions but gives a discount, so last month I paid $435,00 after the discount and an online coupon. I just called Costco and they have it for $22.48!!! I couldn't believe it so I called another Costco and got the same price quote! This is such a blessing as we are self employed and were already financially strapped before my diagnosis. I'm hoping this information will help someone else.
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Seashelly that's wonderful news!!! Here's hoping your side effects stay minimal!
Cyclepath: I have talked to my onc and he told me to take Aleve. I mean, I can't walk most of the day, sometimes it makes me cry. I honestly think these drugs are performing so well and there are so many of us living longer, that they really don't know how to treat the side effects successfully. I think I'm going to go to my primary doc soon and see what he has to say.
Blessings to all, Tracye
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I was on femara for 2/12 yrs. i have medicare part d and for generic i pay my copay 27.00 for 90 days but the total was $1239.00 toward my part d so i could only get it for 6months. then i went in doughnut hole. So after checking i can get arimidex for $10.00 for 90 days and only $120.00 toward part d. Talked to my onc and she said the switch was fine they both do the same job.I asked why such a big difference in price.She said the drug company.
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Nanna , is the Arimidex the real one or a generic ? I ask , because if I want to continue on Femara here in Spain , it is going to cost me 97euro every month . I can have the generic letrozol free, but despite having been put on five different ones ( not my choice ) none of them suited me , I´m better ( despite the real painful joints etc ) on Femara. However , we are pensioners and cannot really afford it .
My onc said that he could change me to Arimidex , but I have´nt yet found out the cost of that ,your post has given me hope . I don´t mind trying Arimidex , so long as I´m not palmed off on another load of generics from God knows where . I think I´ll pop into a few pharmacies tomorro w and see whats cooking .
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The armidex that i get is generic. I have been on it for a week and i can tell no difference. Still have some aches and pain
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Seashelly, I kind of know what you mean about diarrhoea from femara. Mine's not quite but close! Also have bloating (slight) but gynae says zoladex does that- thinking of oophorectomy sometime if this regime brings tumour markers down (gynae says less severe SE's with ooph).
Nanna, how often are you having zometa? (zoladrenic acid, like aclasta I guess). My first will be monday.
So far my SE's on letrozole (generic femara) are minimal- no hot flashes yet, a little stiffness when getting up after sitting down for a bit...but early days.
Luckily the letrozole & zoladex are funded for me here, but I have to pay for the aclasta ($750!- yikes, thank goodness its only once a year!)
Do SE's lessen after your body has gotten used to the new drugs, or do they worsen or stay the same? I guess it depends on the person?..
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I have the zometa infusion every six months
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Have you started yet? If so, any SE's? Are you on it for bone density too? So many questions...sorry!
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Yes this is my 3rd infusion and it is for bone loss. Yes I had flu like symptoms for about a day. Drink plenty of water the day before that helps on the pain.It not bad just uncomfortable for few hours.
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Ladies, I recommend seeing a naturopath for advice on dealing with side effects. I have also seen a physiotherapist. Some ladies say that complementary therapies such as accupuncture also help. I may try that in the future.
My main side effect after a month is joint pain and stiffness. My naturopath recommended omega 3 and magnesium. I am sure exercise is also very important. -
Thanks for that nanna. I will be sure to drink heaps!
Racy, is the omega 3 & magnesium making a difference? I guess it might take a while to kick in.
I'm thinking of starting a pilates class, might help to, can't hurt anyway (I hope).
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KT66, my joint pain is mainly on moving from a lying or seated position to standing, or changing position in bed. I only started Femara 3 weeks ago. I try to take the supps every day but have been away on holiday this past week so missed a few supps due to the changed routine. I believe taking omega 3 is supported by some of the articles on this site for multiple reasons and plan to continue taking it. The magnesium did seem to help with some minor nerve pain that I had after chemo, or perhaps it went away on its own.
I am continuing to search for remedies for the joint pain, whether they be exercise related, medication, diet or complementary. That's why I am reading this thread :-). Will let everyone know when I find my cure. -
Hi Everyone,
Just a quick update (I rarely post), I have been on Femara now for 9 months, and I feel really really good. My memory has gotten better, and I have been running almost everyday.
Hoe you all are well!
Take care, -
That is really good to hear. I started taking Femara this week. With the exception of a dull headache, I feel pretty good.
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Ok ladies, Not sure what my next step is yet but checking other forums out just in case... the MO just had me get off Arimidex a week to see if the constant headache for 8 days went away... it did go away...now he wants me to get back on it to see if the headache comes back...if it does, he wants me to get off it and call him... it only took 3 days for the headache to show up the first time.... I really don't want to play the drug roulette
... so for the ladies that started with Arimidex - if Femara any better??? or will headache come back? -
Esther, I started with the Arimidex and had all sorts of problems with it but have had almost nothing with the Femara. The only way to tell is to try.
Love n hugs. Chrissy
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Thanks Chrissy that is nice to know...
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My headaches stopped. I am on Femara for about a week and a half. No other side effects to report. I hope this trend continues.
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Hi again. Well I had my aclasta (zoledronic acid) infusion on Monday & have only just resurfaced from my bed...Thanks for your tips, nanna, I'm sure it would have been worse without them.
I managed to drink lots beforehand, & on the day of the infusion, but woke to nausea & vomiting, a splitting headache, abdo pain and achey hips/femurs. So much for keeping up fluids, I could only have sips of water & couldn't take pain relief. As I was home alone (hubby at work) I couldn't find the energy to organise help & just lasted thru the day.
Luckily I got DH to go to the medical centre the next day & get anti-nausea meds & easy to swallow pain-relief. That really helped, so good not to feel nauseous & to have that headache gone! It was like going thru chemo again. Finally I could drink again & flush that stuff out!
My GP ordered a blood test, she thinks it may have been a virus- but I think not!
So ladies, anyone going onto zometa/reclast/aclasta I recommend having anti-nausea meds & easy to swallow pain meds handy...
lesson learned! -
I was feeling so yuck I haven't taken my femara for 2 days, naughty!
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My joint pain is definately getting worse , as is the swelling around my ankles , my hair is visably thinner , however , my inner self , feels better on Femara , so going back to playing generic roulette is not an option.
I do worry that starting on Arimidex which seems to be what I will have to do as cost wise the "original " Arimidex is considerably less than the "original " Femara , I just hope that it's not opening another Pandora's Box , because Ladies , I can tell you , I am heartily sick of it .
For those who take any of the AI's with little or no side effects , I really do envy you , I , on the other hand , like many others seem to be looking at another 5 years .....3 left !! ... of misery .
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Having my zometa infusion in about 2 weeks.Shew i will be glad get this over with
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Hi, I have changed my user name from KT66 to kt1966 as I thought KT66 sounded like I was a shouty 66 yr old, but I'm not! I'm 45!
nanna, have you found the zometa gets easier (ie fewer or less severe SE's) each time. I'm sure hoping that's the case after my aclasta infusion. In the midst of it I vowed not to have it again, but I hear it gets easier after each one.
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Hello ladies,
My name is Jane and I have been on Femara for about 10 months not escaping all side effects but not having severe physical problems. Lately my issues are emotional and I suspect depression. Has anyone else experienced this? I am 71 with a husband who has early stage Alzheimers which also are factors.We are used to having active lives -- golfing,fishing,RVing which we have given up. I am trying to develop a positive attitude for our remaining years but sometimes it is difficult. Please tell me that it gets better.
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Jane, how nice that you aren't having too many problems physically. When I switched the pill to night-time, I noticed an immense lessening of problems-mainly fatigue. Now that Femara is generic, I'm noticing an increase in some SE, but it's still do-able.
I'm 57 & don't have a husband who is worth calling that name & he hasn't been in my life for almost a full 8 yrs-Thank the Lord. My father has Alzeheimers however & has been dealing with it for over 10 years. He was started on Aerocept (sp?) pretty much out of the gate & that has helped with the mental/memory troubles up until about 2 years ago. His physical problems are what slowed him down-he was a fanatical golfer until spinal arthritis stopped him in his tracks. I hope you are able to find peace in your situation and that life will still offer lots of good memories for you.
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Dear Jane - I have been on Femara for 11 months and have had the usual side effects of weight gain, joint pain and stiffness, and increase in my migraines and terrible hot flashes, along with more than usual emotions like being a rollercoaster and quite a bit of depression. As an RN I know this is all to Femara and partially to having had a DMX with reconstruction in March and thinking I was all finished and to now requiring one or two more surgeries......and no sex life since I was diagnosed. Even though I'm 58 and my husband is 77, until BC came into my life sex was an active part of our life. I think more than anything t he Femara taking all my female hormones out is the villain.
I've now lost weight, exercise daily and try to not hide in bed with the covers over my head too often.
As to you, your husband having Alzheimer's is enough to make even the strongest woman be depressed, and as the doctors told you, it doesn't get better. I think maybe your worst fear is he will wander from your home and not be able to find his way back or that even in your home he will hurt himself. You need to get help in monitoring him so you can get out and walk or even go into a room, shut the door and read a book or meet with friends. If you don't have family who can spell you on a frequent basis, then ask friends. If not an option, look for a home health carer for him. I'm only talking about 2 or 3 hours a couple of times a week. Here in Australia, we have centers where people with Alzheimer's can go for a few hours or the day and be with others like themselves in a sheltered safe environment.
Please look into getting respite as you need to take care of yourself so you can take care of your husband. I'm sure the Femara sure isn't helping with your depression but we all need it to starve any breast cancer cells that might be lurking in our bodies.
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To all of us who are experiencing the dreadful side effects of Femara and other aromatase inhibitors: Be aware of the risks and make sure the benefits from the drug are worth it.
I was diagnosed with ER+ b.c. in 2004. Had a lumpectomy, chemo, radiation, and then took tamoxifen for five years. The side effects were unpleasant (joint pain, hot flashes, weight gain, etc.), but mostly they were tolerable. When I completed my five years on tamoxifen, my oncologist announced that she wanted to put me on Femara for five years. !!! Okay, okay. None of us wants a recurrence of our cancer, so we do what the docs recommend.
I took Femara for one year (just stopped three months ago). During that time, I became a cripple. The joint pain was (and remains) unbearable. I can't stand up after sitting for any length of time. My knees are so painful, and the cartilage in one of them is completely gone. I walk with enormous pain, and stairs are a nightmare. Both of my shoulders are killing me, as are my elbows. Then, I developed trigger fingers. First just two of them. Now I have four of them, despite having stopped the drug months ago. The pain and stiffness in my hands and fingers keeps me from being able to pick things up, type, write, cook--essentially I can't do anything that requires the use of my hands. I live on Percocet, which helps minimally, but it's the only thing that gives me any relief at all. My hair started thinning immediately upon starting Femara. I have vaginal atrophy. My cholesterol, which has always been below 170, went up 50+ points in the one year I was on the drug. I'm 59 and feel like I'm 95. I can honestly say this drug has ruined my life.
I thought about stopping Femara, but I was afraid, like everyone, that I was risking a recurrence of the breast cancer. Then I started doing some research on my own. Most of us are aware that studies supposedly show that the drug reduces your risk of a recurrence by 60%. That sounds huge, doesn't it? But there's a tiny asterisk after that 60%, and when you look at what it says in the explanation, it says that the actual reduction in risk of a recurrence is 2.9%. Yes, you read that right. Less than 3%. How is that explained? Let's let Dr. Susan Love, renowned breast-cancer researcher, explain it:
"Now let's take a look at the numbers. The study found that, overall, 2% (31) of the 1579 woman taking letrozole had a recurrence compared with 4.9% (39) of the 804 women who chose not to take the drug. This is the 60% reduction noted in the media stories. (A reduction of 4.9% to 2% is a reduction of 60%.)"
In other words, if you take nothing, your risk of a recurrence is fairly low--just 4.9%. If you take an aromatase inhibitor, your risk goes down to 2%. And many of us on AIs have already taken tamoxifen for some number of years, which has reduced our risk of recurrence below 4.9% to begin with, so the actual additional reduction in risk after tamoxifen is less than 1%. So how much added benefit is the aromatase inhibitor giving us, whether we've taken tamoxifen first or not? It's negligible.
We are getting very little benefit for the crippling side effects these drugs are causing us. For some, it may be worth it, but for me, a reduction in risk of a recurrence of 1% or 2% is definitely not worth the pain and seriously diminished quality of life I now live with as a result of taking this drug.
P.S. To read Dr. Love's entire article (Femara: A Closer Look at the New JCO Study), go to: http://www.dslrf.org/breastcancer/content.asp?CATID=0&L2=3&L3=5&L4=0&PID=&sid=130&cid=1393. Since I can't seem to make this into a link, just search on Susan Love and the name of the article in parentheses above and you should find it.
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Thank you Eph3,justagir land Krw for your responses, each of which has given me new insight. I was guilty of having a pity party which may not be completely over but, at least, I can remind myself of all the blessings I have and more positive way of facing the future.
Eph3: Having my husband of 49 years,even with his diminishing memory, is a positive when compared to your worthless one. Congratulations in your independence !
justagirl: Hope your rollercoaster slows down, best wishes for you in your upcoming procedures and thanks for the reinforcement of my feeling that Femara is part of this depression. I know that I will have support with my DH when the time comes.
Krw: You did your time with Tamoxifen and made a courageous decision about Femara which has caused you so many problems. Hopefully the SE will diminish with more time.
I am not blessed with "the gift of gab" but I will try to develop a friendship with you who totally get it. Thanks again !!!
Jane
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Hi, I started Femara 2 days ago. I was on Tamox for 3 years.I don't understand why my Dr had to switch me to Femara. I am afraid to ask. Since I took this new med I am having flu like symptoms. Have anyone experienced this?. Will this go away?. This whole thing is scary. It is not that I was fine with Tamox. I am dry like a cardboard anyway and have joint pains too. Joint pain have become unbearable with Femara and also noticed that my vision is a little blurry. Thanks.
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Hi MBoss, the flue like symptoms after taking the Femara is a comon SE. A good way to help ease these is to take an anti-histermine such as Claritine or Zyrtec when taking the Femara. The blurry vision like wise but if it goes on for too long please mention it to your doc. I also had the blurry vision to the point I went to the optomitrist to get my eyes checked but they were fine and the blurry vision disappeared a couple of weeks later. There are suppliments that can help ease the joint pain if you don't already take them. I can let you know what works for me if you like, just let me know.
Good luck and give it a little time a lot of the stuff that comes with a change of med can disappear after a few weeks.
Love n hugs. Chrissy
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xgolfer - A pity party sounds pretty good to me - I'll come and pity with you! You have so much going on in your life with BC, femara and your husband's illness along with having to change your lifestyle to accomadte your husband. Just know you are entitled to all you feel!
krw: you have made me think and I'm going to do more research!
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xgolfer, I recommend you see a therapist or counsellor about your depression. It may be due to your overall situation, which is natural after BC, not just the Femara. I have been seeing a therapist since diagnosis and it has helped me tremendously. I also take anti anxiety medication and feel normal most of the time. It is highly likely that these things could help you too.
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I have taken Femara for 2-1/2 yrs. and have the joint, hands and foot pain s.e. Today, I asked my physical therapist, Mary, for help with the foot pain/immobility I have each morning when I step out of bed. She told me to do this before I get up: extend each foot fully to stretch. Flair my toes out and separate them as much as I can, holding position for a few seconds. Then, I curl my toes in tight to my feet and hold a few seconds. After doing each foot and with leg relaxed, I am to write the alphabet in air with my toes and using my ankle. It felt so good in the session. Just wanted to pass this along and hope it is useful.
Thanks for posting Susan Love's explanation re recurrence rates for Femara. I will look into this since the Femara cost me significant bone loss in the past year. It's why I am in physical therapy now. -
Thanks chrissyb for letting me know that the blurry vision goes away. I called my Dr and told him I stopped taking Femara after I experienced all those SE. He said that flu like symptoms could not have been because of the drug. I don't believe that. Right next day when I stopped taking the drug I was back to normal. He wanted me to take the drug in the night and see, so I will be taking it today. If I get the same SE I am going to ask him to switch me back to Tamox. All these switches are so confusing and makes me nervous, wonder how beneficial this drug is. I wish there is a correct answer, it all sounds so ambiguous
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Hi Femara ladies,
We have here extremely high temperatures now, so we spent a lot of time at swimming pools.
After swimming a much I was really tired, but next morning and all over the day no bone/joint pains. Couldn't believe, but it's true! Unfortunately so as I as you too, we cannot spent our days swimming!
Best wishes!
Usha
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Usha, that's good that you have discovered the secret. It is said by many that exercise is the best solution to the joint and muscle pain but you have to be able to break through the barrier for it to be effective.
Mboss, you will find with persaverance that some if not all SE diminish enough so you can cope with them. Please don't give up too soon.
Love n hugs. Chrissy
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I am still on 1/2 a femara tablet a day. Going on 19 months on femara. Mainly pain in just my feet. It is tolerable. I've been able to get my Vit D up from 32 to 60 by taking 5000iu's a day. Thrilled to find that out! Tumor markers were the lowest they've been since diagnosis. They were 13. Yippppee! I know it's not a guarantee everything is good, but I'll take what I can get. More than anything, I'm just tired all the time.
Just checking in,
Joni
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KRW : Have just read your post .Found it extremly interesting , and intend to read the rest of the report you quoted.
I don´t blame you at all for gioving up on the drug .At the end of the day as others have already stated , quality of life has also to be put into the equation . I am sat here having a hot flash , with the sweat dripping off my hands and face onto the keyboard , thinking to myself , "another three years of this ?! " Perhaps not , not for 2% .
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slousa, I too have a pool and have had similar results. Too bad I live in Chicago and my days in the pool are ending soon.
MBoss, when I was doing the A/C for chemo, my side effects were not uncommon on the boards but my Onc would say they were rare. I think the ladies on the board are more active when they have S/E. I would copy what was said here and bring it to him and say THERE. People ARE having these issues.....
I have been on Femera for almost three months. I am just going to deal with the joint pain, although it does seem to have lessened and I am thankful that although I do have some flushes, I wouldnt call them Hot flashes.
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Shout out Joni1-glad it's going good! Loved the wedding photos on FB even tho I didn't know who people were
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Thanks Joni, it was a great wedding. Malibu is simply beautiful. Hope all is well with you!
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Hey there all you lovely people. Been a while since I've been on here. Little update.
I finally got the generic form of Femara. Still cost $265.00, although that's better than $565.00
I've been on Femara since May of 2008. Just this past 6 month I feel the pain of it in my joints. Especially in the fingers and hands which are swelling. I walk everyday 3 miles and now I feel aching in the ankles. So for me it's the longer I'm, on the worse it gets. My Onco wants me to try Arimedex. He said it's also cheaper. What I've heard about that drug, I panic. I think I'll stay with what I've got and suffer through. Didn't realize it causes depression. I'm ok but there were times I just wasn't myself. Also 5 years is it for me because my Onco said there have been no studies after that to show them it does any good after 5 years. Right now I'm waiting impaitianly for my 5 years to be up, although I'll freak when it gets here.
Take care and I'll be waiting for any input. Artsee -
Re Femara vs generic: Last May, when my Rx was filled, I was given the generic letrozole made by TEVA. Within a week, the aches and pains that had disappeared after 2 1/2 years on Femara all returned. I finally checked with my pharmacist yesterday to see if my supplemental insurance would cover the name brand and the answer was "Yes". So I'll be going back to Femara on the weekend.Here in Canada, 100 tabs of Femara cost approx. $700 while the generic is just over $200. Glad I won't have to pay $500 for the original!Artsee, I sure hope you have the opposite experience with the generic.
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Hi Artsee, I paid $450 for my first month of Letrozole and then found out that Costco has it for $23.00!! Exact same thing from the same manufacturer! I don't understand how there can be such a huge difference in price and am going to look into it because it makes me mad that other places charge such an outrageous price. I've been on it for a little over a month and am struggling with diarrhea. It's the only side effect so far so I really don't want to switch to Arimadex before trying everything possible to get rid of it. Probiotics are helping a bit and my accupuncturist gave me a chinese formula yesterday that I'm going to try.Has anyone else experienced diarrhea from letrozole?
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SeaShelly beat me to it.
When Artsee posted on another thread I'm on that she was on Femara - I wanted to MAKE SURE all of you knew to go to COSTCO - you don't have to be a member to use the pharmacy. Tho, their food is good.
I went there last year when Arimidex ( my "drug" of choice
went generic. It was the first prescription and was $20 a month - ALL other pharmacies were, and still are , charging about $350.Good luck to all with finding a Costco near you. I drive 30 miles to get to the one nearest me. It's SO SO SO SO worth it. The pharmacy folks are lovely, helpful, you can call in advance & have the prescription waiting for you.
PS. When I was getting chemotherapy years ago, I had the worst diarrhea - emailed my docs at Dana Farber in Boston, and told him I was sure I needed a prescription - he said Immodium is as good as anything we could prescribe for you
ALSO at Costco!!!! -
Well I am stunned! How can Costco charge $23.00. I guess we can all see what a rip-off all these drugs are. We have a store that's 30 minutes from us as well. We just were there last week. I will make sure I check that out.What's a half hour drive to save hundreds. My insurance covers all but $2500 every year. That's huge.It's a 'must' to look into it.
Thanks for the GOOD news guys.
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Artsee: I was on arimidex for one month - the only issue I had was a headache...unfortunately for me the headache was getting worse so my ONC took me off of it and giving me a 3 week break before trying, Probably femara generic... I have found through my reading, that if one gives you SEs, the other probably won't.... Praise God we have more that one med to try... My friend I walk with has been on Arimidex without one SE, so it is just finding the right plan, the right med for the right person... Don't be afraid to try it..... I will come back and take arimidex if the other meds SEs are worse than the headache... Just trying all my options before staying on it...
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Just wanted to let you all know I called Costco and a 30 day supply of the generic Femara is going to cost me $22.47.I was so excited I didn't even ask what Femara cost.
There is no question that I am switching to Costco for this drug. Thank you sooooo much for the input.
Hugs, Artsee
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Artsee - I asked costco that question when I looked into femara - the femara was going to be $1527.00 without insurance but could also get the generic for $22.47...
Edit: I found out my other pharmacy - BiMart will price match with costco!!!
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Ladies...........has anyone used the Novartis promotion of Femara for $10.00.........I know this offer has expired, but can anyone tell me how it worked............I got the offer 1 time..........it was my understanding it was good for more then 1 prescription...............am I goofy, or is my pharmacy completely misinformed..................I thought we were entitled to more then just 1 30 day supply...............help....if I'm wrong tell me.
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Ducky I used that coupon till it expired. Here's how it worked - it was up to the value I think of $800. I pay $45.00 for my co-pay for name drug, then they would apply the coupon $35.00 each month and I paid $10.00 THEN the generic came out and when I went to pharmacy my $45.00 jumped to I think $180.00 so I used up my total Novartis coupon that month, then I called my insurance office to ask them why the big difference in charges and the reaso they gave me (which I think they made up on the fly) is that your doctor has to write on the script that they must not substitute for generic, anyways I just took my prescription over to Costco where I got a 3 month supply of the generic for $25.00, so those of you transferring to Costco, check out the 90 day supply costs.
Cheryl
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I use Walmart pharmacy. The generic is $4 a month. I used the Novartis coupon for 16 months for femara, but the coupon expired in June. Now that it has gone generic, my insurance won't cover femara. Have to get generic. I have extra femara, because I only take 1/2 a pill a day. So, I haven't taken the generic yet. Hoping, when I do, the s/e's don't get worse!!
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Thanks ladies.................Aetna warehouse told me that the Femara would cost me $90.00 for a 3 months supply............the generic would be $60.00 for the same 90 days.............so far I have done very well on the brand, so I don't want to take the generic..................I paid a $45.00 co pay today for a 30 day supply.................that was CVS...............will call my MO tomorrow and get my script for the Aetna warehouse..................for the brand drug................I only got the CVS bottle because I am out..........otherwise I would have told them to shove it......Its ridiculous
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Jacee when I spoke to my insurance company they told me that if the doctor writes "do not substitute generic"(and I thought they made that up but maybe not) they have to give you the name brand so check with your insurance company and see if it's the same and then have your doctor write you a new script. I haven't noticed any difference on the generic, same old hot flashing during the night
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Thanks hbcheryl. But I won't have the Novartis coupon anymore, so I think it would cost me $70 a month or so. Once I start the generic, if I have issues, I may have to try it though.
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Hi, since I switched taking Femara from morning to evening the side effects are manageable, at least so far. Thanks for all your support, I almost gave up. Another thing I am noticing is my hair is thinning, I see hair all over in my house. Would I lose all hair?. I have already taken tamox for 3 years and my Dr wants me to take Femara for next 2 years. I am hoping he would not ask me to go on another drug after 2 years. Did any one of your Dr give a reason for switching. These days I get very suspicious about all the Drs who push certain drug.,you could say I am almost paranoid
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Yes, MBoss, you can have thinning of hair. At least Femara. I can'y speak for the other 3.
My hair is shoulder length and I noticed when pulling it back the sides are much thinner that normally. I also have hair all over the place and it drives me crazy. Maybe I should just cut it.
I am going to try switching the drug to evenings. Going to my pill box right now.
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Hair thinning is definitely a SE of Femara, and probably of Arimidex and Aromasin too. It's also a SE of aging because of lack of estrogen, just as the other SEs are as well. I started Femara a month after finishing chemo and it took several months for my hair to return, but it's very thin on the crown. I decided to change the colour in an effort to make it less noticeable, so now I've gone from brown to dark blonde highlights and it's helped alot!
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Three years after chemo only now I am starting to see my hair half decent. But from what you are all saying looks like it won't last long. I was taking such good care by applying coconut oil two or three times a month and socking it for few hours or sometimes overnight (I put towel so pillow won't get oil stain). Oh well I will wait for two years and start all over again. One good thing with this femara, I am going to say it without shame, is that I am not as constipated as with Tamox
Artsee-try taking it in the evening. Though you may be kind of crippled in the morning, as the day goes by most of the aches and pains fade away . I take plenty of water with the med and try to flush away bad SE as quickly as possible, atleast that is what I am thinking. Good Luck.
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I am going into my second month and the only SE I am experiencing is tiredness on some days. I take it at night.
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Hi All,
In July my prescription insurance switched me to the generic Femara. Within two weeks all the old SE's - joint and muscle pains - came back with an angry pain I didn't get on the Femara. I perservered until this past week thinking the SEs would subside. They simply got worse and worse.
My body told me that the generic is not the same as the Femara. So, I called my prescription insurance company, talked with the pharmacist and for $10 more a month, I'm back on my Femara. As I told the pharmacist, the generic has turned my age backwards - instead of 58, I'm feeling 85. They are shipping me the Femara express so I'll get it by Wednesday, Thursday at the latest.
For those of you on a prescription plan experiencing the SEs of the generic worse than the Femara - call and explain. This way, I didn't have to go back to the oncologist, get a new prescription that says don't substitute. And now my file says "do not substitute."
Hope this helps.
Pat
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Is anyone off Femara for more than a year after taking it for 2 - 3 years? I would love to find out if the femara "belly" ever goes away!!
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Hey "belly".............how about Femara ankles, feet, hair, or lack of...................this drug is horrible.............just on it one month and I can see myself growing.............gonna try Medifast, a location just opened in my town......................can't deal with this weight gain..............nothing helps either.....................I'd go off it now, but my kids will go nuts...........
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Every time i get pissed off that my skin is so dry (and getting more pigment spots and I'm not out in the sun), my joints ache, I get a migraine or have another long lasting wet-hot flash and just hate hate hate Femara - I try to remember what it is doing and maybe because I have these side-effects it just means it's working.
I am thankful I tested positive (one good thing) and think I would take it for the rest of my life (I'm 58) if doing that would help reduce my chances of never ever having breast cancer again.
Even though I have had a DM and my SNB was negative, I still live in fear of one of those nasty bc cells living somewhere else in my body. Every little bump I find gives me shivers...so I will continue with my love/hate relationship with the Big "F".
To deal with the weight gain, I had to cut out some foods or decrease the amount and increase my exercise. It worked. It wasn't easy but I feel better for being able to control my weight and like myself a little better, even though my reconstructed breasts still have the 'Barbie Doll' look but more like a reject Barbie. #5 surgery next month to help correct my boob look.
We can't give up now - look how much we have all endured and we all want to continue this life with our loved ones, even though taking Femara makes the going rough at times. I often think of Dorothy in the Wizard of Oz and that my yellow brick road has lots of ruts and rocks along the way but I really want to keep on going.
Sorry to ramble...
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Hi Debbie and other Femara girls,
At 6-months check-up my Onco seeing thicker finger joints of my hands, proposed switching from Femara to Aromasin (exemestane). Because being on Femara for 17 months with all possible SE's (belly fat too!) I'm asking myself what difference in SE's should be with this new medicine. Should I try? Coping with Femara I was so innovatory to find out what did and could help to maintain going on. So in the last months I was convincing myself the matter is tolerable.
Now, I'm afraid what this turn to the new medicine will bring to me!
I would like to ask experienced ladies or ladies on Aromasin how it's about state of health, how they are feeling, how effective this treatment is or was?
Thanking in advance!
Greetings!
Usha
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Slousha...I can tell you that Aromasin was my first medication my Onco subscribed. I couln't tolerate the side effects. Pain all over. He then put me on Femara which I was doing good with for 2 years plus...now I am noticing the finger joint pain and swelling. My elbows hurt as well, and ankles. I know when I see him in 2 weeks he'll suggest a Arimedex which I don't want to take. Heard to many stories from people on that. So in the realm of things I guess I suffer through as I only have till May 2013. Is this why I have belly fat?? Tell me about that. My Onco pointed to my stomach last visit and he told me to get rid "of THAT". I walk every day but it doesn't help the belly. It's hard after kids.
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I am currently on a 6-week break from Femara. The joint pain in my fingers has almost completely disappeared. I've been off the Femara for 6 nights.
I was diagnosed with rheumatoid arthritis by a rheumatologist, but I think the pain is from the Femara. I think I will be trying something else when I go back on an aromitase inhibitor in October. I didn't realize that Femara caused belly fat, too. I definitely have that, and I had a free-TRAM reconstruction, so after that surgery my belly was totally flat. I hate having it stick out again.
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Well, looks like there is no escape for me from Femara. After taking it for almost two weeks I told my Dr's office that I don't want to take this and that I want to switch back to tamox. I went to get my B12 shot today hoping that Dr would have left prescription for tamox but the nurse said that Dr wants me take Femara for another 2 weeks before even thinking about the switch. I was really disappointed and angry. Now, if I had to continue on Femara I want to know how I can get it for cheaper price. I am terrified to go on generic. Im thinking that if go on generic the side effects may be even worse. Can someone please please help me?
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Someone on here helped me and recomended 'Costco'. It will cost $23.00 for 30 days. Far cry from $565.00 for 30 days agreed? I hope you have a store near you. They ship as well.
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Can anyone tell me when you finish the AI's after 5 years, does your hair gets thicker like it used to be???? This is depressing having a combfull of hair all the time.
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Thanks artsee. We do have membership for Costco. Next time when I go I will ask them to see how much it is going to cost me with my insurance.
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I have an apology to Femara ( on it for 11 months) for blaming my foot pain on it. Heel spurs was the diagnosis. Some waves are appearing in my stick straight hair and I will give Femara credit for that.
Jane
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I have just been told to go on AI therapy (after lumpectomy and brachytherapy, glad those are done with!) and my oncologist has had best results with femara, so I read a lot of this thread to learn more. Here's what I'm thinking...
Seems like some posters are pre-menopausal or still peri-menopausal (still going through it, as it takes YEARS -- who knew!) and I think you would be dealing with some of these symptoms of estrogen deprivation anyway, maybe just less intensely. I truly hope they ease off for all of you (and for me, if I get them).
If you are younger than me (I'm 58), you may be just getting accustomed to being middle-aged. Your joint pain and stiffness may actually be in part ordinary osteo-arthritis that just hasn't been diagnosed yet. I was diagnosed three years ago and my regular doctor told me almost everyone has some osteo-arthritis by the mid-50s. I didn't believe I had it but special Xrays proved it to me.
Here's the sure cure, like it or not: "vitamin I", ibuprofen. It prevents the inflammation of the joint and doesn't just prevent the pain, it makes the joint better. Take it with food and you may have no problems at all from it (I don't). I like Aleve (naproxen) for headaches but for joint pain, vitamin I is IT. My oncologist suggested that if I take it at bedtime, it will have the strongest effect on how I feel when I wake up. All I know is that in the past few winters, taking it at breakfast, lunch, and dinner on a ski day (and some on the next day) makes an enormous difference in my knees!
I've been unhappy about going on AI therapy because eliminating my remaining estrogen is not good for my prospects of osteoporosis (my mom and grandmother suffered a lot from it), but I'm going to do it and hope for what someone in this thread said... basically, don't borrow trouble by expecting side effects that you don't yet have. And, like xgolfer with her foot pain, realize that breast cancer and its meds are not the only things that could be going wrong in your body!
While I'm rattling on about stuff, I have a comment for MBoss. The breastcancer.org goddesses have just started a thread about new research confirming the strong benefit of taking a couple years of tamoxifen and then a couple of years of AI (or vice-versa). Your doctor is not jerking you around, he/she is following current evidence of the best possible treatment.
Seems like these oncologists don't always have the best "bedside manner"... We can all be grateful to websites like this one (and Dr Susan Love's) that give us great scientific info in a loving way. And I am grateful to all of you for sharing your info about femara and how to treat its side effects (if I get them... knock on wood!!). Feel the love, ladies.
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Treeskier...how many Ibuprofen do you take every night? I can see where it would be good but I'm always so afraid of hurting my stomach. I will try it though. this Femara is killing me, especially since I have osteoporosis pretty bad. About 10 years age they tested me and my Dr. said I am 27% lower than the average person my age. Haven't broken anything yet or neither do I have a 'hump'. Thank God!
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Artsee,
Good to know I'm not the only one terrified of osteoporosis! My grandmother had the hump, and my mom died in pain from compressed vertebra fractures (not the cause of death, but can't you die of not wanting to be in agony any more??).
I guess if I were in your shoes I'd talk to the doc about switching to tamoxifen, which does not eliminate your estrogen (just blocks it) so it doesn't affect your bones.
If you want to try ibuprofen for the joint pain, here's my experience. If I take it 3x per day, 2 tablets (400 mg total, the regular adult dose) does the job for me. When I was in more pain after lumpectomy but couldn't tolerate the narcotics, I was taking 600 mg, the equivalent of 3 tabs. Even that little difference made the difference. I could tell when it wore off.
Most people I know who take it have no stomach irritation as long as it's (a) not on an empty stomach and (b) taken with a full glass of water. My understanding is liver damage is not a concern unless a person takes an excessive dose over a long enough period of time.
Good luck! I really hate to think of you in pain...
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Dear Femara girls,
Dxed in 2009 I was said I'm Stage IIA, according too NCCN BreastQuidelines 2011, I'm Stage IIIA because of high number of nodes.
Greetings
Usha
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I went through menopause at 48. Ive been taking Femera now for three months. The hair thinning, although mostly in my crown, joint pain and foot issues are for sure from Femera. The bloating of my tummy looks ridiculous without breasts! (I was not a candidate for reconstruction) What I really want to know is, after were done, are any of these side effects over?????
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Tree..Are you saying you take 2 tablets, three times a day? Meaning 6 in all? Are you doing this every day? You must have a lot of pain. I feel bad for you. I think I could get away with less than that.
Tamoxifen would do me no good. I think that's really for younger ladies that aren't in menopause.
I really do need the strength of an AI seeing as my tumor was a very aggressive grade 3. Sigh.....
My 90 year old mother is in constant pain and she keeps wondering why she has to go through this at her age.She has Osteo as well.
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Treeskier - I am confused about vitamin "I" - ibuprofen. You take that - what I understand to be over-the-counter Advil, only generic, for joint pain.
But you take naproxen - which is (at least in Canada) a prescription med, for headaches.
But aren't they both NSAIDS. Except naproxen is stronger?Or is it that ibuprofen is cheaper and easier, with no prescription needed, on an ongoing bsis?
could you kindly sort out my confusion? I take Femara's sister - arimidex, as well as have arthritis, so have plenty of joint pain. I've never tried ongoing plain old ibuprofen - sounds pretty good to me.
many thanks
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Hey girls, Some of you know that I started a blog while recovering from my DIEP. Actually, I started it in the middle of the night when I had an adverse reaction to some meds....had too much energy and I've continued it through many nights because my Femara is still causing hip pain. Onc is changing my prescription finally!!!
Well, I have found much respite in painting, crafting, sewing etc and I was wondering if there are any crafters etc who are interested in participating in a weekly posting about what they do. If they have items to sell on Etsy or anywhere else they can post it or they can just come over to show off their work, tutorials or whatever. If you have a crafting business, you can post it as well. I've had over 10,000 hits in less than a month.
I'm thinking of calling it "Breast Cancer Crafters"....anyone have any thoughts. I don't make any money off of my blog, I just do it for fun. So, if you are interested, come see me at http://larissahill.blogspot.com/ and/or email me at hmh308@gmail.com For those of you who blog, it would be a blog party of sorts.
I'm not promoting a business I have because I don't have one, I just thought it would be a great place for women with breast cancer and breast cancer survivors to show off what they are doing.
Please pass this along to all of your friends here as well as survivors who do not belong to this board. I can't wait to see what we're all doing and I encourage you to visit the site which I intend to have up in a week or so.
Thx so much and enjoy this wonderfully sunny fall day.
Fondly, Heather
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That sounds cool, Heather.
Artsee, for three weeks after surgery I was taking pain meds around the clock. Happily, not any more! I have never taken ibuprofen in 600 mg strength before and I found out it is definitely more effective than the regular dose. I don't have a reaction to them, taken with food and water, but I wouldn't take more than 400 at a time without my doctor's okay.
Flannelette, You're right, Ibuprofen is the generic of Advil (and Motrin?). I agree that naproxen is stronger -- ibuprofen doesn't put a dent in my migraines -- but ibuprofen is better for muscle and joint pain.
I am just about to start taking Femara, so I don't have any personal experiences of side effects yet, and hope I won't. I worry about joint pain because I guess it's common, and I already have osteoarthritis in my knees. My new oncologist said it's not clear whether ibuprofen will prevent joint pain from an AI. The first one I talked to recommended it, though -- 200 mg, or 400 if needed, at bedtime to prevent morning stiffness.
What they both said is that research shows the best remedy for AI joint pain is exercise! I know that if I have sore joints I find it harder to exercise, so if I get sore on the Femara I'm going to try taking ibuprofen and also try some different kinds of exercise like yoga and water aerobics. (Good intentions! Wish me well with them!)
Good health to you all and sleep well.Ellen
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I am completing my 2nd month on FEMARA and so far no side effects with the exception of an occasional warm surge. (knock on wood)
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That's great news ktab96! Sure hope it continues on in the sme way!
Love n hugs. Chrissy
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Well, I've got my 6 month Oncology apt today at 1:00 p.m. Hope all goes well, but I will talk to him about this joint pain. I'll ask if I can take a couple of Ibuprofen everyday. Don't really want to switch Ai's. I'll suffer through. I believe one is just as hard on the body as the next.
Talk to you all later.
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Artsee, I was switched from Arimidex to Femara not just because I had a slight progression but because of the side effects. I was fully expecting the same on the Femara but to my amazement, other than a little fatigue and hot flashes that are subsiding, I have no other SE's. Perhaps a change would be good for you also. Good luck with your visit.
Love n hugs. Chrissy
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Treeskier - thanks for that info about ibuprofen to ward off mornng stiffness. I've been on arimidex 2 & 1/2 yrs and that made me stiff enough but more was coming - stiff knees! brand new, this year - I think osteoarthritis. I have lots of it in other places, why not knees too?
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Chrissy...my apt. went well today. Good for another 10,000 miles
He said we could try another AI but I told him it is what it is and I'll suck it up for another 1 1/2 years. Femara has been good to me and maybe the arthritis is just coming on with a little help from it. He did fax in a prescription to Costco....so I hope it will be $23.00 when I pick it up like they told me when I called. Doc couldn't believe the price.
Next apt and mammo...7 month. Wow that's almost spring again. WooHoo.
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Artsee, I've had arthritis for years in just about every joint but my knees are to the replacement point and we will be discussing this when I return home from my trip. I guess old age has finally caught up with me.....lol. Hope you get through the next 2 and 1/2 years without too much bother!
Love n hugs. Chrissy
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artsee-I got Femara generic @ my local Costco on Friday for $22.49. Yippee!
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Hi I am also getting my Femara generic @ my local Costco. $25. My PPO insurance was charging me $1200 for the same thing. SharonH
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I talked with the pharmacist at the drug store where I paid $460 for Letrozole my first month before I knew about Costco's price. She was amazed and said she will tell patients to go to Costco for it instead from now on!! I was very pleased and thanked her for being so ethical.
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Went for my 6 month exam yesterday and I told my Doc about the price of Femara and asked about Costco. He was blown over by their price and went into his computer made one click.....Done. He said it's faxed and all you need to do is pick it up. $23.00. Yahoo! Now do any of you submit this to your insurance company?
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Hi, have not thought about it. I don't understand how insurance companies can get away with charging so much for it. It does not seem right. SharonH
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Costco wanted my insurance info, but my new insurance is crap so I told them never mind.
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Just got back from picking up my prescription from Costco for the first time. They wanted to see my insurance card, and they found that I could only have one month at a time...well I knew that so they gave me one month. I'll have to call my insurance company and when they see the price they'll let me have it no doubt for 3 month at a time. Anyway it was $22.49, and then it'll go through insurance. Not bad...but it's a crime that there is such a difference in Pharmacy...think I'll take it too the Supreme court.
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Artsee, I'm so very grateful to have learned about Costco's price. But I'm so mad about the huge price difference at the other pharmacies that I'm planning to at least contact the local media here. They would probably love to have something like that for Pinktober news. Hopefully it will help inform more women who can't afford the outragous prices elsewhere.You're right, it is a crime!
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Hi Everyone, I got off Arimidex 3 weeks ago and the onc is putting me on femara generic... He also left me a message that if a headache, like the one I got with arimidex comes, to get off it immediately and call him... I sure hope this works better.. Anyway, I guess this will be the place for me...
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After reading this thread I'm really hopeful that Femara will be fine for me. Fingers crossed!
My oncologist wrote me a 90-day prescription that I'm filling by mail. My insurance connected me to the company (Prescription Solutions). The order person said "The computer shows that the cost to you is zero dollars and zero cents." Not sure I believe it! What a drag that SeaShelly (and a lot of other women, I'm sure) got charged hundreds of dollars a month.
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Have any of you tried going to Walmart for your Femara? It's $4 a month for me there for the generic.
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Femara recently became available in generic form. That is probably why you are seeing such a huge price difference.
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My generic still was $254.00 before insurance. This was since June before that $568.00 which I've been paying since May of 2009. Sure I have insurance but I want to give them a break....why should they have to pay those kind of prices? That's exactly why our monthly insurances are so darn high. Because of the greedy pharmaceuticals. Funny...it always boils down to greed.
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I finished my chemo & radiation treatments one yr 3 months ago, June of 2010. Life has been good...I have HAIR again...and I've moved on! I'm managing OK taking Femara, with the usual joint aches and pains. Some days I didn't even think about cancer!! Now I have developed a cough. When I saw my oncologist, she ordered a chest CT. Those results show something (??), and she wants me to have a bone scan on Friday. Do any of you ladies who have tried to "move on" find your oncologist ordering more tests which cause you stress and fear again? I just want to be well and thought I was.
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Yes....it's quite scary isn't it? A couple of years ago I was moving on just fine and then on our way up to our lake home for New years with our friends they called me cell phone and the nurse said the Dr. wanted to have me have a CT scan on Sat. so he would have the results on Mon. when I had my scheduled apt. (This was Wed.) when I got the call so you can imagine my celebration immediately was down the toilet. My elevated liver enzymes turned out to be high from a prescription drug. After a lot of elimination they went down to normal. I have never been stress free since then, because I keep looking over my shoulder constantly. Let's pray you will be fine, and that it's just a dumb cough. they sure know how to scare one right? Keep in touch and let us know how you are doing.
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Boy, Bev, you said it. Before I saw a medical oncologist, after surgery and rads, I thought I was good to go. I HAD bc for a month... I was triumphant. Seeing two top MOs humbled me. They really put you into the world of "you will always have this threat hanging over you."
Good to hear you are doing okay with Femara. I start next week. Do you have anything to add to the earlier discussion in this thread about how to treat the joint pain? Is anything helping?
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Hi all,
So glad for those of you who can take the generic and for $23 are geting it as Cosco!. I was on femara since last Sept and then this July received the generic. In two weeks I was totaly crippled - such pain in joints I couldn't believe t. So after a month of that, I went back on the brand Femara (rather than a generic) and in less than a week the severe pain was gone.
Although the generic has the same core ingredient, it does have different buffers and fillers. My body said "no way" to the generic. So, if the SEs are worse, go back to the brand....or, if there is more than one manufacturer of the generic - try another.
Hugs to all my sisters!
Pat
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Pagowens...now that is very interesting. I'm thinking I have gotten worse since the three weeks I started the generic. I must call Costco and see how much they charge for Femara. anybody know? Thanks for the info....we learn a lot here.
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artsee-the costco here said "Femara", not generic is $528 per/30 pills (that's without an insurance Rx cost applied)
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Hi ladies
I have been on the generic femera for 3 weeks and no problems so far. I lost my insurance while I was in a treatment and no way can I afford the brand name. Has anyone on the generic not had any problems? My fingers do hurt when I wake up it it goes away . -
O.K. so Costco charges $528.00 for Femara and Letrozole is $22.49? Go figure......
It's beyond my figuration capabilities.
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I've been on the generic Femara since June and at first I had more than usual stiffness and pain but now I'm fine. I'm sticking with the generic at least until the next problem arises.
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I've been on the generic for 2 months and the only side effect I have is a few bouts of diarrhea in the morning (I take it at night). I'm working really hard to help this problem with probiotics, fiber and a chinese tea from my accupunturist. I'm making some headway, thank goodness. I really don't want to switch to arimadex and risk any other nasty SE's. Even with the "runs" I feel fortunate that's the only problem. Never was on the original Femara so can't compare, but it makes me wonder if it has to do with the fillers in the generic vs. the original. But I'm not going to spend $500/mo to find out.
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My SE are definitely more noticeable than they were on Femara, but I can't afford the real stuff, so generic it is. My doctor keeps saying, "You can switch. You can switch" My response is what is happening now is a known entity, switching brings in the possibilty of other, more intense things. Unless this becomes tooooo hard to handle, I'm just gonna deal with it & hope for the best.
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Thanks ladies. I hope the achy fingers are all i have to deal with. No way could I afford the brand name.
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Ladies that are taking the generic. what manufactor does your drug come from. I hear from the other Femara board that it makes a difference. Mine comes from Teva. I am going to tell my pharmacy to only use the drugs from Teva. Hopefully that helps. Check out the Femera Vs generic board. one lady postd some good info on the generic
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How do I get to the Femara vs generic board???
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Sorry Artsee it is the femara gone generic board
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I am currently in the middle of a 6-week break from femara (generic.) after just a few days being off it I started feeling so much better! I dread going back on another aromatase inhibitor in 3 weeks.
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I just started my generic yesterday. When I filled the script I asked my pharmacy plan what the name brand would cost. My responsibility would be $1000 for a thre month supply verses $7 for the generic. They did tell me that if I had problems with the generic my MO could send in an appeal and I could get the name brand for the generic copay once I proved I couldn't tolerate the cheaper one. Hoping for the best on the generic. How long before the aches and stiffness starts? I already have DJD in neck and shoulder.
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Has anyone else experienced more sever hot flashes the longer they're on Femara?
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Saf, Thursday night I actually cried the pain in my wrist and fingers were so bad. Called the onc and he took me off femera. Next month I am starting with a new onc so I dont know if they will be changing the drug or giving me something new. Ive been on it for 3.5 months. Within 48 hours, I can now lift my left leg again. Havent been able to do that since June. Hoping the hand pain ends as quickly.
Grandma rose, I havent had hot flashes as much as flushes and I thought I was done with that 5 years ago when I went thru menepause.
Good luck ladies.
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Grandmarose... yes, I think they come the longer you're on it. I am just having them again off and on the last 5 month.
Does anyone ever think...is this gerneric form as GOOD and powerful as Femara? I mean has it been tested long enough?
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The generic Femara is more then likely "as good" as the brand as far as the efficacy goes..........but the SE's, in a generic can happen, even though you have no problems when on the brand, and are switched to the generic....................it is a known fact.............all things are not equal..........fillers and other components (that do not effect efficacy) but can cause SE's. when taken.
I have Aetna insurance............through the warehouse I get Femara brand, for $90.00 for a 3 month supply..............the generic would be $60.00 for 3 months.........................my feeling is since I have minimal SE's on the brand.............................I will just pay the extra $30.00 and stick with what is working, and giving me less problems......
I have just one problem now.......in our 2012 Formulary which just came in the mail Femara is not one of the the drugs....................I called.........they said ........Medicare has to approve Femara for formulary in order to be able to get it.................
I was unaware that Medicare dictated which drugs goes on the Formulary for Aetna.......according to the Rep........she said ...........if Medicare does not approve Femara for formulary, no insurance company will be allowing patients to get it.....................did anyone else ever hear of that...................so in other words...............if Medicare does not approve Femara for 2012 as a Formulary covered drug.....cancer patiens will not be able to get Femara through their isurance.........keep in mind this is only Medicare..............
would be interested to see if anyone else was told this..........................although all drugs have not been given approval yet....................there may still be other added, including Femara...............it will be a wait and see.....................we should know by Oct. 15th..............
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Wanted to clarify the cost..................by getting my Femara in a 3 month supply[ it is cheaper..............so it is $90.00 for 1 months, but I get 3 months which is $270.00 for 3 months................thought I might have confused everyone.............however $90.00 is still a lot cheaper then some of the ladies have been quoted...............so again.......it is $90.00 a month for Brand............................$60.00 for generic.................I will stick with the Brand.
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Hi Ducky *wave* I've been workiing at my new home computer job and haven't been on in a while.. The Onc put me on the generic femara last week - no headache like with arimidex but today I kept getting a kink in my foot when I walked and my knees have been bugging me... Do you all think that is from the femara or a combination with my new computer work?? I have an "ergonomic" workstation and been very careful about my posture and taking breaks... I want the femara to work and don't want to blame it for my aches... I am still walking 3 times a week to keep myself moving... just not sure...
I start this job full time next week... just been working 20 hours a week for the last 3 weeks..
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Gma........I have only taken the Brand name drug, but I have heard a several people who were on the Brand, before the generic came out, and had 0 to mild SE's, but when they went on the generic (because it ws less expensive) they began to experience problems................
I think the only way someone with that experience would have to stop the generic, go back to the Brand name, and see if things change.........................many go to the generic for a cost savings...............I won't do that..........I would rather pay the extra and remain as I am....I have a few aches, but I always had aches..............I just have to decide if they are a little more then before Femara...............I have arthritis, so it is difficult to tell.
Many women complain about hot flashes................so far none of that for me.
I doubt the chair, or being in front of the computer is causing you knee, or foot pain.........ask your MO if he has any samples of Femara, and use that till you run out of samples, and see if you notice a change.............if you do, the generic, could be the problem.........glad you don't have the headache like with Arimidex............
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I have to say...three weeks on the generic and I don't have any more joint issues than I had with Femara. For me $564.00 vs $22.49 is worth the se's.
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My Brand Femara cost me $280.00 every 3 months............I'm doing well on it so far, so my feeling is I'm staying on the Brand...........not worth taking the change, just to save $90.00...............I worked for a Pharma Co. for 15 years. Both my daughters have 30 years with the same company............I was in Research, so I know that generics are not exactly the same as Brand..........Only the "Core" has to be the same.................other components in the drug can cause SE that the Brand doesn't.
However if the generic works for some...........by all means take it, or stay with it if your on it without problems.............as for me........I will remain on the Brand..........
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As long as it dose it's cancer trick. That's what's important. And I'd hope through testing they have found that it works just as well.....with some s/e's maybe?
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I"m sorry to hear that some of you are experiencing such difficulty with the side effects! I have been on Femara for about 2 years now. I think I am doing okay!
I take it at night to off-set tiredness and do have occasional hot flashes (was worse at first -- but has imporved dramatically. The hair on my head is thick but I have noted less hair on my legs and arms -- I didn't realize Femara was supposed to cause hair thinning so I had attributed it to chemo and it just never growing back much. I I experience low back pain but I had that before I ever started the meds! I took Zometa and now take Exgevia to help with bones. I also take Omega 3's, Clucosamine, Vitamin D, and Calcium. I plan also to start on Miatake D-Fraction.
Best of all, I am stable!!
A
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Congrats Amanda! Love to hear the positive side of things...gives me hope.
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Just stopped by to share that FEMARA stopped working for me. I've had progression. I've been on FEMARA 17 months now. Now it's onto Megace. I had no horrible side effects on the FEMARA, so I'm kind of bummed that it's not working for me. Guess it's just time to try the next AI. Jean
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Padiddle...how did you find out it wasn't working for you? I would like to know the sighns.
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Yes Padiddle, what was done to determine Femara wasn't working?
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Got some good news today..........Aetna called to ask my approval to put the charge on my credit card for my medication (3month supply), and when she told me the total I said "hold on, I ordered 4 drugs, and I was told the Femara would cost $280.00, and now your telling me the whole bill is $287.00"............................she then told me the Femara was $261.00 which was great news...............hell its $19.00 in my pocket..................
I too would be interested in knowing, why the Femara didn't work, this is a relatively new drug by comparison, so it should be interesting why it had a failure..............I'm sure your not the only one..........Keep us informed........................and I also am doing well on the Brand drug Femara...............well I don't feel like 20, considering I'm 76, but not sure if I'm any worse then I was before I started it..................I guess time will tell.................even those without SE's developed some down the road, so I'm not getting excited yet........................hugs, and hope the new drug works for you.
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I had progression. Cutaneous metastasis is the medical term; common term is skin mets. My left breast developed cancer in it too. At first it was thought that the left breast was a second cancer, but I got the skin mets on the right. Surgeon and onc both agree the left was not a new cancer, but metastatic disease. Having a PET scan next week. The tumor marker was not available when I met with onc yesterday. If FEMARA was working, I would not have recently developed cancer in the left breast and the skin mets. The pathology of the skin mets and the left breast tumor were exactly the same as the original pathology from initial diagnosis in 2000. Can't find much talk about Megace, but I'll keep looking. Jean
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Jean, sorry to hear about your progression. I guess Femara, like all other AIs don't work for everyone but hopefully you will have success with the Megace - that's not a drug I have heard of before. Please let us all know how it goes? Gaynor
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Jean, that is very unfortunate. I hope that the Megace will be effective.
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Jean, so sorry about the added stress you are experiencing. Nobody wants to hear that.
I was so hoping Femara was my little miracle pill and for everyone that takes it as well.
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Is there anyone besides me that gets constipation from femara and tamoxifen? I did 5 yrs of tamoxifen and 4 yrs so far on femara. I stopped taking it a few yrs ago and my bowels worked good after 5 weeks then I went back on it. I use stool softeners and senna every day and have to use a suppository once a week. The doctors know about this but it doesn't bother them. I also had a bowel resection in 2009 when my colon collasped. For 3 mts my bowels moved good but they went back to the old way after that.I get naseau at times.I am so tired of hot flashes and everything I am thinking of quitting femara now.
I was 2 cm ductal and lobular, stage 2 ,1 node micro,grade 1,4 chemo, mastectomy and a preventive mastectomy a couple of years later. 2002 cancer and 2005 preventive. I don't know if i need the 1 year of femara left? What do you all think? Thank you so very much, jinky
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Jinky, can't answer your Femara quandary, but as to the problems down below... Femara did seem to constipate me at first, but I've had no trouble whatsoever since I started taking curcumin at my naturopath's suggestion (6000 mg per day). Seems like the curcumin helps keep things moving along beautifully (in addition to all the other supergroovy stuff it does).
~lulubee
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Padiddle..................Not great news..............so sorry to hear that...............the real kick in the ass is..............we take this crap, deal with all the SE's for those who get them whether minimal, or nasty, and then we find out after all that , we get a recurrence........................I realize everyone is not getting out of this cancer crap completely, but when you hear of someone who has done it all right (like the friggin MO's, RO's, BS's, have asked you to do, including the lousy SE's, and then this happens..........................I am so angry right now I could "spit"...............it just is not fair........................good luck Pididdle........I will be praying for you.................yea I'm taking the "devil pill" too.....................
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Hi Jinky,
I suffered from major constipation going through chemo then on to Femara. Last year I had emergency surgery for a twisted bowel and after that for a while went the other way but now have bouts going either way, differs day to day. At least this means if I can't go for a couple of days I know it won't last too long, LOL. For me the lack of energy and "chemo brain" are worst - I used to have such a good memory but now I am often lost searching for words etc. I also find that I do not handle stress/pressure nearly as well as I used to, not sure how others find this? I prided myself on my ability to multi task, now if I don't write things down I am not guaranteed to remember even important things, and pressure at work makes me feel like crashing on occasion. Good job life at home doesn't have nearly as many pressures, thank God. For now I will continue to take the little orange pill, I have a young friend who was recently diagnosed with mets and this made me rethink whether or not to stop taking Femara.
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Hi Monty
I am so happy you let me know I am not alone with this. Yes my constipation started with chemo, then tamoxifen and now femara. The onco told me you can't get constipation from femara. Sorry you got constipation but glad to hear it isn't just me. Wish you all the best.
I also find that I do not handle stress/pressure nearly as well as I used to, not sure how others find this? Me to and I have always done well with stress. Also when I went of femara for 5 weeks my hot flashes and tiredness was not so much. I soooooo felt much better.
I have 11 months and 25 days to go on Femara. I will continue on. Tried 3 tab milk of magnesia morning and night yesterday and guess what. It happened. What a relief.Thanks again bc hugs Jinky
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artsee -- I had the same elevated liver reaction to a prescription medication - Doxycycline for a stupid tick bite. Doubled my liver enzymes and caused anemia too in addition to Diverticulitis event. Drs put me through alot of stress saying it was due to the medication. They are now back in normal range again. One agreed it was the medication reaction. Totally agree it is very difficult to be stress free now.......
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Low back pain has set in now. Hurts to get out of bed. It gotta be the Letrozole. Been on it for 4 weeks now and never had that from Femara.
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artsee, I am so sorry. And I DO understand. I switched to letrozole for six weeks and it kicked my derriere.
I posted a few days ago in the Hormonal Treatment for Stage IV forum about switching back to brand Femara after having big problems with generic. (As in, I had to have an echocardiogram for tachycardia that set in within a week of switching to the generic, among other problems. Bad reaction.) I called the oncology patient navigator at my hospital and asked her to appeal my case to my insurance company for me -- I figured she knew what to do and I was sure I did NOT. She and my oncologist handled it -- and the insurance company granted the appeal.
All that to say, if you keep having new issues with the generic, you might ask your oncologist what kind of advocacy/support is available for helping you submit an appeal to your insurance. You just never know till you try!
~lulubee
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Hi all,
Artsee - I am finishing my 3rd week on and all weekend I have shooting pains down both legs and it hurts to stand on my feet.. The low back is also giving me trouble... I can't afford anything but generic - no insurance for me
- Maybe I will talk to the onc today about upping my Gabapentin??? This really sucks!!!! - sorry I had so much headache trouble with arimidex, I thought after a week with no SE's I would be able to do Letrozole....Any ideas - I'm already walking - motion is the lotion and all that - ice/heat , vitamin D, Cant take the glucosomine (allergic) - any other ideas
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Ladies.........I have heard a lot of women are having problems with the generic Femara after going on it, and off of the brand...............I called Novartis and told them about this, and they confirmed all things are not equal with the gene4ric, and the Brand, but working for a Pharma company I already knew that..
Anyone who can't afford Femara, or doesn't have pharma coverage, call,the manufacturer, who is Novartis.........ask them about their "access to care" program which is a program that pays for the Brand name drugs of anyone who can't afford the payments...............plead your case, tell them you are getting severe SE's from the generic, and you may be able to get your Femara from they "free of charge"................It is worth a shot............goodluck.
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YES, ladies... what Ducky said! Make those phone calls and rattle some pans. Do whatever you can to take care of yourselves!
If we BC ladies don't stick together and register productive complaints about this sub-par generic that's been foisted on us, how will the powers-that-be ever learn that there is a big problem here?
Please talk to your pharmacists and your doctors if the generic is wrecking your QOL, and ask them if they have professional avenues to give feedback to the manufacturers or even the FDA. It needs to be known to people who can actually effect changes that this drug needs cleaning up, pronto.
When I tried to get my prescription filled for brand Femara last week, I was told that the Costco pharmacy wasn't even stocking it anymore and it had to be special ordered. So I talked to the pharmacist about the growing body of anecdotal evidence out here in BC land that the generic is not a clean enough version of the drug (and I told her they still need to stock at least one bottle of brand Femara every month for me!). It was the first she had heard of it and she was very interested to know about it.
~lulubee
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I've had constipation from chemo and then Femara. After nearly 2-1/2 years on Femara, it hasn't improved so I am taking a fiber supplement daily. I hate the side effects of this drug especially the pain. I used to love playing the piano but it's too painful now. Cancer just keeps on taking.
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I have been on the generic for three months now, and have stiff joints when I wake up or seditary for too long so I walk around to loosen them up. I can tell a difference from femara to generic but I can deal with it for a while longer and see what happens. See MO on friday, I'll see what he says, just bought three months more from Cigna through the mail. Got three months for $20.00 vs. $80.00.
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I paid $261.00 for a 3 months supply of Femara (from Aetna's warehouse).......it is. Originally they told me that the generic would be $60.00 a month, and the Brand Femara would be $90.00 a month..................for the extra money it was worth it to me to stay on Femara..................I didn't want to take the shit to begin with, so since the SE's are some but not horrible, I don't want to change.
I plan on finding out the phone number for Teva who makes the generic, and also for the FDA to tell them about all the complaints women are making about their product................if they are never told, how can we complain.
Just google the manufacturer, and yo will be able to get their number..............working for a Pharma company for 15 years opened my eyes to what patients can do to change things..............................do nothing, and nothing will change...............complaining to each other is a good thing, since it brings out the problem for all of us, and makes it known.............................not telling the authorities means all we have done is talked amongst ourselves...................get on the phone ladies....................there is power in numbers.
Like i said Teva, makes the generic........................FDA should be easy to find................let's get this ball rolling.....
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I have been on Femara for 2 months then this month they put me on the generic, which honestly I feel a lot better, not as tired and less joint /muscle pain...
and today I got the cat scan results and My lymph nodes are shrinking!!! I shared my concerns again with the onc. and she told me that in her experience it is totally ok to take the generic and most have no worse SE and same benefits!
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I do not understand the difference in pricing between insurance companies. I have not paid more than $40.00 for 30 day supply on Femara and $10.00 for the generic. I am with Cigna.
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Depends on what plan you have......................some with higher premimus cost you less when you get services.................others the premimum is lower, but co-pays could be higher in your plan.......................It really takes a lot of thinking...................before cancer the one I am in was great..........................so much care, with cancer, it can get expensive with the co-pays, but when I was healthy it worked great for me.....................plus many Ins. co.'s are raising everything.................I got the 2012 booklet, and it is ridiculous.........oh well.
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Cigna does not write insurance in Pa.......................They only write in certain states..........don't know why, but that is it..............maybe if you pick and choose who you want to insurance in what state it changes the cost................who knows. Actually they only write in about 8 states
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Does anyone else taking Femara/or generic have problems with their thumbs feeling numb?
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The reason Insurance Companyied don't write policicies in certian states is because each state sets up their own rules that insurance companies who write in that state must follow. This is why it is important that we don't allow selling across state lines. The insurance companies would just all go to the states with the least regs. We would all end up without the protection of our states dept of insurance when it comes to fighting with our insurance. Much the same way all the credit card companies moved to North Dakota because they had the most favorable laws.
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Please see post" liver enzymes and thyroid"....I should have put it under femara..... bc hugs thanks jinky
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Here is my question with taking the generic.....anyone having symptoms similar to UTI's? Severe vaginal dryness? I thought I was getting a bladder infec/UTI but it turns out that the drugs have drained me dry dry dry. I didn't have this with the Femara but now with the generic I am having issues. I did get some estrogen cream to relieve the irritation but I have to be so careful as not to use it often. Is anyone else having this? I have heard that the generic drug can be different each month, in that in comes from different manufactures and the chemicals could vary with every prescription. Anyone heard this? I have been on Femara since Oct. of 2009 and experienced bone pain but no dryness.
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Dryness down there, tell me about it!!! I have found it worse since switching to the generic. I didn't realize that each batch of letrozole may vary, no wonder the SEs change constantly, although joint stiffness seems to be the common factor. I was told to stay away from anything containing estrogen . I did try some other "things" but that wasn't too successful, so I take the occasional break when the going gets tough. Two and half years down, two and half to go. For my the sleep disturbance are worse, coupled with the hot flashes and night sweats - YUK!
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Since switching to Letrozole I noticed slight headaches and my hair seems to be coming out more that Femara. Both are a s/e it seems. I'm not liking it. 1 1/2 years to go........
Monty...I was watching Dr. Oz and the Gyne on the show says to use Progesterone cream down SOUTH....she says it helps. Don't know if you can get that over the counter or not. Seems when you take drugs that happens and your Libido goes out the window.
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artsee: I was on letrozole for 3 months and I am having arthritic pain on my feet and hands which I didn't have while on femara. I called my onco and have the pharmacy switch me back to femara. After a week back on femara, the pain was gone.
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I haven't posted in a long while and have been trying to catch up a bit. I am glad to see that I am not the only one suffering worse SE's on the generic. Judyb... I have gotten very stiff and painful thumbs and general weakness in my hand strength since switching. I have to wait for my DH to open the simplest jars and packages. Not to mention that my whole body has gotten pretty stiff and my hair is definitely thinning. My last 90-day presription of letrozole was manufactured by Breckenridge. I am going to try calling MEDCO and see if they will switch me back to Femara since they are the ones that made the switch to generic. If that doesn't work, I will put in a call to my ONC.
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Monty, what would you possibly take that contains estrogren unless it's HRT medication? I am puzzled ...unless it would be an IVF drug?
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Soy is a big no no... don't know if it has estrogen but it may........
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justagirl,
There are many things that contain estrogen, both plant & animal based and we are supposed to stay away from using them. The meat we eat contains animal hormones, and when massed produced the farmers inject extra. The milk we drink contains animal estrogen and so the list goes on.... Soy contains plant estrogen and that is why we should stay away from that.
Artsee, I am also PR+ so I should avoid products containing progesterone too. Not much hope for me with a solution for "down south" I guess. Thank goodness I have an understanding husband, and my onc made sure she explained this problem to him when I signed up for Femara.
Gaynor
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Hi, I haven't checked in for some time. I started generic Letrozole October 2nd. So far, so good. I've had aches in my big muscles (like glutes) a few times but can't be sure it was the drug. (The only reason I think it could be is it happened suddenly for 2 days when I started taking it, but has only happened a couple times since.) Crossing my fingers that SEs won't come with time, as they have with a number of you.
I was astonished to find that my 90 day mail-order prescription for the generic was FREE! No idea how much the real Femara would cost, if I need to switch. Cross that bridge if I come to it.
Just went for a long walk through the fall colors of Denver City Park. Hope all of you have some beauty in your day!
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Glad you are having no major problrms with the generic,treeskier. I may be switching also since my femara co-pay has increased from $88.+ to $126.34 for a 30 day supply. My pharmacist said the ins. company is trying to encourage generic. They sure got my attention ! I am doing well on femara and don't want to change. Please keep posting your results as it will help with my decision. Thanks, Jane
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I had the butt aches again today and I'm getting more convinced that they are a side effect. However, so far they are mild enough that I can almost ignore them and haven't felt the need for more than stretching.
My understanding from the AI threads is there are 3 different manufacturers of Letrozole. EAch will have the same active ingredient but different "buffers" and whatnot, so results could be different I would think. The one I'm taking is manufactured by Breckenridge.
I'm holding a good thought for you!
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Can I just join in here?
I have been taking Femara for 8 months now and have noticed, amongst other SEs that my head hair is def. thinning on top, not round the sides and back, though. Also, hair "down south" as someone put it, is noticeably sparser! Is this common?
Supposed to be an excellent drug to prevent recurrances, though. There was a newspaper article about that here the other day. I've already had a recurrance whilst on tamox. early last year, so hoping for the best with this one.
Sarah x
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I haven't posted in a while but wanted to give some input on the Femara generic, Letrozole. I began Femara in early May and was on it for 3 months. I was very lucky that I experienced no side effects. By the time my 90 day supply was up, I read that the generic of Femara, Letrozole, was being produced by at least 4 companies: Accord Healthcare, Inc, Mylan Pharmaceuticals, Inc, Qualitest Products, Inc., and Teva Pharmaceuticals. Because my insurance company gives me no breaks, I went to my local pharmacy and asked for the cheapest generic they could give me. I ended up with the Letrozole by Mylan. I comes in a 2.5 mg tablet and is a dark golden color. As with the Femara, I experieced no side effects with this pill either.
My suggestion to those who are suffering from side effects from the generic Femara they're taking is to explain your problem to your pharmacist and ask for a small supply of a different generic so you can give that a try... I'd guess that 10 pills would give you an idea of how you're reacting. This might save you from having to switch back to Femara and its high price and a different generic might not give you any bad side effects.
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Interesting....I didn't know there were lots of different Generics. I was given one (hot pink color) and assumed that was the ONE. Was hoping it would be a little nicer to me but not so. I have tiny fingers that are getting bigger bones at the joints. Yuk.
As for the hair...yup, it has been falling for three years. Pretty much all over..all agreed? You'd never know it when my hair is done, but my brush is full and when I wash it, the strands just pull out. Of course the alternative I 'hate' so I'm thankful I have hair. Thinking about cutting it like the 'Avatar pic' but I kind of like the all one length to the chin. Comforts me.....
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Ladies.............just a suggestion.........my hairdresser recommended a product called Nioxin..............I am using it, and I do see a difference.....................she says there is some very fine....new hair growth last time I was there............been using it for about 1 month..........There are a few types of "Kits"...............it is according to your hair.............thin, medium, thick, and whether it is "treated or untreated"......................ask about it, and see if it helps...........it isn't real cheap, but once you get your first kit............you can get it cheaper online....just check the different sights..........google..........Nioxin..............but my first kit came from my hairdresser......
Also it is different then Rogaine, in that even if you stop doing the treatment, whatever hair you have grown remains..................with Rogaine my hairdresser said you must keep using it, or whatever growth you got, will stop
Just a suggestion.
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I know I am a retired hairdresser and have used it since BC in 2008. I just didn't use it all summer and just got a new supply. It is good stuff.It'll just take a while to work but it should keep the hair from falling out as much.
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Thanks for the suggestions, ladies. I'm glad I'm not the only one with this annoying SE!
Sarah x
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artsee, my tiny fingers are not so tiny anymore, either! I can't wear my wedding ring -- can't even begin to get it over the knuckle. This happened after a few months on Femara.
I was given some Nioxin. I like the shampoo okay, but I can't figure out how the conditioner helps since it doesn't touch the scalp. Does the conditioner just fluff up the hair shaft so your hair will *look* thicker? I'm wondering if you could use just the shampoo and get the same results as far as reversing hair loss...?
~lulubee
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Lulu..the shampoo and conditioner get your scalp and hair ready for the most important part of the regime. The "reconstructive treatment' which is pumped on and looks like water is a MUST.pump a few drops on the scalp and then you rub it all over. This brings the blood to the scalp surface which encourages hair growth, So without this third application, the sh + con does nothing for growth and keep your hair from falling out. It's a little pricey but worth ever penny.You can purchase the starter kit to try the trio. The ? about the conditioner...it makes your comb run smoothly through your hair without pulling out hair.
Artsee
Romans8..why is this happening with more pain on Letrozole? Did your Dr. give you answers?
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Thanks artsee-- I didn't know about the treatment step. I tried the Nioxin conditioner but I like my usual conditioner much better -- my hair is fuzzier and doesn't feel as silky with the Nioxin conditioner. Since conditioner doesn't impact the scalp, you could likely sub your own conditioner and still get the same results.
~lulubee
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Has anyone lost weight while taking femara?
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Not me......I have gained a tad. I also haven't heard of anyone loosing but if you are "good for you". Meds seem to put on some #'s.
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I've gained 12 pounds in the year since my oophorectomy and starting Femara. Just enough to make me need different clothes. My oncologist said it's not likely to come off so I might as well let it go and move on.
Has anyone gained weight on Femara and actually managed to lose it again while still taking it?
~lulubee
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I gained a few pounds after starting Femara almost 3 years ago. Or, that's what I was blaming it on. I've lost that weight in the last few months, but I started walking more and keeping close tabs on my weight. And, I do think some of it was fluid retention, probably from Femara. Don't give up! It's harder to lose as we age, I've decided.
Lane
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Living in Spain , I´ve taken at least five different brands of generic letrozole in the last 12 months .Not happy about it at all , whether generic or Femara , i don´t think it´s good or helpful to be switched and changed all the time .
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I have a question for all of you ladies---Does anyone on femara or letrozole have extreme sleepiness? Like to the point that you are almost falling asleep sitting up in a chair? I'm not sleepy all day long. It comes and goes in waves, but when I get the sleepies, it is like nothing will stop it! It is almost like a twilight-like zone that I go into. It is awful! And I've gotten it a few times while driving. . .
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weety-I did when I 1st started Femara November '09-my fatigue was terrible. I was taking it in the mornings. I switched to night-time in Jan '10 & have not been near as tired as I was those couple months. Plenty of other side-effects but that bone-tiredness, not so much.
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Hi weety --
I had it worse at first, too. Like Eph3_12, I switched to taking Femara at night and that seems to help. I still have a little sinking spell sometimes in the afternoon (hey, don't we all?), but the fatigue is not as insistent as it was the first 6-8 months or so.
I have found, though, that I have a much harder time reading now -- a couple of pages and I start to get heavy eyelids! Arghh! It's very frustrating because I used to read all the time and now I can hardly get motivated to even start a book because I know it will just cause me to take naps I didn't mean to take!
~lulubee
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Thanks for the replies. I did switch to taking it at night and haven't noticed any change. Like I said, though, it's not like a constant fatigue. It goes in cycles so I'm assuming it has somehow messed up my sleep/wake cycles. I will be fine one minute and then all of a sudden I will get that extreme sleepiness come over me. My eyes start to go in and out of focus, and it feels like I can't stay awake. I wouldn't be surprised if I have dozed off for a few seconds or so just sitting there. It's a weird sensation, too, because it's like I'm not all there. Like a twilight zone. Then 10 minutes or so later, it's gone just as fast as it came on. Weird. I've been on femara for about a year now, so I don't think it will go away. I actually didn't notice it as bad at the beginning as I do now.
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My husband was having issues like that and actually came down to maybe having 'Narcolepsy". Goggle it, it's quite interesting but again one of those maladies that doesn't really get a diagnoses.
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yes, what artsee said---I was thinking narcolepsy from your description. A friend of mine has it-she takes meds to not fall asleep! I'm just the opposite--haha
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Oh gee. . . narcolepsy???? Can you just all of a sudden get narcolepsy? Or can a medication cause it? Or is it something you have to have already had?
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My husband has always had trouble staying awake. It's gotten worse with heart meds.
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weety....I, too have crazy fatigue...comes & goes, mostly comes!! I only take 1/2 femara a day. Oddly when I take it at night, I can't go to sleep. I started taking it at about 5pm. It's a little better, but I'm definitely not myself. I know I don't sleep well. Pain and discomfort every time I turn over ...from DIEP surgeries, hot flashes, getting up and going to the bathroom, UGH!!! I have all kinds of things I could take...flexeril, valium, xanax, pain pills, tylenol pm....but I drive a school bus and get up at 4am. I just can't risk having something in my system. On a Fri or Sat night, I will take something. It is very discouraging. I was just thinking how busy I would normally be getting ready for company at Thanksgiving, planning the meal, etc. I can't get myself out of the recliner!! My blood work is all good....so femara is all I know to attribute it to!
lulubee- Reading used to be my "escape". I can barely make it through a page either!!
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Cancer Sucks....................
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jacee - maybe we could read aloud to each other over Skype and then we could scream at each other when we start nodding off! HAHA! What a hilarious mental image!
Have you tried taking melatonin at night? (I can't remember if you take an anti-depressant, but if you do, the two don't mix as they both affect seratonin.) The ND I consult for BC told me to take 20mg about 45 minutes before I want to go to sleep, and I find it makes all the difference in whether I sleep like a rock through all the aches and flashes, or wallow in misery stew all night. If you take it early enough, it should not make you groggy in the morning. I started with 3 to 5 mg and increased it gradually.
I also drink a little Knudsen's Just Tart Cherry juice in the evening, and I can't recommend this highly enough -- it has made a big difference in my comfort level lately! Tart cherry juice (and it's from a specific type of cherry, not the kind in pies) contains a natural painkiller. It's an ancient lfolk remedy for achy joints, gout and arthritis. It also has natural melatonin in it to calm the nerves. I buy it by the case at WF to get the case discount, and I drink 8 ounces every single day because it keeps me from popping Advil all the time.
Like you, I've also noticed I do better when I take my Femara around 6 than I do when I forget to take it until bedtime.
~lulubee
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I was wondering if anyone that switched to Letrozole (generic Femara) has noticed any headaches coming on. Since I switched about 2 month ago I noticed a headache now and then. Never was bothered by them too much before. Today is the third day I'm waking up with it.Moves around and is never in the same spot. I'm one that hates to take pills so I havn't but I will today. This is annoying.
Thanks and make it a great day!
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Fatigue with Femara/Letrozole - tell me about it! Like Jaycee and Weety I get a strange sensation and I just cannot shake it off. At work it's real struggle some days, I get up and go for a work, try to fidn a job that involves not being sat down etc to try and avoid falling asleep at my desk, but it's hard. I talked to my onc nurse and doctor and they said they didn't think it was a SE of femara but what do they know sometimes. They tested my for thyroid problems, but it turned out my thyroid was overacting for a while which should have had the opposite effect. My thyroid levels are now back within range but still the fatigue continues. It's not been as bad for the last couple of months but it's still there so perhaps I will look up that other condition Artee mentioned (I think). I'm sure it doesn't help being awake every night from 3am onwards. I tried switching and taking the Femara at night but I couldn't sleep at all then.
I also have problems with swollen knuckles. Also, I have noticed recently that my leg is fatter than the other, never was before - anyone else notice this kind of change. In addition my onc ordered xrays as I am having problems with my knees and thighs hurting, the xrays came back showing nothing, not even arthritis - go figure - yet some nights I can hardly get to sleep for the pain, and getting up from a squat position is almost impossible without help. Makes me wonder what the hell Femara is doing to my body. Anyone else have undiagnosed joint problems?
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Well we can be assured it does help keep the estrogen at bay but as far as helping anything else, that thought goes in the toilet. Yes, my knuckles are swollen in my hands and they hurt.No more opening jars for me. My ankles get out of whack when I walk sometimes. My Onco said one of my calves is bigger than the other. Never noticed that as my legs are pretty skinny. He didn't say anything else about it.
I wake up many times at night but I do take something that makes me rest a little better. Otherwise it's 3 hours of tossing and turning. Now with the headaches....muscle aches...Oh Joy!
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I haven't started taking the generic yet. Since I'm only taking 1/2 a pill a day, (yet got 30 each month), I had about a 6 month supply. I won't be able to stand headaches!! Who can?? The joint pain is what made me got to 1/2 a pill. I was getting trigger finger in 2 of my fingers, and it hurt to do anything. I felt I'd have to get better just to die
My Onc wasn't thrilled with the idea, but knew quality of life is the main thing. It is much better now, but boy can I relate to the squatting pain!! The finger pain did go away completely. lulubee- I did try melatonin once. My DH tried some the same night. We were both up to the wee hours of the morning....weird, huh?? Didn't want to try it again. I experienced kind of the same thing taking femara at night, before bed. Isn't that strange when it seems to cause drowsiness all day long?? Nothing makes sense with all this.
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Weety, could it be that you are resting well at night. I recently started having debilitating pain in my shoulder, arm and shoulder blade especially bad when trying to sleep. Have had it checked out and am suffering from a ruptured disc in my neck. Meds have helped and am sleeping much better. When I wasn't sleeping well I would get the same "so sleepy cannot hold my eyes open" if I got still for more that just a few minutes. Now that I am sleeping better I am not having this problem as much.
You may be having sleep apnea at night so this is something to discuss with your DR. Sleep apnea affects many people and most do not know they have it. You actually have a lack of O2 when you are asleep. Something to think about!!!
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Hi Ladies............also taking Femara................after reading your posts I want to say ......be careful the swelling you have is not "lymphedema"..........it can happen anytime. It doesn't have to be right after surgery, or Rads...............it come come on, months, and even years later.......it might be wise to have it checked out by a LE specialist.............just a thought
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Sorry, I forgot to say the most important thing...................I have LE, so I am pretty up on the whole thing....................have read more books, and articles then I care to count.........and I do have an LE specialist.............just be careful
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Ducky, Yes, LE is definitely a concern for this that had nodes removed which seems to be most of us.
I also have LE on my node side along with the ruptured cervical disc on that side so now I am facing decisions on what to do about this new development.
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There has got to be SOMETHING out there that we can take without all these nasty SE. I have been on Fem for 2 yrs. now...just started generic last July. I had so much leg pain w/reg Fem that my Onc had me switch to every other day. It was working with little pain. Then...the dreaded generic...vag dryness, listless, tired all the time, headaches, low back aches, stiffness in every joint, fingers curled in the morning, bottom of feet hurt now watering mouth. What the heck? When I was having the lady issues, I went off the generic to get in cleared up and bam I felt so great, so much energy, no aches. I just went back on 5 days ago and feel like crap, once again. I am really seriously thinking about not taking this for the next 3 years and try to find a Natural Estrogen blocker. How sad that I even have to consider "taking my chances that the cancer doesn't reoccur" because of this drug that is destroying other parts of our body. Even though we are taking this for 5 years or more, my Onc said there are NO guarantees that it won't come back. Maybe it is time to live everyday to the fullest and feel good doing it. I can't even exercise anymore because I don't have the desire or energy. I have 6 little grandkids and I want to play with them not sit on the couch and watch them play. I know everyone has different levels of SE but this is crazy. For me, I think the generic has worse SE. Don't mean to sound so negative but it does wear on you when you feel terrible everyday and when you are off the meds you feel like yourself. Advice???
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ktmimi....................There are many women who have gone from the Brand Femara to the Generic..Letrozole..................a lot have had problems on the generic..............even though the compound has to be the same with both drugs...........the fillers do not have to be........they can use different things as long as they stick with the right compound.
Women who had no SE, began to get some..............women who had just a few, got more, and women who had many SE's got worse..................so there is some truth in this all...........I called the Manufacturer and advised them of this problem, both the generic Co. and the Brand Co.
Several dfferent generic companies make letrozole, but the one I notified was kTazo.........I called Novartis to let them know what was going on with the generic drugs, just so they can make a case about them not being identical in all ways.
I take the Femara..........I refuse to change, and will eat the cost of the Brand name.......It is worth the extra money, however............so far............Medicare has not put the Femara Brand on their new 2012 Formulary..............I have Aetna, and they told me this...............but they also said its possible they will before the year is up.
Good luck, and I hear you about stopping it all..........I have thought about that myself , and if the SE's get worse then the few I have, I will do that..........QOL ismore important then "length of life................hugs.
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I have been taking femara for just a little over a year. I have been taking the generic for about a month and have not had any SE's that were not there before. I am achy and have hot flashes. I hot flashes are not to bad and I have a curved spin and have had to deal with aches and pains since jr. high. I did have a trigger thumb issue, but it went away when I hit the 1 year mark.
ktmiml2: I know some friends that were having problems with Femara and they switched to Armidex and did not have the same problems. I also know people that were on armidex and switched to femara. You might see if your Onc. would let you try armidex to see if your SE's lessen.
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Hi, I am just coming over here. I have been on tamoxifen since April and was premenopausal before chemo. I haven't had a period now for 14 months. When I see my onc in Nov I would like to try switching to femara - I am worried that he will want me to go longer on the tamoxifen before switching. Does anyone have any good arguments or suggestions that I can bring to the table at the appointment? I'll be 53 next month, I don't think my period is coming back and my one and only estradiol blood test showed a level of 5. I want the 20% advantage of the AI over the tam and I worry about the tam-HER2 interaction.
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Omaz welcome...I can't blame you for wanting to switch. The SE's of blood clots and uterine cancer would be enough to want to make me jump ship. Go to your Onco with a list of questions and concerns. You have every right to.
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weety have you been checked for sleep apena
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I have been on Femara for two years now with minimal side effects. I do experience hot flashes and mild joint issues. One of the side effects I am experiencing seems to be contrary to others. Instead of hair loss or thinning, I am experiencing hair growth. Although I do have a nice thick head of hair, there are places on the rest of me that normally would not have hair. Has anyone else experienced this as well?
Thanks so much,
C
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csp625,
I also have hair where it doesn't belong. To make things worse I also have the hair thinning on the head. Does anyone know if it grows back after we are off this stuff.
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I think the hair in the wrong places is due to the testosterone dominance since we no longer have estrogen to balance it out.
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Weety..you are correct. Estrogen is so good for a multitude of things. Everything gets BAD withought it but what are we to do right?
I do believe the hair will stop dropping after we lose the pill. The generic is much worse than Femara for me when it comes to hair loss. My brush is filled constantly.
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artsee, I agree the generic is worse for me in so many ways. I had no hair loss with the name brand, my SE are much worse now. I have talked to my Onc, but he has done nothing though he is aware of the SE.
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I sit here with my first bottle of Femara, scared to death to take the first pill. Are the side effects worth it? I say no, I only had 1 positive node and I don't want to have worse joint pain than I already do from fibromyalgia. My family and oncologist tell me since I am refusing chemo to at least take the Femara.
This first bottle is not generic but I have a feeling my insurance (Tricare) will only allow me the generic if and when I need the refill. My upper back is already hurting so bad I'm tempted to take one of my Vicodin's. And it's going to get worse with the Femara?!
This sucks! I wonder if men had to deal with all this including losing their masculinity if there would be a cure by now.
Today I hate doctors, oncology offices and men too!
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Hi Chiluver, I take Femara and have done for over a year now with very few side effects. I have very bad osteoarthritis but the Femara hasn't make the joint pain worse at all. My main problem is hair loss and sleepiness but changing the time of day that I take the little pill has taken care of a lot of that. As for the cost of the real thing as against the generis, I have heard from others in the USA that if your doc marks your prescription for no susbstitutes then your Insurace is obliged to pay.......but you may need to check that out.
If you find that the Se's are too many for you, there are other AI's out there to try. I was on Arimidex first but that caused all sorts of problems and I was leary of taking the Femara but I'm very glad I did.
Good luck.
Love n hugs. Chrissy
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Chiluver- there seem to be many who don't have severe joint pain with Femara. We're all so different with these drugs. You could try it for the month and see how you feel at that point.
Chrissy, I never posted, but followed your travels as if I was reading a novel !! I live just a half hour from Eureka Springs, AR, and my son was married there. We just returned from a day in Branson as well. So wonderful you were able to do all you did. Thanks for sharing.
Joni
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Oh Joni, I wish I had known you were so close, I would have loved to meet you while I was there. Glad you enjoyed my travels as much as I did.
Love n hugs. Chrissy
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Wow.mi was on Femara, and then generic Femara, for about a year and a half. Then I couldn't take the side effects any more, so took a 6-week break. I felt awesome during the break! Then started on Aromasin, which was horrible, so have been off for 2 weeks. I go back to onc. On Wednesday. Will ask her about brand vs. generic.
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Chiluver.................If you could go back further in the posts, you would see mine..........I sound like you except for the Fibro............I finally decided to try it after waiting 6 weeks from when I finished Rads.....................so far I have not had any real problems.........already had arthritis, a bad knee,..............and ostopenia, so I can't be sure if the sometime pain I get is from old problems, or new ones.
The only thing I did get was something they call "trigger thumb", but its not all the time.......before Femara, I had cramping in my feet.........so I can't even say it caused that................I do take it at night, and that might help...............which was advice I got from the good ladies on this site...................I wanted to make sure I did everything to help myself.
If anything develops or gets worse...............I will stop, but so far so good............Now that is the Femara brand..........I will not take the generic............have heard some bad comments about it, so will pay the price for the brand.............good luck..............and remember, you can always stop it.................................
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Today I stopped femara after 4 years and 2 months. Did 5 years tamoxifen . Bone pain,constipation, hot flashes ,tired, thyroid has to be changed every 6 mts, ,colon resection, use 4 senna +4 stool softners or M of M for the last 9 years,osteopinia,heartburn. I am 70 years old and enough is enough. Pray some of this will go away. A couple of years ago I took a 5 week break and I could not believe how good I felt after a few weeks and my constipation went away. Will let you know how I do. Thanks bc hugs jinky
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Started Femara yesterday. When to expect SE?
Anyone taking it every other day?
I had oophorectomy in April and 4-5 weeks later noticed some hair shedding that lasted couple weeks. I just started Rogaine hopefully to prevent hair loss associated with Femara.
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Onc PA said yesterday that she wants me to go a few more months on tamoxifen to be sure my period is gone forever! before switching to femara. I think they are shooting for 18 months period free it seems.
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Found out that it is definite..................Medicare, thus, all insurance companies in the medicare capacity will not have "brand" Femara on formulary in the year 2012..........Everyone will be forced to take a "generic"....................To buy Femara cash (already inquired) with CVS, Rite-Aid, Walgreen's, and a couple others.........................if I want to buy it myself, it will cost me $1,800. every 90 days...............down to $1,600.............it depended on the Pharmacy you were dealing with.......................
I can't take th generic...........tried itand had bad SE's which I had almost none while on Femara............tried to get it through Novartis because of being below average income, and they told me "we don't give patient assistance" for Femara..................
Could ask my Dr. to switch me to Arimidex which Astra Zeneca, will pay for, but not sure how I will do on that drug..........
Right now I am asking my MO if she can ask Aetna to allow me to have Femara since I had problems with the generic.........will let everyone know how I make out.
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Ducky, what do you mean by "all insurance companies in the medicare capacity"?
Does that mean we won't be able to get it if we're on Medicare, or does it mean we won't be able to get it if our insurance company is affiliated with Medicare?
Phooey either way....
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nikola- I've been taking 1/2 a pill a day for the past 18 months. Side effects were too severe when I did a whole pill. Onc said he'd rather me have some in my system every day rather than skip a day. Seems my s/e's started about 2-3 weeks after starting a pill a day. I've never had any hair loss with Femara.
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Well ladies, after a week of joint pain to the point of tears they are forever taking me off femera. In two weeks I am begining aromasin and hopefully that eases some of the pain as it has some steroid like additives. Good luck. Onward
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Well, I hate to say it but I am not having a very good experience with the generic anastozole (arimidex) either. I am taking 1/4 tab twice a week and I feel dizzy and the constant need to take a deep breath. Tried going up to 3 doses a week and felt like my head was going to explode. Any one else felt pressure between the ears? I was really hoping Ferma might be better. It's been 5 weeks now and it does not seem to be getting any easier.
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Merilee, I get the pressure between the ears when I have a hot flash. I was also getting that feeling really badly prior to my doc upping my blood pressure meds and that feeling has backed off a whole lot. I still get it but not nearly as bad. Is you blood pressure okay?
Love n hugs. Chrissy
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Chrissy, last I checked all systems were good but I will for sure check that out again.I am also weaning myself of Lorizopam, and taking some supplements. I know that Lorziapan has withdrawal symptoms and one of my supplements is very powerful as well. It is hard to tweak out what is causing what. I also have PTSD so everything makes me think OMG its cancer. I have to work hard at overriding those thoughts with positive affirmations. Thanks for responding and letting me know that you have felt this too. It really helps me to hear that others have the same experience, helps with the fear factor.
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Merilee, you are not alone with the pain/discomfort = BC thoughts. I think each and every one of us have been there and it does take some work to not go there every time. You need to remind yourself the people who have BC also get other ailments. Hope it gets sorted for you.
Love n hugs. Chrissy
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Yup....got those thoughts as well. Been having headaches lately...which is supposed to be a s/e of the generic Femara, but my thoughts go else where.
Merrilee...I'd love to go off of the Lorazapam, but it helps me sleep. If I forget to take it at night I am awake half the night for sure. I'm between a rock and a hard place.
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Artsee, I am down to 1/4 tab before bed. I started taking it when PTSD set in and I was having nightmares about cancer. I have only had one since I cut back and I managed to get through it with out panic. Progress, not perfection I guess. I am wanting to get all meds out of me as I don't want to feel drudged any more. I stopped taking cytamel for my thyroid in April and behold! My last blood test showed that It had magically healed itself, hmmmm. Sometimes I wonder.
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I've been on the generic from Mylan for about 3 weeks now. I have increased joint and muscle pain, cramps in my feet and swollen ankles. Still this is far superior to the SE's I had with tamoxifen, so I'm not going to complain (well, not too much
). My oncologist said that I might be able to take a month or two "vacation" from it each year, and I hope she doesn't change her mind, as a little mini vacation from drugs sounds good to me. I had no rads nor chemo, so don't feel like I've got a choice. I cannot do tamoxifen, as it caused severe problems for me (blood clots plus other breathing issues).
Someone earlier posted about finding a natural hormone blocker. I went to a naturopath who is supposed to be an expert at cancer and he said that there really isn't any such thing. He gave me a couple things to take but neither of them have anything to do with blocking hormones. If you find something would you please let me know? I always have better success with "natural" remedies than I do with pharmacology.
So far, the letrozole (femara) hasn't made me terribly tired. When on tamoxifen I could have easily slept 14 hours a day (and did sleep 12 - and was still exhausted). So far at least I've had normal energy on this stuff. For the people who have fatigue from letrozole/femara - how long did you take it before the fatigue kicked in? Same question in regards to hair loss/gain?
Thanks!!!
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GardenGumby, not everyone gets all the se's from these drugs, but the fatigue for me, sort of crept up and after about a month I was falling asleep everytime I sat down. I changed the time I took my tab to the night and the fatigue was a whole lot better. I have been on the AI's for two and a half years now so I either have learned to live with it or it has gone.....either way I don't feel any adverse effects with the fatigue anymore. Now the hair loss................... For me, I noticed my hair was getting thinner but it took probably six months before I was fully aware of it. Since then, I have lost a whole heap more but not in patches.........it is just thinner. I wear it short so it's easy to fluff up with a hairdryer to give it some volume and no-one but me knows the difference.
Having said all that, I will remind you that if they are the only se's you get then you and I are doing pretty good. I'm happy to say that the Femara has got me to NED (no evidence of disease) and that's pretty good for being stage IV.
Love n hugs. Chrissy
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Chrissy, I love hearing that!!
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Chrissy, that does my heart good to hear that as well.
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Chrissy, thank You for Your post.
I just decided several days ago to start with Femara. I did everything (double mastectomy, chemo, oophorectomy) without second-guessing but going on AI was a hard decision. I had my prescription for Femara since April, was afraid of all SE and tried my best with diet and exercise to decrease even further my estrogen levels.
Then, last week a good friend of mine told me she felt two lumps and she has had biopsy the same day she had u/s. That showed me I would never forgive myself if I did not try everything.
So far I had three pills in the morning. Do You find them easier to take before bedtime?
I did notice some hair loss after my oophorectomy but that stabilized in month or two.
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Nikola, the hair loss could also be because of estrogen loss so can't blame it all on Femara. I usually take my tab about an hour after dinner when I go to the kitchen to make a cup of tea but that is only so I don't forget to take it. I keep to routine as much as possible otherwise i sit and second guess myself as to wether I have taken it or not....lol. I don't think it makes much difference when after dinner you take it just try to do it in a routine and if bedtime if best for you then do it then.
I think with all these drugs we go in thinking only of the worst se's and that is what we end up with and I know that we are all different and what suits one does not suit another but keeping an open mind I think helps as then you are not looking for se's and so probably miss a lot of them. Good luck and hope you miss them all (se's that is).
Love n hugs. Chrissy
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I can second Chrissy's experience in several ways.
My first several months on Femara, if I sat down I was nodding off in no time. I had waves of fatigue that were non-negotiable. Like Chrissy, I also found that taking it in the evening (between 6&7 is best for me) really helped. Now, a year later, fatigue is not a regular problem for me... I have my days, but then again I am 50... and at any rate the fatigue I have now is rarely as insistent as it was those first several months. I like to think that the utter exhaustion I felt in the beginning was healing fatigue!
Also like Chrissy, I started noticing my hair was thinner about six months in. It's a general thinning all over, but it bothers me most around my temples. I am taking B vitamins and hoping the biotin will keep a lid on it. Meanwhile, I just keeping going shorter and shorter, a couple of inches at a time... it's about ten inches shorter than it was a couple of years ago.
So overall my experience after one year on Femara is that the fatigue and the hot flashes are both definitely improved. That is a Big Deal. On the other hand, my joint stiffness has increased a bit, and I feel like I've battled the blues more in the past few months, and my weight seems to climb faster the longer I go without estrogen. (I need to exercise more, but ya know, it's hard to think about the elliptical first thing in the morning when you wake up with Femara feet! Ouchy!)
BUT... must keep all these aggravations in perspective... at my last biannual scan (in April-- I'm due for the next one later this month), many of my extensive bone lesions had disappeared and all the rest were smaller. My pericardial effusion from six months prior was gone, and some former spots of suspicious glucose avidity in the original tumor bed area had also vanished. By October, my tumor markers had fallen to within a normal range.
So I guess if creaky joints, a thick waist, and less glamorous hair are the price I have to pay for progress... ie More Time... I'm good for that trade. Even though I hate the way the stuff makes me feel, at least I'm still here feeling stuff!
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Thanks ChrissyB. I take the meds at night - usually around 8:00. Sometimes I wake at night aching, but I assume that my daytime achiness would be worse that it is if I took the letrozole in the morning. Since I'm still working fulltime I try to keep all the body parts as lubed and mobile as possible.
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Check out the newer drugs for osteoporosis - there is one my mother uses that is administered with an epipen like diabetics use. It has fewer side effects, you dose a tiny amount every day so the side effects stay at a minimum. Also if you do have a reaction, you do not have 6 month to a year of it in your system! This drug builds bone as well. Worth your time to check it out.
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Anyone on here that has suffered hair loss and now off the drugs? Just wondering if your hair came back after you finished the drug?
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Hi Anthunter, I havent heard of that drug but will certainly check it out. Hair loss can be caused by the lack of estrogen as well as the side effects of the aromatase inhibitors. It can also be caused by thyroid problems. My hair is thinniing but I will not be stopping the femara that I take due to being stage IV. Hopefully the thinning will slow down or stop before it's all gone. I have heard that after stopping the drugs hair does recover somewhat but I'm not sure if it does fully.
Hope this helps.
Love n hugs. Chrissy -
Hey ladies, they took me off Femera a week ago. Still having rough days with pain in my hands. What are you all taking that works???? Onward
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Hi Onward, I'm on Femara but I'm not having any significant se's. Have you tried either Arimidex or Aromasin? They are both Aromatase Inhibitors. Arimidex is very similar in make up to Femara but the Aromasin is put together differently and has a steroid base. If you haven't ried either of these and because of your reaction with Femara, perhaps your onc will want you to try thr Aromasin.
Hope those rough days become less and less and you feel better and better.
Love n hugs. Chrissy
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Onward...are you staying off the Femara for good? If so can you report how you feel as time goes on? I'm hoping for things to settle once off for good.
Just got up and my fingers can hardly bend to type this. That gets better as the day goes by. My back seems to have gotten better. Thank goodness...after watching the Dr. Oz show yesterday that was one of the signs of pancreatic cancer....back pain...yikes. Maybe I should not watch that stuff.
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Hi Chrissy, they are putting me on Aromasin next week for that reason. Hoping it's the answer.
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Nana, I dont see your post but I got a notification of it. I was taken off Femera Nov.30 forever. I still have hand pain. But I am seeing a lympedema specialist today just to make sure its not because of that. I have already seen a hand specialist that couldnt find anything. Because Femera really is the best drug for me, I wanted to be sure that it was the Femera that was causing the pain that was so bad it brought me to tears. If it's the lympedema, I will go back on it, otherwise I am done.
I can now get out of a chair or couch without looking like a 90 year old. My mood is back to my old spunky self, My knees can again take the stairs and my stomach is 2" thinner. I really had tried to stay on this stuff, but it just was sucking the joy out of life for me. : ( I will let you know what the doctor says today.....sigh.....Onward
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Onward, good luck with the Aromasin! I hope you tolerate it much better ans the se's are either none at all or tolerable.
Love n hugs. Chrissy -
Onward... "My mood is back to my old spunky self..."
Wow.
I'm a little taken aback by how encouraging it feels to hear someone actually confirm that.
I miss old self, like you miss an old friend who has gone far away. I wonder all the time whether she's really still in here somewhere or whether she went away for good with cancer... or whether she's just submerged in letrozole.
My best friend of 30+ years said to me just yesterday, "You know Lu, I think you've lost all your weird and crazy. You never get in high spirits anymore. You're just always kinda in the 'meh' zone."
Holy cow, wake-up call right there.
I think this is the main reason I have resisted the anti-depressants my onc has suggested, though -- this emotional flatness is the problem and I'm afraid anti-depressants will just flatten me out even more. And I don't really feel depressed, per se... I just feel like "my old spunky self" as you put it shuffled off to Buffalo and forgot to come home. And I think about cancer WAY too much and I'm really worn out with myself over that. But depressed? Well heck, I probably ought to be, all things considered -- but that's not exactly it.
Femara does something that is like a cousin to depression, I think, but it's not quite the same thing... it's just a flattening.
What do we do for that? Does anyone know? Can we talk about this? Maybe we could help each other...
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Lulubee...I agree with EVERY word that you just wrote in your post.
I could have written that myself.
You can PM any time. We'd have a lot to talk about.
Artsee
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Ditto, for me as well. This is the first year in my life I haven't put up a Christmas tree, or ANY decorations for that matter. I don't feel depressed, just don't have it in me. My family doesn't know quite what to think. They are all kind of tip toeing around the issue. I know they are all wondering what it going on with me.....as I am usually gung ho with music, baking, etc. I am buying gifts & wrapping them. But that's it. Surprises even me.
On another note, how often is everyone getting bone density scans? I had one prior to starting Femara, but it's been 2 years now....just wondering what the standard is for monitoring bone loss.
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Jacee......I agree with EVERY word you said too. It sounds at least that the last three poster are all in a slumperino. Forced myself to put the tree up. So behind in shopping and the spark is not there. I always had to have Christmas music on too and din't bother this time.
As for scans I had a heel one that showed bad osteoporosis about 10 years ago and nobody has even mentioned that I should have another. I really don't want it because my insurance wont cover anything that has to do with osteoporosis, because it was a preexisting condition when I joined that insurance company.Also I had to go off the drugs for that because they gave me chest pains and ended up in the ER twice.
We have all been diagnosed some time ago....so why the feeling like this? FEMARA?
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I wrote to Novartis Canada asking how long does it take for side- effects to go away after finishing femara. They called me and the answer was 2 days. Unbelievable..... It is now 11 days since I stopped femara and my eyes feel better and I have lots more energy. I still have flushing and hot flashes and bone pain. I have not taken anything for constipation for 2 days......sure hope it is gone after all these years..... Unbelievable......
bc hugs jinky
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This has probably been addressed earlier in the thread - but 86 pages is just too much....
Anyway, I'm on letrozole by mylan right now. My hubby just picked up my refill and he said the pills are a different color - from a different company. I'm just getting accustomed to the SEs from the one I'm on (lots of aching, but still WAY better than I felt on tamoxifen), so has anyone noticed a difference in SE's from one generic over another?
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Hi Gardengumby,
I've been on pink colored Letrozole by Mylan for 3 months and the only real side effect I have is very loose bowels. My Onc. gave me a 30 day sample of the yellow/goldish colored ones (sorry, don't remember the manufacturer) so I could see if it made a difference. I didn't notice any differences at all in a month of the new pill.
Hopefully you won't notice any negative differences. Keep us posted and good luck.
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SeaShelley - if you don't mind me asking, how long does your oncologist say you need to take the letrozole? Mine says she wants a total of 5 years on "something". I had tamoxifen for 6 months before it tried to kill me (well, really it tried to kill me at 4 months, and it took 2 more for the doctors to figure out what was going on), so I've got 4.5 years to go on letrozole. But, I see that some people take it for much longer, and other than stage IV folks like ChrissyB, I don't understand why the differences.
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My Onc. said 5 years. I think the difference is that some studies are showing that taking AI's longer is beneficial. I will be interested to see what the studies say in 5 years about taking it longer and discuss it with my onc. more at that time. I'm only 46 and think I will be nervous about stopping it at 51. I do a lot of good things with my diet and supplements but like the idea of keeping the estrogen controlled as long as possible (as long as it's not taking too much of a toll on the rest of my body).
Sorry to hear of problem with Tamoxifen - Scary!
I just noticed that you're from Seattle, too. Nice to meet you neighbor!
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chrissyb - the drug that Anthunter 1982 is talking about is called FORTEO. It's a totally different type of med than Fosamax, Boniva, and the other bisphosphonates. It does build bone. I had severe osteoporosis prior to my having breast cancer, and FORTEO really worked. Well, unfortunately, the Femara plus the meds that I have to take for my COPD (some of which contain steroids) are really messing up my bone density, so now I'm on yearly infusions of Reclast in my onc's office.
If I could go back on FORTEO, I would, but the max is 24 months :-(
Jacee asked how often others have a bone density test - I have one every year.
Artsee - I could be wrong, but I think with the new health laws that are going into effect, that you may be covered for a bone density test. You might want to check it out.
Karen
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Gardengumby, the difference when taking Femara or any other med is, at an early stage it is used as a precautionary where as for stage IV it is constant treatment. We use these drugs until they no longer work for us and we have a progression then we change to something else. As a stage IV, I will be on some form of treatment until the day I say enough.
Karen thanks for the info on Forteo. I hadnt heard of that one.
Love n hugs. Chrissy -
Lulubee, you know I feel as if I have been so blessed. The support I have had is amazing. Today I received two offers to come over and help me make cookies or decorate, but the joy in life has just been sucked out of me and it feels good to have it back.
Today I met with the Dr. The pain is not from lympedema but until it goes away she offered therapy to make it better, in the mean time she ordered me two patches. One is lidoderm the other is flectorpatch. I have the lidoderm on my thumb and wrist,along with the thumb stabalizer she asked me to wear for a week and I am able to type with two hands. Its been weeks since Ive been able to do this. The lidoderm is put wherever the pain is and is kept on for 12 hours. Then I can pu t the other one one. The patch is a cloth backing and the inside feels kindof slimy, but the coolness felt amazing. She thinks that the aromiasin will make this go away....
Blessings to all: Onward
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Hi everyone
I've been reading everyone say that they feel like the life or spark has been sucked out of them by Femara.
Interestingly, I had a colleague say to me-" I am concerned about you because I can see that the spark in your eyes that used to light up a room when you entered is not there." This was before I started my hormone suppressing. I have to wonder if it is the Meds or the experience of all we have gone through and the unspeakable stress that comes with. I am on the generic form of Arimedex not Femara. Just for the record, it sucks too.
I Know one thing...I want my sparkle back and I am determined to get it!
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I heard this on the radio tonight and pulled it up on the internet. 1/3 of their study of almost 700 women quit using AI's due to side effects. http://www.bbc.co.uk/news/health-16107978 These drugs have been out for years, are they just getting it now????? Onward
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kdeit..I have heard about those laws and I haven't heard about the year that will go into effect. My DH thought it was 2013? I'll have to check on that but....like I said the Osteo drugs...and I took three different ones made me VERY sick. Even if the insurance covered I would never go through that again.I thought I was having a heart attack and went to the ER a couple of times. Then the light went on after nothing was ever found. The Osteo drugs....went off and never had that happen again.
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Hi artsee,
I'm sorry you had such a bad time with the osteoporosis drugs - that's why FORTEO may be something that you should look into - it's totally different from the rest of them - it's a teriparatide injection that contains a synthetic form of natural human hormone called parathyroid hormone. It actually causes your body to build new bone, not just to strengthen existing bone. It is so different from the other osteo drugs, that you might want to talk to your doctor about it.
I hope you can at least get a bone density test soon so you'll know whether you need to be concerned or not.
Hugs, Karen
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Hi dear ladies,
It' really terrifying! Taking AI' is bringing about pains and depression - you should take medicines against! Causing height pressure and height cholesterol - take medicines against!
Taking all sorts of vitamins supplements on your own too, what are we coming to?
I'm really afraid sometimes!
Take care!
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What a cute picture slousha! Who is that cute little baby??
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Hi Omaz,
This little baby is my granddaughter Lana, born last year during my cancer therapies!
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OK ladies, I haven't posted here in a little bit, but wanted to step up & be counted.
I hit my 2 full years on Femara on Nov 16. I ran out of my 3rd month of generic Femara on the 18th & didn't have money to pick up Rx until after T-Giving. I thought when I finally did pick it up, that I was just going to continue on a "no AI" routine until the beginning of the year. So here it is, almost a month without "the pill". Honestly, I would love to report that I feel so much better, but in reality, I'm still stiff & sore when I get up, stiff & sore after sitting at work for an hour or so, still having hot flashes (Maybe not quite as many). The one big difference I can report---I went to the mall today to Christmas shop! I avoid the mall like the plague, always have, but today I knew there were several things I wanted to get there so I went. I had fun, I people watched, I slowly wandered through almost every store (unheard of for me-before or after BC) & most of amazing of all, I was very much in the spirit of the season.
I will resume "the pill" Jan 1, but I am enjoying my self-imposed "sobriety".
Merry Christmas all!
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Joni- A day of fun!!! So glad to hear that. I'm still kinda "blah" about the Christmas season this year.
Something I have been meaning to ask....Since starting Femara, I seem to have a hard time crying. Not like it hurts are anything wrong with my eyes. But, rather, just kind of emotion-less. Have been to several movies in the last 2 years where my DH even shed a few tears...but not me. Then I've noticed situations where I know in the past, I would have cried, but now I don't. Has anyone else noticed this happening??
I'm glad you are getting a break from "the pill". I think it would do us all good to take one!!
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My crying game hasn't been affected, if anything it's worse & that's saying a lot because I cry on coffee commercials!
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jacee - I almost wish that I had a problem crying - it seems like I do it at the drop of a hat anymore. Whenever anything goes even slightly askew - I cry!!
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I understand about the not crying thing. I feel numb inside like no matter what happened in my life, good or bad, I would have no reaction. I am a walking zombie with no joy in my life anymore. I just go through the motions now.
No tree this year, minimal shopping done. Even wrapping the few presents I have seems like an overwhelming task. I'm not sure if it's the Femara or not. I've only been on it about 2 weeks.
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I wonder if the "not crying" is more a result of having no estrogen, rather than the femara itself. My estrogen is 0. It's definitely a tolerable side effect, just weird for me.
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Jacee, is having zero estrogen safe? It was a question I ask and my doc danced around the topic.I think she did not know the answer. What is your Onc saying. And wow, that is a testament to the Femera really working for you.
Interestig about the tears ladies. I am on anastrozole and the first two weeks I cried almost nonstop. Commercials, and even my own thoughts. I put my Christmas tree up and sobbed thinking back to when my children were little. I wonder also if it is the lack of estrogen playing with emotion.
My therapist tells me this is typical menopause emotion, but I have been in menopause for over 2 years snow since my first chemo.
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Jacee...I have no trouble crying and the reason being I"m so disgusted with the way I feel it makes me sad.So there are tears...I hear what you are saying.
Having no estrogen is NOT good. It has made my body have a numb feeling, no spark and get up and go. Can't wait till the Holidays are over.I feel almost like a stone pillar at times.
The temptation to go off of Letrozole is so huge, but I know I must suffer through this., I've gone this far. But the drugs to keep us well are crappy when it come to the rest of our bodies.
I've been in menopause for 15 years and still feel like PMS is my shadow. Ugh!!
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Merilee=My Onc said that was exactly what they wanted???? Yes, I guess it's good to know the femara is working, especially since I decided to only go on half a pill. Meet with ONC today. Really concerned about my bone health. My first dexa scan was perfect. Said my bones were like those of a teenager which was great. Anxious to see what 2 years of femara has done. Will report back.
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Jacee I am only taking 1/4 of a pill and can feel it. The onc team hopes I can build up a tolerance. I had a hideous experience with Tamoxifen a few years ago so I am trying to be more cautious.
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Ladies, why don't we all try together to figure out how to feel better? If we keep telling our stories and sharing our observations and insights about what helps us navigate Femara Funk and what doesn't, surely we can come up with something!
Let's see if we can't get happier!
I have mets now and zero estrogen is keeping me stable. So I love me some Femara because it's buying me TIME. BUT as long as I'm still here living on this stuff, I want to feel better and actually live.
I want to share some things I've been thinking about, and I would love your thoughts and feedback. First I need to give you some context so you'll understand where my thought stream is coming from... please understand when you read the next couple of paragraphs that it's not my purpose to recommend that you all try what I've tried, rather my point is to explain what I've been through in the past that led me to where I'm thinking now... particularly about how I might help myself get out of this funk. And I should probably mention that I take an integrative approach to my health -- meaning I do it all. I see two wonderful oncologists regularly, and I also consult a naturopath and occasionally a Chinese doctor. It all helps, and that's what I'm after.
Enough context; here goes...
I'm remembering something I learned a decade ago (before BC) about estrogen and seratonin. I had gotten in a "forties funk" that wouldn't lift and just generally felt tired and blue. I called a friend of mine who authors books and teaches seminars on herbal & nutritional healing to see what she would suggest. I told her I thought it was premenopausal hormone issues, and honestly I figured she would suggest something like black cohosh and wild yam cream... but instead her first question was, "When was the last time you had a dream?" Okaaaaay... whaa? But, funny thing, she was onto something -- I couldn't remember dreaming. It had been months. She said that was a clue that I probably needed a seratonin boost... that seratonin naturally diminishes mid-life and women often confuse the effects of that with the symptoms of estrogen drop. What I'm taking away from this experience is... I'm remembering that she told me if I had a seratonin boost, my hormones wouldn't bother me so much.
Sure enough, once I got some seratonin rolling (via 5-Htp), I started dreaming from the first night, sleeping deeply... and my happy came back. After a few months, I found I didn't need the 5-Htp anymore.
Fast forward a decade, to right after I had the ooph and started Femara and wanted help with learning to live with no estrogen. The ND I consulted told me to start taking melatonin every night, gradually building up to 20 mg per night. Well, guess what -- melatonin converts to seratonin in the body. It's not a magic happy pill or anything, but it does get me into deep sleep, and I feel better able to cope during the day when I actually remember to take it regularly.
So here's what all this leads me to wonder...
None of us here can belly up to the estrogen bar anymore, but I wonder if all of us on estrogen blockers need our seratonin jacked up so we can feel better.
Maybe this is why our oncs insist that we start on an SSRI when we start taking an AI??
SSRI stands for "selective seratonin reuptake inhibitor" -- meaning it makes whatever piddly amounts of seratonin you still have circulating in your system more available by making it pause in your neurotransmitter pathway gaps longer (that's a kindergarten explanation, I know, so if any nurses are reading this, jump in here and make this sound more intelligent! Haha!). And then, voila', you feel better.
Having said all of that, I tried an SSRI (Lexapro) for a couple of weeks a year ago, because three of my doctors (both oncologists plus my gyno) were urging me to start taking it when I was diagnosed with mets and immediately had the oophorectomy and started Femara -- wham-wham-wham, all in one month. On the pro side, Lexapro did ease the sudden onslaught of hot flash terror, and I felt further away from all my 'shock and awe.' On the con side, it made me feel listless, flat and sort of catatonic, but the worst se was I felt like it was repressing my respiration, particularly at night. That freaked me out, so I quit. I probably should have stuck it out for six weeks to see if those side effects eased off (and now I wonder how much of that might have been from my body adapting to Femara!). But I decided to just gut it out and experiment with natural remedies for mood lift. And I HAVE found some that help, but not as much as I would like. I still want to be happier if I possibly can.
SO... all that to say... here's where I am a year later...
What I desperately need now is 1) energy, 2) mental focus, 3) an end to the steady weight gain (20 pounds in the past year, HOLY COW!), and 4) a return of happy, lively me.
So once again, I've been reading my eyeballs out this week on the different anti-depressants.
Right now, I'm looking into Wellbutrin. It's not an SSRI type A/D, and from what I'm reading, it does not help with hot flashes like Effexor and Lexapro do (although you can take it in combination with Lexapro). But it DOES help with the things that are bothering me even more than hot flashes right now... energy, mood, and weight... and it looks like there's even a little cherry on top for AI gals in that it's reputedly bone-building, whereas some other anti-depressants can hasten bone deterioration. (But then again so can depression!)
I'm thinking it might be worth a shot.
I've been avoiding the A/D route for a year now, but you know what? Dang it, I think I need to live. The real me is/was a happiness rockstar. But this Femara Funk person I am now is sitting here looking at a pile of STILL-unpacked boxes that contain my beautiful, magical, enchanting Christmas village... boxes which have been sitting there for almost two weeks because I haven't mustered the gumption to set it all up even though it's one of my favorite things in the world and my children love it and I spent YEARS collecting pieces I adore... and I'm looking at those boxes and thinking DANG IT, I MISS ME.
So I think I might actually make that phone call to the psych today. I'm scared to do it, but I'm scared not to. 2012 has GOT to be a better year for me.
And I'm going to set out my Christmas village today. I AM.
Okay, I've blithered and blathered here long enough. Somebody else's turn now...
Thoughts on any of this, anyone?
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Lulu I love your double edged approach to combating the beast and will admit I do the same thing. My GP is also a qualified naturopath and often recommends the alternate when dealing with my finicky system. I can't take nasads as they give me stomach problems so I have been using boswellia, tumeric, fishoil etc for the relief of joint pain. I know I have very bad knees, in fact I'm going to see the ortho next week about replacement, but I also have a lot of other joint pain as well and even using all the alternates, I sometimes, well most times am not pain free unless I take a heavy pain med and I prefer not to do that as I know down the line I'm going to need my liver and kidneys at their optimal.
Almost three weeks ago I saw my doc and the with the usual complaint about the pain. He told me a story of one of his patients (no names just symptoms). This poor felow had bladder cancer, had had it operated on and continued to bleed and form clots in the bladder which caused excruciating pain.
There has been some research on Vit K as an anti inflamatory so after all the warnings that go along with Vit K, this man was injected. Three weeks later he was back for another. The doc was really surprised but the upshot is that that little jab gave this gentleman no pain, better sleep, more energy and he was happy for the first time in a long time because he was pain free. He now has that little jab every three weeks as that is about as long as the effects last.
He suggested I try it and so, of course, I said yes I'm happy to try anything that makes it easier for me to move. All I can say is WOW! Within a couple of days my energy levels skyrocketed and instead of looking at things and saying I must do that and never getting it done, I was looking and doing! In the past two weeks I have totally spring cleaned my house from top to bottom, changed two bedrooms around, cleaned cupboards and driven hundreds of miles without fatigue. I have always been a happy person but at times I was falling into the funk of whats it all worth but I will definitely line up for that little jab in a weeks time just to have the energy and lightness of heart that it gave me.
Lulu, I take melatonin regularly and that did and does help and I recommend it to alot of others as well.
Love n hugs. Chrissy
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Vitamin k, hmmm I am going to look at that. Coming out of chemo I used a b12 complex in drop form. That also gave me better energy but it is easy to over dose which would actually make me feel buzzy, which I did not like.
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lulu- "Maybe this is why our oncs insist that we start on an SSRI when we start taking an AI??" This never happened to me.
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lulu= me neither. Same as above. I've never heard of an SSRI prior to you mentioning it.
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Really? Now that is interesting...
Then maybe they tried to get me on an SSRI not just because of Femara but because the oophorectomy and Femara were both hitting me at the same time... and within a week of getting the Stage IV shocker (I had been Stage 1 NED for three years).
All I know is both my oncologist and my oncological ob/gyn surgeon were after me to get on Effexor (which is an SSRI), and the sooner the better, because they knew I was about to get slammed by instapause. My onc was not too happy that I was non-compliant about that -- she said "the year ahead is not going to be pretty, your body is going to be in shock and the adjustment is hard," and added half-jokingly that if I were on an anti-depressant it would make her job easier. But she respected my decision.
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Dear ladies,
I just joined this forum. Usually I browse medical websites, where I try to find the answers to my questions. here I want to let you know that there is an ongoing trial in Johns Hopkins for postmenopausal women who start Femara. They give 4 mg Zometa as IV injections every 6 months. I joined this trial this summer after my ovaries were removed (a side affect of being on Tomaxofen). I knew that Zometa showed a very impressive result for premenopausal women (together with ovarian suppression). I had RS 20 and micromets in the sentinel node, and no chemo - I wanted some additional treatment to Tamoxifen.
The trial is designed to check if Zometa improves side effects from Femara. I don't know about other women from the trial, but I know that I started developing bone and joint pain at the very beginning, but the symptoms disappeared within a couple of weeks. I am very happy with my current treatment, and I am planning to get Zometa from my local oncologist (or family physician) after the trial ends. I know that it is good for my bones and will also improve my chances for disease free survival.
I think that based on the latest news from the 34 conference in San-Antonio, every post-menopausal woman can ask for Zometa. I would recommend it, especially for women with low bone density, and also for women with mid-high risk for recurrence.
Is there anyone else who is taking Zometa and Femara (or any IL)? What is your experience with the Femara side effects?
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I'm not in the trial you mention, but am getting the same treatment--femara and zometa every 6 months for 2 years. I still have the femara side effects--no sex drive, achy joints, ankles and bones in fingers feel crackly and crickety when I wake up in the morning almost like they are just going to break under the pressure of walking or moving them. Definately feel the femara funk--sometimes feel so sleepy out of the blue that I can barely keep my eyes open, but then it disapppears as fast as it came on.
I'm going to have to look up the study you're talking about and read more into it. Do you have a link?
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I've only been on Femara/Letrozole for about 3 weeks, so don't have near the experience of the rest of you. I love tea, and have noticed that if I increase my intake, some of the aches disappear. I'm also taking curcumin (which I'm a little worried about to be honest, as I must be very careful about anything that thins my blood - I'm still on warfarin due to the clots caused by the tamoxifen). I have my next blood check after Xmas, so I'll see if the curcumin is causing issues.
I'm not having as much edema now as I had for the first week or so, which is good. I haven't noticed the flattened effect you folks are talking about yet - we'll see what time brings.
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gardengumby -- don't look for the funk if it's not in your face! Haha!
Who knows? Maybe the funk will pass you by. Mine has lifted a whole lot this week, and I am gonna ride the wave as long as I possibly can!
NewOlga - welcome!
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Garden...I've maybe commented on this in the passed...can't remember s--t sometimes, but I was on Femara and changed to Letrozole about 6 month ago. the pill is 'pink', how apropriate right?
Well, the darn thing is nearly killing me. I have never had this many s/e's before. How that can be when it does the same stuff f(makes us feel like 99) no matter what. But it does seem more harsh.Everyday there is a new pain popping up. "Have pain will travel" I call it now. 2013 can't come early enough for me.
I've also tried curcumin, the Dr. thought it was the cause of my Acid reflux which I never experienced before. It is now gone so maybe it was to blame. It is an Indian spice.
Take care.
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Zoledronic Acid in Aromatase Inhibitor Induced Musculoskeletal Symptoms trial (on Femara plus Zometa) is here http://clinicaltrials.gov/ct2/show/NCT01194440?term=zoledronic+acid+breast+cancer&rank=44.
I believe that we all have a genetic predisposition to tolerate well (or not) Femara and other ALs. My Aunt had the same side effects for Tamoxifen (ovarian systs) as I 've got despite the 20+ age difference. She also tolerates Arimidex well. I tolerate well Femara. It must be genetics.
On the trial they make special blood tests for the markers - I hope they will find some markers in my blood that point to Femara tolerance. I wish to be useful to find a way to relieve the sides affects for all woman taking ALs.
Does anyone have a relative who is taking Femara (or used to take) and having the same reaction to this medicine?
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Hi Artsee. I was never on femara, they started me right on the generic by Mylan (the pink one). In a couple days I move to a different generic (I don't recall the maker, but it's a tan pill), we'll see if the SE's change.... BTW, when I first started on letrozole I had TERRIBLE indigestion. It didn't matter what I ate - and that was before starting the curcumin. The indigestion has faded now, so possibly the problem for you was the letrozole, not the curcumin.
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Hair loss doesn't bother me...didn't have much anyway...that's what they make these nice wigs for! I do not; however, want SE's like weight gain or joint pain. I cannot take feeling older and having no energy because I've always been so energetic and healthy. QOL is tops on my priority list...ranked above longevity.
I'm post menopausal so I guess Femara would be the drug of choice if I were to take any anti hormonals, which I haven't yet decided. My girlfriend takes Femara (doesn't have bc) and is also on the estrogen patch...go figure? Her doctor said it protected her from bc. She doesn't seem to have any ill effects from it..she's quite an athlete, skiing, tennis, swimming, etc.
lulubee: Do Not...let a dr. give you anti depressants to take if you don't even "feel depressed"... they are addicting and you can't just start and stop taking them. A dr. tried to do this to me once, and I almost fell for it...that is until I went online and checked out the SE's. I told him "no thank you"...boy was he pissed!
There is nothing wrong with being flat....flat is good! My DD tells me my personality is boring...in the meantime, she's bouncing off the walls and stressing out over everything. I wouldn't trade places with her for anything. I enjoy having a sense of calm and peace about me that I attain through meditation and eating well. Diet has a tremendous effect on mood swings. Cutting sugar and starches out of your diet will make a big difference in your well being, and it won't hurt you.
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"Cutting sugar and starches out of your diet will make a big difference in your well being, and it won't hurt you.
It will also help ease some of the joint pain!!
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I have to ask...........I have been searching for an answer, but can't seem to find any other mentions of lack of libido or pain during intercourse while on an AI. I have been on Femara for about 18 months, and this problem has gradually gotten worse until I am about at my wits end. I can handle the joint pain, sore feet, etc., but this sex thing is the worst! HELP!
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Hi Lindatwo, I'm really sorry to have to tell you that yes, painful sex is caused by the Femara. Actually it's caused by the lack of estrogen which is caused by the Femara but there are a few things you can do to help in that area. There is a thread titled (I think) The end of painful sex or something like that...........I'll look for it on a moment but if I look now I'll loose what I have written....lol. The lack of libido is caused by the same thing but as they always say, use it or loose it, if we can get past the pain the rest usally follows.
Love n hugs. Chrissy.
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Found!!! It's called ....The end to painful intercourse!!!!!! Yippeeee!!!!............and it's in the Stage IV forum. Sorry I can't do the link thing but it shouldn't be hard to find. Hope this helps.
Love n hugs. Chrissy
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The thread is called'the solution to painful intercourse!!!!Yipeee!'
It's really a good thread and is very helpful. Our bodies have been turned into old lady bodies from all these drugs. If the Drs. wont help then we can help ourselves with discussions about this issue.
They welcome anyone with problems over there, even if you are not stage IV.
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Thank you, I do realize it is the lack of Estrogen, but so far I haven't been able to find a solution. I think I have tried everything EXCEPT hormones, and nothing has helped. I cannot get past the pain and I do have a high pain tolerance, I am not a wimp. My GP gave me an RX for Premarin vaginal cream and I was going to try to use a half dose, but after one dose, I chickened out. (My Onc of course was not pleased with the idea either!) Anyway, will run on over to that other thread and see what they have to say, Thanks again!
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Can't blame you for not wanting to put any estrogen in your body. Anyway they swear by something called Scream Cream. It's supposed to make you feel like your old self and takes the pain away. I have not tried it.
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Scream Cream and lidocane to deaden the pain a little until the cream takes over. Sounds like a plan...now I just have to find some...or ask my doctor to give it to me.
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I wanted to start taking melatonin but since I take Lorazepam I couldn't. I've been on Lorazepam for more than 10 years. I wish I had never started taking it. At the time I didn't check drug side effects like I do now and it is great for anxiety but highly addictive.
As far as Femara, I've been on it almost 3 weeks and I'm having joint pain where I never had any before: fingers, toes, calves and even my gums and I'm so tired all the time. I'm not taking it anymore.
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Hello all,
I'm writing to chie in on the conversation about taking antidepressants, specifically SSRIs to help deal with SEs. I highly recommend this strategy.
I have only occasionally posted as my biggest issue with FEMARA when I started 1 1/2 years ago was nausea. At that time, I couldn't get much info on that from this thread.
BUT after about five months, a psycho-pharmachologist put me on a combo of drugs that has kept me feeling much better ever since. I take small doses of wellbutrin which is an old-fashioned antidepressant (150 mg am and pm), prozac which is an SSRI (10 mg am), and a benzodiazepene (clonezepam 1 mg, pm). It's like a cocktail. I also take melatonin at night, although I notice one person has been told it shouldn't be used with lorazepam(?!). You can get addicted to benzodiazepenes and some people have to up their doses over time to get the same benefit. To avoid this problem, I am constantly lowering my dose. I take .5 mg whenever I've had a good sleep the night before. So far, this has worked. I think I'll wean myself completely but I never do. However, neither do I get so dependent I need larger doses.
I do have enough joint problems that I am having a knee replacement (problems started before femara) but otherwise I am living an incredibly full, energetic life. If I had not gone on this regimen, I would have quit the femara. I could not imagine being nauseous for five years. I understand I am extremely lucky not to be having more troublesome SE. But I do have many in some degree. Perhaps the "cocktail" takes the edge off. In my opinion, assuming femara will help me as my doctors insist, this cocktail enables me to stay on it and lead a good life.
In my experience, these meds do not flatten me at all. I was surprised to see that concern. I am just as likely to bubble up as I used to be. It feels to me like I am "myself." I don't think you have to be "depressed" to benefit from these drugs. The brain doesn't know why the neurotransmitters are interrupted. It just reacts accordingly. To PTSD or Femara or stress.
Hope you all have good holidays despite it all. I'm working hard to make this time good by planning and filling my days. (I have 3 grandchildren nearby so that helps a lot.)
Best wishes, Deirdre
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Dear Femara ladies,
Till March 2011 this topic has been the first site, I was looking for every day. I was lamenting about my SE's, trying to find comfort in experiences of other sisters, I got here consolidation and a lot of practical advices, researching how to cope with difficulties from this medicine. As my Onco proposed switching from Femara to Aromasin (exemestane) I was asking myself what difference in SE's should be? I was browsing through www of all medical sites and looking the information about.
Although - Femara should be known as the most powerful aromatase inhibitor and it should decrease the amount of estradiol the most (studies in vitro and in mouse), but it is also good (probably the best one) in patients - after 21 months of it I decided to let ease a little my knee and hip pains, to try leave off pain killers and to overstep Aromasin (exemestane).
Wishing us whichever medicine to be possible to keep back any recurrence!
Take care!
Blessed holiday seasons and the healthy year 2012!
Usha
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Good luck Usha, I sure hope you get some relief by the change.
Blessings to all for the Holidays and I wish for you all good health and happiness for 2012.
Love n hugs. Chrissy
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I might not get back on here before Christmas so I wanted to take this opportunity to wish all my good friends on BCO a very MERRY CHRISTMAS AND A HAPPY, HEALTHY AND PROSPEROUS NEW YEAR, may 2012 be a good year for all!
Gaynor
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Femara: I started in February along with T/C chemo. finished the T/C chemo October 4th. Can't say that I have had many Femara SEs. My hair is a fuzz but growing, had hot flashes for a month or so and my pelvis hurts due to a fracture caused by a metastasis.
As someone on here writes 'my favourite side-effect is being alive'.
Jeannie
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Jeannie, it's good to hear that someone else is having little or no SE's from Femara, I was beginning to think I was the only one....lol.
I agree, that would also be my favorite SE as well...............being alive!
Love n hugs. Chrissy
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I started a different generic a few days ago and have. Noticed that side effects have changed. On mylan generic I had no hot flashes, some edema, constipation and muscle pain. With the Cara generic (it's tan) I am having lots of hot flashes, and fairly severe pain in my feet. The constipation and edema seem to be a thing of the past. So confusing!
Anyway Merry Christmas to all you lovely ladies. As you say, being alive is the best side effect! -
Merry Christmas my Femara friends. I am still on my self-imposed sabbatical of no Femara. I plan to start back up on Jan 1. I will definitely be able to tell about aches & pains, as they have appreciably lessened over the last 5 weeks or so. Have a fab time everyone!!
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Thanks Eph!
Hoping all of you have a joyous Christmas celebrated with all your family and friends. Also wishing for a better 2012 for all of us. Stay safe!!!!
Love n higs. Chrissy
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Eph..YOU GIVE ME HOPE!
Merry Christmas and a happy and HEALTHY New Year ALL!
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I am new to this thread. Just had ooph 2 weeks ago and was put on Femara today. It is the generic little pink pill. I am just starting to learn about it.
lindatwo- my gyn who did the ooph recommended a cream for vag dryness called Carlson Key E. I have not tried it yet. She said you can get it from amazon and that it is very effective and has no estrogen in it. Might be worth looking into it.
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Welcome, Ginger, and Merry Christmas! Take care of yourself while you're recuperating! My surgeon shook his finger in my face and said, "You have one incision on the outside but you have hundreds of places trying to heal on the inside that you can't see. You only have one chance to heal properly from this surgery, so cool your jets for a couple of months!" Good advice.
Get enough sleep and keep your jets on the cool side! :-D
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Ginger, Thanks for the info on Carlson Key E cream, I will check it out on Amazon today! I am willing to give it a try. I am seeing my Onc in Jan. and will ask him about Scream Cream and Lidocaine also. My poor DH has been very patient, but I feel bad for him. Merry Christmas to all, and may we have a SE-free (as much as possible) New Year!
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Hi Ladies. Been on and off this site for quite awhile. I don't want to be repetiive, however, Good Days.Com will help with the Femara costs. I have Aetna, and I would have to pay $231.00 a month, I pay just $30.00 for the pills. Actually I have been off the site for awhile, so now I will go back and read. Just wanted to give some info that might help.
Hugs (now have to go back and read).
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Hi Ladies. Been on and off this site for quite awhile. I don't want to be repetiive, however, Good Days.Com will help with the Femara costs. I have Aetna, and I would have to pay $231.00 a month, I pay just $30.00 for the pills. Actually I have been off the site for awhile, so now I will go back and read. Just wanted to give some info that might help.
Hugs (now have to go back and read).
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Again...22.50 for the generic at Costco. (30) pills. I don't know why my insurance won't give me 90. With us going to Arizona for part of the winter maybe they will let me have it.
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I took my first little pink pill last night...nervously waiting to see if I have side effects. How soon did you ladies notice side effects?
For some reason; my prescription was free. Not even a copay. Not sure why. Maybe a promotion because it was a new prescription?
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Ginger, maybe you met your out of pocket for the year?
I think it was about 3 weeks before my s/e's started.
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hi Ginger48,
My SE's started two months after first pill!!!
Best
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Months later and gradually kept getting worse.
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Some of you are mentioning constipation as a side effect. Mine has gotten terrible! I have rock-like stool everytime I try to go. They are small and dry and come out one at a time. Sometimes they join together and boy is that painful. What can I do to help relieve this?
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weety I also have that problem, but really can't blame the Femara. There are some things I really find helps me. First I eat an apple or a pear every day without fail, next I drink Metamucil every day. Along with those I also eat lots of whole grains, beans, prunes or other dried fruit. I hope this helps.
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I could not take the side effects of the little pink pill, could not believe how potent it is for its size. The following were the side effects for me: severe constipation, headaches, joint aches that I could not hold paper in my right hand or turn door knobs, car key etc, dry dry dry everywhere and u know what I mean, mood swings with absolutely no interest in anything that I have sometimes felt is it worth it, ditorted smell and taste, vision changes, and so on. Finally I had to talk to my Doctor and he has asked me not to take it for three weaks. After that I am not sure which med he is going to put me on. I am loosing sleep that I am not taking any meds. Have anyone gone through what I am going through?. What should I do when I am not on any meds?. Sweats are my weakness and now I am eating more as I am stressed. Thanks in advance for your advice.
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Oh I forgot to add that I have been taking this pink pill for almost 2 1/2 months and before that I was taking Tamox for 3 years and I did well with that. Thx.
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MBoss could you go back on Tamox? You seem to be having a really hard time with Femara. I do have the joint pain which I control with an over the counter pain pill daily. I do have the neuropathy, but only at night. I take L-Glutamate for that which seems to help me.
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Thanks everyone for responding. I guess I may not feel SE right away which is a bit of a relief. I am starting back to teaching preschool next week after being home for 10 weeks and was afraid it would all start at the same time as I am adjusting to being back to my busy job.
MBoss- my onc said if I had a lot of trouble with this drug; I could try tamox so maybe you could go back on that?
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I have been taking femara for 9 months now. Side effects did not show up until after the 7th month. My finger joints were hurting and there is pain when I twist or fold them. Someone from this blog recommended AVEMA (powder to be mixed with juice or water), After taking it for 5 days, the pain is not as bad, I think it helps. Let's see after 30 days, I will keep you all posted.
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I am hoping that my Dr would put me back on Tamox. I am not sure if Femara is better than Tamox. I want to try eveything possible to be healthy.
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Ginger, it may take some time for the SE's to kick in if they do at all. Some people, like me, have very few se's from Femara and you could also be one. The ones I do have, i.e. skin dryness, vaginal dryness, hair thinning to me are all managable and not problematic at all in themselves. I also have osteoarthritis in just about every joint so I atribute my joint pain to that as it was there before I started with Femara and has not gotten worse other than the progression of the arthrits itself. Good luck and hope you have few or no se's at all and if you do, there are other options when it comes to this form of medication. If you are not on a med for only three or four weeks, it should make no difference to you being protected as the drugs hand in the system for a good while after finishing them that is why they do the break before starting something new. Good luck!
Weety, you poor love! There is nothing worse that constipation to that point. A good otc stool softener is a must when you are at the point you are now as well as loads of fibre and dry fruit. Also, as Kira said, an apple every day eaten last thing before bedtime is the very best to keep things moving. I learned that from my dad many years ago and used it after having my children as I ended up almost plugged each time so I used dad's remedy and no more problems. A glass of tepid water first thing in the morning is also good for the whole GI system. I sure hope you get some relief soon.
MBoss, I started on Arimidex but because of some very bad se's and no QOL, my doc changed me to Femara and it has been great ever since. Sometimes it is the way a med is put together (chemicals used) that makes the difference in wether we can tolerate it well or not. You can also ask your doc why he changed you from Tamox in the first place and if it was only for the fact that you are post menopausal, then I would ask to go back on it if you had no problems. There are a lot of women who are post men. that take it rather than one of the AI's.
Love n hugs to all. Chrissy
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my mother's just started femara boy, do we get mood swings from her -frustration and tiredness. she can fall asleep anywhere when she takes the pill. I read AVEMA I am in the UK I don't know if there is a substitute or what it is exactly but would love to hear from other's please.
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Azura, for the fall asleep anywhere, get your mother to try taking the Femara at night, it does help.....a lot! The mood swings are because in the drop in estrogen and will even out so hang in there. I can't give you any information on the AVEMA as I live in Australia but I'm sure one of the other ladies will step in and give you that information.
Hope your mom evens out on the meds soon and they are the only SE's to affect her.
Love n hugs. Chrissy
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Hi ladies................................tried the good days.com, and they emailed me back and said they do not cover the drug Femara...................figured it was worth a try.
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Azura, I agree with Chrissy have her take the Femara at night. The mood swings will settle down. I can't say about the hot flashes I am still having them and have been on Femara for 14 months now.
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For y'all who have trouble with constipation - be sure to drink enough water!!!
As for the femara/letrozole SE's, mine started immediately, but are now (2nd month) fading a bit - unlike the tamox SE's that just continued to get worse (for me). Hopefully the letrozole SE's will not rebound down the road. I'm taking curcumin and have started on Glucosamine Sulfate for some of the joint issues - and am still on warfarin for the blood clots the tamox caused (hopefully I can drop that one within the next few months). When things get achy at night I take a Tylenol (which also helps me sleep). Also I changed from the Mylan generic to the Cara generic - maybe that made a difference, too.
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Thought I would check out this thread. I was on Arimidex - could live with everything but my blood pressure going through the roof and my heart beating fast - scared me. Next was Aromasin. Besides the blood pressure and rapid heart, the hot flushes were incredible and I would turn beat red right at 12 hours after I had taken the pill and about 4 hours later it would go away. Not a good thing when you are trying to work and manage people. I had to take it at night because the dizzy spells were not manageable. Almost took a header down the stairs. I just started Femara on Tuesday and I am back to the rapid heartbeat already. My BP, however, has seemed to remain fairly stable - just slightly higher than normal. My oncologist said if this one doesn't work, on to Tamoxifen even though I am post menopausal. He suggested I should consider quality of life vs quantity. I'm not sure I am ready to give up yet but one day at a time.
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That would be beet red LOL
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Hey BobbiM- I've got the rapid heart rate going, but it hasn't really impacted my life. I had terrible trouble with tamoxifen, but know that everyone doesn't. Hope you're doing OK. big hugs n all.
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Hi...I started out with the skipping of heart beats and at times in bed it raced until I controlled it with slow breathing.
I wore a heart monitor for a while, but they found nothing out of the ordinary. It settles itself down eventually. Scary at the time though.
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we have taken your advice and switched it to nighttime she is getting a good nights sleep apart from at 2am really hungry but, she loves salmon sandwhiches. The main issue is she is hardly putting on any weight.
[OT] Fortisip my mother is drinking today and the food has been passing through her. I wonder if Fortisip does this to many people. I need to open thread to ask sorry.
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Azura, Did your Mom have chemo? For me Femara hasn't caused diarrhea nor weight loss, in fact just the opposite. When going through chemo it was another story. I don't think the Fortisip would cause diarrhea.
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She has stopped the fortisip I too have femara but am close to remission.
Last night felt like I had too much energy in my body after one and yes sorry to say it but, I also was unable to get out of the toilet. It did affect me.Within 30 minutes I felt gassy and I was awake all night --i felt like I had drunk a can of redbull...and had palpitations...hmmm guess the fortisip is different then. Today stopped taking it and switched to Ensure instead and feel ok. I guess some people don't do well on fortisip. I guess my stomache is pretty uncomfortable.
No she hasn't had Chemo. I have had though. I switched to Ensure shakes and I am fine. I have left my mum to a fresh salad with salmon and olive oil and a caffeine free milk honey and rebush tea. All seems ok. Just wish more nutrients would go in.
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No chemo for my mum just Femara right now but her weight loss for me is alarming.
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Dear Olga, I had my first infusion of Zometa last Thursday. For one day I felt fine, then it hit me. I was very sick from mid-afternoon yesterday until this a.m. with flu-like SEs. Last night was really bad. Seems to be dissapating now, though. I have been on Aromasin for 2 1/2 weeks. No SEs whatsoever. Maybe this is too soon to get them though. My doc also gave me an arsenal of drugs to counteract SEs if and when I get them. Haven't taken anything yet.
On edit, I have a theory about ALs too. I had no SEs from natural menopause and never took hormone replacements. I wonder if women who breeze through menopause also do well on ALs.
Best wishes!
yorkie
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azura, I know when my mom was really weak eggs were something she could always tolerate. She also drank lots of insure we tried to make sure she had 3 per day. For her breakfast was the best meal of the day, I think she just had a bit more energy in the morning. It funny she had always loved tea, but stopped drinking it a few months before we found she had BC. What she said was she had lost the taste for it, but I just wonder if it was the cancer affecting her food choices.
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yorkiemom, The SE's for me didn't really set in till about the 3 month mark other than hot flashes. I will say though I also sailed through natural menopause, not so much so with the AL's. By the way is that pic. of your Yorkie? They are such cute animals.
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Hi kira, yep that's my baby! Hoping that the SEs are mild. I know I will probably have some.
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For me the depression is the worst. I can handle the hot flashes. I just wish my Onc. had warmed me that the lack of estrogen can cause depression. It took some very caring people to make me aware of what was happening.
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My MO a script for depression, but as I mentioned so far I have no SEs. I will definitely take the med if I need it though. Glad you got the help you needed and that you have caring others in your life. That helps soooo much. I agree with you, hot flashes no bigee.
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I don't have any meds for the depression yet. I really dislike taking another drug. I'm trying to use other more natural methods. For one getting more sun to naturally raise my d levels. I've been doing some research into natural ways to raise our serotonin and am implementing some of them. At least now I'm aware of it and am looking for the symptoms. If I need to I will call the Dr., but it does make me angry he didn't warn me nor did he ask about it.
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The doctor should have definitely told you about the risk for depression and all potential SEs. There are several herbal anti-depressants, but you have to be careful about drug interactions with those. I'm on a low dose of Lipitor and can't take them. I also am trying to get in the sun more. Irritating that we get different warnings. For years I've covered my face with sunscreen to prevent skin cancer. Now I hear I need more sun!
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I am lucky in that I live in Florida, so can get out in the sun all year long. You are right though we've really been trained not to. I can lay on our Lani daily, just need to think about it. I may try one of the herbal anti-depressants. From what I can see I'm not on anything they would react too. I come from a family that embraces natural healing, so that route appeals to me.
The only LE's they talked about were hot flashes and joint pain. I've solved the joint pain by eating mostly gluten free. Hot flashes are a pain in the neck but I just dress in layers.
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Another thing I've found that helps with the joint pain is curcumin and ginger. Gluten free definitely helps, too!! I was thinking that the SE's had died away, but then ran out of curcumin and I started walking like I was 90 again.
So visited the health store today and got some more. Next week I'm adding glucosamine to the mix. -
Curcumin I new was good for us, but had ni idea about joint pain. Do you take suppliments, or do you use the spice on food?
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Not everyone has SE's from any of these drugs. Most do but there are a few lucky one and then you may have only one or two of them. I statred Arimidex in July and I stopped taking it 4 days ago when I realized that I could not button a shirt because my fingers and hands were in so much pain. The tops of my feet are killing me and as someone else said, I have numbness of my hands and fingers off and on all day and night. I cannot live like this so i have decided to take a break and see if things improve. What good is it living 5 more years and feeling like you'd rather be dead because of all the joint pain.The only thing that doesn't hurt me are my 2 artificial hips and my artificial shoulder.QOL is so much more important to me .Hell, I've already outlived my mother by 7 years!!
If my joint pains go away I think this will be the end of Arimidex for me.
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Kira, I take supplements - both curcumin and ginger - will start glucosamine soon as well. (I only add one new thing at a time so as not to mess with myself too much)
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Curcumin has really helped with my joints on Femara, too. Boswellin also.
Thus far I've declined the anti-depressants my onc has offered me. BC has left me with PTSD that flares from time to time and I have been told ADs sometimes make PTSD symptoms worse. Umm, no thank you.
But I reached a point where I knew I had to do something to lift my spirits -- a mets diagnosis, an oophorectomy and Femara all at once really pitched me into a valley. I wanted to exhaust natural options before filling the AD script. So I've just kept studying my options and tweaking my supplement regimen until I found an herbal cocktail that actually makes a difference -- for me.
Before I try anything new, I always check the herb databases at several reputable cancer websites, including Sloan-Kettering, MD Anderson, Livestrong, NoSurrender, etc. Then I run it by my ND.
All that said...
Since I had adrenal exhaustion from a PTSD flare, I had started taking an herbal blend called Adrenal Health from Gaia. Within a week or two, I felt a little better. Encouraged, I kept studying and tinkering. Now, months later, I am taking higher doses of the main herbs in that formula separately. I take Rhodiola rosea before breakfast, then Holy Basil and Ashwagandha before dinner. The three together seem to keep my neurotransmitters twinkling a bit brighter. (Rhodiola is energizing at low doses but slightly sedating at higher doses, so I had to tinker with it a bit to find a dose that gave me energy and brightened my outlook. Too much and I go the other direction.)
I also felt better after my ND told me to change the form of B12 I was taking from the cyanocobalamin form to methylcobalamin, which is more easily metabolized by the body.
I wouldn't want anyone to take this as advice; it's just what has helped me. YMMV.
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You guys are the best. I will run the suggestion by my Dr. before beginning, but really don't see how curcumin could cause trouble. I am aleady on D supppliment along with E per Dr.'s suggestion. On another thread they were talking about Brassica Tea created by John Hopkins. I have ordered some and will drink it instead of plan green tea.
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she can't drink ensure I tried it also and today was quite sick on it. I wish I could get it into her but she can't tolerate it, she can barely stand and she is starting to say too weak to stand at all. her hands are swollen yes they said Edema. I am trained in Lymphatic drainage but, I know it can do more harm than good. She is eating though and yesterday she had, cornflakes with honey, salmon salad fresh with extra virgin olive oil a little neat on it. she is very much into milkshakes. she is also drinking lots and lots of water on Femara but, she is frustrated. To sit up in bed she leans on her elbows all the time and I think it's causing her hands to swell. Issue is what to use to prop her up at what extra cost.... she cna't get downstairs since she was so weak the hand rail on the stair shad to be fixed she was sitting on the landing and had to lift her into bed. She is around the 6 stone mark and 5'5 I need any advice as she is saying will call an ambulance soon this week...I am worried if she goes in she...won't come out...God I'm scared.
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Azura- I am so sorry you and your mom are going through this. I do think you need a good dr/nutritionist to help you and maybe the hospital will provide that?
I am wondering about your comment about lymphatic drainage...how does it do more harm than good?
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I will look into the Drs see if can get help but with it being New Year it's difficult as people deserve a break.contraindicationsacute infectious inflamtory ilnesses in development/feverserious circulatory conditions thrombosis phlebitismajor cardiac problems angina etcacute anuresus abscense of urinationmalignant ailments saccrom active cancer leukemia.it is the theory that it can cause the condition to spread quicker also the skin can bruise during massage. Pressure could cause a reaction in blood sugar levels with diabetes must be monitored. Can be dangerous in low blood pressure as blood pressure drops while laying down.I honestly don't like to do it if someone does have cancer as I have always been cocnerned it causes cells to multiply. I no longer practice it. been a while now...
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Azure if your mom is into milkshakes try adding some good quality protein powder. As for propping her up use pillows......... First one across the bed the second at an angle across the end of the first and the third the other end of the first creating a V the fourth straight over that V and making a support for theback shoulders and neck. When placing patient against pillows make sure their bottom is well settled into the V. You can if necessary use more pillows. I used to use this configuration when I was caring for bed ridden patients.
Love n hugs. Chrissy -
Yorkie mom...I have a little Lucy..York. They are the sweetest dog we have had yet. Why are you on Zometa?
My s/e from Ai's never happened till three month down the line.
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Hi artsee, I totally agree about yorkies! Couldn't ask for a sweeter more adorable companion! I don't know all the factors that went into my MOs decision to put me on Zometa. I am 63 and had 2 positive nodes, although they were micromets. MO felt Zometa would protect me in case any stray cells got into my bones. I'm over the SEs now. I feel so fortunate to live in an era that has such wonderful life-saving treatments for bc! Next, bring on the cure!!
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Thanks will try the V shape for her as she gets really uncomfortable laying. I have done as you say and sent for some whey protein a organic one I am hoping it's a good brand called Pink Sun they grass feed the animals
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Azura.....I couldn't drink ensure instead they gave me the juice version of it.
good Luck
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This is the one
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Azura, let me know how your mom gets on and if the pillows work for her.
Love n hugs. Chrissy
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Yorkiemom...You are fortunate because your DX is pretty low key. Mine was grade 3 and my Dr. never mentioned the drug to me. I take it you had chemo right?
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attsee, I haven't had chemo. Based on my profile, including the low Oncotype score, docs do not believe I would benefit from it. In fact, I would statistically be worse off if I got it. Grade 3 is another beast. I think that usually gets chemo, even with no node involvement.
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Pillows worked, p.s mums eating today but gone mad on bagels with cheese and apricots both together? eww then gluten free bread with olive butter and apricot jam --I bought Monne Maman one natural and she won't stop eating the stuff lol! probably high in sugar but she said u can try me on other foods but that's all I want. So, thus stubborn muled mum got own way and is now sleeping happy after her apricot madness :P
Ensure juice? that looks interesting thanks for the tip! P.s got some whey powder now need to figure out how much to use. P.s does Femara cause hands to swell I saw side effects on the site. she has a few of them! chets wheezy fatigue emotional and hands swollen.can't get Ensure enlive in UK-- is the an alternative juice of it anywhere in UK? thanks
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How about this one (I didn't try this)
Does your mother like yogurt. You can make home made shakes using yogurt instead of milk.
If you're interested PM me.
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Azure, one rounded scoop per shake is enough but you can add more if you want but it's not necessary. It's good that your mom has had a food fest even though to you what she ate sounded weird.............eating anything is good and will encourage her to want other things. I've not heard of swollen hands as an se of Femara but anything is possible............having said that, I would just watch it and if it gets worse mention it to her doc as there are other causes of swollen hands. Are her feet affected as well? or just the hands?
I;m glad the pillows worked for her and she is more comfortable to sleep.
Love n hugs. Chrissy
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Yorkimom what was your oncotype score? Mine was 14 and like you chemo was contraindicated. Did you get any hassle from your insurance company paying for the test since you (like me) had positive nodes?
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Interesting....I was told no Oncotype test for me, because I had positive nodes I had to have chemo. I went to the Oncotype website....it said the test was for only node negative. So 6 months of chemo, rads and now femara for me.
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I had nodes negative and my Onco score was 35. The Drs. were very surprised. Maybe they give Zometa because of no chemo. Extra protection for those gals?
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dunno - I never got Zometa (what is it???). My first surgeon was going to give me rads and chemo. Because she was also pushing me hard to get a bi-lateral, I decided to go to the Seattle Cancer Care Alliance. They immediately said no rads, and then said I was "borderline" for chemo - suggested that I do the Oncotype test. It came back quite low, so no chemo. The insurance originally said they'd pay, but then (after the test was completed) said they wouldn't because I had positive nodes. The oncotype results were given to us with recommendations for both positive and negative nodes. My score was so low that even though I had positive nodes, chemo was not recommended. We're still fighting with the insurance company, you'd think that because the test saved them like $50,000 in chemo that they'd be willing to pay, but noooooooooo
.However, no rads and no chemo - I have no choice about the hormone therapy. I have to make it work. Tamoxifen didn't, but so far, the letrozole is doable. I ache, and am certainly more tired than I'd like to be, but I think it'll be OK. (Well, hope so, anyway!!!) I'm adding in every kind of natural supplement I can come up with, to offset the achiness - and have moved to a gluten free diet. Glucosamine, Chondroitin, Curcumin, Ginger.... I'll probably add in yucca next - I read that it's an anti-inflammatory as well. I already eat it, but I think the supplements will help out on days that it's not part of my diet.
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Got the juice fortisipJuce --bad spelling yup but it's on it's way :-) Boost breeze for yoghurts oh no something else caught my eye.
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I sure am glad to read that some of us here are also tired. Never had a problem until Letrozole. The light just went on reading some posts here that maybe it's the drug. It also causes more or I should say worse pain than when I was on Femara.
I think I"m going to start Curcumin again. Thought it gave me heartburn so I went off. It's worth another shot. Has anyone seen some good results taking this supplement?
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I swear by curcumin. I take 4 capsules a day. (2 morning, 2 evening) I don't know if it boosts my energy at all, but there is a definite impact (for me) on my aches. I was thinking the SE's were dying down, as I wasn't aching as much - then I ran out of curcumin - all the aches and pains were still lurking, not to say that they are gone on curcumin - just improved enough that I don't feel quite as crotchety.
As for the tired - I am tired on letrozole, but so much less than I was on tamoxifen!!
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Azure.................has anyone thought of Lymphedema................it might be worth checking out with a specialist.................I have it in my right arm, and you can pretty much swell anywhere when you have it.............It would be something to think about.............good luck
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I definitely feel worse all around when I forget my curcumin. I take 6000 mg per day when I'm on top of things. Don't freak out, I know that's a lot -- it's the maximum therapeutic dose, and the dose recommended for advanced BC. You'll get benefit from a lower dose, I'm sure.
One very nice side benefit I notice from taking curcumin along with Femara is that it overrides the constipation Femara can cause, and it does it without going overboard, if you know what I mean. Anytime I forget my curcumin, it doesn't take long for the wheels to stop moving. As soon as I take some, everything is jussssst fiiiiine.
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Hi all,
I just started letrozole on New Years's Day, so far no side effects but reading all your posts has me nervous! I'm going to hope for the best and plan for the worst. I'm wondering if it would behoove me to start taking curcumin or glucosamine ahead of time, get ahead of the s/e. OTOH, I don't want to take more pills for s/e I may not get. I hear the joint pain starts at about 3 months, has that been true for you?
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Well, ladies... my onc just took me off Femara this morning. On to Faslodex + Xgeva while waiting for Afinitor to arrive. I'll peek in here now and then, but for now I guess I'm shuffling off to the Faslodex forum.
Thanks for all your helpful insights and support while I was on Femara these past 15 months. You're all beautiful and amazing creatures.
See you all around the boards!
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Femara gave me the "trigger thumb"...............talk about annoying.......especially when texting..............thanks Femara
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cfdr - for me the se's started right away - only 2 weeks in. I'm at 2 months now, so am hoping they don't get worse
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Hi cdfr, I have joint pain but I had arthritis long before I had BC and needed to take these drugs so I put the jont pain down to that as it hasn't increased while taking Femara. The biggest SE I have is fatigue but by taking the little pill at night instead of the morning I seem to have gotten rid of most of that too. My suggestion is don't go looking for se's as they may never turn up........just pop your pill and live a normal life.
Lulu, good luck with your new regime! Looking forward to good reports.
Love n hugs. Chrissy
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Does anyone have a remedy for "trigger thumb"...................................
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Ducky, I can't help you on that one but perhaps a call to a PT might give you some ideas. Hope you can get some help as I know it can be down right uncomfortable.
Love n hugs. Chrissy
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i had bad trigger thumb after beginning femara. i went to see the reumatologist (sp?) at m d anderson, and she gave me a cortisone shot in the ball of each thumb, and it went away. my thumbs actually stuck before the shots, and i'd have to unbend them w/other hand! sadly, altho they're not trigger now, the arthritis i had pre-femara has made all of my fingers achey.
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New to this thread.... On femera about 4 months & have lots of joint pain all over. I also get eligard(lupron) injections evert three months. Next dose in February. I'm not sure which one or if both are causing me all this pain. I see oncologist next month and plan on discussing this. I was wondering if I should try some OTC meds or try switching. Already tried aromasin but changed because onc thought it caused the severe vertigo I got after about 12 days starting therapy.(also confused because last eligard caused slight vertigo after about 10 days)
So now I'm not sure which caused the vertigo.
Anyway... Is there a recommendation from you girls of which OTC Med I should try first? -
Hi tenaj, the general consensus seems to be all the ones that are anti inflamatory in nature such as,
Curcumin (Tumeric), Boswellia, fish oil (omega 3), glucosamine, condroiton.
Hope this gives you something to work with. With all these things, you need to give it time to build in your system, it's not going to relieve over night but you should start to feel some effect in two or three weeks. I know that sounds like forever but believe me it really is not that long. Good luck!
Love n hugs. Chrissy
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Good morning Chrissy, thanks for te info. Is something I should check with the oncologist first? Is there on or all I should try first?
Janet -
Tenag all of them are okay with other meds but if you want to check first that's okay too. I take all of them as I can't take the prescribed ones and I have osteo arthritis in just about every joint and the combination keeps me very comfortable. You may find that if you start taking them all at once you may have some digestive and bowel issues so my suggestion is start with one and slowly add the others one at a time a few days apart. I sure hope they work for you. Good luck !
Love n hugs. Chrissy -
y'know, i try NOT to read about SEs with the meds (Femara) we're on, because I believe if I read them, then I'll GET them...
But, dang, I sought out this thread because that stuff makes me feel horrible. Every joint and muscle in my body hurts. I feel like I'm a hundred years old. Moving is so painful. BUT I know exercise is the key to managing these SE's.
Just wanted to vent that.
michele
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Ditto..... Going to be better with exercising after my exchange on 1/17. Thinking about PT this time to get me started. :-)
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I've been on letrozole for 9 days now, and can hardly breathe. I have bad allergies/asthma but they are generally controlled by medication. Latley I've been having at least one horrid coughing fit every day. If I take a deep breath I cough uncontrollably. And by deep breath, I mean the kind you use when you are going to yawn or sneeze or raise your voice to say something to someone in another room. I am also so short of breath that I even get short of breathing walking DOWNhill. When I measure my lung capacity with my pocket peak flow meter, it is usually 400-450, now it's 200-250. I've never measured it below 350, and that's with really bad bronchitis.
Besides the fact that this all started after starting letrozole, I also suspect pneumonitis, which can occur up to 6 months after stopping radiation (Mine ended in September) and can also be caused by cytoxan, which I just finished last month.
Saturday night I came close to going to the ER. Called my onc first thing this morning. Her take: Your lungs sounded fine on 12/30 so it's probably just an asthma flare-up. Call your primary. Not very happy with that response! My lungs sounded fine 10 days ago...BEFORE I started having symptoms. I have an appt with my primary tomorrow, will be interested to see what she finds out.
Anyone else had breathing difficulties on letrozole? Did they ever go away?
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Get off of the drug as soon as possible and see if you improve. My Osteo drugs did the same to me. I was off of them in a flash and felt better. Every body reacts differently to certain drugs.
I have other SE's since Letrozole.
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I have been on Femara for 9 months now and the SEs started 3 months ago. I have pain on my fingers and trigger left forefinger. I have read a blog on femara and one lady mentioned about AVEMA, so I ordered it on amazon and been taking it for the past three weeks. The pain subsided and is manageable or tolerable at this point. It is powdered and you mix it with water or juice. So maybe something you might consider taking.
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I had severe shortness of breath after taking letrozole. I gave almost two months to see if my body will get used to the drug. After I talked to my onc he asked me to stop taking letrozole and I am to see him three weaks after which is this comming Wed. I am praying that he will ask me to go back on tomax and not on letrozole.
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Went to PCP today, got a chest x-ray: I have upper left lobe pneumonia. No idea if there is/was any relation to any treatments, other than just general immune sysstem weakness after being on chemo. Great, finally done with one challenge and on to the next!
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Last week my onc allowed me to go off of Femara for two months to see if my side effects improve. I have been taking it since May of 2010, about 1 yr. 7 months. I have had trigger thumbs, hip, knee and low back pain, and my jaw doesn't always want to open all the way. My worst part of the day is when I arise in the mornings. Even the bottoms of my feet hurt!! My nights are pretty miserable, also. Then the longer the day goes, the better I start to feel. I did chemo and radiation - so I asked my onc how much more taking Femara will increase my chances of survival. She said about 3 to 4%. Now I am asking myself, "Am I going to continue taking this drug for another 3 yrs+ and endure the joint pain that I have been having?" It is a tough decision, and I want to see how much better, if any, I feel after two months off the drug before I make up my mind to continue taking it. I would like to hear from some of you who also are dealing with this dilema.
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I think it is important to look at quality of life vs a 3 to 4 % increase. I have only been taking it a few weeks and have not experienced the SE yet but it sounds like they can be terrible. I did not have chemo and radiation so I do not know what the increase would be for me but if I start having trouble, I will definitely ask!
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Well girls, I have finally had a fairly drastic SE from Femara, my cholesterol has now risen to a point where it needs treatment........ugh!!!! I have been watching it for a few months now and it has been steadily rising with each blood test but this one was the bomb................dang nab it'!!! Oh well, I guess it's not as bad as some and only requires a little pill......another one!
Love n hugs all. Chrissy
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I also had that talk yesterday with my medical onc about going on a statin. I was told that since I will be on Femara for 2 1/2 more years that I couldn't put it off since my cholesterol has been climbing. I did get him to agree to a 6 month wait since I have been having many more aches and pains from the generic and was told that some statins cause them too.
Oh Joy!
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When I posted previously about my two-month reprieve granted by my onc from Femara, I forgot to mention that my cholesterol is now also off the charts. I take a statin for the cholesterol, in addition to Effexor which onc prescribed to combat the sleeplessness & hot flashes from Femara. So I continue to ask myself if, after my two-month break, I really am going back on this stuff!!
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Boy, this doesn't make me happy at all. The odd thing is...my 6 months blood tests never include a cholesterol check. I wonder why, when one of the s/e's is the raise of cholesterol.I'm going to have to asked my Onco about it when I go in in April. I sure don't want to take that statin. then I'd have something else to worry about...my liver.
It snowballs doesn't it?
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I am just wondering....Have any of you taken Femara and had a re-occurance of breast cancer?
I took Tamoxifen for about 14 months, & lost my hearing. I quit that pill about a year ago, and have been too afraid to try anything else. My Oncologist wanted me to take Femara...I don't know whether to try it or not.....I am 74.....Any thoughts?
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emegram - I don't honestly know if I'd go with any of this stuff for only a 3-4% improvement chance. The AI's improve my chances by almost 20%, so it's a no-brainer for me.
Chevyboy - I couldn't take tamoxifen. I had terrible breathing problems, and then got blood clots. I'm on letrozole now (just beginning my 3rd month) and though I'm having some SE's, I'm taking a bunch of supplements which are helping dramatically. It's always you're own call and your own decision to make about your own life. I can only say, that if I were you, I'd give the letrozole a try. Some people have terrible SE's, some have few. Unfortunately, no one knows which group they'll be in until they try the drug. Best of luck to you.
Chrissy - so sorry to hear about your cholesterol. Have you modified your diet in any way in hopes of keeping the cholesterol down despite the drug? I had my 1st blood draw yesterday. I wish they would have done it before starting me on the drug, but oh well. Have you had a bone scan? How is that for you? Any bone loss due to the letrozole?
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I too have been wondering who out there has gotten a recurrence while on an AI.??
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artsee.... I have read on other threads where some of the women get a recurrence, but I forget where I read this....And what they were taking..... Can anyone help us out here? Also how old they were.
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I have been on Femara or Letrozole (sp?) since June 2009, and have had joint stiffness and aches. It's the stiffness that is the hardest for me to deal with. I have arthritis so am used to the aches, but I feel foolish when there are others around and I have to limp around when I first get up. I feel like I look 80! I spend some time working with kids and sitting on the floor with them, and getting up and down can be challenging some days. My cholesterol is also elevated and I have had to go on a statin like some of the rest of you. I resisted for a while and tried to control it with diet, but to no avail. The toughest side effect for me has been the lack of libido and vaginal dryness. Sex has become so painful that it is almost impossible, and of course that is tough on a marraige. I asked my onc yesterday if after the 5 years of treatment this SE would go away, and he said no! Yikes. Slow aging is hard enough, but this speeding toward old age is the pits!
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I met with my Oncologist last Wed and he took me off of Femara and wanted me to go back on Tamoxifen. Though I have SE with Tamoxifen it is not as bad as with Femara. He never gave any #s as how much will I benifit with Femara vs Tamoxifen.
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I am a little confused on the differences between Femara & Tamox. I know that Femara is an Aromatase Inhibitor and I think that Tamoxifin works by suppressing Estrogen. I was originally told that Femara was used post menopause and Tamox. was used in pre-menopausal women. I am confused as to why they seem to be used interchangeably? I started out on Arimidex and switched to Letrozole when the joint pain became unbearable. When I was telling my onc. about SE's this last weerk, he said I would get the same side effect from Tamox., so sounds like he was maybe thinking about what he could possibly switch me to that would be more tolerable. Just wondering if any of you had any insight on that.
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Well girls, I'm still with the Femara thread. The doc and I, after discussions decided that I will stay will the Femara as the new progression is small and as I'm grade 2 not terribly aggressive so a little while longer is not going to put me in jepardy and will give me a lot longer before I need to think about running out of the AI's.....................now that's a good thing!
Mboss, sorry you have had so much trouble with the Femara and good luck with going back on the Tamoxifen. I sure hope the SE's are more managable for you.
Gardengumby, there are two different types of bone scan, one called a DEXA which measures any bone loss and the nuclear bone scan that looks for any bone metastisis. I had the second kind last week and there was some new tumors noted on my skeleton so I have had some progression. I'm okay with that as I knew it would come sooner rather than later and I've had a pretty good run since May 2009. I had a DEXA scan done last year and my bone density was good, only a small amount of loss at the base of my spine but wether that was due to the Aromatase Inhibitors or the arthritis I wouldn't know. I have to wait until the next one is done in twelve months time to make a comparrison.
Lindatwo, check with your gyne there are some things that can be done to combat this as well as check the boards for a thread on this very subject. There is some great information on it.
Love n hugs. Chrissy
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Linda- my understanding is that premenopausal women can only take tamoxifen but post menopausal women can take tamoxifen or an AI. Some women take tamoxifen followed by an AI. At least this is my understanding of it.
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Ginger, your understanding is correct although a pre menopausal woman can take an AI if her ovaries are stopped by other drugs or surgery.
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linda...The Tamoxifen doesn't stop you from producing estrogen, as the other Als do, it binds to the estrogen so that any stray cancer cells can't feed it. I think that is why it is easier on your joints, and bones than say Femara or Arimidex. Those are estrogen blockers.
http://www.srspharma.com/chemotherapy-drugs-for-breast-cancer.htm
We still produce estrogen, even after menopause, but it comes from our adrenal gland, liver and breasts. So estrogen IS good for us, because it keeps us more youthful....
Chrissy is right, in that younger women take Tamoxifen, & Femara or Arimidex is usually prescribed for the rest of us....But I WANTed Tamoxifen, because my friend took it, & she did great for the 5 years on it, and she is out 14 years now....
Tamoxifen was about the first drug to help "prevent" cancer from spreading ...but now the "newer" drugs are out there for us to take... They've come a long ways, but just wish these meds could be "tailored" to each of us, after maybe blood-tests, to see what side-effects we will have....
The cyp2d6 test only determines how well we metabolize Tamoxifen.... And some oncologists don't believe in that test.
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i was told by my ortho guy that trigger fingers are from the tendons not sliding through the spaces allowed as we open and close our fingers. prior tohaving cancer i had surgery on one finger and it was a breeze and loved the relief! as trigger finger progresses it locks up more and gets way more painful ! best of luck
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It appears letrozole is the best we could be taking.
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Well, I am 2 weeks back on Femara after a self-imposed hiatus of 6 weeks. So far (knock on wood) my stiffness, hot flashes, and generalized migratory joint pain hasn't kicked back in.
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Lindatwo...there are other ways of being 'sexy'. Lots of people have too much pain or even the DH
maybe can't. So there are lots of toys to jump start your inner self. There's a thread called
'The solution to painful intercourse!!! yippee." They found a cream that does take the pain away and are quite happy. Check it out.
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update- mother has been admitted to hospital yesterday morning for rehydration, I had no idea she wasn't drinking I fell asleep for 6 hours... after not resting through caring for her. I now feel incredibly guilty and to blame. She is not doing well, she can't move her arms or legs and is on heavy pain killers. She refuses to eat-- I fear the worst...as , for me? at home alone no one here just the cat who is having depression..just feel devastated. Good thing though mother's hands that were swollen have gone down since being given anti biotics but due to dehydrtaion very confused. I need prayers please.
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Praying for you and your mother, Azura.
I am a mother of two grown daughters, and I think I can tell you with confidence that your mother would not wish for you to be in such distress and guilt over her. She wants you to have hope for a happy future, come what may.
Breathe, dear. You will feel joy again, and you will be given grace to face everything that lies before you. Your mother is blessed to have such a loving and compassionate daughter.
Peace to you.
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I had to switch to anastrozole because it was cheaper than the generic femara. I made the switch 6 months ago.New ins and i can get my generic femara 90 days only $10.00 i wont fall in the doughnut hole. My other ins the femara generic was $1,234.00.which my copay was $70.00 for 90 days.So i am switching back to femara.I like the femara generic better. S.E ARE NOT AS BAD!!!!
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mother has worsened they are sticking her with needles she has been begging the Dr's to let her go, I am devastated as been to drs myself got prognosis mine is a year I have a tumour that's sprea din my lung. I will see my mum soon then, but i refuse to go into hospital and go the way she will be, it is pain..constantly chekcing her gas in her blood her arm is black and blue..Im hurting...It's driving me insane...God wish God would help. Hvaing a nervous breakdown myself...cna't cope not eaten for 3 days not taken my chemo for 5 days. i have given up...want to join my mum...
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Azura, please don't give up on yourself or your mum. I'm sure if you insist on speaking to her doctors, they will tell you that all is not lost. Her pain should be controlled with medication and if it's not, again insist on speaking to her doctor. Sometime we have to rely on ourselves as much as God and I think this is that time. As for not taking your medication for 5 days, well, that is punishing yourself for no particular reason! Speak to your doctor about how you are feeling and get some meds to help you through this difficult time.
Azure, you will learn, that as hard as it is to loose someone you love, life does go on and you can live with out them.
For your sake and your mothers, talk to the doctors and get some medication to help you.......do not give up!!!
Love n hugs. Chrissy
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Yes, Azure, please listen to wise Chrissy! You need more support there locally to get you through this, and that help is most likely there but you have to raise your sights and look up from your sorrow and pursue it. Now is not forever, Azure, and there are better days ahead. But you are in the midst of a storm and need help navigating. The storm will pass!
Grab a doctor by the sleeve and don't let go until you get helps -- some anti-anxiety medication to take for a little while. An antidepressant would be golden for someone who is where you are, but in the meantime a little Valium or Xanax is an amazing thing and could give you enough peace to catch your breath and think clearly.
Your mother would tell you to take care of yourself!!!
Please do. Please.
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Azure please don't be so hard on yourself. See if there are any support groups close by you or if you have friends talk to them. Talking to someone who will understand you will help you a lot. I am sure your mother would not like you to beat yourself like this. I used to constantly feel guilty when my mother passed away few years ago. As some of my friends said no one stays on this earth for ever. Every one will have to leave, some go early and others later. Hope your mother will get better and come out of all this. I can very well relate to what you are going through. Take care. If anything I said here hurt you please pardon me.
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I'm a little bit late, but a few days ago the topic was of increasing cholesterol. Mine went up 50 points in 4 months after starting femara. I wonder if I should have it rechecked periodically. I didn't imagine that it would keep going up!! But it did for you ladies!
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I have trigger thumbs from Femara..........never had it before.........the left is worse then the right..........thanks cancer..............you just keep giving us more and more..................
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Weety, you should be having your cholesterol checked every six months and don't forget, to get a correct reading it is a fasting test. Here's hoping yours hasn't risen and if it has and it is high you may need a statin to help control it.
Awe Ducky, that's awful. I had it but just for a couple of weeks and then it went. I guess I have been lucky as most of the SE's have come and gone within a few weeks until now, I almost have none that cause troubles on a day to day basis. Here's hoping yours passes too.
Love n hugs. Chrissy
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I will starting Femara next month. Has anyone had few SEs or none at all? I read these posts and get really concerned. Thanks.
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Hi Gail, I have had very few SE's from Femara. The main ones have been fatigue, some sleep disruption, hot flashes, rising cholesterol and hypertension. I did have hypertension prior to taking Femara but it has risen and my medication was increased. I was checked last week and it is normal. None of the SE's I have are debilitating and certainly don't interfere with my QOL.
Please don't look for the SE's as they may not arrive. Good luck.
Love n hugs. Chrissy -
I 2nd Chrissy's post. I've been on letrozole for only 3 months, but the SE's have definitely been doable thus far. Unlike Chrissy I don't have much fatigue - some dry skin, a little sleep disruption, and some achiness. So far (crossing fingers) no cholesterol or hypertension.
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I was on Tamoxifen for 3 weeks in September 2011 and then they changed it to Femara. The hot flushes and night sweats kicked in very quickly and stayed when i was switched to Femara. Then the pain in the fingers, fluid retention, exhaustion and depression started not long after. The constant lack of sleep was just awful. After a couple of months of thinking 'how can I do this for five years', I made the decision to go off the hormone treatment. The difference it makes in my opinion to the percentages game with regard to the cancer coming back is minimal. I have now been off it for 3 months and while the symptoms are much reduced...I can finally sleep at night...I still have the odd night sweat, hot flush during the day and my fingers still ache but I can function again and I have a life.
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Hi bgail84,
I have had very minimal SE's from Letrozole. I've been on it for almost 6 months now and my skin is drier and it gives me really loose stools (which I understand is rare) but that's really all that I've noticed. I get a little stiff after sitting for a long time but not sure if that's the drug or not. I take it at night so if it makes me tired, I haven't noticed. I'm going to start checking my cholesterol next month so I can keep track of any changes with that. Hope this helps and that you have smooth sailing with it as well.
Shelly
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Thanks for all the information! I will give the Femara/Letrozole a try and hope for the best!
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Hi Everybody: I start taking the Letrozole today after 35 radiation treatments. I'm praying for no side effects but am prepared for anything now. These boards have been a real source of inspiration and information since I was diagnosed. Thanks to everyone who contributes to this forum!
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Well girls, the first statin was taken yesterday......ugh!.......another pill to ass to the masses! I asked the doc what if any the SE's were with this pill and he calmly tells me, 'oh, you will possibly be a bit achy and tired'........WT?.......how can one person be more tired than I am right now?...... and you mean to say that I have escaped the achy bit with the Femara only to get it with a statin?..... This is not a happy camper I can tell you but I guess it's better than having a heart attack! I had to laugh at a comment my DD made when I was telling her, it was as follows....
You mean to tell me, that you take a pill to stop you from dying of cancer only to have to take another one to stop you from having a heart attack.........great.......so they are saying, pick your way of dying.
I LMAO as shee was sooooo right it's laughable!
Love n hugs all. Chrissy
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bgail84, I've been on letrozole for about a month and I've had increased hot flashes, but other than that it hasn't been too bad. I've had insomnia, but I had that before, so I'm not sure it's worse. I'm determined to take it, so I feel lucky that so far, everything is fairly manageable. Good luck!
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My experience has been the same as stephN and I have been on it about a month too.
chrissyb- my DH takes a statin and has not had any side effects so I hope that is true for you too!
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Well, girls, I've been off of Femara for over 3 weeks now -- taking a break, with my oncologist's blessing. And I'm not noticing great deal of improvements in my joint pain. In fact, my low back is still very painful, as is my hip!! I'm trying Melatonin for sleep. Does anyone else dream ALOT taking that stuff??? And I've been on a statin for many months with elevated cholesterol. Had to laugh at Chrissyb's post --- cancer or heart attack???? A good laugh is indeed good for the soul!
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I don't know whether this works for everyone, but I switched from Crestor (a statin) to a daily 500 mg capsule of aged garlic (the brand I use is Kyolic), and my LDL dropped to acceptable levels within about 3 months. I do try to avoid dairy and animal fats, and use olive oil for sauteeing etc.As for SEs from Femara -- I've been on it for over 3 years. It took awhile to get used to morning stiffness (and stiffness after sitting awhile), but my trigger fingers disappeared, as did my joint aches -- after about a year or so.
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I had my MO appoint last Friday and the results of my bone density test were in and they were not good. I have been on Femara for over a year now and the only SE i have had were minimal hot flashes, which have decreased to almost none, an increase in coloestoral (now taking meds for that, back to normal) now I have a decrease of 13.3% bone density in my lumbar. I am nervous about taking other meds because I have had minimal SE. The alternative my MO is giving me is having a Zometa infusuion which should stop the decrease of bone density and strengthen the bones. Read up on it and I am OK with it. It does not come in pill form so it has to be infused through an IV. I am having it done on Thursday. Wish me luck.
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Walker2222 - So sorry to hear of your bone loss in your lower spine. I have taken the Femara since May, 2010. My recent bone scans came back: "Normal range - for a person your age." I'm 64 yrs old, and my lumbar region causes me so much pain. I've been told it is degenerative disk disease. I'm now on a 2-month break from the Femara, suggested by my oncologist, to see how I feel. So far, it has just been 3 weeks & I'm not noticing any difference. I take a statin for cholesterol, blood pressure med, and Effexor for Femara's sleeplessness & hot flashes. Also Vit D3, calcium and fish oil. Good luck with the Zometa & let us know how it goes.
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walker222 I also have to do zometa infusion every six months just make sure you drink plenty of water the day before and of and day after the treatment,also take you some kind pain med this will help with the aches you have. I take tylenol. My 1st infusion after i was achy. After that had no problem. Good luck!!
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Thanks Nanna I'm glad I'm not on this one on my own.
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You guys are very fortunate. Unfortunately my insurance doesn't cover anything that has to do with Osteoporosis, and I have is bad. So I don't do anything because of out of pocket expenses that I can't afford. My DH and I already pay $1700 a month for insurance because of early retirements. I don't want to wish my life away but Medicare can't come soon enough.
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Feel your pain about monthly insurance bills. Last May we started paying COBRA because my DH was laid off & ironically that was when I was diagnosed with BC. The upside of him being unemployed was that he was there to take care of me & be at all the appointments :-).
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Hi all! Already been on the statin for a few days and so far so good! no extra aches or fatigue....yay! Maybe I'm going to dodge the SE's which will make me very happy indeed.
Thankfully, so far, my bone density has been really good but I'm due for another Dexa around mid year....I think............so I guess I'll find out what if any damage has been done by the AI's.
Walker I also get lower back pain and somedays are debilitating! I broke my tail bone many years ago and now I have extensive arthritis and I know it's this that causes my pain but there is always that niggle in the back of my mind that it may be something else.
I winge about the cost of private health care here in Aus but I think I'll bite my tongue in future after hearing what you girls pay! I pay $350 per month and because I have the disability pension, all scans,xrays and pathology tests are free with no out of pocket at all and all doctors visits for specialist care are at a reduced amount so there is very little out of pocket expense.
Tenaj, my DH has been to only one appointment and that was the very first one with the surgeon. I don't make a point of pushing him as I prefer to go on my own anyway. Having said that, he is a wonderful support and is often doing things to make my life easier.
Love n hugs all. Chrissy
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i have been on hormone therapy for two years, tamoxifen for first eight months(stopped because it was making me feel i was going insane)have been on femara since oct 2010.
i am wondering if anyone has stopped taking the hormone therapy before the five years was up and if so how did you come to this decision and does anyone know if the odds go up drastically with stopping for cancer recurring?
i am afraid to stop taking femara but i am also so very very tired of all the side effects i am dealing with.
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I found the SE's took a while to dissipate after I stopped Femara. I noticed a real drop in pain after about 6-8 weeks. I am now 3 months post Femara and the pain in my fingers has almost gone. I am sleeping like a baby now....wonderful.
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Hi Stoney, my stepfather is an Onc and he gave me the picture on %. The max difference the hormone treatments make is about 10% but more likely to be around 8% with regard to the cancer returning. With some cases it is even less. I am amazed that they are still expecting women to take these drugs for 5 years...I know some people don't have a problem with the SEs but for those that do it can be absolutely dreadful. I was diagnosed 30th May 2011, and now I am feeling good again for the first time in 8 months after going off the drugs. I have tried to do as much as I can to reduce all other risk factors - stop alcohol, cut down on red meat, increase veg and fruit, green tea, exercise every day etc. I know a lot of women in Australia who have made the decision to go off treatment as they found it intolerable. If it was only for a year then maybe more people would stick with it but not for 5 years. Having said all that, I have not told my stepfather! He would be worried. My GP (female) totally understands and my Onc....weill I tell him next week!
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I have been on femara for 1 1/2 years and have side effects: tired, can't sleep, achy joints, swollen fingers, moody, dry skin, and have absolutely no interest in sex (which is so weird for me). Wanting to have sex used to be like an itch and I just had to have it scratched. I used to call my DH on his cell and ask him to come home so we could have some private time before our son came home from school. I may be 59 yo and DH 77 but this is really trying to wreck our 33 year relationship - the one on one us time. Oh and I have shocking hot flashes where the perspiration drips off my face.
Spoke with my lady GP and she thought after I had the DM and since the nodes were clear even through it was a Grade 3 aggressive invasive tumor, and since I did chemo and rads, the GP agreed with me that the benefits of taking femara were not worth the side effects.
So, off I march to the oncologist and in her quiet voice she says, double mastectomy or not, chemo or not, radiation or not, it is to your benefit to take the femara. Oh.
So every morning I swallow that pill, hoping to never have my life threatened by BC again.....now if I just could forget about it.............
ginsing: when are you going to tell your stepfather you stopped taking femara?
I used to think, ok, one in eight women get breast cancer. I'm healthy, don't drink or smoke, exercise, eat well, lots of veg and fruit, green tea, weight low, no family history.........it won't happen to me. WELL, I was the ONE in EIGHT! So, now when I think of odds and the numbers are low, that doesn't assure me it won't happen to me.
Oh, and after my original lumpectomy the breast surgeon said there was only like a 3% chance of reoccurance.......and then 6 months later we find out my other breast is full of stage 0 breast cancer......cells that aren't normal and have a 25 - 40% chance of morphing into breast cancer!!!
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Dear all who are still on Femara, I take my pill at night and do not have the usual SE in the daytime. Someone recomeded it to me and it has been wonders. I did used to wake up in night sweats early on but they have stoped. I still have joint pain an neuropathy in my fingers and toes but everything has been manageable. Something to consider.
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walker -- I also take it at night. For all of you having extreme SEs, it might be worth the experiment to switch to night-time.
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tried night-time. no difference.
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I take it at night too and have been pretty lucky so far. I have only been on it for a month.
I am however filling up with fluid. I am puffy everywhere! I do have lymphedema so my arm/breast area has been swollen for a while but now I am swollen pretty much everywhere. My fingers, legs, tummy, even my eyes are puffy...anybody have any thoughts? I am going to call my dr today to see how my blood pressure is.
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Just a girl....the percentage I believe is now 1 in 5 women. That's how fast this stuff is running ramped. My SIL has 4 sisters and she always says they wonder which one of them is going to be the (one)
Chrissyb....Please give me your $350.00.
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Artsee....Oh my! are those really the stats now? That is dreadfull. I honestly think that a lot of this is caused by the hormones they add to food products in order to get a greater amount produced and of course we injest those things when we eat. It's bad enough that our bodies go crazy at menopause without adding more to our systems and that used to be the dx time for most but the ages just keep getting younger and younger. If those stats keep rising, then it will end up that no female would be safe from BC unless something is done to find a) the specific cause .....and not just say hormone driven or b) start producing clean food once again and see if that helps drop the stats once more.
I will never winge about how much my insurance is ever again.......I think after seeing what you girls pay that I get off very easy indeed.
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My sweet DH has to pay for two policies now -- one for me, and one for the rest of the family -- because his impulsive partner freaked over the economy and pulled the plug on their benefits package... before it occurred to him that I am essentially uninsurable now. That was a year and a half ago. I'm on high-risk insurance now. The expense is eating us alive every month. I am still driving my 13-year-old car because of it, our gutters have rusted, our bare yard needs re-sodding in the worst way after last year's drought completely killed it off, and we really need to replace our 20 yo fridge... but now all that kind of money goes to insurance and scan co-pays.
Stupid cancer.
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I'm now been on a "break" from Femara for 3 weeks. I am so disappointed --- my joint pain is not noticeably better. I have an issue with the lumbar area of my back, and an MRI did not indicate any cancer -- just degeneration of the disks. At 64 years of age, I've still got a lot of living to do, and the pain is not much fun. I also sleep fitfully - never stay asleep throughout the entire night. Would like to hear from others as to taking a break from Femara -- or suggestions about my back issues.
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Ginger, talk to your Dr. at once do not wait if you have swelling or puffiness. My BS PA referred me to a specialized PT who treats LE. Talk to them, I had LE about this time last year after my radiation treatments ended. It helped soooo much.
I leave for my Zometa infusion at 2:30 today, I am also having additional labs done to check my vt D levels again. Lets hope my bone density lose.
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Emegram...The solution that I found for pain and back issues is that I joined a 'yoga' class. The stretching we do is the best medicine for me. I joined a 'senior' group, so we don't keep poses for five minutes and we have a chair next to us if we get wobbly. I always said that senior centers are not for me because I'm not that old....but I do go for this class.
Stretching those muscles and joints is what we need.I also sleep lousy and am waking up every other hour. The last two weeks I drink a big glass of cold milk 20 minutes before bed and It has made a tremendous difference. I dream now, so I must sleep deeper. If I do wake up I can fall right back to sleep.lullu...I'm trying to get into the high risk insurance myself too and I'll save myself 2-3 hundred a month. That's huge compared to what I'm paying now.
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Emegram, I have been off Femara for exactly three weeks today also (I'm on Faslodex/Xgeva now instead). I've been waiting for some sign of things getting better, too, and just this week I am beginning to notice that my hands are smaller and more flexible and my feet are slowly getting better especially first thing in the morning. I'm still more stiff than I was before Femara, but it's definitely starting to get a bit better. Hang in there a few more days before you get discouraged!
I take calcium/magnesium, Vit D and melatonin one to two hours before bed. The melatonin makes all the difference for me. When I skip it, I wake up in the night a lot more.
I also recommend a powder called Calm. You pour hot water over it and it's lemony fizzy. It floods your system with magnesium. Your muscles will relax and you will SLEEP... and the next day your bowels will get a move on! ;-) Win win win.
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I also take melatonin as well and when I miss taking it, I have trouble getting to sleep. With it I get at least 5 to 6 hours of uninterrupted sleep. I'll have to look into the Calm powder. Is it in the whole food section of the store.
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Walker- I am being treated for LE by a LE specialist but she is away for 2 weeks. I do my manual lymph therapy every morning along with my ROM exercises. I am seeing my dr tomorrow morning.
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Walker, I get it at Whole Foods.
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Chrissy .....................if the SE's of the Statin kick in...........try COQ10.......................take about 150-200mg a day .............I was in severe pain when I went on Pravastatin for a mild HA, and a nutritionist told me to take CoQ, and it worked..........................it is worth a try............just a little bit of advice..............
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Thanks Ducky but I already take CoQ10 , 300mg p/d. I've been taking it for about three years already and yes you are right, I think it helps a lot.
Love n hugs. Chrissy
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Chrissy,
It seems like I might've seen this somewhere else on the boards, but do you mind sharing again what supplements you take? (Anyone else who wants to chime in, please do!)
I just started Femara about a month ago and I'm trying to add some supplements to try and mitigate symptoms and keep inflammation at bay as much as possible. Right now, I'm taking melatonin (trying to build to 20mg), green tea extract, coQ10, fish oil (actually krill oil), and curcumin (if it will ever come in the mail).
I've enjoyed reading y'all's posts on hot flashes and insomnia, my two main symtoms from femara, although joint achiness seems to be making an appearance now. I'm committed to making a go of this, so whatever I can do to help out with the symptoms, I'm willing to try.
Thanks!
Steph
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Hi I have been on Femara for almost 2 yrs and 1/2 yrs and I have hots off and on it seems to turn on the side affects of menapause, like, I was taking a mood stabelizer but was much to strong that particular one was Effexor could not take side effects were horrible for me but has worked well for others. I just put up with it because it has stopped the fluid from coming back and around my lung called Pleural Efusion I have stage 4 it has been a blessing I am in the process of possible seeing a Psychiatrist to try a antidepressant to help but also for other reasons.
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Hi Angel and welcome to BCO and the Femara thread. I notice you were diagnosed stage IV only a few months after I was. How are you doing? I know all of this is really hard to come to term with but you will find that your consult with the psych will be a tremendous help as well as being able to talk to the ladies here because we really get what you are feeling. On BCO there is a special forum for stageIV and you will find a lot of girls there that can help with all sorts of things as well as give the best support and cyber hugs.
Steph on a regular basis I take Vit D (no calcium as I have excess circulating in the blood at all times), Magnesium (for cramps and it works together with the Vit D to deposit the circulating calcium into the bones), Fish Oil (can be Krill Oil but I use wild salmon oil), Vit's B12, B6 and B3 (a high potency Multi B is fine. The B Vits are water soluable so your body uses what it needs and you pee out the excess and your body doesn't store them), Tumeric (curcumin because of it's known cancer fighting properties) and lately on the advice of my doc injectable Vit K. There are warnings with this and if you are prone to clotting it is not I repeat not recommended but research being done on it suggests it has a very good anti-inflamatory properties as well as helping to convert carbs to energy. The effect is lasting about three weeks for each injection before I need another. I have found that I have far more energy, and the inflamation of my joints has settled to the point that even though I am to have a knee replacement, it is giving me very little pain in comparison to what it was. The good thing is it is also injestable but I get a better effect from the injection. Moving is also good for the se's of Femara or any of the AI's and if you can't exercise in the true sense of the word, walking as much as possible helps. I have found that jigging to music helps too as it gets the heart rate up without putting stress on the joints.
Gosh that sort of took on a life of it's own....lol.......this is just what I do and take and find it helps me but do check with your doc before taking anything new.
Love n hugs all. Chrissy
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Thanks, Chrissy! I really like the collective information here at BCO. I haven't heard of injecting Vitamin K. I'll have to look into it. I'm getting Vit D checked next week. The only other thing I'm not doing is the B vitamins, but I have to be careful with those. For some weird reason, they make my joint pain worse. That's not a new thing, though, and I think it might be related to the filler in the vitamins, more than the B vitamins themselves. Thanks again for taking the time to share.
Angel, I take Effexor. It was a rough couple of weeks adjusting to it. In fact, had to take anti-nausea meds to get over the hump, but I felt a lot of relief from anxiety and depression within a short period of time. I still have some side effects, like being thirsy ALL the time, but I'll live with it because I feel so much better since I started taking it. I'm not really sure it helps a lot with the hot flashes, though! I hope you find a med that works for you.
All the best,
Steph
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artsee:
I don't doubt your percentages are more current than what they are saying here in Australia, as it seems like every person who knows I have had BC hasa woman in their circle of friends or relatives that has been cursed with it too.
We pay less per month for our private health insurance than Crissyb here in our part of Australia, and we also have medicare, which is available to all citizens, regardless of age or income.
Sadly, with the cost out of pocket to me for 5 surgeries, including reconstruction, chemo and radiation, was about $30,000. The government provided medicare has waiting lists, and it was too dangerous for me to wait a couple of months for the lumpectomy or more than 12 weeks to start chemo. If I had chosen to wait, my aggressive and invasive tumor could of spread! Though if I had gone on the waiting lists we wouldn't of had to use our private health insurance nor pay.
bottom line in Australia is medicare health care is free to all if you are willing to wait and not be able to choose who operates on you or when you will get treated. I will say, I do also know of many instances where medicare has been made available for urgent care such as bypass surgery without a blink of an eye. For some reason, I hear more and more about women with BC being told it's ok to wait as BC tumors grow slow. Some do, some don't. sorry to ramble.
Artsee: I'm curious - is the $1700 a month you pay for health insurance in the US for the two of you or just you?
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I believe one of the side effects for the antianxiety meds is a high pitched and very annoying ringing in the ears.
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I believe one of the side effects for the antianxiety meds is a high pitched and very annoying ringing in the ears.
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justagirl...Ah, the old 'free' health care system. Hurry up and wait. This is so unfortunate for the people that do need immediate care. In that way we are so fortunate here in the USA. My issue from diagnosis to surgery was one week and my insurance paid all. Your question about my insurance cost is for the BOTH of us. Although my husbands deductible is $200.00, and mine is $2500.00 a year.
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Hi, I don't know whether to laugh or cry after reading posts at this thread begninning and end. Venting ~
About the time my oncologist said I could live until my 90s. Also, I could take 3 Advil in the morning and 3 Advil in the evening for "the tin man syndrome" side effect/joint pain, my husband and I said we'd think about his recommendation. I trust my oncologist; however, on the way home I told my husband, "No thank you." which he supports. There's something to be said for quality of life in our 70s vs. quantity. Treatment is helpful to many, I agree. Cure is the name of the game. Good luck and lots of love to all, CMG
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Hi all, I was on tamoxifen for 5 years and thought I would be done. Horrible depression for all those years. I stoped in Nov. and they switched me to Femera . I am SOOOO tired. the depression went away and I do feel like my old self, just don't have the energy to enjoy it. I called my Onc. and they say it has 40 % benefit in taking it.
Janet
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artsee - thanks for clarifying the $ issue on your health insurance.
Don't get me wrong, I am happy we have medicare here in Australia for all citizens, but I chose to go 'private' and not wait, so like you, I only went 10 days from when I first found the lump to the lumpectomy. Medicare paid some, private health insurance paid some and all of the private hospital, including operating room time, my yearly deductible is $250 per family member, but ouch in paying the balance. One 1 1/2 hour surgery I had, well the anesthesiologist billed me $3200 and medicare and health insurance together paid for $900.
Instead of getting my hair done, and manicures and pedicures, and vacations, I pay to fight BC! At least my femara only cost us $32 a month here.
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Yes, Femara was $568.00 for three years (every month) and now since June it went generic and I went "Yipee"!
How can you turn down $ 23.00 a month right?
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artsee - yes, I agree$$$$ !
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Are any of you still paying the big bucks for brand Femara?
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I'm just finishing up the last of my brand name Femara. Insurance will no longer pay for it, with the generic letrozole now available. Dreading the possibility of new s/e's! Is there a difference in the pink or yellow generics that anyone can tell?
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Hi friends: Been off the site for awhile, really trying to stay off this whole bc site, but problems bring me back.
Lulubee: The generic in NJ costs $17.00 a month at CVS.. letrozole is the name. It is cheaper than the help I was getting to pay for the cost of the name brand Femara.
Emegran: I just started to have severe back problems after years with no problems of back. I am in PT now and am having problems walking. I am walking with a limp. My primary gave me the prescription to go to PT and to take prednisone which I did, but my legs and feet go numb and are tingling. I came back on this site to see if any one else is having this problem. All in all I find Femara or its generic to be much better for me than Arimidex which really destroyed me. I was on that for about 6 months, took a break for almost 3 and onc put me on Femera. I am hoping that if this is the cause of my leg problems, at least I won't have to run around to anymore orthopedic guys. I also had medical minescus surgery in June of the left knee. I am on meds approximately a year and a half.
Thank you and Hugs,
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Ronna ........have they given you any testing or scans since you have been having this pain in your back? Do you have Osteoporosis?
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Hello everyone
I'm new to the boards though have been lurking for a little while. Have been on femara (generic form) since summer 2011. Have the joint pain especially in my hands -----feels like I just got arthritis overnight and had more trouble with trigger thumb at the beginning. Still get it occasionally, but not as much---although a morning last week my daughter wanted me to help her braid her hair and my fingers kept locking up as I tried to hold her hair----I couldn't help her and felt so bad. Something that is bothering me lately though is shoulder pain. If I extend my arm a little too much it feels as though my arm is coming out of its socket. It is worse on the side where I had my surgery. Has anyone else experienced this too?
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Yes...I think it takes a while for all the muscles to heal from the surgery. And with the s/e of Letrozole it can be pretty miserable. All I keep saying to myself is " what's the alternative"?
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Yes, I agree---I say the same thing too. The other alternatives all seem to have similar s/es. Sigh.
Wish this didnt impede on my everyday life so much....
We had snow on the ground last week and I stepped outside to throw a couple pieces of bread to the birds-----didnt think to use the other arm and just tossing that bread off the deck caused a pain that practically put me on my knees. Oh well, one day at a time---I have to keep telling myself that and make adjustments, I am missing my pre bc life today! Time to get moving---if I sit too long at the computer I have to do what I call my quasidmodo walk for a short time until I get the crinkiness out.
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I have had to go to a PT for my left shoulder for 6 weeks. Then after that got better my right shoulder is almost as bad as the left was. I'm doing my own PT at home.
Letrozole just keeps on giving.
My trigger fingers and thumbs come and go. I still can't figure out why some days are worse than the others.
I still have 2 1/2 more years to go.
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dkerler----what kind of pt exercises do you do at home for your shoulders? I am not even a year in yet so I have quite a ways to go. 5 years seems like forever!
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I went to PT for a while for my back. My phys therapist gave me some exercises which do help to loosen up my low back when I first get up in the morning. I am now 4 weeks off Femara (taking a break with OK from my onc). I got up this morning & actually noticed that I feel better, except for some low back pain. I get a 2-month break -- so I am now asking myself, what am I going to do when 2 months end? Go back on the stuff? If I continue to feel better, it will be so hard to start taking the stuff again!!
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I am not taking any more Femara (or the generic). I'm 57 and feel like I'm 87. All my joints ache, my fingers have never hurt before in my life and my lower back is so painful I can barely walk. But meanwhile I'm trying to exercise and eat healthy but it's kind of hard to exercise when it's painful. The hot flashes are even worse. I go from being chilled one second to dripping sweat the next.
I said eff this and quit taking it. My onc won't be happy with me but he's not the one dealing with the SE's on top of the fibromyalgia pain I already have.
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My massage therapist does this slow arm and leg pull. I had to tell her never to do that on my cancer side. It took a while before it didn't hurt anymore after surgery. Also I remember when I stretched to reach for something on a shelf it pulled too. I too am waiting for the time to go off Letrozole...next year in May. But then I think how will I feel knowing my blanket of protection is gone?
I think it's called " being between a rock and a hard place". Sigh.
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I guess the good thing emegram, is that if you go back on it, at least you know that when you are finished taking it that you will start feeling better. I have wondered how quickly the se's will go away. Its something to look forward to.
Artsee, everytime I am in my kitchen I experience the pulling when I reach for things on the shelves. I am a shortie and I have always hated having to drag a chair around to reach things but now its hard to reach even the shelves I used to have no trouble with. Very frustrating, but my doc told me that I am high risk so I will persevere. The shoulder thing was really bothering me because I was having a fear that it might mean something else.
Chiluvr----I wish you the best. We all have our own pain threshold, sounds like you have reached the end of yours. Hang in there. How long have you been taking femara?
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Jacee - I never took the brand name Femara, but have taken both the pink and beige letrozole (mylan and cara are the makers, I believe). Anyway, I took the pink for a month and now the beige for 3 months. I'm not experiencing a ton of SE's. I have dry skin - use more lotion
. Some joint aches, and don't sleep as well as I used to. But - for me - I find it very doable at this point. I don't, though, feel I have a choice, as I had no rads or chemo. (I will also say that my hubby says I'm much more edgy than I used to be.)
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gardengumby- thanks for the input. Heaven help me if I get any more edgy
chiluvr- I understand exactly how you feel. Have you ever considered taking only 1/2 a tablet? I had to switch to that after only about 3 months on a whole tablet. I had trigger finger in 2 fingers, and could barely step up a stair, or on a curb. And getting myself out of the bathtub was next to impossible. My onc isn't thrilled with my switch, but I had to consider quality of life. With 1.25 mg, I still get more than double the .5 mg dose that Novartis said you get estrogen suppression with. It would be worth a try. I have very little joint pain anymore and the trigger finger went away almost immediately. I do have terrible vaginal dryness, though.
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What is trigger finger?
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Ginger-
Definition
Tendons connect bones to muscles in the body. Flexor tendons of the thumb and
fingers pull the fingers into a fist. The tendons are enclosed in a
synovial sheath. When this sheath becomes inflammed it is called trigger
finger.Usually, tendons slide easily through the
sheath as the finger moves. In the case of trigger finger, the synovial
sheath is swollen. The tendon cannot move easily. This causes the finger
to remain in a flexed (bent) position. In mild cases, the finger may be
straightened with a pop. In severe cases, the finger becomes stuck in
the bent position. Usually this condition can easily be treated. -
Jacee. Thanks for the definition; I have seen it mentioned quite a bit and figured it was something like that. Is there a way to try and prevent trigger finger?
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Ginger, since mine resolved itself after decreasing my dose, I never had to pursue a remedy. I know some have surgery to correct it, but I'm not sure about prevention. Surely, some others with more knowledge about it will chime in soon.
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Went to onc todayThis was a different onc. Everything looked good till i ask her for refill on my tramadol. She said that i would have get my regular dr. write it for me. They only write for a month or two.but the reason i have the pain is due to the femara and it not my regular dr that put me on the stuff. She said exercise and lose weight . She was rude needless to say i willnot go to her again . If my regular onc is not in i will not go.
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Nanna, some of these doctors should be forced to live our lives, and then see how they feel when they get comments like that. Sometimes I think I should just take a baseball bat with me to the onc office. I actually like my oncologist - but her PA is a pain in the a$$. Take care!!!
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Nanny: so sorry to hear about your visit. There's no reason for doctors to be that way. Why did they choose that profession anyway? Sending wishes for a better day :-)
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So sorry, Nanna, for such a rude response from your substitute onc. Her remarks were certainly uncalled for, and I just wish she could walk in our shoes for a while when our joints are creaking and our body hurts!! Don't let her get your down -- we have come a long way, and we are strong enough not to let callous, insensitive people bring us down!!
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Nanna,
wow, do I hear you loud and clear. What are these doctors thinking? Like you, I have been taking Femara for 16 months now. Before BC, I used 20 50mg Tramadols over a month for treating my 40 year history of migraines. Then comes BC, 5 surgeries, including a DMX with a LD flap (and I have scoliosis), chemo and rads. Hot flashes and aches from femara, back hurts like hell with any activity due to scoliosis and loss of LD muscle.
I need to function and move. I live on 8 acres and do lots of heavy yard work (and love it when I don't hurt). I eat well, don't do alcohol or cig's, try to sleep (aches keep me awake) and yet
when the GP finds out I am taking 20 tramadol every 2 weeks instead of 4, oh my heaven I get the dirty looks. Packaging says you can take up to 400mg per day, that's 8 pills. I at most take two in the morning and usually 2 at bedtime so I can stretch out.
I agree with you. Lets let some of these doctors try and live our now 'normal lives' and not require pharmaceutical intervention!
Can you tell I'm angry?.....and I've done tons of PT and stretch every morning and night and run 30 km a week!
Now what am I supposed to do? Sip on honey and tea for my pain? My husband says my temperament has changed (for the worse) with femara, well, it's coping with pain that makes me a bitch on wheels!
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Awe Nana, as if we don't know our own bodies! I too get either the looks or the comments about the weight issue and I hate it! It makes me so angry that at one time I let fly at one of my docs. He sat there with a very stunned look on his face but I laid it on the line................Don't you think that if I could loose weight I would? It took me three years to loose 10kg and then you put me on a drug that the first se you listed was weight gain.............thank you very much!!! I eat healthy I rarely eat sweets I limit my bread intake, my diet is mainly fruit and veg with very little red meat I can do no more other than not eat at all!.....................Needless to say, he has never commented on it ever again and my GP got a letter saying that I seemed a little upset at my last appointment......hahahahahaha! Me? Upset? noooooooo.
Sometimes we need to give then a piece of what we put up with on a daily basis and the only way to do that is to let fly. I agree with you about not seeing her again and I would ask if there was somewhere where you could lodge a complaint about her bedside manner.....or lack of it!
Love n hugs. Chrissy
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One of my finest hours in life was the day when, at the ripe old age of 28 and newly pregnant for the first time, I went to my first pregnancy checkup with my OB-Gyn... an older doctor who thought he was the answer to the questions of the cosmos... and when I handed him my enormous, economy-sized bottle of high-quality (expensive!) multivitamins, which was new and full, and asked him to read the ingredient label and confirm whether they were okay for me to take while pregnant, he ACTUALLY PATTED ME ON THE HEAD and said -- without looking at the bottle at all -- "Just finish them, dear, and then get some kind of prenatals, it doesn't matter" -----------
!!!!!!!!!!!!!!!!!!
There were enough vitamins in that bottle to last me the entire pregnancy. I needed an answer to my question, not a patronizing pat on my very intelligent head.
I said, "You may leave the room now."
He looked at me like he wanted to slap me. "What do you mean, leave the room?" he smirked.
And I said, "What I mean, doctor, is you are fired."
He was furious, it was fabulous, and it felt really, really good.
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Does anyone take melatonia and if so how much.
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Nana, I take Melatonin . Is that what you mean? I break a 5mg tablet in half and take about thirty minutes before bedtime.
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Nanna, Melatonin is a good sleep aid as it will not react with other meds and is produced naturally in the body but due to ag and illness the production drops. You can saftely take up to 20mg but most people take about three. The best thing to do for yourself is to try at a lower dose and if that is not enough increase it in small increments until you are getting the desired effect. Also, if your sleeping problem is you find it hard to fall asleep then the normal pill is just fine but if you have difficulty staying asleep, then you may need the slow release version. It is best taked 15 - 30 mins before bed time. A lot of people take it as they go to bed and then read in a comfy position for 15 mins before turning the light out. Good luck!
Love n hugs. Chrissy
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Hi, I'm on Effexior for the hot flashes and I can't take Melatonin with it. I think it only reacts with some antidepressants.
Janet
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Hi all, I've ben reading the posts. I'm 51, BC in 2006, on tamoxifen for 5 years and now they put me on Femara going on 3 months. I thought I would be DONE after 5 years. I have Osteoporosis and my chol is up but my good chol is 119 so that helped.
I had DMX, 6 months chemo and 5 years Tamoxifen is anyone else on drugs so long?
I am so tired and bloated.I want to stop so bad but I have a 6 and 10 year old and I'm scared.
thanks Janet
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Janetip if you have already done 5 years Tamoxifen, why is your doc insisting on Femara now and for how long? What grade was your cancer, perhaps that is why.
The Femara won't help your osteoporosis nor you cholesterol levels and weight gain is another SE. If your doc wants you on this for another 5 years, perhaps you could ask about a bone strengthener as in a bisphosphinate (sp?). The choice to stay on the meds or not is your decision but I would question my doc as to why he/she thinks you should.
Love n hugs. Chrissy
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Hi Chrissyb, I didn't question it at my last Onc appt. when he changed my meds. Now that I'm getting the SEs I'm so done. My nails and fingers look like they went thru a food processor. My pic is from Nov, now I am so bloated and my husband said yesterday what happened to your hair and that is just the outside SEs like I said the rest is happening inside.
I put a call into him yesterday and I hope to hear from him today. I don't know my grade but it was between a stage l and ll they just were not sure because I had a lumpectomy first and margin's were not clear.
I was just wondering if any one else has been on meds more than 5 years.
Thanks so much Janet
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Hi! I´ve read every post on side effects, but only the first and last page on this FEMARA discussion...it would take me too long for the rest and I´m wondering if someone feels like I do. I´m 59 years old but quite active.
After lumpectomy of a stage I breast tumor, I had radiation treatment and went right into FEMARA.
I have just a little over 5 months to complete 5 years. All this time I had minimal SE´s, (including osteopenia/osteoporosis, but again, I´m Asian, so I´m prone anyway), like some hair loss, and vaginal dryness.
A few months ago I was diagnosed with mild cataracts. I thought that I might be able to live with this dreadful news....until NOW, that....
.... I´m getting generalized itchiness (I look like a monkey who doesn´t bathe)...suddenly I have hypersensitivity to allergens and even to the clothes I wear, and excruciating pain on my left upper arm when I try to reach my back (all my lymphs were removed from my left arm).
I hate to think that I might have to operate on my eyes sooner than later (my Mom did hers at about 72) and am seriously thinking about quitting Femara at this point and end this torture. (My onc says that my osteoporosis will no longer be a major problem after I´ve finished the treatment.)
All my 6-month follow-up visits went swimmingly.
Does anyone think like me, that it´s possible the 5-year required treatment period might be a pharmaceuticals marketing strategy?? Has anyone quit ¨prematurely¨ and not had a recurrence? I´m sooo sad...thinking of the possibility that we all are being taken for a ride.
Can anyone tell us about a ¨happy ending¨ to the FEMARA treatment?
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Janet, there are some women here on the boards who have done the first 5 years with Tamoxifen and then followed or are following that with either Arimidex or Femara. If my memory serves me correctly, they were either very high risk or stage IIIb so were taking the meds in the hopes of reducing their risk. Before you make any decision to quit or not, I would check out the reasoning of my onc with some percentages to back up what he/she says.
Hi Toquitornot sorry you are here but glad you found BCO. There have been many studies done with the drugs that we take and the 5 year mark for each of them is set as that amount of time seems to be the optimum for prevention of recurrence and that is why it is recommended. Notice I said recommended but wether you take them for that length of time is entirely up to you. There are many women that have completed their 5 years and are still doing very well but there are also women that are in the process of getting through that time and have had a recurrence. There really is no guarantee with any of this, all you can do is do what is prescribed and hope that you have done enough.
Love n hugs. Chrissy
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Thank you so much, Chrissy, for listening. I will try to contact my onc to discuss my frustration, before I make a definite decision. Blessings!
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I don't have a link, but I read an article last summer saying that one of the best indicators of 5-year survival was adherence to hormonal therapy. So I don't think this is pharma marketing strategy.
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I don't have a link, but I read an article last summer saying that one of the best indicators of 5-year survival was adherence to hormonal therapy. So I don't think this is pharma marketing strategy.
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Thanks, the more I read I tend to think I will go on it again. I do want a couple of months break. I have a goal to live till 100. Janet
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I am 6 weeks on Letrozole (pink generic pill for Femara) and am now having joint pain and trouble sleeping because of it. Is this what I have to look forward to and does it go away with time? Any suggestions on how to get relief?
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Ginger, there are a few different generics and I have heard that some are better than others when it comes to the SE's. Could I suggest that you have a talk with your Pharmacist and perhaps try each one until you find the one that gives you the least SE's? I'm sorry to say, there are always SE's but even though I have very few I still have the common ones as in dry skin, dry personals, dry hair and nails and some fatigue but I don't get the aches and pains. I live in Australia and get the original Femara.
Might I also add, that if the SE's are really bad and are really interfering with your QOL, you can always ask your onc to change you to one of the other AI's. Please give them some time as the longer you are on it the better a lot of the SE's become for most people.
I have arthritis and because of that have joint pain all the time and I take fish oil and boswellia to help with the inflamation and recently, after explaining the possible se's, my doc started giving me Vit K as an anti-inflamatory and that is working a dream. For sleep, I use and have recommended Melatonin. This is available over the counter in America from most health stores and pharmacies. The dosage for each person differs but the usual is about 3mg and taken about 15 mins before bed. We naturally produce Melatonin but because of age and illness, the production tapers off hence the sleeplessness. If your problem is just falling asleep, the ordinary pill will do just fine but if your problem is staying asleep, then the time release one is better. To find the right dosage for you just play with the amounts as you can take up to 20mg safely but as I said earlier most people find that about 3mg is perfect.
Hope this helps a little. Good luck!
Love n hugs. Chrissy
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Thanks, Chrissy, I will talk to my naturopathic dr about the vitamin K and melatonin. I already take the fish oil.She has me take magnesium before bed. I had not thought about talking to the pharmacist; I did not realize there are different generics. My ONC said to try it till June when I see him and then we will talk about it. My mom was on arimidex and she was miserable from the SE so I am a little afraid to switch to that one. I do not have any trouble falling asleep but I wake up with cramped shoulders, elbows, etc and then have to find a new position. I usually fall back to sleep quickly but it is just a constant breaking up of my sleep that is wearing me down.
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What dosage of fish oil & magnesium do you take?
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Ginger, I was on Arimidex to start with and if there was a SE to be had, I had it and then some. I didn't have any QOL at all so my doc changed me to the Femara and I am my almost normal self and I laugh again. That was the first thing my DD's notice and commented on. My point being, just because your mom had a problem with Arimidex doesn't mean you will. We are all different and react to the drugs differently so just because you have a problem with one, doesn't mean you will have a problem with another in the same family. I agree, broken sleep is the pits!!
If my memory serves me correctly, I think there are four or five different generics. The active ingredient is all the same but it's the fillers they use that cause us a lot of the problems. Good luck with your research and I hope you manage to find one that suits you better.
Love n hugs. Chrissy
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Tenaj, I take 2000iu of fish oil and 300mg of magnesium. You need to be careful with the magnesium as it can cause diarrhea if you take too much.
Love n hugs. Chrissy
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My doctor talked me into taking Letrozole (generic Femara) on Monday. I awoke Wednesday with ringing in my left ear (tinnitus), constant ringing. It has not stopped. I'm going to call her tomorrow to see what if I should continue taking this medication. I can, barely, hear out of my left ear. If it's not one thing, it's another!
I knew that I didn't want to take this medication!
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TooManyCocktails that is one of the SE that does go away after a couple of weeks.
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Good to know, Chrissb! I was thinking that I'd have to deal with this for the rest of my life (however long that may be?). Thanks for sharing this info with me. I guess, I'll take tonight's pill. I'm really paranoid about this medication. . .Whew! I can't even explain it??? I guess, it's because I had bad reactions to the Tamoxifen and Arimidex. I did find out that I am a CYP2D6 intermediate metabolizer; so I shouldn't have been on the Tamoxifen in the first place!
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I know what you mean, it turns out I'm allergic to Tamoxifen and the Arimidex for me gave me no QOL and such depression I would have rather be dead but to my surprise, once my body got used to the Femara, it feels like I'm taking nothing at all I feel so good. Here's hoping it works that way for you too.
Love n hugs. Chrissy
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I am so glad to read you last post to say that your body got use to Femara, I have just joined the group and just started on Femara, so far no side effect other that a few hot flushes but after reading this I am so scared of what is to come. I have spoken to many ladies at the hospital who said they could not tolerate the hormone therapy the doctors had put them on. I thought when nothing happened after taking the Femara they must have been on someting else. Now I'm not so sure. I was on Tamaxifen for 3 years till my cancer returned with little side effects. Hope this will be the same!
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Joy, you may not have any of the SE's that you have found on this thread. There are a great number of women taking this drug that have, other than hot flashes and dry skin, no SE at all but they are the ones who do not post here. I wish you all the very best and hope your non se's keep going.
Love n hugs. Chrissy
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TooManyCocktails I too have the ear ringing and was told there was 'no way" that the generic femara caused it. Hmmm. I also had a cataract double in size in the year I was on the generic. I finally asked doc to be switched back to the name brand.
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Janet...you can see my DX below. I had chemo, rads and am into my Femara 3 3/4 years. Originally my Dr. said after the first 5 years of taking it I may have to do another ten years. It made me cringe because I heard that it did higher you cholesterol and causes Osteoporosis which I already had. Now he says it's only 5 years for me and when I asked why, he said they have found no evidence to prove that it is helpful anymore after another 5 years. I am happy about that because I can't imagine what my bones and overall body S/E would be after 10 years.
You on the other hand were on Tomaxifin which is a totally different animal. It's not an AI so I can see where your Dr. may think think this is a plus for you to take it. Femara is an Estrogen inhibitor. Even though woman are in menopause, we still secrete the stuff from out Adrenal glands and Pituitary glad. Yippee!
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Thanks Artsee, I am hoping to hear from my Onc today. I just want to see if I can take a small break from it. janet
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Pat634, how long did the ear ringing last for you? I sure hope that it wasn't the whole year that you were on it.
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TooManyCocktails I still have it but the really annoying ear ringing started just before Christmas of 2011. But I keep taking the Femara because the alternative (cancer recurrance) is worse.
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janetlp - what did your oncologist say? I spoke to mine and asked about me taking a "letrozole vacation" for a month each year. She said it was fine, but she also said that I may regret it, as my body is adjusting to the letrozole, and to take a "vacation" may simply have me run through all the SE's again. So, I may reconsider.....
I took tamoxifen for about 6 month, (had to stop as it turned out I was allergic and the SE's were horrendous - my mother, on the other hand took it for 10 years with NO problems). My oncologist is including that 6 months of tamoxifen in my 5 year hormone therapy, though, so it'll be 4.5 years on letrozole.
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I have to asked.... with this conversation on taking vacations from Letrozole or Femara.
Does the drug stay in your system for a month? Is there no concern that being off will allow estrogen to sneak back into the body? I'm unclear why Dr.s would say it's OK to do that. Has anyone knowledge to answer this, after really discussing this question with your Onco?
I won't see mine for a while.Thanks.
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Hi I don't think in my opinion it would be a good idea to take vacations from the drugs. In my case I have finished five years of tamoxifen with no breaks I just wanted to take two months off to see who I really am. I had a rough five years on the tamoxifen .I have heard different things about the femara You see percentages can be deceiving. Let's say you have 1000 Women 500 on a placebo 500 on the Femara 2% on the femara get a reoccurrence 4% on the placebo get reoccurrence. So in the studies it comes out as a 50% increases your survival rate. So in the big picture it was actually 2%. Also in the studies it was mostly high-risk women. So my point on this is if I'm low risk. I need to weigh the risks of SEs compared to the survival rate. my oncologist will be calling me today and I'm going to be asking him. Janet
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I also read online 10 years on the tamoxifen actually had higher recurrence rates. So my biggest concern is 10 years of drugs. I think this is a very individual decision on your pathology , risks and quality of life.
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What grade was your tumor? (Janet)
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HI, it was actually stage 1 grade ll. Janet
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Artsee, I don't think the drug stays in your body for a month. In fact, I believe the oncologist said it "washes out" fairly quickly. My oncologist says that I need 5 years hormone therapy - total. She said it does not need to be unbroken - just a total of 5 years. I do not know what she bases that on, though.
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My oncologist said that the joint pain is worst during months 1-3. Did anyone find that it did get better after a few months? I"m 6 months in and have had some lower back pain, but I also have poor muscle tone after chemo, and getting back to sitting in a chari all day could be giving me that even without femara.
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I found that the joint pain was much better by month 9. That was also after I found the correct dosage of omega, and all the other things I now take including tylenol for arthritis twice a day. Hang in there.
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Google why you should not take Femara every other day, or stop for days at a time................I was surprised at what I saw......................I have some SE's, but again I'm 76 and at this age who doesn't have aches and pains, bujt honestly I do believe it is the Femara causing it, but until it puts me flat on my back I will continue...............I'm not trying to live forever, but I don't want to deal with recurrence in another part of my body ............BC was bad enough.
About the generic...........................I have heard of many who went from Femara to the generics and got, new, more, or worse SE's.........so as long as I can afford to take the Brand, I will.........it is very expensive, my co-pay is over $200 for a 90 dau supply.
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ducky....with the price difference from Femara to generic I'll suffer with the elevated s/e's.
A little over a year ago. The price went from $568.00 to $22.00 at Costco for the generic.(30)
Picked up my prescription yesterday and the total was down to $16.00. Wow..what is up with such differences in price?
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I have take the Femara and also the generic and i cant tell any difference still have aches and pains.So i decided to take the generic and save me about $400.00 a month. I can handle the aches and pain and put extra money for groceries and gas
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I plan when I run out of my Femara (brand) to try the generic, but if anything gets worse then what I already have, I'm back to the "brand"..................There is something to be said for quality of life................I do know many who have switched, and either got SE's when they had none. The SE's they had got worse, and then there are those who saw no change.........................I will base what I take on my quality of life whichever I am on at the time.....................some things are just worth the extra money.......................Mine is a bit over $200............have never had to pay more then that..............
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Ducky..you are right. If you feel that badly, I think anyone would pay the price. I didn't get all that much worse....but one day is better than the next too. I have to blame a lot on this fr---ken weather. Damp, cold,damp. Who wouldn't stiff right?
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Artsee...........yes the weather does play a huge part in your body doing great or not so great...........we all know what they say about the barometric pressure cause already sore parts to hurt more...............plus age.................
You said that your SE's when you began the generic didn't get all that much worse................so they did increase, even though it wasn't that much.
This is what I have heard from others...........keep in mind.........the compounds of a generic have to be same as the "brand", but the "fillers" do not................sometimes that is what makes the difference between no SE's, and increased SE's................
It can be as little as the dye they use to color the pill.................
So I would be interested to know what SE's you already have from the A-I, and how did they increase if at all.................I like to spend money like everyone else, and do not appreciate having to spend it on drugs, for my survival................so anything saved would be a blessing..............I had thought of giving it a try for possibly a month or two, to see if I nothice a change.............if not, then I probably could switch, but if anything gets worse...................I would just spend the extra for the little more comfort................ .................................something else I found out today..................Generic companies do not give their Dr's samples..........................never knew that..............my BS told me that today when I was there for my 1 year check;up..................Imagine worked for a Pharma. Co., and never knew that the competition did not give out samples.....................hahahahahaha......well as they say "you learn something new everyday"...........
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You were speaking of 'dyes'. This month when I picked up my Letrozole the color went from 'pink' to 'ta'. When I asked about the color change they said it depends on where they get it from. (spoooky) Anyway, my joint pain in the fingers got worse when starting the generic and also
the knuckles are getting bigger. I feel like I have hands of a 90 year old.
Lower back pain got a little worse and certain muscles bother me when I flex them. Oh my....
I tried to get a month of samples because we are going to AZ for the month of March but the nurse said they don't get samples anymore, so I have to call my pharmacy and have them fax the scrip out to AZ.
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Artsee,
You might check with your dr/pharmacist, to see if they will give you enough to take with you.
Before we left home (snow birds) my MO gave me enough pills to last until we get back home.
VIckie
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I actually called Novartis to inquire about their Patient Assistance Program...........I was told............we don't give our Femara in the assistance program................I was shocked, but they call the shots.
I worked for a Pharma company for 15 years, and there was not a drug that we manufactured that we ddi not have in our Access to Care program (that is what we called it)..............so I pay the co-pay required.............now Arimidex manufactured by Astra Zeneca is given out for free (if you qualify)................but I won't switch...............I know I am right about the SE's of the generic AI's..........you never know from one month to the next which one your gonna get, its whatever they send that month.................so each month, you could be experimenting with another generic................and each one could have a different SE problem.................or none............................its a crap shoot...........but they are not exactly the same as the Brand.....................exact means everything is the same.........apples to apples.............when your using a different dye, or filler, that is not exact..................
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My insurance company refuses...says it's their policy to only allow 30 days. So I said screw em and I'll have to get more in Arizona. It's a 30 min. drive to Costco just like here where I live. The savings is worth the drive.
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Artsee, so sorry not responding back to this thread, also dealing with "I HATE MY IMPLANTS ISSUE".
I now have back issues along with the knee problems. I do know that after taking some new xrays at the spine dr's office I am loaded with arthritis. Always had it in parts of my body, but now it is more severe. I am taking an MRI tonight, want to see what my lumbar spine is doing. My dexta came out perfect when that was done. I do not know whether my problems are my going to the gym too much to do zumba or the meds. I was on Arimidex which destroyed me, plus everyone telling me to see a "shrink" because of my personality change. Started Arimidex in Dec. 09 in June of 2010 tood a break because of the severe side effects, started Femara in Oct. 2010 and have been on it ever since. All in all I have a better "quality of life" with Femara than Arimidex.
I am now on generic too, love the $17.00 a month although my onc will give the real pills.
So after trying to stay off threads, I am back on with my bc sisters who understand. Thank you.
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We are our best 'listeners'. It actually is comforting to know other have the same problems and it's not the dreaded disease coming back to haunt us. I had always heard that Arimedex is the worst. My Onco asked me if I wanted to try that one if I wasn't happy with Femara or it's generic and I said nooooooooooooooooooooooo way Ray!
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Hi Ladies......................have a friend on Arimidex, and gets along better then I do.........says she has no SE's, but complains about her finger joints swelling and hurting.............says her feet hurt when she walks first thing in the morning..............says her hair seems thinner,............says she has aches and pains.................so I said to her...............that is the SE's of your AI.............she said.......................no its not........................I said .........read your insert that the Pharma company gives you................or the one that comes with your script from the Pharmacy.............she said "oh I never read those.............I throw them out...............if I did, I would imagine I had all the SE's..........................thought..............ok, enough said...................I have been on Femara (brand) since July 2011.............SE's but nothing I can't handle.............no hot flashes, which is a blessing, but then again going through the "change" I never got hot flashes either.............Might take a chance on a 1 months supply of the "generic"..........we'll see.
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I've never taken the brand name - started out on the generic by Mylan which was pink. Then (I get mine at Costco, too) they switched to the generic by Cara which is tan. I've been on it for about 4 months. The SE's I have:
hot flashes (which I really don't mind, because I hate being cold)
occasional dizziness
sore muscles - especially in my thighs, and most especially when cold
arthritic spots are more painful
fuzzier thinking than I'm used to, more difficulty remembering things
more moody. My feelings get hurt much more easily, I cry more easily, my ups and downs are more extreme.
I noticed that when Costco changed from Mylan to Cara that the SE's I was adapting to had a "reset to zero" and the SE's got worse. They have now diminished again. I also, though, take a ton of supplements. I have noticed that when I don't take my 2000mg of curcumin per day that my body aches more.
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hello ladies,
Reading all of your stories about the SE's of the AI treatment is making my head spin. You are all so brave to continue to fight. I'm supposed to start taking the pill in a couple of weeks and ?????????? I don't think I can handle it. Five years is a long time. You all have my respect and admiration.
I will try to cope on the AI, Don't want to make a decision without at least trying.
maureen
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Yet you tell your doctor you don't want the generic you want the name brand and what do they ALL say: "it's the exact same thing". Like I mentioned earlier, doctors get very little training on medications and their side effects.
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I still have the ear ringing. I went to the ENT today and he said that I have lost my hearing in that ear. He doesn't know if it will be permanent? He's starting me on prednisone
to see if it will help. I hate steroids! They make me feel crazier than I don't know what! Just nuts! Anyway, we'll see. -
Ladies, at least give the AI a try.........you can always stop.............I take Femara, and have approval from my MO, to continue even though my insurance doesn't cover it anymore........I got permission from them to take it, but it is a lot more expensive then the generic.
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ToManyCocktails: I love your "pic". Funny, That is how I am. Don't know when next outburst will be. But again, as I said, for me personally, Femara worked out much better than Arimidex. Each person reacts a different way. Most of all $16.00 is the price I can afford, even if its generic. I figure it this way, if the Big C wants to come back, it will anyway.
Hugs,
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ToManyCocktails: I love your "pic". Funny, That is how I am. Don't know when next outburst will be. But again, as I said, for me personally, Femara worked out much better than Arimidex. Each person reacts a different way. Most of all $16.00 is the price I can afford, even if its generic. I figure it this way, if the Big C wants to come back, it will anyway.
Hugs,
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ronqt, my husband says that the whole family may be living in the backyard while I'm on the prednisone! The chemo meds ain't no joke! (((hugs))) Hang in there!
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MOOD SWINGS..HOW COULD I HAVE FORGOTTEN THEM? OF COURSE....THEY ARE BAD..SOMETIMES I SCARE MYSELF ABOUT HOW I REACT TO CERTAIN THINGS THAT ARE GOING ON.
ANYONE ELSE FEEL LIKE YOUR NOT THE SAME PERSONALITY AT TIMES?
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Artsee, I know I'm not the same but that isn't necessarily a bad thing. I don't suffer fools gladly anymore. I am more honest about my feelings and I try not to postpone getting out and doing. Have a good day.
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hi ladies, it is so great to find this discussion board still up and going, and so helpful. i have just finished five years of tamoxifen after radiation, lumpectomy and chemo, and never would have made it thru treatment without the sisterhood i found here. knowledge is power!! and now, much to my shock, my onc has told me that - if i want - i can take femara for 3 years. i thought that i had eached the end of the road and i could finish putting this behind me. he is not recommending femara, just suggesting it as an option. i have read up on it, and the literature says that it is beneficial, yet he says that only 1 % breast cancer pts have a recurrence after 5 years tamoxifen (also said that other oncs report a higher rate). reading this discussion of SEs has given me a lot to think about...........thank you all!
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Merlette. Not every one gets all or any of the SE's from the drug but they do get the SE's from lack of estrogen which can be mistaken for a drug SE.
I just edited to add the things that were dropped by my phone....bad phone!.....lol
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Merlette..If your Dr. isn't really recommending Femara I wouldnt hink it is beneficial to you. It depends on your diagnosis. I for one, was NOT a candidate for Tamoxifin because my tumor was Estrogen fed. I had to take it because Femara keeps estrogen from forming in our bodies.
I was Er+,Pr+ Her -. What was yours? It sounds like he's trying to appease you.
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Merlette- I had also been told that I could take tamox for 5 years and then follow it up with Femara for a few more as added insurance. But I ended up having an oopharectomy so the dr put me straight onto Femara. I guess if you decide there is added benefit you could always try it and discontinue if the SE are too bad. Good luck with your decision.
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Hi all! Just wanted to check in cause I haven't been in here for quite some time. I need to hear from my "sisters" about side effects from Femora. I started taking it in '09, after chemo & radiation. I've always had pain in both arms. But since Dec., the pain in my legs has been unbearable. To the point where I could not walk. I did some research online & took myself off Calcium w/D. I read that it can cause all kinds of problems. It did help, but now the leg pain is back and I can't stand it.
Do any of you have this pain? If so, is there anything that is helping you? Thanks, Helen
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Helen...I for one do not have pain in the legs. I would suggest you see your Dr. to put your mind at ease and maybe he can recommend relief. Good luck.
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Hi Helen,
I have leg pain...severe leg pain and pain in feet and low back. Been on Femara since Oct. 2009. In Jan, 2011 my Onc switched me to 1 pill every other day. It helped. Then.....the lovely Generic came in last June and along with it, worse feet pain. I was also taking vit D but had to stop as it gave me chest pain. I feel terrible each and every day. I am so tired of it. Originally, before Generic, I was having so much low back pain that I tried an Acupuncturist and it helped so much after the first visit. I am feeling so bad again that I am thinking of returning to her. I really want off these meds to get my body back but I still am scared to go for it. Every once in awhile, I will take a half of Vicodine at night. I know that these Generic pills have "fillers" which seems to be the culpret of SE's. I think the fillers do more harm to your health than the bocker portion of the med. Early on, I was so bad that I would wrap heating pads on my legs at night. I still do that on occassion also. I know it could be worse....I tell myself but this is no picnic either. Take care!
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Ladies, I went on a self-imposed sabbatical for 6 wks off Femara. Since re-starting on 1-1-12, I have much less joint pain & in general I feel better, I'm even losing a little bit of weight (altho I'm being super careful about what I'm eating!) If my aches, pains & general feeling off returns you can bet I'll do another vacation!
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Artsee, in answer to your question, who am I with mood swings - sometimes I go off the wall and as I am screaming and having a fit, I personally think I am nuts (along with everyone around me).
I also have developed some leg and back pain, but I believe I can really attribute it to pushing myself in the gym. I don't know when to stop. - so I blame it on the meds. Again, Arimidex did not work for me. I really appreciate being put on Femara.
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I am terrified of Femara
I started the drug in May 2010 (correcton for gardengumby!...thank you!!) and within days had the awful stiffness (painful to walk upon awakening, significant reduction in tendon flexibility, etc.) . Here's the scary part...when I took my bone density test in June 2010, I had a T score of -1.8 in my pelvis...a month ago, a dear friend gave me a bear hug...found out 2 weeks later I had one rib fractured in 2 separate places (doc was scared CA had come back due to rib pain, but was able to rule out recurrence is CA by bone scan). That was the happy news...no recurrence. However, he sent me for a bone density scan and he called me last Tuesday to advise that for the first time in his medical practice, he has never ever seen a score as alarming as mine. Now it is -4.9. Yes, -4.9. I stopped the Femara immediately as it is presumed it is leeching my bones. Now I am being tested for Multiple Myeloma as there is a slight concern (due to the significant and unusual amount of bone loss) that Femara could cause it...we will know in a few days. I sure hope not. I am currently undergoing a myriad of other tests to determine the extent of damage this drug has caused in just under 2 years. I have expressed my concerns over the benefit (60% reduction in recurrence is really an exaggerated % when you are looking @ the actual study). I will know more in 1-2 weeks. Biggest problem is that I am already deemed ineligible for Lilly''s bone density drug (which is supposed to be amazing for someone in my predicament of significant bone loss - I am 48 years old, with the bone density that is "worse than any 90 year old" patient my doc has ever seen.
I wanted to stop Femara about 2 months after I started it...but docs x3 told me that in their "professional" opinion, it was more important to take Femara than the chemo and rads I went through. So, I trusted them and toughed it out, taking it every day for 22 months. Now look @ me...less than 2 years later... What a mess I am. Femara has destroyed my bones and I don't know how much can be repaired/restored? Why my docs did not order bone density scans annually on such a bone leeching drug until I got a rib fracture, when Femara is KNOWN to cause Osteoporosis, is beyond me.
Demand annual bone scans if you dare to take this drug, please! -
thanks for the information, and I am SOOOOO sorry to hear about your dilemma. I'm having my bone density scan this week. I was angry that they didn't give me one prior to starting me on letrozole, but I'm only 4 months in, so I guess that's not TOO bad. I got poopy with my onc last visit, and said I wanted one - and then they didn't get "around" to setting it up, so I called last week and got it scheduled.
I'm sorry to be stupid here, but what is myeloma? Also, why can you not take the bone density drug? If I'm being too snoopy, just put me in my place.
One thing I'd like to note, though, is you've been taking femara for almost 3 years if you started in May of 2009.... However, I see you were diagnosed July of 2009, so you probably started taking it May of 2010???
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Dear Sanaisa,
Please don't be terrified of Femara. That is the most effective non-steroid AI and I will never switch to another AI. And many women have only mild side effects, there may be some genetics involved in it. I am taking Femara for more than 6 months and doing alright but I also get Zometa
which helps a lot. I just got some information from the trial I am in (Femara plus Zometa) - only 1
woman (out of almost 40) quit the trial because of the side effects - usually around 25-30% of women stop taking any AI (not only Femara). I highly recommend anyone to join this trial in Johns Hopkins.On the other hand my Aunt is taking another AI and she doesn't get Zometa - still she has the same level of joint pain she had before she started the treatment - it has not become worse. So you never know.
And another suggestion - go to the pool! It works for me -
sometimes I have painful joints but it will get better after the swimming. I go
to the pool at least 5 times a week - nothing can be better for your joints.Stay positive and good luck!!!
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Thanks New Olga and gardengumby. Definitely, make certain to at least get a bone density scan just prior to starting Femara, and ask for one on an an annual basis thereafter. I have been taking the drug for 22 months and the amount of bone loss I have sustained is extremely alarming. Unfortunately, cannot be going back on Femara.
Femara is known to cause bone loss in users. Just how much bone loss is the variance for each individual. All will have loss...some have a lower and tolerable amount. Others, like me, cannot take the drug. The femara.com website states this right from the onset, look for yourself
I did not really understand the numbers behind the results of the original study: http://www.dslrf.org/breastcancer/content.asp?L2=2&L3=6&SID=130&CID=1393&PID=0&CATID=0
2383 women were put into the trial.1579 took Femara, 804 did not.
2% (31) of the 1579 women taking letrozole had a recurrence compared with 4.9% (39) of the 804 women who chose to not take the drug. This is the 60 percent reduction noted in the media stories. (A reduction of 4.9% to 2% is a reduction of 60%.)
These numbers do tend to show a trend, but they don't show the whole picture. For example, looking at who was studied and how they came to be in the study is important. The women who were "randomly" assigned initially got to choose whether they wanted to start taking Femara, or take the placebo - This means that these results don't come from a randomized trial.
A higher percentage of women who chose to not start taking Femara also didn't have chemotherapy, which could have been a factor in their local and distant recurrence rates. While the researchers did try to account for these differences in their statistical analysis, it could have influenced the findings.Knowing this...I don't know about you...but out of 2383 women, 31 of the Femara takers got a recurrence, vs. 39 recurrence in those that did not take Femara. The % difference between the 31 in test group 1, and 39 in test group two is 60%... but that does not mean 60% of 2383. It is easy to be persuaded by others when they toss around a number such as, "Well, if you take Femara, you have a 60% less chance of recurrence."... These numbers seem a bit deceiving. I did not investigate this study like I should have - because I bought into my doctors' and peers' enthusiasm.
You will likely not end up with the exteme bone loss that I have suffered. But, the increase in your odds of getting Osteoporosis are just about as high as the non-recurrence of CA benefit you will receive - they are about equal. It's a gamble you are understandably willing to take.
Cancer or Osteoporosis?
Anyone would likely take the risk of Osteoporosis over cancer (and I got it). Now I have to worry about a whole host of new problems...and CA recurrence. Bummer for me.
My grudge is that my Onc should have have a bone density scan done at one year post starting Femara (see Femara website for their recommendation). Having understood the Femara test results, and being aware of the chance of getting Osteoporisis would have alerted me to pushing my Onc. for a bone density test one year after starting (just to make sure my body was handling the Femara okay). If the loss was appreciable at one year, my Onc and I would have talked about choosing to stay on Femara and hoping it did not worsen, or perhaps look at altenatives such as putting me on Tamoxifen (while maybe not as effective as Femara, Tamox is still beneficial to post menopausal women, without such high of a risk for bone loss). You both are new to Femara, so you have a chance to monitor its effect on your bones.
Don't go two years, like I did...and get 2 rib fractures, just 22 months after taking Femara.No woman in my family has Osteoporosis, by the way. The change of -1.8 down to -4.9 after 22 months on Femara is a phenomenal amount (words my doc used). You will likely not realize bone loss after only a handful of months on Femara. My suggestion is the ensure you get an annual bone density scan to ensure your skeleton is safe. I am very athletic, 5'4", 110 lbs...always have been fit and healthy and eat well. I am upping the exercise now...I have to stop the Femara, I have no choice. Maybe Tamoxifen....but I don't know. We'll see what the docs want to do. Hopefully there is no other underlying cause (that is still an option). But, general consensus is that this is a direct cause of Femara.
By the way, I also took 6 Zometa IV treatments in a trial, that finished in 2010. Apparently the Zometa did not do much for me?
I wonder if the Femara/Zometa trial is attempting to acertain if the Zometa can aid in the bone loss Femara users experience? Also, I am a very small statured (small boned) white woman. White/caucasian women who are small boned are particularly suseptible to bone loss on Femara (something else I did not know...hindsight!). If you are not white and/or have larger bones, you will very likely not have my trouble The "good" news is that at 48, assuming there is no other underlying cause, I have a chance of restoring some of this loss. Bones are similar to skin in that they can regenerate.Unfortunately, I won't be able to use Eli Lilly's new Forteo drug as I had radiation therapy... But there are other options for for those of us affected (swimming is a good one!!!). Best of luck!
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Dear Sanaisa,
I am 47-year old also
thin white Caucasian - don't know if my bones are very thin or just normal. Additionally I have celiac (when people can't absorb properly minerals and other nutrients), clinical vitamin K deficiency (also affects negatively my bones), Graves disease (antibodies and medicine are not good for the bones) and my ovaries were removed last summer. I do have many reasons to worry about my bones while taking Femara.Still I will not give up Femara because there is a strong evidence that it is the most effective non-steroidal AI. I haven't got any chemo or irradiation but my RS is 20 and I had micromets in my only limph node that were taken out. Who knows if I had more mets in my other lymph nodes. I am not in a low-risk group for breast cancer recurrence and my hormonal treatment is the only treatment available for me. (My tumor was not sensitive to any chemo based on the test so I didn't have it). I think that every woman should know her estimated risk for recurrence - if it is worth 65% reduction that Femara can give based on the latest trials results ( a few actually).
Diet and exercises - are the must. I am planning to have some training to incorporate weight-lifting exercises into my routine I have in the gym. Honestly I love swimming and hate other "heavy-duty" exercises but you do what you have to do :-).
Also I firmly believe in Zometa - it can help not only for bone density but also to reduce the risk for cancer recurrence. Last week I saw my doctor in Johns Hopkins - she said that they believe that Zometa helps reduce the risk for recurrence for women that fit the Austrian trial (pre-menopausal who got ovarian oblation). If my insurance company doesn't pay for Zometa when the trial is over, I am going to pay myself - even if it would cost me around $1000 per shot.
You said that you got Zometa IV and it didn't help you protect your bones. But you didn't get your cancer back either - which is much more important. Also you don't know what would have been with your bones without Zometa.
So I wouldn't give up Femara because the absolute risk reduction was shown (in one trial) as less than 3% - for somebody like me it could be 100%.
Stay strong - and go to the gym - to lift up some stupid heavy stuff I don't know the names for. I wish you get you bones back!!!
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Thank you, Olga! Interesting that one of the tests included in the battery is for Celiac. We will see. I do have Hypothyroidism (oppostite of yours). My Hypothyroidism was caused by my first pregnancy. My doctor, years ago, believed Hypothyroidism happened to me because, as I am petite, my body went into overdrive trying to metabolize and nourish all that was going on with sustaining two bodies. Hormones are amazing things...there is so little we know, but we are learning more and more about how hormones bring, and take life from us.
I called my Onc after stopping Femara. Asked the nurse to please talk to him and have him call me if he had any concerns. I haven't heard a word from my Onc. Guess that's par for the course, considering the fact I wasn't referred for a bone density scan one year post starting Femara. So here's my dilemma... a -4.9 bone density T-Score means that 49% of my bones is gone. While I hope I can regain some of the loss, how is it possible to sustain more bone loss in taking Femara? I made a joke yesterday to a friend who hugged me...told him not to hug me too hard as if he did, I could end up as jigsaw pieces to have to pick up and stick back together. What good is life if I end up not being able to walk or function? I don't know how much bone loss one can sustain to be able to continue walking, or living, but it's a question I am going to ask. If they think I should continue Femara, and have my bones continue to deteriorate, I need to know what the cut off point is. I understand your rationatlization. Even if 1-10,000 people benefit from taking a drug, if that one person benefits from it, it was 100% for him/her. We just need to be aware of the odds, SE's and how to mitigate uncessary injury to our bodies.
Thank you for wishing I get my bones back...
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hello, again, i am still in a quandry about the femara.........not the same indecision that i had before, but a totally unexpected complication. my gynecologist has been keeping an eye on me because of the possible side effects of tamoxifen, and now she tells me that -- at age 59, and after 8 chemos and no periods for over 5 years --- i am not technically in menopause as my fsh is showing i'm still fertile!!!! so i am not eligible for femara, nor can i stay on tamoxifen!! i took my last one last night, hoorah! my gyn says that she doesn't know what to do with me, that she doesn't usually deal with women my age who aren't in menopause, and my onc nurse says she hasn't run into this before either. am waiting for my onc to get back to me. my estrogen was very high when i was diagnosed (probably helped me get bc in the first place), and i have now had an estrogen test and am waiting for that result. the saga continues........
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Hi everyone, exactly 2 years since I started with Arimidex then changed to Femara (inclusive of a almost 2 month break). Never had as much arthritis as I have now. Yet, there were no problems with my bone density test in Oct. 2011. Just suffering more from arthriic pain in legs and back. I used to dance regularly at Zumba classes, but no more. I also have decreased weight in machines. I have had some issues lately and all the tests show are "arthritic". I have told the docs yes, I am on Femara. One doc was not aware of Femara, just Arimidex. He is a spinal injury guy because my back went out, (it could have been too much Zumba) yet I never had this problem before taking anything. I am also 63. Also, after medial minescus surgery, my knees still bother me. Could it be from the Femara???
Hugs,
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Hi Ronqt1. I had miniscus surgery on both my knees about 12 years ago. They were doing pretty well, though until I started on letrozole. Now they both hurt again - and feel really stiff when I first stand up after sitting for any length of time. I walk at least a mile every day and take glucosamine, and that is helping.
My back has been a problem for years and years. It is definitely worse since starting letrozole, but I think that the regular exercise, walking and glucosamine are helping it as well. At least I'm telling myself that, as not taking the stuff isn't an option as far as I'm concerned. But.... one year down - four to go.
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Quck update...a total of 12 diagnostic tests were run on me, due to the significant bone loss I have experienced since having started Femara (22 months) - I now have only 51% of my pelvis remaining. All tests came back within normal limits (cortisol, hormones, multiple myeloma, celiac, parathyroid disease, etc.) - they ran these tests to be certain that there was no other cause to my now severe osteoporosis. My GP is appalled, I honestly think he's disappointed to find that there appears to be no other cause. He told me that it seems apparent the bone loss is directly related to taking Femara (I stopped the medication one week ago) adding that they don't want me to stop taking it (unfortunate was the term he used), but the harm it is causing seems to outweigh any possible benefit. The remainder of our discussion was very depressing. I am being referred now to a Rheumatologist for further evaluation, to determine if there's anything that can be done to hault further loss, or even, repair. I am pretty frightened. 1/5th of all hip fractures end up with fatality, within one year. About as bad as being diagnosed with cancer? I am 48 years old, did ballet, gymnastics and was training horses, being thrown from them, practicing yoga, scuba diving, riding century bike rides, etc...up until mid 2009 when the BC started. Wow...a tremendous decline.
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Sanaisa- that is frightening! Sorry to hear you now have to deal with this.
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Sanaisa, Wow! I just came across your newest posts. I am white, small-boned and petite as well. My onc told me he didn't want to do another bone density scan until 3 yrs out! I guess I'd better get my butt over to his office and demand another scan, too! This is really scary. Please continue to update. There has got to be something that will help you. I can't believe that you said you did the zometa treatments, too!!!! Wow. I'm currently on those and will be hitting my 2 yr mark on femara this summer. I started out with -1.6 compared to same age females. (I was 38 at the time) I don't do much along the lines of exercising, though--uh oh.
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This is a change of topic but one I have seen before. My onc today approved of a 3 week vacation from femara because of the list of aches and pains I have been experiencing more and more after 18 months on femara. Please tell me that I will have a chance of feeling better because a sil has tickets for us for the Masters in April and I so want to be able to go. After 3 weeks he will evaluate and have a new proposal. I feel lucky to have such an understanding and sympathetic oncologist.
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I took a self-imposed sabattical from Femara from mid Nov '11 to 1-1-12 (I had been on it 2 years when I took my break) ; I feel LOTS better! Don't know why, just know I do.
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My doc says I could stop taking it too for 2 weeks but I'm too afraid to do it. Am I being silly? My aches and pains are tolerable and I guess I'm afraid that when I go back to the pills I might be worse. What do you think?
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my aches & pains were "tolerable" too, but by the time I took my break my pain medication consumption & over-the counter crap had increased significantly. I only take a pain pill maybe once every 10 days or so now. I still do Ibuprofen fairly regularly but it's for other than joint pain.
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So sorry to read this. I know all the AIs cause bone loss, but had no idea they could case such bad bone loss. My bones are at 65 percent which is not that good either. I scheduled a bone density test myself because I hadn't had one in a couple of years. I was concerned about my hip which fractured in 2009. But the tech told me they can't scan the hip because it has 3 pins in it. So I guess the only way they can check to see if that hip is still holding up is to take x-rays? My other hip is in "severe danger of fracture" Since I already had a broken wrist in 2008 and 3 spinal fractures last year I have decided to stop taking the AI. (I take Aromasin, not Femara) to me it is not worth the risk, but I am a lot older than you (76)
PS In my case, all my fractures occured before starting the Aromasin so can't blame them on that. But I am very concerned about future breaks due to the osteoporosis.
Best of luck. It is horrible to have to worry about your bones as well as cancer.
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dogs and jogs, Have you asked your MO about taking a Prolia shot? I have osteoporsis and I am on Aromasin. My MO is having me take the Prolia to help counteract the bone loss from the ALS.
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I just found out my insurance denied any further zometa & probably deny Prolia if I don't have osteoporosis. I was dx 5/11, began lupron & femera 8/11, first zometa was approved 10/11. Now in the new year they denied it. Gotta get some mental strength for one more insurance battle. In the midst of two issues right now!!! Argggg...
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Sanaisa
I really appreciate your thoughful, researched posts. I was young 42 when dxed fit and otherwise very healthy when dxed as well. I had chemo and then Femara after ONC felt I was in chemopause I also suffered bone loss but not to the extent that you did. I had many problems with Femara and after a year went off and just took Zoladex shots to keep my ovaries asleep. (not without side effects as well but does keep estrogen levels to a minimum <10.)
I am a supporter of all drugs that have been proven to minimize recurrance and my stepmom is a 18 year survivor after 7 years of tamox and 5 years of Femara. The only thing I would like to say is take a look at the big picture, most of us are so horribly panicked after dx that we will do anything to prevent recurrance but we have a hard time looking to the future of what all this treatment may do to our bodies in the long run. Bone loss is more common than you think and my hairdresser had the same ammount of loss as you and now 9 years later at age 56 is very limited in her life due bone loss and is dealing with another medical crisis. A large percentage of woman with bc will survive the disease which is great due to the drugs that have been provided but some then go on and have new crisis osteoperosis, heart disease (due to high cholesterol from lack of estrogen). My ONC actually wants me to go off hormonals at 5 years as he feels my risk of heart disease from lack of estrogen that in turns drives up my cholesterol will be more of a real risk than recurrance after 5 years. Just some thoughts (not against anti - hormonals at all) just a big picture view!
Sanaisa I am not sure if yoga interests you but after my bone loss I took up hot yoga "bikrim" and after one year I repeated my DEXA and had significant improvement I was also off the Femare that year and on NO bone builders. Just a suggestion that oviously must be cleared through your MO.
Good luck to you, did they also check your vitamin D level recently?
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I haven't posted on this Femara thread for a while, either.
My previous post concerned cataracts, but I have also experienced trigger ring fingers and a trigger thumb. So far, cortisone injections have helped.
Writing tonight, tho, about facial hair. I was trying to look closely, but it's difficult with and without my glasses, but my goodness, there's a considerable amount -- down around my jaw line and fine hairs on my chin.
It's hard to know if this is Femara's doing or being post-menopausal. But I'm definitely getting furry. I don't know what to do and actually a little embarrassed.
Take care.
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I haven't posted on this Femara thread for awhile, either.
My previous post concerned cataracts, but I have also experienced trigger ring fingers and a trigger thumb. So far, cortisone injections have helped.
Writing tonight, tho, about facial hair. I was trying to look closely, but it's difficult with and without my glasses, but my goodness, there's a considerable amount -- down around my jaw line and fine hairs on my chin.
It's hard to know if this is Femara's doing or being post-menopausal. But I'm definitely getting furry. I don't know what to do and am actually a little embarrassed.
Take care.
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Hi; regarding questions of vacation from meds.
I took a 2 month vacation from Arimidex, felt great immediately, switched to Femara and had to stay off for 2 weeks. For me Arimidex was the killer and am glad to be on Femara. 3 more years to go.
Hugs.
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mollydog - some facial hair (yucky) is a family trait for me and I started long before menopause - it's just getting worse...
Anyway, I use wax to remove mine. It's a pain in the patootie, but it works, and I don't have to do it too often. -
Gardengumby, you don't find the hairs grow back more coarse or darker, anything like that? Thanks for the suggestion.
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My onc wants me to switch from tamoxifen after 1 year of no periods to femara. Any thoughts about a 'wash out' period between the two drugs? She said to finish the tamoxifen and then start the femara but I was wondering if I should wait a couple weeks between stopping the tam and starting the femara.
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No, the hair just seems the same - unfortunately, it does grow back, but no different than it was pre-waxing.
Omaz - I went from tamox to femara, but had a couple months between. four more years, then no more drugs!!!! Seems like forever, but man am I ever looking forward to it!
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garden - You did a couple month between? Did your onc suggest it or on your own? I have read that it takes a while for the tam to get 'out of the system'.
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What time of day is best to take Femara? I was wondering if I took it before bed perhaps I could be asleep during the worst of the stiffness.
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That is exactly why I take it at bedtime and it worked for me.
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It doesn't matter what time of day you take it as long as you take it at about the same time everyday. Taking it at night seems to solve a lot of the problems that it can cause. I also take mine at night.
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Mine is just before bed ingestion. Works much better that way for me!
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does anyone have muscle/ligament pain from letrozole, or just joint pain? I've got some pretty good pain going in my left thigh, which has been getting worse over the last 2 months - I've assumed letrozole, but thought I'd check with y'all to see if that seems unlikely - in which case I'll get myself to my doc (which I truly hate the thought of... )
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I take mine first thing in the morning when I get up. It seemed to make me have trouble falling asleep. I have mild aches and pains but nothing very bad. I'm just chalking it up to getting older, rofl!
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Gardengumby, I had an achiness in my left leg, not exactly my thigh but above my knee. It concerned me, but it has passed. My understanding is that any persistent or worsening pain should be looked at, so please call your onc.
Anyone concerned about what happens after the five years??? Some studies shown better outcomes when women have continued with anti-estrogen meds beyond the five year time frame.
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I have been on generic Letrozole (gold colored ones) for about 5 months , and have noticed no new side effects .. and in fact I have been NED since Jan5th.......... I take mine in the am...
everyone is different but I certainly do LOVE paying only 5.00 a month for the script and do not feel I have done any harm to my treatment . My doc actually recommended it ..
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Gardengumby if your pain has been there for a couple of months and seems to be getting worse please go to the doc and get it checked out. Most Letrozole pain no matter where it is usually either goes completely or lessens over time but not increases. I think it's time to see exactly what is going on.
Good luck!!! Please let us know the result and know that we are all here for you.
Love n hugs. Chrissy
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Hi Ladies, haven't posted in a while but I went for my 6 month check & was told I now have osteoporosis, cancer just keeps on giving! They are now looking into treatment for the new "side effect". My husband and I talked last night and we have pretty much decided that I will stop taking letrozole and forget about the bone building treatments, although I will talk to my onc first. I have hated taking the AI since I began but have persevered. My husband has already had two hip replacement surgeries even though he is still in his 40s so we know what inconvenience, pain etc bone issues can cause and I don't think I want to lose any more quality of life than I have to. It's four years since my diagnosis, treatment etc and I have had enough. I don't know if anyone else feels the same but I feel when I take the letroxozole that it affects my moods, sleep, and overall feeling of well being and after 3 years of this I believe now is the time to say no more. I admire all you ladies who will continue to battle this with whatever the medical profession has to throw at it but for me I had my ovaries removed after chemo & radiation and I think I have put my body through enough. I'm not sure my oncologist will agree but for the first time I am ready to admit to her that this is the end of AIs for me.
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It has been a long, long while since I have posted on this thread, but have been trying to quickly read through to catch up. Femara was my ONC's first choice for me which I took for several months before MEDCO started sending me the generic. Within two months of the generic, my hands became so crippled that I could not open a door, a jar, or anything else. ONC switched me to generic Aromasin which didn't produce any side effects for about two months and then, WHAM, my knees went stiff and the sight of stairs made me cringe. Tooo painful to even think about it and we live in a house full of stairs that I was going up and down on my butt! So, my ONC appealed to MEDCO to put me back on the real stuff, FEMARA, no generic. So, I have been back on that now for two months with no problems at all. It was absolutley amazing on quickly the knee joints recovered... maybe two days at most. I am hoping that I will continue to do well on the real Femara.
The kicker is.... my DEXA this past February showed my hip bones to be -2.4. I was told that osteoporosis is -2.5. Yikes! So my ONC gave me some homework to study up on bone treatment which will be the big discussion at my next appt in May.
The other kicker.... I have back surgery in my future (spinal fusion) due to 3 herniated discs. They need to graft some bone for the surgery. Guess what... they normally take it from your hip. And the plot thickens.
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If there is bone loss on the femara can you go 'back' to tamoxifen?
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Hi ladies, I just finished rads and will be starting femara in April. My onco never even mentioned having a baseline bone density scan. After reading a few pages here and on femara website, it looks to me like this should be done. Did you guys get a baseline done?
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Mollydog, Is that a border collie in your avatar? That's my favorite breed of dog, next to the one I have now, which is a miniature dachshund.
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Grandma V-I did.
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Grandma V - I did too.
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Thanks Eph3_12 and Joan, guess I'll be calling my onco Monday to see about getting one.
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I did too. Just had my second one done last week....anxious to see what change has occurred in just over 2 years on Femara.
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GrandmaV, no, not a Border Collie. Just a beautiful mix. She may very well have had some Border Collie in her, tho.
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Molly, She is beautiful.
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I had a dexascan right before going on Femara and then another two years later. It showed minimal bone loss. I'm hoping I can do another two years with the same results using the generic. I do take lots of calcium and use weights at least once a week. Also when I do step aerobics I put a light weight on my ankles.
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dkerler, thank you, may I ask what kind of calcium you take?
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Yeah, I had a bone scan before starting femara as well.
Monty, I totally can relate to your thinking about stopping the femara after 4 years! I hate it too! I noticed that your are HER2+ as well as being ER+. I've read a few times on this board that some oncs believe that the HER2 part trumps the ER part, so that if you have not had a recurrance at the 3 yr mark, you are probably safe to stop the AI's as well. This is not my opinion necessarily--I have just seen it on these boards and I'm wondering if anyone else has heard or seen anything else with similar thinking (or something that would contradict it) as well??? What did your onc tell you about stopping at 4 yrs? Did he seem to think that one extra year would make that much of a difference?
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Grandma V, I take a Centrum Silver for women and 2 Viactiv Chews a day.
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In regards to my thigh pain - it apparently is related to a herniated disk in my lower back. We have an inverter (hang upside down by your feet) and once I started doing that daily for 15-30 mins, my pain has reduced markedly. (Thank-you God!)
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Hello everyone - I am a Femara newbie, and wondering about muscle pain too (sorry about your back, Gardengumby - ouch!). My arms especially feel like I had a very hard workout at the gym, except I didn't. I do have an appointment this week w my Onc for the first time since starting Femara (about 3 weeks ago) and will of course ask about this, but curious to know if others have experienced this and if it is a cause for concern...
Tamoxifen caused big problems for me, no choice but to quit and try a different treatmet approach, Since I am young, I am also having monthly Lupron shots, and planning to go ahead and have an oopherectomy rather than ~20 more years of Lupron. Anyone else here in a similar boat? Would love to connect with anyone who is.
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Cowgirl- I'm older than you, but getting shots every 3 months and taking femera. I was premenopausal at 51, very regular periods, this was the route we did. I've been on femera since Sept '11. I had trouble with disturbed sleep initially and joint dicomfort. Sleeping is a bit better now and still with some joint pain. I've started some supplements recently and exercise does help. Good luck!
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I've been on letrozole (generic Femara) since January. I am 45 and had a DaVinci (robotic laparoscopic) Bilateral Salpingo-Oophorectomoy (sic?). I already started getting hot flashes from chemo-pause. I didn't notice them get any worse, or better, from the ovaries removal nor the letrozole.
I can't readily attribute any SEs directly to letrozole. I started taking them while recovering from surgery (the ooph was in November and had a Uni NSM with implant recon in December) and while undergoing Radiation treatment that just ended last week. So my achy legs (which feel better with movement) and hot flashes could be attributable to many of the above. Those are my only current SEs....other than the whole Radiation peely, bruisey thing.
Cowgirl: the Ooph was a pretty simple procedure for me. I was couch bound for a few days. That was it for me. I have three small scars...about and inch long each. One in my belly button (that one is about a half an inch) and one on each side about my pelvic/hip bone. -
I am starting Tamoxifen tomorrow. In 2010 I started on Femara and within 6 months had surgery for a torn meniscus and arthritis in my right knee (I was diagnosed with arthritis in my knees in my 20's, in 2010 I was 52, I also had surgery for carpal tunnel which had become so bad I could barely write. My Dr argree to d/c the Femara and changed me to Aromaasin. I started taking the Aromasin in January of 2011, luckily I had no problems. In June 2011 I was diagnosed with bladder cancer, had my left kidney removed, went through chemo from August to December of 2011. In January of 2012 I started the Aromasin again and to my shock started having side effects within a week or so. Terrible joint pain in all of my joints (especially my knees, elbows, shoulders and hands), my bad right knee was just excruiating. Talked to my Dr and am starting the Tamoxifen tomorrow. I am disappointed that the Aromasin caused me problems the second time around and wonder if it could be because of the intervening chemo. I also have a mass on my right adrenal gland, it has been biopsied as benign, the drs are watching it and there is disagreement as to whether or not it is a pheo or not. My calcium levels have been elevated for several months, a bone scan in December 2011 was normal, but needless to say I wonder about how it figures into the problems I have had, it is producing large amounts of adrenaline. This journey is an interesting one, and everyday has new challenges. Blessings to you all! Megan
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Grandma, yes, I am supposed to start femara and my doc ordered a bone density scan (which scares me no end). He won't tell me what is involved and I am really afraid. Does anyone know if you can ask to be put under for it?
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Another question: How many people have weight gain? I finally lost the extra weight and I would so hate to put it back on.
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Momine, please do not worry another minute more about the bone density scan. It could not be less invasive. You lay on a table with a little apparatus under one knee. That's it. Oh, and you do change into a gown. It's very quick. And you do not need drugs. Take care.
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Molly, seriously? They do not have to take a sample of your bone? If so, thank you so much.
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Oh, no, absolutely not. You may want to read a little about the bone density scan on the Internet -- you might find it reassuring. But basically, the scan looks at the condition of our bones and determines if there is osteopenia or osteoporosis occurring. It's important to get a baseline if you're going to begin Femara or another anti-estrogen medication.
And thank you, GrandmaV, for the nice compliment about my Molly.
Take care all.
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Molly, thanks so much. You have saved me a good week of terror. I was too afraid of looking it up. Doc said it was nothing, but I thought he was just fibbing to reassure me. So many things they claim are nothing are a big deal to me.
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I just had a bone density scan last week Momine and it took about five minutes. No pain involved! I didn't even have to change into a gown since I was wearing pants that didn't have a zipper. Easiest test I've had done in this whole mess!
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Thanks Barb! I was afraid they would drill into my bones. I asked if it involved needles and my doc said no, but with this weird smile, so I figured it was worse than needles.
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Good afternoon
My PCP did a bone density test on me a couple of years ago, so the MO is using that as a base.
Joan,
I have had 4 back surgeies, 2 of them fusions in lumbar area, (done in early 1980's). They actually take the bone graft from the top of the Iliac crest (bone above the butt cheek area) I have about a 4" scar on each side from the donor site. Good luck!!!
Vickie
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Momine, the bone density scan has been hands down the easiest part of my treatment so far. As Mollydog described, it is non-invansive and quick. When I had mine done, I was like, "that's it???? I drove here for this?" Literally that fast and that easy. Hope this helps.
Also, I have actually lost weight since starting Femara...But watching my diet very carefully.
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Cowgirl, thanks for the info. I hope to maintain my current weight, and it is nice to know that it can be done.
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Just want to add my 2 cents about the DEXA scan. That is such a non-event. I am not sure it even took 5 minutes. But it does provide some very good info.
I lost about 3 poumds within a few days of switching from Aromasin back to Femara. Only about 10 more pounds left to go that just will not come off no matter what. I have not been able to be as active as I was before BC due to back issues and cellulitis infections. Always something. My back surgery just got postponed indefinitely because of a serious cellulitis infection on my radiated breast. Next up is lat flap surgery to bring in some healthy tissue from my back. April 11th. Wil it ever end?
I will try to focus on the fact that I wil celebrate 2 years cancer free next year. I would like to think that Femara has something to do with that. After being back on it for the past 8 weeks, I do not seem to have any side effects going yet. Possibly my anti-inflammatory and pain med from my orthopedic surgeon could be masking some symptoms though. -
Hi Ladies,
Well, my onc has agreed I can stop the letrozole and continue taking the vitamin D and calcium & my bone density should hopefully sort its self out! Yippee. I know for some of you this may seem an illogical choice to make but for me it feels right. I will continue to have my check ups for BC as before and hope that it does not come back, there were no guarantees with the Letrozle anyway so I would rather feel like a normal person again and take my chances. I discussed my idea with close family and friends before approaching the onc and they were all in agreement with my decision otherwise I may have reconsidered. Here's hoping that the dreaded C stays away, forever a distant memory that I would rather try and put behind me.
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congrats--- I am reaching the 3 year mark on femara and lupron and may try to negotiate for a "vacation"... my se's are not terrible, but boy I would love to lose this fuzziness in my head!!! Not sure if it is the femara or the lupron. We think I can stop lupron in the fall at the latest-- and I am going to try to make it 4 years on femara--- my onc says off for sure in 2014..... not sure I can wait!!let us know how you feel-we can live vicariously through you!!!!!
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Hi ladies,
I'm Joan811 (my diagnosis month/year) and I see Joan888 - Hi!
I had a question and don't have time to go too far back on the threads...
I was on Arimidex...then had unacceptable SE (chest/vasospasms)...switched after rads in February to Femara.
I still have leftover joint pain from Arimidex but not quite so bad now.
momand2kids - I just read your post and my #1 complaint about Femara is the cognitive impairment better known as fuzzy head. Did you have this from the start on Femara?
I have more emotionally down days on Femara. But the worst is that I don't multi-task very well and my thoughts and plans need to be much more linear - doing only one thing at a time. Sometimes I look at a no-brainer problem like packing and mailing a package and I just don't know where to start.
My MO told me that my thumb, shoulder and elbow pain that started on Arimidex could not be from that drug since I'm not taking it. I disagree.
I just had a wellness visit with a NP and she told me that Femara does not typically cause cognitive impairment. I disagree.
I'd like to hear from anyone who has fuzzy brain.
Thanks,
Joan811 -
I too have a fuzzy brain but I'm not sure what it is from. I did have chemo in 09 and since then I've noticed that I can't remember things like I used to. I've been on Femara since 6/09 and not until just lately was I able to read a novel. I couldn't remember what I read going back to the book after one day. Now it seems that it is getting better however I still do dumb things. On Monday I was going to my Zumba class which I've been doing for quite a while and when I got there I realized that I was one hour late and missed the whole class.
I guess I won't know what is causing my fuzzy brain until I stop taking Femara in 2014. If it continues after that I'll blame it on the chemo but my husband says that I'm just showing my age.
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I have the fuzzy brain thing going on, too. It's hard to explain, but it is like at times I'm not quite all there--it's almost like I'm an outsider looking in at things. It's kind of a sleepy feeling, but more groggy-like. Anyone else want to try to explain it?
Momand2kids, I'm a bit behind you--wont reach the 3 yr mark on femara till next winter--but sure am hoping that onc will let me go off at the 5 yr mark. I guess now they are saying that with young women, staying on even longer might be in order? I was only weakly ER+, so it sure sucks.
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About the fuzzy brain, I read somewhere recently that in investigating so-called chemo brain, one team had found that women who had breast cancer reported cognitive problems long after chemo had worn off or even if they never had chemo, leading the researchers to suspect that the cancer itself may lead to fuzzy brains. Lovely, huh? I am sorry I don't have a link, can't remember where I saw it.
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Hi All,
I'm new to this and am jumping in. I've been on Femara (Letrozole) for 7 months now and am progressively getting bone and muscle pain. The fuzzy brain thing has gone away now, but I certainly had it while on Chemo. I did not do radiation as that causes MORE cancer in the future and I've had enough with this. My onco was surprised the last time I was in that my cancer did not come back, because it had spread so severely to my lungs and bones, but the chemo (of which I refused for many months til I was almost dead!) actually whiped it out and the Femara therapy is WORKING to keep it from coming back. I guess I'll just have to deal with the bone pain. I take supplements (calcium, l-lisene, D3 etc) and walk at least a mile every single day. I'm 61 in a few weeks.
Does anyone out there have muscle pain (severe) after exercise i.e. raking yard, lifting heavy things?
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The muscles in my arms seem to be the most affected. They get sore really easily.
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Momine, this might be the article you're thinking of:
http://www.nytimes.com/2010/10/12/health/research/12mental.html?_r=1&ref=healthI remember reading that, about 6 months before I was diagnosed. Little did I know I would be experiencing it myself!
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Momine- thanks for sharing; very interesting theory.
I have the fuzzy brain and did not do chemo or radiation but have not slept much at all in about 10 months and think the fuzziness might be from that and the Femara. I cannot concentrate to read a book and that was my favorite thing to do. I also have terrible joint and muscle pain especially if I sit still or ride in a car for more than 20 minutes. I am like a creaky 90 year old and I am 48. I have only been on Femara for 3 months so this could be a long 5 years!
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Well Ladies,
Looks like I'm back here again, after further consideration my onc has called me to say I have tocontinue with the Letrozole after all. They have looked over my notes & decided that due to the aggressive nature of my cancer I must continue to take the dreaded L - and now I will receive xgeva shots for the osteoporosis. Whilst I am disappointed at having to take the Letrozole I do appreciate my oncologist's views and therefore I will start taking the meds again from today. I do have to say that for the short time I have been off the med I have felt so much better in many ways but when the onc says "I don't want to be seeing you in 9 months time and the disease has returned" I can take her advice, after all she's the expert not me. It was quite a rude awakening from my dream that the cancer might never return which I guess I had begun to believe for the first time since my diagnosis. It had taken 4 years to get to the point of not thinking about it returning every day but I guess that perhaps I had lulled myself into a false sense of security.
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Jumping in here. I've been on femera since Sept '11. I started supplements in February & now about 8 weeks later am feeling relief from the joint & muscle aches. They are not gone, I still am creeky when getting up, but over all much better. I have been walking, treadmill, bike riding & some yoga & light weight training. I find that after I get going I am much better. I didn't do chem & have some of mthe fuzzy brain. I have 41/2 years left to take this, I hope these supplements keep the aches at bay. Good luck to all!
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tenaj - What supplements are helping? Creeky is exactly how I describe it too!
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I didn't do chemo, either. I take a number of supplements which help the aches:
2000 mg curcumin phytosome
1000 mg ginger
1500 mg glucosamin sulfate
1/2 T cod liver oil daily
500 mg quercetin
For awhile I also took cinnamon, but it contributed to constipation (badly) and I was already having enough trouble with that, so I quit the cinnamon.
I walk at least a mile daily as well, and do stretching (yoga), and light weights. The aches are pretty manageable most of the time.
I've been on femara for 5 months. My nails are brittle and break easily, my hair is dry and fairly lifeless. It breaks easily as well. I use very good shampoo and conditioner. None of the supplements I'm currently taking seem to help with my hair and nail issues. Does anyone have any suggestions?
Also, I'm much more emotional since being on the femara - it's possible that's simply a side-effect of this whole cancer process, but it didn't seem like I cried nearly so much when taking tamoxifen, so I'm blaming it on the femara/letrozole. (I'm not really on femara - but rather the generic letrozole (by cara))
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I take calcium with magnesium, vit D3, vit E, fish oil, glucosamine with chondroitin, biotin, multivitamin & vit C.
I also find that I stopped loosing hair like I was, which is why I started the biotin.
Good luck!! -
The emotional side to all of this is the lack of estrogen which is what the Femara is supposed to do so yes, indirectly the Femara does cause us to be more emotional.
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Well, I'm glad I clicked on this site today. I'm on Letrozole/Femara and have one year and one month to go. For everyone with the questions on brain fuzz...i think we can blame all treatments we have had. I've always had the joint pains, however since a couple of days ago I have had severe shoulder pain. It seems like Rotater cup pain but don't know since I've never had this problem. Right now I have ice on it. I did some garden work yesterday but didn't rake. I didn't lift anything heavier that I usually do.I've also got an ache in my lumpectomy scar.Maybe I stretched to much I don't know but I'm tired of feeling like this. I can't wait to get off this drug because I feel like some of you. Old before my time.Have any of you dealt with tenderness or sensitivity in the scar area?Also as someone else was saying about car driving, I just got back from 11 hours of driving per 3 days. I wondered if that screwed with my joints. It's pretty stressful especially when you have to drive 75 miles an hour through big cities. Ugh.
Monty...I'm a little confused. Are you saying your cancer did return? I didn't understand that and the Dr. visits in 9 months.
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I am planning to take my first dose of letrozole tomorrow. Just finished a year of tamoxifen. wish me luck!
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I have been on generic Femara for 7 months now and have had zero physical side effects. I have fuzzy brain but do not know if that is chemo induced or from the Femara or from the mental and emotional overload of all of Cancer Land. I am pretty sure my emotional state is not worse since starting the Femara. That got shot to Hell during chemo. I am thinking fuzzy brain may be more Femara.
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Good luck Omaz! I've been on femara a whole two weeks...hehe...
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Good luck girls, I've been on Femara for 18 months now with few if any SE's just a couple that came and went very quickly.
Love n hugs. Chrissy
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Thanks LovesChristmas-Barb!! Down the hatch today!
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tenaj, thanks for the suggestion. I'll get some Biotin and add that to my repertoire.
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the brain fuzziness is the thing that makes me the most crazy. Whoever said it is like watching your life from afar is so right....I am so amazed at what I forget--- it is my short term memory that is fuzzy--- I just don't seem to have that laser like focus I used to have-- sigh.....
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Yeah, the short term memory is what I notice, too. I can't hold things in my head for even a few seconds sometimes. I notice it most when I'm watching my son's baseball games. I seriously cannot remember what the last batter did, or how he got on base, or how many outs there are. It is really weird. It is almost like I missed it--but I know I didn't!!!
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Ok...Now that we've established the fuzzy brain is affecting many of us, anyone here who has gone through their whole course of Femara and can tell us if the fuzzy brain goes away after? And if so, how long it takes?
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I am late to this party! I wanted to make it for the full 5 years, but I stopped taking Femara 1 week ago. (what was I talking about.....oh yeah, Femara) Did someone say fuzzy brain? I have always been in charge of my life, and now my life runs me. I have the memory loss and severe joint pain, along with practically every other symptom noted in this forum. I have stayed on this drug for just about 3 years and am literally overwhelmed, especially this past year. Things have really taken a turn for the worse with every sympton and I am only 48 but feeling more like 98. So I stopped. Called my onc and told him I was taking a 30 day vacation from this drug, and we can discuss it further at my next appt. Today, I felt slightly better, but after reading many posts, I see that it may or may not take a while for symptons to subside. I worry about recurrence since I had a stage 3 IDC with positive nodes. Don't know at this point which is gonna kill me first, cancer or heart attack/stroke. Now, where was I?? Oh, fuzzy brain. I will get back to you if/when mine gets better. Wish I could forget about the pain for a while!
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Also wondering if anyone here is on Neurontin (Gabapentin) and if it has helped your pain, especially leg pain. Getting my dose upped totally changed my pain level, and the few times I have missed a dose suddenly the pain returns, so I believe without a doubt it is the Neurontin that is helping. However, my body has been through SO much that I have no idea what the leg pain is from - Taxol, Tamoxifen, Femara - any one of a zillion other things...If you are experiencing this same leg pain - horrid shooting pain from hip to knee - you might ask your Onc about Neurontin. It has been a godsend for me.
Although I must warn that friends have told me Neurontin caused them fuzzy brain...I was on it years before cancer for seizures, and never had fuzzy brain from it myself back then. -
Has anyone hands get numb. Mine just do at night it wakes me up. I use the hand braces for carpel tunnel but, they still get numb l
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bluecowgirl - I have that pain from knee to hip - mostly centered in the hip joint. I can't walk up stairs anymore because it just hurts too damn much. I've been taking curcumin and glocosamine which helps some. I'm seeing my onc today, so if I remember
I'll ask. Thanks for the tip. -
wow....fuzzy brain anonymous is born.....I do the most ridiculous things....forgetting everything....
I do think I am getting used to it....it is most difficult at work. At home, I become impatient with others and myself...joint pain is very bearable but persistent. shoulder, arm, elbow, knee.....yup, feeling older -
Nanna-I have the numb hands when I am sleeping. Can't turn off alarm in the morning till they wake up. I also have terrible joint pain, swelling and trouble sleeping. My legs are so painful. I also feel like I am 90 not 48.
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Ginger, yeah that's me. 39 going on 80. The insomnia thing is obvious, seeing as I'm posting this at 1:15 am with no sleep in sight...And the legs? Yeah, I get it. And I'm so sorry so many of my sisters here are going through it.
Joan, re: the memory thing. I have also had a stoke which has affected this, but I feel your frustration. For me, it's totally losing my train of thought, being in the middle of an intense and intellingent conversation and totally forgetting what's going on, not remembering words or even names of people I've known my whole life.
Nanna: I had the numb hands thing for so long and it has passed. Mine was due to chemo I am sure...can't remember if you had it or what kind. Hope so much that yours passes too.
Gardengumby, curious to know if you asked your onc about Neurontin and what s/he said.
So many of us have been through so much, and so many of us so much more then me, I know...the chemo, the drugs, the SEs, the cancer itself...Sometimes I think it's a miracle I can function at all. I know one thing for sure: I TOTALLY don't take anything for granted anymore, from the littlest gifts to the biggies, it is all worth more somehow. The good stuff, I mean.
Love and peace to you all.
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Gosh, reading all this posts makes me sad that we have to live like this. But then we should be
thankful that we are still living. I keep telling myself 'breath' and then I keep counting down to the light at the end of the tunnel.
Hang in there.....keep your fingers crossed...it's mammo day.Ugh!
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bluecowgirl - I got so caught up in her allaying my fears about possible mets in my lungs (don't have 'em) that I completely forgot about dealing with the pain in my leg. Today I really wish I would have, as I am HURTING!!!
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I got newer drug information/side effects list from Costco yesterday and finally diarrhea is higher on the list (which has been my main effect after 9 months) but it did get better since they switched me from Mylan (pink) to Sun manufacturer (gold) 3 months ago so I do think that the fillers can be a problem for individuals! Now I've been experiencing more aches in my knees and hips lately... so wondering if it's a trade-off of problems. Has anyone else experienced similar issues with the new pills?
I only have a discount on drugs, no prescription coverage so thankfully at Costco it costs me $3.22 per month but on my insurance statement it's over $500.00! WTF? If I were to get it anywhere else it would be over $300 out of pocket. Hmm... thinking I'm going to contact the media about this.
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Sea, your insurance pays 500 for a drug that costs 3.22?
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Momine, apparently that's what they show as a charge to the ins. co. but the "discount" they give brings it down to $3.22. No other drug store/pharmacy I've found can match that. But... why not? The Costco Pharmacist told me they mark up strictly by a % on all drugs. So why is it so expensive elsewhere is what I want to know!!
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Weird, and it sounds like a scam. No wonder insurance is so expensive. Unless the 3.22 is only your co-pay.
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SeaShelly - I have pain in my hips and knees. I take a gold colored pill, but thought the manufacturer was Cara. I also get mine at Costco. If I use my insurance I can only get a 1 month supply - which costs me $10 (co-pay). If I pay myself (which I do) I can get a 3 month supply for $32 or $34.00 (I can't remember which). It's worth the extra few dollars to not have to fuss with it as often. But I've never gotten it for $3.22.....
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about 95% of any prescribed medication is the 'active' ingredient - the rest is the filler which holds it together and that is what some of you are reacting to when you see a difference in the brand of femara you use. some of the fillers contain, among other things - sugar, wheat, flour, egg....so if you have any allergies - these must be taken into consideration. The % of the drug that is the active ingredient is set by the FDA in the US and can't be changed in any way for the company to still have license to make and dispense the drug.
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I too take the gold colored letrozole pill. I understand that it retails for $1,500.00 a month, Walmart is still almost $500.00 a month. I get it thru my MO at the cancer center for $20.00 a month. Have been having some achiness, fuzzy thinking for the past couple of weeks (have been on med since Nov. 21, 2011. After reading the above postings, I wonder if this might be a SE of the Letrozole,
I have my first followup diagnostic mammo next Tuesday and see the RO Thurs. I am a bit apprehensive, will be glad to get the report!!!.
Have a good weekend all...
Vickie
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I don't quite understand this, but I am not charged anything for my letrazole, I've only been on it for 2 months, but both times I've gone to pick it up, they said the charge was $0. Yet everyone here is saying it's so expensive. Usually I have at least a $10 co-pay. Weird. I guess I shouldn't look a gift horse in the mouth.
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Mary- mine has been free too. I am not questioning it.
Just a girl-how do we find out what is in the filler? I take the pink letrozole but can not have gluten, dairy or eggs. I am having intestinal issues along with joint pain and fuzzy brain. -
Ginger - if it is not included on a printout inside your prescription, ask the pharmacist for it. Again, by law (FDA in the US) the company which makes your brand of drug must disclose all ingredients, and that includes the fillers. If it says may include, nuts, eggs, etc and the key word being 'may' you can write directly to the company and inquire.
I do think this is why some of us have side effects or worse side effects on some brands of Femara /letrozole than others.
Again, after reading many of the posts here over time, a repeating side effect seems to be joint pain/aches and a fuzzy brain. We, as women are used to having some level of estrogen in our bodies all of our life, that is until we started taking Femara, which is designed to take the estrogen out of our bodies as we have had the type of breast cancer which likes to grow/feed/blossom with the nutrient estrogen.
Take the estrogen away and all sorts of things go wacky. When I get tired or mad about the side effects I have, I try and remember I'm also starving any potential bc cells in my body.
Also, and this is only my thinking: BC really takes us on a wild ride, taking every essence we have of strength, patience and mind, and with having to deal with all the junk that comes with having or having had BC, no wonder our brains are fuzzy with the overload.
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Justagirl - the wild ride is exactly right! I had NO idea what I was signing up for.
Not too stray too far from topic here, but I think if more people knew exactly how much it sucked, even in the earliest stages, they woud be better about getting routine exams, mammos, etc. I don't think the current approach is working re: awareness. I didn't feel anything, nor did my doctors during exams while my tumor grew for an estimated decade. "Too young" for mammo. If I had only known...I think there is a need for a "scare tactic" style awareness campaign...Or maybe I am just crazy from Prednisone and will re-read this post tomorrow and scratch my head...But I think not. -
Also - posted this elsewhere, but wondering who on Femara has experienced this. I was premenopausal, tamox didn't work out for me, now Lumpron and Femara, planning ooph. I have been bleeding vaginally for 3 days now and docs are saying ultrasound and endometrial/uterine biopsies. Anyone here been through this before? It seems like a strong doc response to a little bleeding IMO, but maybe better safe than sorry?
Gardengumby - So glad to hear you don't have lung mets, but sorry you didn't have a chance to ask about Neurontin. May even be worth making an extra appointment if your pain is really bad. Like I said, it has totally changed my QOL. Best wishes to you (and everyone else here too) for pain relief - that leg thing truly sucks! -
Justagirl- I think you are right about the lack of estrogen and the toll stress takes on us. I just keep telling myself at least I know it is working and I am alive!
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I prefer Femara to Arimidex any day.
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Two years into my BC journey I had a uterine biopsy after mentioning I had a little spotting several times. I think the doctors don't want us to take any chances having had BC. Also had an ultrasound. Everything turned out fine and it was a relief to know this.
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ronqt - Do you feel better on the femara?
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Omaz,
How are you doing on it? I know we started pretty much the same day...lol
I can already tell a difference. The hot flashes, which I mentioned before, are more intense and frequent.
Weird thing about the joints. On Tamox, my left knee and elbow were constantly sore. On 1-10 pain scale I'd say they stayed at 5-6 until I used them then 7-8. I couldn't reach out and pick up a cup of coffee with my left arm from a seated position when the elbow joint takes the weight..without serious sharp pain. And my left is "runners knee" from the thousands of miles I logged over the decades. If I run or walk too much on an incline, the next day my knee is killing...
Onc said I may have MORE joint issues on Femara. So, just within 4 days of taking it..my left elbow isn't as sore. But I've noticed all the other high use joints, knees, elbows, FINGERS are stiffer. Haven't decided which I prefer yet. Stiffness isn't pain....but I feel OLD when I get up off the couch...lol
How bout you? Anything?
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I'm on Femara almost three weeks after switching from Arimidex. My hot flashes and depression have decreased but my joint and muscle pain have increased, especially my legs, hips, knees, hands, shoulders, and upper arms. I feel old when I get up off the couch too....I laugh because for a few minutes I waddle like my poor grandmother used to do all the time.
I did get a wrist splint for my right hand that I wear to bed at night and it does seem to be helping the numbness and tingling a bit. I think back to a year ago when I was first being diagnosed and never dreamed that I woud have all of these issues a year later. I had no clue then what all the BC women went through on these meds.
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Hi TonLee - I have been having hot flashes like crazy since chemo so the change that I do notice is that they seem a little more intense, ie more red face going on. My favorite is at work, I am talking to one of the guys and boom, suddenly my race is red and covered in sweat. I have to mop it. Sheesh! I don't think i had much estrogen left after chemopause, my two measurements were 5 and 11. I don't know about the joint thing yet. My right elbow and left knee hurt as well as my feet. I am thinking they will get better, hanging on to hope, really really....... We went to a 90th birthday part recently and I was watching how she moved - yep, I move like that sometimes now.
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LovesChrist,
That makes two of us. I didn't know ANYTHING about BC. Nadda. It's a whole new world....lol
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Hi
I've been on femara for three and a half years now. Yes I have the fuzzy brain and I did have painful joints in the early days, but it beats the alternative.
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Dkerler, glad to hear everything turned out well for you, and fingers crossed it is the same for me...Thank you for sharing your experience and helping to ease my mind.
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I just had a dex scan and have been told I should start taking Fosamax. I have read a lot about it and have talked with another doctor also. She agreed that I should take it. I already take vitamins, 1200 mg. calcium, 800 mg. Vitami D along with the femara. Has anyone else been taking Fosamax?
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you can find a coupon on the femara online sight(or Novartis sight) and it will pay around $800.00 for a year toward your prescription.
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Re the cost the Femara. It is approximately $500.00 for a 30 day supply, Letrozole is it in generic form and it's $15.00 for a 30 day supply. If you have insurance drug coverage unless your doctor specifies "do not substitute" on your prescription you will get the generic. I found this out when the Letrozole became available as I was used to getting Femara and the pharmacy told me once a drug becomes generic everyone gets switched unless they have that "do not substitute" on the prescription. I was started out on the mustard colored one but now I'm getting the pink one (Mylan is the manufacturer) and I do much better on that one.
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Here are the ingrediants for the Mylan pink letrozole tablets: Each tablet contains the following inactive ingredients: colloidal silicon dioxide, D&C Red No. 27 Aluminum Lake, FD&C Blue No. 2 Aluminum Lake, FD&C Red No. 40 Aluminum Lake, hypromellose, lactose anhydrous, magnesium stearate, microcrystalline cellulose, polydextrose, polyethylene glycol, pregelatinized starch, sodium lauryl sulfate, sodium starch glycolate, titanium dioxide and triacetin.
source: http://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?id=42129I am not real happy about all the coloring in these tablets.
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Insomnia, anyone?
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Insomnia? YES!!!!!!
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Hi Maltomin,
I have been on Femara for 2 1/2 yrs. How are your dex scans. They want me to take Fosomax but I am nervous about it after reading all the side effects. Have you had any problems with loss of calcium in your bones.
Thanks
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termite, when did your bone loss begin? I've been on letrozole for 6 months and just had my first dexa. When compared with one I had 5 years ago, I've got zero bone loss, but I don't know when it begins....
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Ok, so I admit to being a complete nerd but here is a table of the ingredients for the different brands of letrozole. The ingredients run along the left and the company runs along the top. If there is a 1 in the cell where they intersect then that company includes that ingredient in their pill. The key for the company abbreviations is below the table.
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Note: If the text is too small on your computer hold down the ctrl key and press the + key (ctrl - will make it smaller again)
All the information comes from here:
http://dailymed.nlm.nih.gov/dailymed/search.cfm?startswith=letrozole&x=0&y=0
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Omaz, thanks for the posting - I am so computer illerate I couldn't figure out how to do it. Oh do I miss my 18 year old son who is away at university!
I really think the different fillers can affect some of you. Then there is the havoc played by the active ingredient!
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justagirl - I put together the table for myself and just wanted to share it. I am not liking the mylan pill, it makes my stomach upset so I am going to talk to the pharmacy and see if they can try another one. Plus it has all those dyes in it which doesn't seem great either.
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Omaz,
I am on the mustard one made by Stason Pharm ....doesn't seem to be causing me any issues at this point
I don't see it on the list...will have to check the bottle again. -
There appears to be a bunch more companies making it....I don't see Stason Pharm but it might be new. I'll have to see what my pharm says today.
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I thought mine was by cara - but I dont see that one on the list either. I get it at Costco.... (used to take the one by mylan)
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garden - I guess letrozole must be easy to make - LOL! Did you notice any difference between the mylan and the cara?
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I had more aches with the mylan, but they went away, then when Costco changed brands and I started taking the Cara version, my aches started over. Then they went away, but about a month later they came back again. I have no idea if the same would have happened with the Mylan version, as I wasn't on it as long.
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It's Qualitest pharmacy that distributes mine....
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That might be a good one TonLee since it doesn't have all those dyes in it.
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Hi Gardengumby,
I had a dex scan in 2010 when diagnosed and it was okay from the one 2 years before that. I have been on femara for about 2 1/2 years and this last scan in March showed a loss of calcium in my spin but my hips and arms and legs are okay. I will probably go on the Fosomax that they want me to take considering I went to another doctor and she agrees with my oncologist. Hope everything goes well for you.
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TonLee - The pharmacist can order Accord for me so I am going to try that.
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Good luck termite. These medications we have to take SUCK!!! But, I keep telling myself that they beat the alternative.
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Omaz,
Let me know how that works for you.
On another note: have you noticed any side effects with Femara? Another reason I'm sure the Tamox was not working for me....my mind, which I brought up yesterday...and went out and bought L-Carn.....but something else, something that is freaking me out. ...Something is seriously going on with my emotions....I feel dead inside, but at the same time I can hear that still small voice inside me weeping, wailing. WT?
Is this menopause? If so, will this craziness pass? I have to be silent and keep my mouth shut because I don't know what might come out of my mouth....I am so disturbed I drove to the gym today and didn't get out of the car! I just turned around and left! THAT IS NOT ME.
Please tell me this is "normal" and will go away soon??
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I am much more emotional on one level - I cry easily and am more needy in general than I've ever been. On the other hand, my anger level has dropped through the floor. I always had a fairly easily triggered temper but it just seems to be - gone.
I'm post menopausal, and didn't experience anything like this during menopause - in fact during menopause things were more or less reversed from what I just described.
I'm certainly no expert on this drug as I've only been on it for 6 months, but have heard from others the same description of "dead inside". I am hoping against hope that it doesn't happen with me. Good luck TonLee.
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TonLee I sent you a PM
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Thanks Omaz. Got it.
Garden, I always wondered why the women in my family got so "hard" after menopause. Now I know.
Dead, desert, barren, blasted wasteland...nothing to get excited about.
Here's hoping it's just a bad day and not the beginning of life in the WASTE. lol
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Tonlee- if you continue to feel this way you need to talk to your dr. It sounds like this might not be the drug for you.
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Tonlee- if you continue to feel this way you need to talk to your dr. It sounds like this might not be the drug for you.
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Ginger,
It may not be the right drug. But since I felt the exact same way during chemo..I think it is likely lack of estrogen....and there's no remedy for that...is there?
I baked a dozen oatmeal chocolate chip cookies, ate them ALL, and now I feel better....functional at least.
Obviously I can't use sugar every day...so I'll shake it off... or I won't....
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Omaz, thank you so much for the information! That's exactly what I've been looking for. Haven't studied it yet but going to right now. Sure do appreciate it! And I'm not happy about the red dye in the pink ones, either...
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Tonlee-the lack of estrogen is a tough one for sure but I have always believed chocolate can make everything better.LOL. Hang in there and come back here for support.
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Chocolate is a good thing as are nuts. I keep extra-dark chocolate around and in the afternoon I have a square of that along with a small handful of nuts. It is good for you and always lifts me a little.
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I don't miss estrogen at all. I suffered from horrible menstrual cramps for decades, as well as migraine. Migraine eased up a lot after menopause, and with letrozole I've actually been headache-free for weeks on end...first time since I was a child. I also feel much more emotionally even-tempered...not dead or dull, just not hyperemotional. Of course the Lexapro may help with that too.
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I feel much better this morning....so hopefully this is something that will just come and GO!
And I am for anything that can be cured with chocolate.
Thanks ladies....
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I gotta say, I took the accord version of letrozole this morning and completely forgot about it, seems to have not bothered my stomach! Here's hoping it stays that way - yay!!
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Tonlee, chocolate cures everything. Everything, I tell you!
Glad you feel better. -
Omaz - could you tell me what kind of effect other letrozole brands have had on your stomach? I've got terrible indigestion that I've been blaming on the letrozole, but my onc says she hasn't had anyone else report that as a side-effect. My husband thinks it could be the curcumin that is affecting me - but I'm convinced it's the letrozole.... (maybe I should eat more chocolate
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garden - I started with the mylan and it upset my stomach. Did that for a week, took two days off to get the accord generic brand and started that today. So I only have experience with the two. I am liking this one better so far.
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Thanks - and good luck with the new one.
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I've got the achy joints, but one of the hardest things to deal with is the fatigue. I sleep at night, but I'm so sleepy all day. I feel like I could sleep for hours. Is this normal? I felt kind of like this during radiation and it turned out I was depressed in addition to the normal fatigue of radiation. I thought I was over it.
Ladies? Any experience here?
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stephN,
If you go back to page 83 on this thread, you will read all about me asking practically the same question. I never figured it all out,though, and yes, I still have it. Let me know what you think after reading it!
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Steph and Weety, I am only a few weeks into femara, and I thought the fatigue was left-over rad fatigue, but maybe not.
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I started taking letrozole immediately after my last chemo cycle, so I never had a break from fatigue. I've been chalking up my fatigue to still recovering from chemo, but it could be the letrozole is contributing as well. I seem to sleep OK, but I feel "out of gas" a lot, and have trouble focusing on tasks.
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Just a quick note on fatigue.
I've learned there can be many reasons for it....but if you took radiation, next time your at the Doc, have them check your thyroid. Even though my thyroid didn't take a direct hit, radiation pooped it out (it was barely working before rads tho).
My RO said a LOT of women get scatter on their thyroid which slows it.
One of the biggest symptoms (besides not being able to lose weight) is fatigue. For me, chemo and radiation fatigue had NOTHING on fatigue caused by underactive thyroid.
Just wanted to throw that out there....its a simple blood test
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Hi ALL, Well, tomorrow is another dreaded 6 month exam. I get so nervous for some reason. Some questions for all of you.
I get warm flushes sometimes at night and sometimes it seems my HEART starts beating harder at that time. Does this happen to any of you? My achy body, makes my mind wander about what is wrong. I found an extra bottle of Femara and am using it up along with the Letrozole that I have been taking since it went Generic. Do you think it matters mixing the two? I'm coming up with all kinds of things to help me figure out why I feel like crap. Would appreciate any comments.
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artsee - Good luck on your appointment tomorrow!
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Tonlee, thanks for the heads up, makes sense.
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I know I'm somewhat more tired than the "normal" me, but not to a terrible extent. Tamoxifen was FAR worse for me. When I was on tamoxifen all I wanted to do was sleep. I'd get home from work and go straight to bed.
On Letrozole I aim for a good solid 8 hours a night - mind you, I never actually GET 8 hours a night because I'm either aching too much to actually sleep restfully, or I'm having a hot flash and throwing the covers off... I didn't have radiation, so can't blame anything on that....
Good luck on your appointment, Artsee - I'm sure everything will be just fine!!!
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Hi artsee,
Are you taking two pills of Femara every day? Why? Please, speak about with your Onc!
Best wishes!
Usha
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No, I'm not taking two Femara....I dumped my Letrozole and Femara together and I take one a day as it comes out of the container. Just wondered if it mattered from day to day which you take. They are supposed to be the same.
Yes, I will mention it to my Dr.
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Garden,
I had to take my Tamox at night for exactly the same reason! It was like taking a sleeping pill.
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Been on Femara from day 1.............have the joint aches, but then again I take nothing for it.........probably aspirin, aleve, or tylenol might help, just don't want to take another pill
Got permission to take Femara, and not the generic..........did not want to take the chance of any worse SE's, so bit the bullet, and am paying out the ass for it.
I think $171.00 every three months.............that goes up when I reach the gap/donut hole, which happens in the last 3 months of the year..............then its over $200.
I hate this shit.
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I read the pages about your sleepiness, weety. I am sleepy all day. When I work on the computer I can barely stay awake. Today, I decided to close my eyes for ten minutes to see if it would help me stay awake for the rest of the afternoon and I woke up two hours later. It's real fatigue and it's really frustrating!
I said I was going to take this without complaining. Sigh. I hope it gets better like some people have said it does.
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TonLee - another positive day for the accord letrozole, no tummy trouble. I had a LOT of sitting yesterday though, meetings during the day and a 2 hour dance performance (teenagers) at night. I had foot and calf cramping, which i rarely have. I think with the loss of estrogen I have to exercise pretty much EVERY day to keep things working. Wish my stubborn knee and foot discomfort would go away! I attribute that to chemopause/anti-estrogens too.
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Steph, Yep, that's me! I'm a kindergartener teacher and there are times during the day that I practically fall asleep while teaching. When I'm doing a calm, sit-down activiity such as small group reading or individual assessing, sometimes I find myself nodding off. Even the kids have noticed it--they say "Mrs. xxx, are you sleepy?" Geez. And it's not age--I'm only 41.
I've noticed it goes in cycles throughout the day. If I can get through the drowsy cycle (I'm guessing it lasts about 30 min) then all of a sudden it's like the curtains open, the sun comes in and wah-lah, I'm fine again. It's very strange. And it really does seem to go away like that in a instant. Suddenly my mind is just clear and alert again.
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Weety- that is me too! I am a preschool teacher and nodding off is NOT a good thing! I think the lack of estrogen causes us to feel much older than our age. I am trying to do some kind of exercise for 30 minutes every day. Even if it is slow walkIng; I think it helps my creakiness and my sleep.
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Ginger...YOGA! Does wonders.
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That's wonderful!! The no SE part.
My left elbow ached the entire time on Tamox.....now they both ache! ~sigh
I've noticed a body composition change. Don't know if it is from the Ooph a couple months ago or what...I weigh the same, but my belly is storing more fat/fluid. You know I count my calories and such, especially now...I've researched and found in menopause women tend to need 200-400 calories LESS a day. Most women don't know this and continue to consume the same amount of calories that kept them trim...attributing it to "middle age spread."
I've also noticed I need a good night's sleep or the next day I'm a bit of a basket case. Not so much on the outside, but inside. I've been drinking a lot of iced coffee! lol
That's all the SE for me so far...glad the annoying vaginal discharge I had with Tamoxifen is gone!
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Artsee- I am doing yoga embodiment, accupuncture, LE therapy and range of motion exercises for my frozen shoulder. Working with a nutritionist also. Feeling better is a full time job...
Tonlee- I think you are right about the calories and retaining fat/ fluid around the middle. I have noticed that since my ooph in December. Also not sleeping well for the last year has also contributed to my weight gain and lack of energy. I am in a fog a lot of the time. -
Ginger,
My Onc said swelly belly lasts for some people a few weeks, and others for over a year. I am slow to heal. I am almost 2 months out and my belly button just stopped hurting a couple days ago! But if I press on it just right, it is still not comfortable.
I'll adjust my calories...but frankly I'm at a loss right now. I can't calculate how many calories I should get for REAL since my heart is not working properly. So frustrating! All those years to maintain a quality of fitness...I'm not giving up...I'm just whining.
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To lee-whine away sister; we are here!!!
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Weety & Ginger 48- that is exactly what I am starting to experience. Have been on only 1/2 a tablet of Femara for a little over 2 years, with biggest problem being joint pain. After starting on generic 2 months ago, I now find myself just kind of falling asleep or losing consciousness for 3 or 4 seconds at a time...sometimes right while I'm talking. The bad part is, I drive a bus...it has happened about 7 times in the last 2 months. I thought maybe I was just tired ( which I am ) , but I have driven for 8 years and never had a problem. I can't continue doing this. I am going to take a break from the letrozole for a few weeks and see if it continues. If it stops I will tell my Onc that I need to go back to name brand Femara. He always kind of dismisses my s/e's as "I've never heard of anyone having that". Even the joint pain. I just had a Dexa scan and it showed a 13 percent decrease in bone density since beginning Femara with a perfect dexa score. I'm starting to hate this drug!!
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You're only take 1/2 a tablet a day, jacee? That's what I've been tempted to do. My joint and muscle pain just keeps getting worse and I've only been taking an AI for almost four months. (Arimidex for three months and letrozole for one.) I don't lose consciousness, but I do find myself getting so tired in the afternoon sometimes that I'm goofy and can't stay awake. My speech gets a bit slurred and I have to take a nap. I'm on the generic too. I wonder if the name brand would make a difference.
I don't even like to think about what is happening to my bones. I have also noticed in the last week that I get a sharp shooting pain in my right shin if I kneel down...it really smarts! I've been wondering what that is too..
I hope that things get better for all of us!
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Last night by 9pm I was out! And I slept for 12 hours. And didn't wake refreshed.
I NEVER sleep like that.
I can't decide if it is the Femara or the Ace Inhibitor. I take both with supper, so about 5pm. I had to take Tamoxifen at night as well so the exhaustion would hit during sleep time....
Ugh. I need more and more coffee everyday just to shake it off!
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Barb.... Have taken 1/2 a tablet for 2 years. I have tried on several occasions to take a full dose, but the joint pain is so severe. It is so weird, as I am not a small person. ( 5'11 and 195 lbs). But I just can't tolerate the full dose. My Onc wasn't thrilled that I switched to half, but said he understands quality of life is important. I just cut the pills in half with a knife. I asked if I should take a whole pill every other day or half a pill every day. He said half every day would be preferred, so that I get some in my system each day. You can look at the Novartis website and see in the prescribing info that in the trials, full estrogen suppression occurred in all groups with a .5mg dose. Half a pill gives me 1.25mg...so more than double the .5mg. So, for me, I am comfortable with that. Granted, best results overall occurred with the 2.5mg daily dose...I just can't do it. I am happy with full estrogen suppression. And the way my body reacts to half a pill, I feel I am doing the best I can. I hope I dont regret this someday! Side note- the joint pain dropped tremendously going to half a pill.
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Full estrogen suppression is at .5mg? Wow...maybe I could just use half also. I go back to my MO in a few weeks and I'll talk to her about it. The joint and muscle pain just seem to keep getting worse and I find myself wondering when/or if it will level out....
Thank you for the reply!
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TonLee - Have you taken your bp? Maybe it is too low on the ACEi.
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Ton...try taking them in the morning. I take all mine in the morning and I sleep my normal time during the night. Doesn't make me tired during the day either.
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Omaz, I have't taken it in yet...haven't been anywhere to do that.....but I shoulda thought of that!!! I'll go to the store and get it checked tomorrow.
Artsee,
A few hours after I take them I am OUT, I can't afford to do that in the morning. I have too much on my plate! Maybe this summer I'll be able to try it in the morning just to see....thanks
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Hi all,
I haven't quite caught up on all the posts here, but I sure identify with most of them.
I (like LC Barb) was on Arimidex first; then a break during rads; then switched to Femara. My joint pain is slightly less; my fuzzy brain is the same - maybe I am doing a little better at work; but my mood swings UGh that is another story.
I just switched to taking the Femara right before bed, and other meds in the AM. That way, I am hoping the Femara isn't peaking during my work day while the meds i need while I am awake will. I actually feel better splitting my meds night/day.
A few days ago I got a vague upper back pain around the rib area - cannot tell if it is inside or near the surface. It's bearable but you know, we worry about new aches and pains.
Tonight I bent over slightly and my hip joint/muscle locked....now it's on both sides of lower back. I can't believe it. Always something new!
I also have more warm moments since Femara - and I'm 63. Been there, done that.
Anybody else with back pains? Grrrrrrr
Joan -
OMGosh Jacee! I can't believe we are finding more of us that are having this same problem! I brought it up a few months ago and someone said it sounded like narcolepsy. But I don't know if you can just all of a sudden "get" narcolepsy.
Barb, I get that slurred speech thing, too. It's almost like being a bit drunk, but more like I'm listening to myself talk from the outside, rather than doing the talking from the inside. I don't know how to better explain it.
I wonder what weird side effect this is and what it is from!
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I don't have slurred speech, but I'll be talking and can't think of a word and just stop and stare at whoever I'm talking to. It's like I've got brain damage. And the joint pain is WAY worse. LCBarb and I started at about the same time. I've been on Femara almost five months and it seems like the side effects have gotten much worse in the last few weeks.
Before I was achy, but I had good and bad days. Now it seems like I can barely function. I'm hoping that it peaks and then gets better. Otherwise I'll be asking my onc for another option, as well. It makes me really unhappy to say because I was determined to not complain about this and here I am, complaining.
This morning I got up, had coffee, and then went back to sleep for an hour and a half. I can't do that! I'm really starting to panic. I have to be able to work and not fall asleep at the computer.
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Weety, yes, hearing yourself talk from the outside is a great description. I will let you know how it goes stopping the drug for a few weeks. I really hope I see this doesn't happen during these two weeks and I can go back on the name brand Femara,
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Wow, so much to look forward to! My thyroid is already toast, I take 275 mcg of Synthroid that really does nothing. I have Fibro, which I take 90 mg of Cymbalta for. Since I have been done with radiation, the joint pain has gone away, but I fear that the Femara is going tp bring that back. I am currently on a leave from work, but I used to fall asleep in meetings (so embarrassing) and at my computer so I had to take a caffeine pill (Good ole Fred Meyer "stay awake") to get thru the day.
I also have had issues in the past with different generics and their "fillers" causing issues, so I know that is a true fact and will be watching for differences. I even notice that even my Cymbalta lasts longer on some refills than others. My pharmacist thinks I am crazy but I know it's true. (well, maybe I am a tad crazy)
I am not sure when I am starting the Femara/Zometa combo but I will stay off of work until I know if I can handle the SE's and work at a high stress job and parent 5 kids and a hubby.
Amy
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Amy, five kids! Wowza! I've got two at home that keep me busy, soon to be one. The side effects seem to ebb and flow.
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Just a quick question....
What dose Femara do you all take?
I take a 2.5 mg...is that standard?
Thanks,
Tonya
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I take 2.5 as well. I think it's standard.
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Yeah, that is the standard amount, and strangely, it doesn't matter if you weigh 100 lbs or 250 lbs. Everyone gets the same dosage.
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2.5 mg is standard. I take 1.25 mg...I cut it in half myself.
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They did some dose response studies....if I read them correctly the letrozole builds up and achieves a certain level in the blood and that level is then maintained. Do you guys understand it that way?
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I started taking Letrozole in September, one pill every other day, then in December started with full dose. Since September until February had three ear infections, my right ear was mostly plugged during that time, had numbness in my right cheek that was coming and going and some joint pain. Then in February I was diagnosed with chronic sinus infection and ENT suggested surgery for deviated septum. I never in my life had ear/sinus infection before. End of March I bend during work and my back and left hip was painful for weeks. I called onc and he told me that was normal for letrozole and to keep taking it as it would go away with time. I also started having 20-30 hot flashes a day. My back pain was last strew. I stopped taking letrozole 3 weeks ago and my ear is not plugged anymore, no cheek numbness, my back and hip pain is almost gone, only 2-3 hot flashes during day and I lost 4 pounds without changing diet or exercise routine.
I had oophorectomy a year ago and that should equal 5 years of Tamoxifen. I am working as a nurse and have lots of clients who were diagnosed with breast cancer years ago and were only on Tamoxifen for 5 years, no AI.
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Has anyone else lost completely lost their memory on Femara? And what about bruising? I seem to bruise so easily now. Thx Heather
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I'm bruising really easy too HM....what's up with that?
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I have been on Femara since august of 2011. I started taking the generic (which looks exactly like the name brand )about 5 months ago , BUT my body aches are just about gone except for damp days.. and 6 weeks ago I switched to taking the pill at like 10 pm and I am sleeping so very much better !!!
my next tumor marker blood draw is next week with onc visit the folloowing week. keeping my fingers crossed ....... -
Thanks for the encouraging words, Rosie! I'm hoping that my body aches are peaking and that they will slowly subside, too! I've been on Femara since end of Dec. 2011. I'll keep my fingers crossed with you that your tumor markers are good!!
Steph
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For those of you who have mentioned bruising what supplements are you taking? Fish oil,green tea, aspirin, ibruprofen can all increase bleeding and bruising.
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I noticed some bruising too, but I'm taking 4 fish oil capsules every day as well as 3 cups of green tea.
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other supplements that thin the blood are: curcumin, glucosamine and cinnamon - oh yeah, and Vitamin E.
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Just got my Dexa Scan results and I am Osteopenic AGAIN. I've had 6 infusions of Zometa in the past and keep loosing bone in my hip joints. So much for taking daily Calcium, Vit D, Mg supplements, 2 mile walks, exercise. I'm so disgusted with this dx and side effects of all the treatments and feeling like crap.....
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cp418 - I don't know very much about it but read on a thread that someone had their parathyroid levels checked and they were off and they said that might have affected their bones.
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I have not logged on for a couple of weeks now, and I continue to be amazed at the number of posts regarding serious side effects of this drug. Do doctors ever read this? Are they listening? My mom was recently diagnosed with an A1 IDC. After her lumpectomy, I went with her back to her Dr. and they doc said she looked really good but she will probably need to start taking Femara. I burst into tears and told the doc there was no way she was going to do that to my mom. I have EVERY symptom that I have read on the last 40 pages of posts. No way my mom can take that. Of course my cancer was much worse and I have been on this drug since July 2009. Her doctor said something to me that was profound. We are all going to die, and I can still make decisions as to how I choose to live. After about 4 agonizing days of tears and prayers, I decided to take a vacation from Femara. I called my Onc and told him we could discuss other options at my next appt. in May (They were not happy of course). I have now been off the drug for 3 weeks. I have heard many say that docs have taken them off for a week to see if they get better. No way...that is NOT enough time to tell. I am just now noticing subtle differences, like rolling over in bed more easily and getting up out of a chair without groaning like a 90 year old woman. My hips and feet still hurt quite a bit, but the knees are already feeling a little better. I guess I should mention, I have been on constant steroids with my Femara for the pain as well as narcotic drugs. I am trying to cut back on these as I go. It is a slow, and yes still painful, process. Not to mention the 70 pounds I have gained in the last year and a half. But for the first time in a very long time, I have hope for something a little better. So here is the question I ask myself when I see that stranger in the mirror every morning. "How do I want to live?" What is the point of keeping me alive if I am not able to live my life to the fullest. If I stay on Femara, I am going to die from a heart attack or stroke way before the cancer can get me again. I see my Onc next week. I will post an update then. In the meantime...all of you brave warriors keep fighting with all you have in whatever way is best for you!
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painh8hr, It really sounds like you should ask your MO for another AL. Maybe one of the others would be better. Hope so anyway.
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Heather....are you asking if I completely lost my 'mind' from Femara? Then the answer is YES!
The mind is something of the past and everyday something new surprises me......and it p---------me off I might add. But I don't like the alternative so here we...stuck!!
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after 3 weeks I am having no side effects[unless depression is a side effect] does that mean that it's not working because my bc has a high chance of recurring elsewhere ion my body anyway.
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painh8h, I hear You. I stopped Letrozole a month ago and I am finally my old me. No joint pain, back pain, no 20-30 hot flashes/day, my ear unclogged, my cheek is not numb...When I called my onc to tell him about these side effects (I started Letrozole in September every other day and numb cheek and clogged ear with constant sinus and ear inf started immediately) he just told me it would get better. It never did for me, but just worse. Maybe if I got real Femara and not generic I would feel better but it was never offered to me.
I am not sure anymore what to do and what to take. I gave up my breasts and my ovaries already.
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vicky....It took more than 4 weeks for the side effects to start kicking in for me, sorry to say. But many people do take it and have no SE's. Hopefully, you're one of those people. It doesn't mean it's not working...
The side effects are getting worse for me and I understand what you're saying, nikola. I'm going to give it a bit more time and see how I am. I'm sick of being tired all the time and feeling like I'm much older than I am. If it keeps getting worse, I don't know if I want to keep taking it. I gave up my ovaries too and I really didn't think when I was diagnosed a year ago that I would feel like this a year later...
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nikola and lovesChristmas - do you take any supplements along with the letrozole? I take a whole host of them and am convinced that they help. To be clear - they certainly do NOT remove the pain, but it is doable for me (as opposed to the alternative of no AI and fairly high certainty to have cancer back sooner rather than later).
Maybe I'm fooling myself about the supplements helping, but I have to go off them for the next week in prep for stage II reconstruction and am really nervous. I'll let you know if I see a difference without them.
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I do take Vitamin D3, magnesium, and calcium along with a multivitamin. I've been taking claritin for a week because several people on other threads say that has helped them but I haven't noticed any improvement yet. Most days I can deal with the pain I have; it's the almost constant fatigue along with the pain that's wearing me down. I started my exercise routine back up last week and I feel better earlier in the day but by midafternoon, I'm exhausted and have to have a nap.
What supplements work for you? I'm up to adding more...
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Right now I'm taking:
curcumin, ginger, quercetin, cinnamon, vit D-3, a multi-vitamin, indole-3-carbinole, biotin, cod liver oil, glucosamin sulfate and one other I don't remember...
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Wow.
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Are all of those for the pain? or are some for cancer recurrence?
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I take Omega 3, D3, Multi Centrum Silver, Calcium and b 1 baby aspirin. Recently I've added Forskolin...It's supposed to be good for the heart and helps burn belly fat. Which I have thanks to femara. Anyone heard of this supplement? Saw it on Dr. OZ.
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Nikola
I could not believe when I read about your side effects. When I started this drug in 2009 (and I started with the real Femara) I had terrible clogged ears and recurring sinus infections. After about 8 of them my family doc sent me to an ENT. He ran all kinds of tests and did a CT scan of my sinuses. He was on the verge of thinking he would be doing surgery when he discovered there was nothing wrong with my sinuses. He was completely stumped. He could not explain why they were inflamed all the time but I really had no infection. This was an eye opener for me. I have also been through every test the Rhumatologist could run, and he finally dropped me too. I have been on the Letrozole ever since it went generic. I really could not see any difference. My symptoms have gotten worse and worse over the last couple of years and now I am starting to see some relief after being off of it the last 3 weeks. I saw the other comments that I should try one of the other drugs, and I know my Onc will recommend that also. I just can't see the benefits outweighing the risks for me these days. The list is long...hot flashes, headaches, shortness of breath, sinus and ear problems, awful joint pain in all extremities, memory loss, fatigue, depression, +70 pounds, blurry vision, can't sleep at night, can't stay awake during the day. Not to mention all the extra drugs to combat all of these symptoms. Welbrutin, Elevil, Ultram, Vicadin, Decadron, Klonapin, Xanax, antibiotics for all those infections. All because of Femara. And I have tried several others like Neurontin, Lyrica, and Cymbalta. I also take medicine for high blood pressure. I gave up both breasts and my uterus. I have never been able to get my breast construction finished because of all these other setbacks. I am twice the size and half the woman I used to be 3 years ago. I am not sure anybody really wants to know all the reasons why I stopped taking my Femara (Letrozole) 3 weeks ago. That about sums it up. Every time I get on here and start reading, I learn something new about the drugs and about my symptoms that I could never figure out before. It is good to have a place to vent with people whole totally get it. I don't have the answers to my problems, but I just want to live my life in a better way than I have been. I hate that you are all going through this with me, but I am so glad I found you!
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painh8r......
If you've never read the book "the Yeast connection", please do. Sometimes we take to many drugs and antibiotics are one of them, that totally kill off our good bacteria and ruin our whole immune system. I think you need 'Probiotics' in you to get the good bacteria build back up before the bad breaks your whole body down. I've learned to much from this book and you can have a whole malady of things wrong...infections, constipation, Daria, depression, headaches, feeling of dizziness. The list goes on and on. It happened to me years ago and it mushrooms like a snowball coming down a big hill. Dr's.? They can't find anything wrong. All my throat Dr. kept saying is...yes, your throat is all inflamed...did you eat too many tomatoes? #%*! NO..it's the damn drugs that are killing me!! Health-food store have Probiotics in the refrigerator section. This could be yeast related.Everyone should take them to get the gut back in check. Just trying to help,,been there.
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THAT was the one I forgot - probiotic!!!
LovesChristmas - the Indole-3-carbinol is for cancer, the quercetin and curcumin are both for cancer and pain. The cinnamon is to help metabolize sugar as my blood glucose is a little high - and for pain. The ginger helps my stomach (as the letrozole gives me indigestion) and for pain.
Basically curcumin, cinnamon, quercetin and glucosamine are all anti-inflammatory. Once I'm off warfarin permanently I'll also start taking white willow bark (a natural form of aspirin) which is also anti-inflammatory. I believe they help me, but like I said, my DH thinks I'm crazy.
Fortunately he's nice enough to not put it quite that way... -
Thank you for the explanation gardengumby! I'll have to look into adding some of those to my list..
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I am the most stiff and painful in the first few hours after awakening........then, I seem to come alive around 1PM. I saw where someone suggested taking this beast of a drug at night...so the SE's fade out by the AM. I'm switching to that. Good grief......I used to be one heck of an athlete...now I walk like I'm 101.
bummer.
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Viv,
You are gorgeous! Love your hair...wow. Very nice.
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I switched to taking it at night early on and it made a big difference....
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Night time is what does the best for me!
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I second the night time....I want the Femara to peak when I'm sleeping....and the other stuff I need (the feel better drugs) I take in the day and hope they kick in while I'm working and living.
I think it is working....
I also was dragging tired all the time....I started drinking a single cup of caffeine in the AM and I feel so much energy. I hope I don't get used to it so it doesn't work any more.
Happy week end, all!
Joan
PS - my thumbs still hurt (at the lower joint) and have since I started Arimidex. It didn't go away when I went off...switched to Femara and they still hurt. Not unbearable.... grrrrrrr
Also, I noticed that when drying my hair my arm gets tired so quickly....could be the surgery though. -
Ok, it is my hands.....my fingers are swollen, the entire palm on both sides.
Onc said Femara can exacerbate arthritis. All the women on my dad's side get it in their hands, fingers.....my knuckles are twice the size of normal...My wedding band has been super loose, almost falling off loose for years...now I can barely get it over the knuckle!
I'm only two weeks in...hope this changes.....it's not a deal breaker...but not comfortable.
On the other hand, the runner's knee I have from decades of running and which was very painful on Tamoxifen has let up....so much so I'm looking for running shoes...not to do a lot, maybe once a week...on a flat level surface to help with bone loss.
If I knew Tamox really worked for me, I'd ask my Onc to switch them back and forth for the 5 years...that way, one year my bones take a beating on Femara, but the next year they are built up with Tamox....and the symptoms are diff for each drug, so I'd get some relief .....I may still ask him about it...just to see what he says.
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That's a good idea TonLee - I'll ask mine too about switching back and forth when I go in next month.
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Let me know Omaz!
My Onc likes Tamoxifen better, so he may be open to it.
And it should help mitigate bone loss....or it seems that way to me.
Plus I've read some research that say women do better with 2 years Tamox and 3 years AI. Less AI SE.
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Tonlee,
I remember reading on this site somewhere that there is a controversy whether or not tamox is okay for HER2+. I've seen it more than once on this site.
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I have read that too weety - I talked to my onc PA about it and she didn't seem concerned. She did say that the letrozole has about a 20% advantage over tamoxifen - I am not sure exactly what that means....only that perhaps the letrozole may be slightly more effective at preventing recurrence than tamoxifen.
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Miami,I took the free bottle with 14 pills of Arimidex from the dr and about a wk into it,i got shortness of breath and my mouth swoll up and my tongue and I got sores in my mouth and the sores on the corners of my mouth started spreading to my face. I called the MO and told the nurse I stopped the pills cause of that. She says "Just get Biotin at Walmart". Hmmm,what about the shortness of breath and swollen tongue did she not understand!? i am so scared I go back to the MO on Wed and afraid they will yell at me for stopping the hell pill. I had a whole slew of side effects after 1 wk so Istopped all drugs & vitamins for a wk then I started the Arimi again and again the mouth sores returned. So I took the rest of the bottle. Been off it since April 1st but still have severely chapped lips and high bld prz for which my gen phys has been treating me. Wonder if I can switch to Femara will it be better? He said on first visit,all pre menopause girls get Tamox and all you gals past menopause get Armi..hmm never heard of the other drugs and he is an MO?!!
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Hi everyone, I was having terrible joint pain on femara especially knees and feet. I started walking 30 minutes a day. Not really fast; about 3 mph. I have noticed a huge improvement so I am going to keep at it.
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I don't think the tamox and HER2+ combination had anything to do with whether an AI or Tamox was more effective. I think it had more to do with tamox affecting the way that HER2+ receptors acted. I wish I knew where I had seen it. I will look more tonight and see if I can find it on here. Meanwhile, maybe someone else might know more????
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weety - Maybe this is the thread you are thinking of LINK
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Ginger48, I am so glad you found that walking is helping with the SEs.
That was my plan---and I decided to stay on and try to eat better and walk frequently.
Well, I am at the end of my semester at work and there is no time for walking or eating right....but in 2 weeks, I will start. I expect to feel better and stronger.
Anybody else find this helps?
Joan -
Joan- great plan! I am finding myself sneaking more walking in my day. Parking my car in the furthest spot, taking stairs instead of elevator, etc. It is like my brain knows my body is feeling better and is sending me messages to "move". I would never have predicted I would feel this way but I am going with it. I am still creaky after sitting a while but it goes away so much more quickly.
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Joan - Exercise helps a lot. I think now I feel the best when I do some kind of exercise everyday.
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Joan, yes, I make it a point to walk a minimum of 45 minutes every day. Walking the dogs or for errands is extra on top of that base. First of all it helps my mental state. It is relaxing and refrshing to walk. But it also gets rid of stiffness and achy joints.
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Joan and Ginger - I walk every morning for at least a mile. I've also started doing some yard work again - which is unfortunately EXHAUSTING - but I fell much better the next day. As far as the arthritis goes - my knees and back and one joint in my finger all hurt much more than they used to. I can't walk as fast - which is totally frustrating, but hasn't stopped me from walking - it just takes longer to get anywhere. I've also found that stretching helps the muscle pain quite a bit.
weety and tonlee - I also read that 2.5 years tamoxifen and 2.5 years femara was a good solution. Unfortunately, I only lasted about 6-8 months on tamoxifen as my body simply wouldn't cooperate - it hated tamoxifen. I'm doing much better on letrozole/femara.
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Hi all, I am on the drug Femara and have been since 2009 when I had my second bout with cancer and had a mastectomy. I was diagnosed with osteoporosis before then and the rheumatologist started me on Fosamax and glucosamine chondroitin, in addition to the calcium supplements I was taking. I didn't realize until recently that the joint pain in my hands which included a trigger thumb was caused by the Femara. My new nurse practitioner told me this. I decided to experiment a little and started taking the glucosomine chondroitin with MSM and that really helped my joint pain in my hands. I can now open jars and my pill bottles earier, as well. I noticed I also developed a bad cough about that time, also. Any suggestions on how to get rid of that?
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I just started taking my femera at night yesterday. From what I've read here that seems to help a little. Does it cause any difficulties with sleeping? My dog got me up during the night & had a difficult time falling asleep. I was very restless & achy. Maybe it was just one of those nights....I seem to have them since being put on lupron & femera, although that is better than it was in the beginning.
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tenaj, I had a hard time sleeping at first when I started femara, but now I sleep okay. Maybe I've gotten more used to the hot flashes.
Hopefully you will get used to it too. If I'm having a rough night, a meltaway melatonin helps, or a benadryl.The joint aches are the worst. I feel like I have the flu all the time. I am trying to move more, but it doesn't seem to help. I even tried taking naproxen every day, but it didn't help either. I know I need to be on it, but I think I'm going to ask my onc to switch me to one of the other ones. I've only been on femara four months though. I feel like a failure! grr.
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I was taking my aromasin in the evening but found I had trouble sleeping and had lots of joint pain keeping me awake. I switched to taking it after lunch. Seems to work better. Able to sleep at night and joints don't keep me awake. You might try it and see if it is a better time for you. Good luck.
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Most of my joint pains subsided at around 9 months.
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Good to hear on the 9 months, I'm going into my 9 month. I slept better last night, which is a good sign. I hope to feel a difference in the joint pain during the day. I did start supplements about 3 months ago & that has helped also. Exercise also helps, I'm good as long as I'm moving. My stiffness comes after sitting & then getting up.
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Hello to all . . .
I am new to this particular discussion board. I had a lumpectomy in late December and started Herceptin in March. I also started radiation in March and just finished last Friday. Before starting the radiation I read a couple of the discussions and it seemed that everyone had such horrible reactions so much so that I was very nervous about starting. Because my RO explained that I would have the treatments in a prone position because of my size and the beams would not touch my heart, lungs or ribs, I went ahead and did it. I had little effects, some redness but nothing bad and no fatigue at all.
Now the MO wants me to start Femara so I've been reading about it and am nervous again. All I have read was about the bad side effects. Is there anyone out there that hasn't been bothered by the joint aches and pains and the hot flashes? What scares me the most is the loss of bone. My bones are really good and I'm not sure I want to endanger them.
I realize that if I start having any of these side effects and decide that I don't want to continue that it is my decision, but it would be nice to hear that others didn't have the problems that so many write about. Once I wrote on one of the radiation boards that I really didn't have the problems I was reading about, others chimed in to say they didn't have problems either.
Thanks for "listening: . . .
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I would bet that there are others without side effects but they are out living their lives instead of on these boards for support.
I started Letrozole a little over 4 months ago. In the last week, I am having less joint pain and muscle aches. I don't know if it is because I am walking more or my body is just adjusting to the med but I am going to keep on walking! I am still creaky when I sit for a while but it is definitely going away sooner.
Good luck with your decision.
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I have been on the Letrozole since Nov. 21, 2011. Most side effects I have noticed are, hot flashes (more than when I went through menopause), some insomnia, some achiness, and some spells of feeling 'blue' and weeping. All are getting better now though. I figure these SEs are minor compared to what could be....
Vickie
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Well, I talked to my MO today and I'm switching. She said that I might have better luck with a different one. She had told me from the beginning that this was a fluid process and that we weren't locked in to one particular drug, that it wasn't one size fits all. So, I called her today when I could barely get down the stairs this morning. I'm taking a week off to let the letrozole clear out and then am starting aromasin. Hopefully it will be a better fit. She did say we could try an arthritis drug like celebrex if the joint pains didn't get better. So that might be an option in the future.
I'll let you know how it goes in a few weeks!
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StephN, Don't forget you can experiment with the time you take it too. I first took at night because so many said it was better , then I switched to after lunch and it seems to be better for me. So try different times but give each a few weeks so you can really tell what works for you.
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Seamstome: I began Femara a year ago May 6, switched to the generic 3 months later and have been on various brands of the generic ever since. I take my dose at night because my only SE initially had been sleep problems. I've been sleeping much better now, although about once a week I take an ativan to guarantee a really good nite's sleep. This is usually after a day that I have either been immersed in a book all day or have something worrying me.
I am a very active person and have high energy. An oil painter, I am also in charge of a plein air painting group. In additon to joining them to paint on a different location I've arranged every Friday, I also paint at home several mornings a week and manage their blog. I've organized and exhibited in art shows, and am presently working on an art calendar and a book of local art for our art museum.
I do have some joint aches and pains, but none are serious and since I'll be 69 in another month, I attribute mine to age. I also sail, and since my husband has knee probems, I'm the one who has to do all the moving around, pulling, winding, tugging, and tucking when we go sailing.
I haven't had any noticeable weight gain..in fact, I lost some weight for a bit there and had some stomach problems that I'd begun to be concerned about. However, after putting myself on the 14 day prilosec regimen, everything normalized in that area. I don't eat junk food but aside from reading labels to make sure I'm not eating any nasty stuff, I eat whatever I want... and still haven't gained weight.
Although I was diagnosed with osteopoenia about 10 years ago, my last bone density test, done in December, didn't indicate any concernable increase in bone loss. I do take 1200mg Calcium plus D3 every day with meals but don't exercise regularly.
Each of us is different and those of us who are doing "ok" with the femara or one of its generics usually don't post here. We are "out there", we do exist. and I hope my "story" gives you some hope that you can lead a fairly normal life while on this pill.
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Thanks for the encouragement for walking. I just know it will help....
Right now I have more good days than bad. I am tired; have some warming (flashes) but nothing unbearable. We will see in the 90% humidity how that works this summer....
tenaj, I always feel tired in the evening. When I try to go to bed, I lie awake a long time. Mainly it is due to allergies and anxiety. But when I am not working and do not have to get up at 6 am, I will take a Zaleplon pill for sleep. It is very mild and does not really have bad side effects. It helps me go to sleep but doesn't keep me asleep too long.
I am feeling better over time, with less depression.
Nite all....be well!Joan
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Thanks, Ginger! I appreciate hearing from you, too!
Ptdreamers, that's a very good suggestion to take it at different times of day. I've been taking it at night and I am sleeping fine, but maybe after lunch would work better. Thanks for the tip
I really don't know what I'd do without you BCO girls!!
Steph
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Day 3 taking femera at night & so far so good. Actually it's been 2 days since I took Motrin so it looks like it's working. I've been sleeping well too! Thanks ladies for the suggestion.
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gardengumby, take care of cinnamon, some uncleaar report for its effect to MCF-7 breast cancer:
http://foodforbreastcancer.com/news/cinnamon-and-breast-cancer%3A-the-picture-is-unclear
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Joetmn - thanks for the link. I've been avoiding cassia and taking true cinnamon - but it's important to note the difference!
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Trigger finger surgery -- for both the right ring finger and right thumb -- scheduled for May 17. Thank you, Femara.
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Hello,
I'm new to this forum, and I've been taking Femara for a year. I should say I was taking the generic for 11 months, but I'm unsure which company made it. got it from Express Scripts, and it was pink. I had joint pain, some slurred speech, and hot flashes, but I handled it with supplements and activity. I started to take Femara by Novaris about a month ago (My Onc gave me free samples). The pills are yellow. I had a Lat Flap done on March 16th, and developed MRSA. I am close to finishing 20 days of twice daily Zyvox infusions. My joint pain, numbness, and concentration have worsened. After reading the posts here, I'm wondering if the change in AI's is the culprit? I've been blaming the Zyvox for the change in my joint pain. My activity level has dropped because the Zyvox nauseates me, but maybe it's the Femara? I'm going to call my Onc on Monday, and ask for a RX for the pink one and see if that makes a difference. Maybe I need the dyes! I've tried to piece together the posts on the difference between generics and brand names and the different reactions.
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Good luck Mollydog!!!! I love your puppy :-)
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Jlmg, I'm sorry you are dealing with this. You will be feeling better soon. I had an infection after my exchange in january & had to be hospitalized for 2 days in March for IV Zyvox, fortunately I was to take it orally & it has worked so far, I haven't lost the implant. I started taking the femera at night almost a week ago and it has helped. I'm taking less Motrin. I also take some supplements. Good luck!! :-)
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Jmlg- that is Interesting because I had been taking the pink letrozole and having terrible joint pain. I started taking the yellow one a week ago and I have barely any joint pain now. I think we all react differently to the fillers and have to work hard to find the right fit for us.
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Does anyone have problem with hands getting numb? It only my middle finger and ring finger and small finger that does it on both hands.It only does it a night when i go bed. I have used the carparal tunnel splints and they still get numb. I have had carparal tunnel surgery about 5 yrs ago
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Yes nanna, I have that too since treatment and have read a couple of other women having this trouble. I don't know what causes it.
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I had this during my last pregnancy (before breast cancer) but haven't had it since. I wonder what causes it. It was just my left ring finger and pinky. And it lasted the WHOLE pregnancy. It was bothersome at first, but then I think I sort of just got used to it. It was weird. After pregnancy, it went away. I don't even really remember it going away. I just realized one day that it was gone.
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Nanna,
Since starting Femara my hands get numb when I sleep...though the non cancer side is doing it much less now. The other side had gets numb if I hold it up in the air for more than 15 minutes and while I sleep....weird.
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Nanna- I have the finger numbness in my ring finger and pinky at night too. My arm goes numb and I have to wake it up to reach the alarm.
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Okay, so what causes this? Is it all on your breast cancer side? I've wondered if it had anything to do with that before. . .
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It's not just on my breast cancer side - but I've had it for years, so am nobody to use for a measure...
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Aot of times it is caused by arthritis or narrowing in the cervical discss causing compression in the nerves that go to the hand and arm. I haven't figured out why the AL's aggrevate this.
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well, the AI's seem to worsen arthritis, and cause narrowing in other joints (i.e. "trigger" fingers, toes, etc), so maybe that all fits together....
pt, is that a rose or a peony for your avatar?
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I wanted to share something I use for knee pain. I put Lidoderm patches on my knees during the day, and I use castor oil packs on them at night. You soak a piece of flannel in castor oil, put it on your knee and cover it with saran wrap. Be careful becasue the castor oil stains. I also sleep with a pillow under my knees. I add a little bit of castor oil each night to the flannel. I cut the lidoderm patches in half and put them on the tops of my feet during the day, too. The arthritis doc gave me the prescription for the patches. Votaren gel is also a prescription, and sometimes I use that instead of the patches. It helps if I do leg extensions with an exercise band and swim. Hope this helps someone!
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Gardengumby, Its a peony.
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Ok. I know this has been asked a million times...so here is one million and one.
Joint pain. I'm having a lot of it in the knees and elbows. Woke me up last night hurting, and I haven't woke up hurting through this entire thing.
I'm 4 weeks into Femara, just started my second month's bottle. Does this get better for some? I noticed on Tamoxifen most SE came and went, and by 6 months I knew which were hanging around for the duration.
I'd appreciate any feedback....even if you've said it a thousand times already.
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I have been on the generic (Letrozole) since Nov. 21. My experience is that the joint (even some soft tissue sometimes) pain comes and goes. I can have a good day or two then a day or 2 or 3 of being quite uncomfortable. Keep telling myself that at least I am on the sunshinny side of the grass...;-)
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Thanks Vicks.
If it stays this bad I will ask to try something else.....
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tonlee - I've had joint pain on and off since starting the letrozole. I have found that IMO curcumin and glucosamine help. Exercise help, too, but I think I read that you do that already.
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I was very achy in knees and feet about an hour ago. I am staying ina hotel with an exercise room, so I went and walked on the treadmill for a half hour, just leisurely walking, 3mph, and it feels much better now.
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Momine- I think exercise is really helping me and my joint pain is much better. I have been on it for 4&1/2 months.
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Does anyone think femara might be causing my TMJ? My left jaw is popping in and out of the socket, and it is driving me crazy. Femara affects all of the other joints, many it might be affecting my jaw too?
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Well I guess my SE's are not normal, I have cold or allergy symptoms. My Onc. was thinking I was nuts till my blood work came back. Well guess what it shows I am having major signs of infection in my body. The thing is when I went off the generic for a week the allergic reaction cleared up, and I tested it 2 times.
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Weety, I have TMJ and it has been actng up after starting femara. So, yes, I think it is related. It also got bad during chemo, and my onc said it was from the inflammation caused by the taxotere.
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What are the treatments for TMJ? This is the first time I've experienced and I've self-diagnosed. I haven't been to see anyone---would I go to the doctor or the dentist? Do I need to go, or will they just tell me to do something I can do on my own?
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There is no real treatment for TMJ. Some doctors and/or dentists will try to sell you expensive guards for your teeth to prevent grinding of the teeth. They don't work well.
Do not "pop" the jaw. Try to relax the jaw. Avoid biting nails and chewing gum. Don't grit or grind your teeth. I also find that if I wake up and feel the TMJ hurting I take 200mg of ibuprofen and that usually nips it in the bud.
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Well is does seem my mysterious sickness has been the generic Femera. My blood work shows massive infection, and since when I'm off the stuff all the coughing, dripping eyes, and chest congestion goes away, so it must be something in the fillers. I will be on the name brand from now on. Thank goodness, I am so tired of feeling sick. 6 months is way to long to be living like this.
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Weety, one more thing. The past ten days I was in the US (from Greece where I live). We stayed in hotels and ate out, so my diet took a nosedive and I kinda gave up anyway. I ate white bread, fries, meat even sweets. My knees, hips and feet ached like crazy and the TMJ acted up.
I got back Friday and Saturday I was back to eating a better diet, cabbage salad, lots of garlic and onion, no sugar etc. I am much better today. It may be coincidence, but you may want to try to make sure that you eat some anti-inflammatory foods daily.
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Momine, What kind of cabbage salad was it? I am always looking for ways to eat more cabbage.
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Very simple really, something I eat at our local noodle place. Shredded white cabbage with some shredded carrot and some strips of red pepper, poached, chopped chicken, some coriander and dressed with lime juice.
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Genereic/Brand Femara, This may be the case for some, but I discovered the generic letrazole is better for me than the brand name. Go figure! I used Novaris for 3 weeks, and felt miserable, all the SE's were worse, especially the joint pain, and it interferred with my sleep. I thought it was the IV Zyvox, which I'm on for another 2 weeks. After reading these posts, I experimented and went off the brand name for a few days. The hot flashes were terrible and the joint pain stayed on. Then I went on the generic, and I'm sleeping better, and the joint pain is manageable with all my supplements, stretching, and castor oil packs. If I could just get rid of this frozen shoulder! I ordered Manuka honey to try to address this infection. Has anyone tried that?
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Thanks, Momine, for all the tips and tmj info. It doesn't usually hurt--it's more of a nuisance. I'm just worried that it's going to get worse.
Your cabbage salad sounds yummy--I'm going to have to try it. do you add any oil at all (olive oil?) or just the lime juice?
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A little olive oil, but it isn't really necessary.
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Momine, I tried the cabbage salad yesterday, and really enjoyed it. Thanks for the suggestion.
Well I woke up today with huge eczema welts all over me. I went to the Dermatologist got a steroid shot, and was told to stop the Femara and call the Onc. So now what? My Onc. is on vacation for the next 2 weeks. I'm so frustrated!
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Kira, maybe the cabbage was to blame
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Momine You made me laugh with that comment about the cabbage. If it could just be the easy. We know I'm allergic to petroleum products, so I'm wondering what is in the meds. I've used steroidal cream for years to treat small out breaks, but this is way to much for the cream to handle.
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not sure if you will read this post due to the date but...
I was on creastor but could not afford the copays so asked ~ to switch to simistatin (generic zocor)
since it was the same time I started on my femara, when I started getting horrible leg pains, cramps, weakness in the leg, or whatever you want to call it
I blamed it on femara and never spoke to my PCD
after about 2 1/2 years, I finally ended in tears in my PCD office and she finally said, gee, maybe it is the simistatin.....after offering me muscle relaxants......
fast forward, I stopped all statins, my cholesteral when up to 300
ended in a cardiologist office who got me on lipitor
so far, no problems and the cholesteral is fine
sigh
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Kira, if you know what you are alergic to, and can not reach your doc, try the pharmacist.
lordie but I have found mine to be great at telling me what to avoid regarding alergies
as in me..alergic to NSAIds...guy told me what I need to avoid....pepto, aspirin and loads more
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proudtospin, Thanks for the info, but mine seems to be evolving, and that is the rub. I have all the Doc's looking at the situation at the moment. They are very concerned, so having a group discussion before moving forward. I know it will be another drug, but have no idea whoich one at this time.
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proudtospin - I too am allergic to NSAIDs and aspirin products. I have, however, found that I can take the natural form of aspirin (white willow bark) with no adverse affects. It might not work that way for you, but it might be worth a shot.
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Garden gumby(what a fun name!)--hmm, never knew of the white willow bark so will do some research.
I get real nervous on trying new stuff but may look into it, for me, tylonel works although,had a nasty reaction to the tylonel PM version which contains benedryl....so added that to the no no list
just replaced my friendly heating pad, no side effects!
alergies are scary so I try to avoid things and do try natural and also, keep a handy rescue inhaler by myside
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The fillers they put into pills can have toxic effects on some people just like some people are affected by food additives....and sometimes cause life threatening conditions.
I think if you are taking on generic and it's really upsetting your system, check the additives in it and look for another generic with different additives.
For me I think the Femara itself, and I take the real one, not generic, is what knocks me around. Tired, aching joints, mood swings. Every month when I get the prescription filled they say would you like the generic, less expensive one and I say 'no way'.
We have to do our own investigations and can't rely on doctors to decide which one is good for us.
Think about it - estrogen is one hormone that makes us what we are and now we are all taking a pill to wipe it out of our systems so we can starve any potential breast cancer cells that might be lying dormant in our body but looking for estrogen, which they feed off.
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HI Debbie,
So glad to see you again and would like to tell you my MO changed me to Aromasine in 2012 and i must tell you now I have really less SE's as on Femara, but still asking will it be as success full.
All the best and greetings
Usha
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My doc switched me to aromasin also, doing the generic now and not seeing any SEs from it.
then again, got aches and pains so who knows, counting the months till the 5 years are up and really hoping to be able to end the stuff then
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jlmg, I haven't tried the honey. I don't know if you can try elderberry tea or extract. It works well for me, but usually more at the beginning of an illness. I file it under the "it certainly can't hurt" tab and take it when I'm sick, anyway.
I had a frozen shoulder for a year. I injured it swimming, trying to exercise...go figure. I went to the doc over and over again. I got three shots in the back of my shoulder. It would ease a little, but the pain never got better, always worse. Finally, I told him, enough with the shots in the back. The pain is worse in the front. He said there is more risk of adverse side effects with giving shots in the front. I was like, adverse side effects like losing the use of your shoulder? I've already got that. DO IT. So, he did. Within days it was better and two weeks later, it was almost back to normal. The miraculous part was that I haven't had any trouble with it until recently. But then every joint, everywhere, hurts! I don't know if that will help or not, but it was my experience. And there has been nothing to date that would send me to my knees faster than someone grabbing my arm and pulling on that shoulder. It is horrible pain.
As for the aromasin, I've been taking it about a week now, after switching from Femara. I can't tell a difference. I hope that my side effects lessen over time! Just gonna keep holdin on, for now!
Cheers,
steph
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I went off all my supplements prior to stage II, as they were ALL blood thinners. My right knee just kept getting worse and worse, to the point that I'd almost be crying from the pain. I'm back on all of the supplements now, and it's slowly improving.
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Has anyone stayed on femara longer than 5 yrs?
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there was a woman on my weightwatchers BC boards a couple of years ago who had stayed on the ALs for about 8 years, she was part of a test at the center she was going to
but one day she posted that she was throwing in the towel on any more and her onco was fine (she had 8 years!)
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I wonder about this, too. My onc said that now that more and more women are surviving breast cancer (and many of them young with lots of years to live) that it might end up coming out that we need more than 5 yrs of an AI if estrogen postive. I don't want to even think about that though! Does anyone know if there are any studies or results on this yet?
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My mom was on tamoxifen for 10 years - which was the prevailing requirement back then (about 20+ years ago). My oncologist said she wanted me to have some kind of hormone suppressant for a total of 5 years. She said that a lot of women throw in the towel at about 3 to 3.5 years. I had about 6 months on tamoxifen and so far about 7 months on letrozole. I'm planning a letrozole "vacation" for a month this winter (with her approval). Some of the studies I've read said that 2.5 years of tamoxifen followed by 2.5 years of letrozole provided the "best" results. I'm not sure how they came up with that, though. I just don't think I can do more that 5 years of this stuff. I walk like I'm about 800 years old - on a good day.
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Last conversation with my onco on this, she seemed to say she would be ok with me stopping at 5 years
lordie but I sure do hope so, that would mean I have 1 1/2 years to go on the junk,
not sure how to tell is my aches are a side effect of the meds or if just getting old
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Usha, sure glad to hear the change in medication has made your life easier. I know I can do with all the help I can get. When I was 57 and before BC, I felt and had the energy of a 37 year old. Now, 2+ years later, at 59 there are days I feel 69, what with the aches and pains, mood swings, hot flashes, and now 2 prolapsed discs all thanks to Femara leaching the calcium from my body. I truly hate the changes Femara has done to me more than the double mastectomy with reconstruction!
Enjoy your summer.
Debbie
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I hate the mood swings. Sometimes I feel great and then I'll turn into a raging bitch - I feel so bad for my poor husband who puts up with me through all this @#$%^.
Oh yeah, and I also hate the joint pain! movement has become something that is difficult, and I end up not knowing if it's because of the letrozole or have I hurt myself somehow and don't even know it.... frustrating.
Is it OK to take calcium supplements on letrozole??? If so, does anyone have any recommendations as to what is good? I've never taken calcium in my life as I've always had super duper bones, but I'd like them to stay that way....
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Gumby, my doc put me on 600mg calcium with 400mg D3 a day to maintain my bones while on femara. I already have osteopenia on my spine, so he was concerned. We will scan again in 3-6 months and see how it is going.
I am also joining a gym, since weight lifting can help maintain and even build bone.
I am having some joint pain as well. It comes and goes in unpredictable ways, but I find that moving, even if I have to move a bit slowly, helps.
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My doctor told me to take 1200mg of calcium a day along with magnesium and zinc which help the body absorb it (so she said). So I take a supplement that contains all three and space them out over the day with one in the morning, one after lunch, and one after dinner. She told me that if you take them all at once, your body can't absorb it all and you just eliminate a lot of it. This way, your body is more likely to utilize it. She also told me to take VitaminD3 so I've been taking around 3000iu of that a day also, some of which is in my calcium supplement and the rest in gelcap form. I spread those throughout the day also.
I have really found that exercise is helping my joint pain, but I do still struggle with fatigue (though I still have some!). Since I feel my best in the late morning, I exercise then and usually need a nap in the late afternoon.
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It's important to take nutrients, such as calcium and magnesium, on an empty stomach.
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Wow...my doctor told me to take them with a meal. Hmmm...
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I can not handle those big old calciums on an empty tummy, it doesn't like them! so I eat something even if only a bite of a muffin or piece of bread first, then all is fine
actually, lately making a flaxseed walnut and apple muffin that is small but fine on the tummy as my b fast
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I looked it up online and everything I read said to take it with a meal.
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It depends on what type of calcium you take & what other meds you take, especially high blood pressure meds.
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I take my high blood pressure meds right before bedtime so I'm not taking that with food or my calcium. The articles I read said that if you take calcium carbonate, you should take it with food. If you take calcium citrate, you can take it with or without food.
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Anyone have suggestions to deal with the joint aches ect in your hands? AT first on femara it was my feet and ankles and walking helped that a lot and it is managemable, but not after 3 1/2 years my hands feel like I am 90 with arthritis in the mornings- once I get going and moving it lessens but it actually wakes me up during the night. I play the piano which also helps but that is also where I feel the effects the most....
Any suggestions?
I take 2500 Vitamin D3 daily, multivitamin and Calcium supplements
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Anyone had issues with dizziness? I've been on letrozole (the hot pink generics) for 5 months now, and only in the last week have I started feeling dizzy. Not room spinning dizzy, but for instance if I reach too far I get off balance very easily. Doing my standing yoga poses has been a bit of a challenge...I feel like my legs are strong enough but I definitely have some difficulty holding the poses.
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KristyAnn I have found that fish oil and glucosamine help with painful joints. In Australia I can get from a Compounding Pharmacy a tablet called Traumeel. It is a natural anti-inflamatory and does work wonders with painfull joints as well.
Cdfr I had dizziness a couple of months after starting to take Femara. Thankfully it only lasted for about a month to six weeks and then disappeared as quickly as it came with no lasting effects. Hope yours goes quickly as well.
Love n hugs. Chrissy
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Well it seems the reaction to the Femara went from bad to worse. I ended up getting eczema all over and had to go off the stuff completely. My Onc. wants me off all meds for about 3 weeks, and then he is trying a different one. Not sure which one he has planned for me I know he told me the name but can't remember it. Anyways the local drug store doesn't carry it so it's on order and should be here next week Friday. That works out perfect as am to start next week on the new stuff. Lets just hope I cn take this one without the really severe side effects. I made a year and a half on the Femara before my body just said no more, so we will see.
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Kira sorry to hear that you have had such a severe reaction to the Femara. Hope your meds break works well to get it under control. Was the new one your onc has suggested for either Arimidex or Aromasin? Or was it something else.
Love n hugs. Chrissy
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chrissyb my Dr. gave a steroid shot as well as some prescription strength antihistamine type medication pills every 4 hours for a week to get the eczema under control. He just wants my body to heal for 2 weeks before anything else goes in the mix. I think it might be Aromasin but not sure. Isn't Aromasin the one that is the steroid one. All I know is he chose the one least like Femara.
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Kira yes Aromasin has a steroid in it. I sure hope you don't get such a reaction from it. It must have been truly dreadful for you.
Love n hugs. Chrissy -
cfdr - the letrozole makes me a little off balance - not what I'd actually call dizzy or woozy, just that my balance isn't quite what it used to be. I noticed that on the side of my prescription bottle it says "CAN CAUSE DIZZINESS" so don't feel odd.
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gee, I have been dealing with balance problems and did not attribute it to it to the aromasin but now thinking on it
guess to deal with it with excercise and count the days till Dec 2013 when I can end!
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Yes, I get small spells of wooziness here and there.
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I had slight dizziness on Femara so I take it b/4 I go to bed now. It took me 6 months of bad joint pain but finally eased up a bit. I've been on it for 2.5 years.
Terri
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Does anyone have constipation issues from femara?
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Momine.
Yes, I have been having that SE for the past several days. I eat a lot of fiber (whole grains, and veggies) and have always had easy time. Have purchased some dried plums (aka: dried prunes) started eating 2-3 yesterday. I think that is helping.
It is strange how the SEs with this med, come and go. (ie: insomnia, achiness, dizziness now this).
If you read the possible SEs with Femara/Letrozole, there are MANY possible ses.
Vickie
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Vick by soaking your prunes in a little water in the fridge over night you will get a much better result from them. Don't know why, but they do work better this way. Oh and if there is any liquid left after eating the prunes, drink it.
Love n hugs. Chrissy
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I tried to catch up with this thread to see if anyone else has the same side effects as me, but it's too long! I've been on generic Femara since November after having been on Tomixifen for ten months.
I have horrible hot flashes, joint pain (mostly my wrists and hips), lower back pain, I've gained ten pounds in three months. I have a hard time concentrating. I have lots of bowel issues, and had a colonoscopy in March because of it--fortunately, it was fine. I mentioned all these things to my onc last week, and told him that I feel like I'm 70 years old (I'm only 46). He offered to switch to another Aromatase Inhibitor, but I am hesitant becuase I'm afraid it will be worse. Instead, I'm going to spend the next two months working to improve my diet and excercise and see if it helps.
Over the last two weeks or so, I've noticed that my finger nails are very thin and brittle. I've always had very strong, long nails. Now they break off and splinter constantly. I don't remember ever having them so short. Has anyone else noticed an issue like this on Femara?
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Hi codavis, I have sufered a bit with hot flashes, some of them quite extreme, but they seem to be tapering off.
I do have joint pain, but I find that the more exercise I get the less of a problem it is. Yesterday I walked my dogs 3 times, about 20 minutes each time and then took a 45 minute walk without the dogs. I had minimal pain as a result.
Bowel issues, yes, but I am sort of relieved to find out that it is a common side effect. In general, if I manage to eat about 8-10 servings of fruits and veggies, mostly veggies, I am OK. I am also taking an acidophilus pill daily, both to help the bowel and to prevent any yeast issues. I do find it a bit of a challenge ot eat so many veggies, but with warm weather here, it is easier in a way because eating salad is attractive again.
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Question for those of you who have been having joint pain: is it generalized, or specific joints? Last year I had a frozen shoulder and that has begun acting up again. I'm having pain and loss of range of motion in that joint, but only that joint, so I'm guessing it's not related to femara. But I'm loathe to call my PT and start therapy again if this is just a short-term side effect.
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for me, it is the joints that are weakest, that is my lower back and my left wrist. Then again, general achieness. Which all are better when I am regular on the gym and the pool, course I currently am wearing my wrist brace...
who knows if it is old age or the meds? I had terrible night time pain in my left thigh which magically, disappeared when I switched brands of the statin I was taking.
so I am a believer in if one brand of a med is bad, test a dif one
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For me it is hips, knees and lower back. Typically it aches and hurts to get up and walk around after sitting, just like I was 95 rather than 48. Once I move around a bit, it tends to fade. I also sometimes get pain in the joints of my feet. The pain is not extreme, but it is annoying when you are out for a walk, for example.
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For me, the right hip and lower back are the worst aches.
Then I get some rib aches, and then some shooting pains under both arms and aches that move around shoulders. Sometimes hands and upper arms.
I have started getting constipated the past week , but I take so many supplements I can't pinpoint what is causing what
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Hi codavis,
I was on Femara for 21 months and have had terrible hip pain - have to get up from bed and to walk around. My first aid was VitaminD3, recommended from ENDO, after taking it for two months these troubles lessened, but a lot of pains and difficulties remained. My low bone density went up with medicine, after getting Arthritis in finger knuckles, my MO switched me to Aromasin - it's a little better but I think most patients are getting SE's from hormonals and have to cope with.
Best wishes
Usha
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Chrissy,
Thanks for the suggestion. I will try that, I am sure they will be easier to chew!!!
Vickie
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Worst joint pain - left hip, right knee, right shoulder - knee and shoulder had prior injuries, left hip is new. Exercise does help with the pain, for me as well. I'm also getting arthritis in a couple of fingers.
codavis - I had real problem with breaking and splitting nails (and hair) like you, I'd never had nail problems before. I started taking 8000 mcg of biotin each day and both my hair and nails are now much better. (I also take cod liver oil, (and a host of other supplements) which might help as well.)
luckypenny - I had a problem with constipation for awhile, but that seems to be resolved. I drink a LOT of water and eat gobs of fresh fruit and vegetables daily. I cut way back on meat as well - and don't eat any bread/wheat (because I'm allergic to wheat).
My oncologist offered to change me to a different AI, also. But I've resisted the change. I think that no matter what, there are going to be side effects, and I'm kinda used to these - why start up a new batch? I am planning a letrozole "vacation" next winter for a month, though. My oncologist said it was OK, though she also said that I may regret it, as I'll have to go through all the SE's again when I go back on it.
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My onco offered me a vacation from the meds also, I only skipped a couple of days as that was around the time I realized that my pains were caused by the statin and not the bc med
tough to figure out!
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Yeah - I'm used to doing triage on technical problems - not people problems, but have found out that it's pretty much the same process (at least when doing it on myself...). I'm taking the letrozole vacation largely because we're also taking a vacation vacation and will be spending some time with grandkids, etc. I really want to have some energy, and simply don't have a lot of it these days.
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perfect reason for a vacation from the meds to me
enjoy your time away and with the little ones
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Does anyone have lower spine pain on Femara? I thought maybe I pulled something working in the yard...but in the morning it is gone, but by night fall if I do anything half way strenuous...It's killing me. It hurts right now because I finished staining the deck this morning.
It seems to be in the bone where it attaches to the hips bones...right above the butt crack! lol
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TonLee, yes, I had that yesterday. However, I have a really bad back to begin with, so half the time I don't notice, because I am used to more or less chronic hip and back pain. But the pain yesterday was definitely different from the usual one and quite sharp.
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Do you think it is Femara pain? If so, I have to switch to something else. I've been on it about 8 weeks and I couldn't go to the gym this week because it feels just like a bad back injury.
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I don't know. Ask your doc. It may be femara OR a bad back OR a combo. I find that working through the pain usually works pretty well.
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Tonlee
I have lived with chronic back pain since the early 1980s. I use Ibuprofen, and on really bad days I alternate ice packs and heating pad. That seems to help relieve the worst of it. My problem is the results of 4 back surgeries (last 2 were fusions), that also cause neuropathy in my feet, and sciatica discomfort. Anyway, just want to let you know, each of us can identify with you one way or another.
I hope you can find something that will give you some relief..
Vickie
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The whole femara pain thing is really weird. I'll have super bad ankle joint pain for a few months and then suddenly it seems better just to have super bad shoulder joint pain. That will stay for a few weeks to months, and then suddenly that's gone and I 'm on to another different joint again. Weird.
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I hope this goes away weety. It's horrible....and came out of nowhere....
Thanks everyone.
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tonlee - try the alternating heat and cold and (if you can take it) some kind of anti-inflammation pain killer - even aspirin. I've had back pain for years - herniated disk - it sucks. The femara has made it worse off and on, but like weety said, the pain from femara seems to move around. Right now it's not my back.
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Because my hot flashes were getting better the last week or so my onc checked my estrogen level at my checkup yesterday and it was back up in the 200's from 11. I have to go back on tamoxifen now.
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geez - I don't want to worry because I don't get a side effect... the side effects are bad enough!!!
So they are taking you off femara/letrozole and putting you back onto tamoxifen?
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garden - Yep, off the letrozole and back on the tamoxifen. I haven't had a period since my second round of chemo which has been about 21 months ago. I was 51 and having regular periods when I started chemo, I am 53 now. I am really hoping my periods don't come back.
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Man, that SUCKS. How did you do on tamoxifen, and why did they change you to letrozole? (I hear you about periods - but I'm a fair amt older that you - I'm 62 - and that's not a worry)
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garden - They switched me to letrozole because the two estradiol measurements I had during the time on tamoxifen were 5 and 11 and they figured I was menopausal and could go to the letrozole safely. I have been on it a couple months so far and just noticed the last couple weeks that my hot flashes were getting less noticable. I mentioned at my checkup and that's when we decided to check the estrogen levels to be sure they were still low.
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Wow Omaz. You may be faced with the ovary decision soon.
I stopped getting hot flashes on Tamox, and then shortly after my monthly visitor made an appearance.
My back hurts again today. I'm going to take 200mg of ibupro. in a few minutes and see it that helps. And just to feed my paranoia....what does bone mets feel like? Anyone heard? I don't even want to find that thread....lest I take a mental journey to the dark side...lol
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I thought about you TonLee - ! Onc PA didn't say anything about that - she didn't seem to think my period was coming back but we'll see. Are you all recovered from ooph? Rest your back for a couple days by keeping your activities light, that might help.
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Exactly, TonLee, what does bone mets feel like??? Thank you for expressing my fear, because my lower back has been hurting since Sunday.
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I'm going to stop Femara for about 5 days and see if the pain lessens. If not, then I need to make an appt to have my back checked. If so, I'm going to have to find an alternative. Even with Ibupro. I am hurtin.
Molly I don't know what it feels like, but if pain lasts more than a couple weeks, and doesn't seem to lessen over time, then it should be checked out.
My back pain was really bad, went to medium and has stayed there for almost three weeks. Ugh.
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Mollydog, I have not had bone mets, but I asked my MO the same question. She said it is "not subtle", that it feels like a broken bone, very different from just an ache or joint pain.
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I have been having trouble with my balance. I have had mastectomy on one still have the other one . I know girl was having problem and she had other one removed and now her balance is fine. My back bothers me on the side where i still have breast (I have a large breast).I have had checked it is a disk buldging. I have been thinking if insurance will pay having the other removed. When i had the first surgery they wouldnt pay have the other removed because i didnt have cancer in it. Going ask my onc about it see what she thinks. Has anyone else had this problem and what did you do?
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TonLee, that's what I've heard too. If pain worsens and/or persists, it should be checked out.
cfdr, thank you. That description is very helpful.
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nanna - letrozole is known to cause some balance problems, so it may (probably) have nothing to do with your mastectomy, but rather just another SE. The bulging disk can create pain (I have a bulging one in my neck and a herniated one in my lower back) - and there are all kinds of things that can occur due to pinched nerves in your back (caused by the disk issues). Not saying you shouldn't do the BMX if that's what you want and your oncologist agrees, just that what you are experiencing may have other sources and may not be affected by that surgery.
In regards to insurance paying, what type of reconstruction did you have - was not a modification of the non-cancer side offered? Due to the women's health act of 1999, my understanding is that "balancing" should be covered by your insurance company, just as reconstruction should be.
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So now I have a new se that I'm not really sure is one. I have been waking up at night with a burning sensation in my tongue. Has anyone else had this?
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I have bone mets from the start back in 6/09. It's an aching in the bones. I've been on Zometa and it's better, but for a few days after I can feel my bones ache (almost like arthritis) At times my wrist joints and long bones ache and of course back pain as I have spinal bone mets.
Omaz, I'm 54 now and had been on Lupron shots in order to take Femara. I did not want to take tamoxafin. I did them for 3 years, but they check to make sure my Estrogen levels stay down. If not, they will put me back on Lupron shots till I actually go into menopause. It's tough depleting all your estrogen as we feel like old ladies with all kinds of aches & pains.
Terri
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ibcmets - Hi, did they suggest removing your ovaries at any time?
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Hi ladies, I've posted in this thread before & have been reading for some time. I saw my MO 6/1 & it was decided he is switching me to tamoxifen which I started 6/2. I also get lupron shots every 3 months. I am already having less joint pain it's been only 3 days of no femara. Just thought I would share my experience......he switched me because I wanted to use a vaginal estrogen cream because of the issues I'm having with the lady parts. He would only ok the cream if I switched to tamoxifen. Good luck ladies with your journey.
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tenaj - Will you still get the lupron shots with tamoxifen?
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That's what my MO said. I've had 4 shots so far.
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tenaj - That's interesting. I'll have to ask about it.
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Let me know what you here. I figure they put me into instant menopause......now why stop it? What's your thought? My doc said something about a study, I'll have to do some research.
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tenaj - maybe the key factor is whether or not you are having a period?? I went into chemopause at chemo 2 and haven't had a period for 21 months and my estrogen has been at meno levels. It just went up but still no period (and hopefully not). Were you having periods before the lupron?
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Omaz, I was still pretty regular. I was starting with night sweats. I was dx at 51.
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tenaj - I was dx at 51 and still regular as well. I started the hot flashes with chemopause.
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dkerler.... I was changed from Femara (regular) to Generic last June. About 4 months later I DID start to have a burning tongue and....a watery mouth. Went to my regular MD and she told that I was probably allergic to the fillers in the generic meds and to try to go off of them and see what happens. She said it is a gradual build up, that's why it took so long to kick in. My buring tongue stopped !!!!!!
I went back on regular Femara and I just have my normal SE....extreme bone pain everywhere. I have been on Femara for over two and half years.
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Thanks ktmimi2 for the information. I've been on the generic for about 10 months. This med. just keeps on giving. I'll talk to my onc. at my next visit in July if I can wait until then.
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I'm going back on Tamoxifen, for a year.....then 3 on AI.
Onc told me yesterday that Femara not only causes bone pain, but causes muscle problems as well...like making us more prone to injury....which certainly explains all the muscle pain I've had the last two months!
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i hate to say this, but i'm so glad that others have some of the side effects that i have--i thought it was just me! i had arthritis before b/c dx, my rt knee has no cartilage, but i can't see having surgery as i can't tell if the joint pain is from femara (letrazole, mylan) or the arthritis! i crawl out of bed like a 90 yr old every day, when i was an active woman before dx, working on my feet all day as a pharmacy tech. after chemo, surgery and rads, i'm unable to process info as i did before, can hardly walk, i have had that AWFUL thigh pain several nights (no pattern to when it occurs), it's worse than a charley horse, or even a labor pain! i have lymphedema on the left (operated) side, and feel dizzy, and clumsy. i can't even remember what i read in a book the night before. my nails (which were always strong and long) are dry and peeling, have lengthwise grooves on them, don't notice much w/hair as it's very short. i'm tired all the time, and achey. i really don't want a "vacation" from the drug as my onc offered, i want it to be over with!! i still have 2 1/2 yrs left!! i take calcium, vitamin d, multi vite every day. i really hate to complain, as i know there are so many who would be happy to be in my shoes, but i'm just not used to being so inactive and slow!! thanks for letting me vent!
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Mama, I can second all your complaints and at times when around folks who do not get it...lordie but seem to think I should be doing all the same things as before all this junk started!
I used to work a full day, run to the gym in time for a spin class, add a bit of weight training, stop for dinner with a pal and get home after nine each night, wake up the next day and do it again.
lordie, still go to the gym after work, not doing spin now, aches and pains? how do you figure out what is causing it? I had muscle pain in my left leg for 3 years and complained to the onco who said not! Actually, she was correct as when I finally talked to my PCD, we realized it was a statin reaction, switch and much much better
but the balance issues and such are scaring the pants off me now, who do I complain to and do I stop the Als? not yet but...
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i'm really afraid to stop, but i'm just tired of being tired!! my dd has 2 friends whose moms died, one from b/c, one from ovarian. i feel like i shouldn't complain, as i'm still alive. i worked full time, taught sunday school, and watched my grandbabies whenever needed, did yardwork, took care of my house, laundry, cooking, cleaning, right up til i started chemo. then my energy went south!! oh well, nothing like a wake up call!
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Mamma have you tried taking it at night? I also had the mega tiredness and changed taking it at night and I have had no trouble since.
Love n hugs. Chrissy -
I'm not having much in the way of aches and pains, but I'm tired all the time. I've always taken it at night. I've heard that it can take up to a year to fully recover from chemo, and starting letrozole right after chemo, it's hard to tell what's causing what. I was recently diagnosed as B12 deficient, but the first B12 shot doesn't seem to have made much of a difference.
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I confess that I would be fearful of stopping the meds (for me that is aromasin these days) as well and feel like I am so lucky to have gotten away without being told to do chemo
the tiredness, gee right now I am trying my darness to figure out if I can afford to retire, I am 63 but really need to work till 65 for health insurance. Can not believe that work stress is helpful to me at this stage
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proud - I am in the same boat, but a year younger than you. I'm in a ridiculously high stress job, and trying so hard to figure out how I can retire. We're putting our house on the market, and if it sells, then i think I'll be able to retire a little over a year from now. I'm thinking that if I retire at 63 1/2, then I can get Cobra for 18 months until medicare kicks in - of course, there are a lot of dependencies upon who gets elected this fall, as well.....
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Omaz,
Onc never mentioned removing ovaries. Recently went back for pap as was fine down there.
Terri
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Garden, let us both hope that all the pieces fall in place, lordie but never realized when I took a job with a start up company 16 years ago, that the company would be in business but too small for COBRA! Meeting CFP now to see if the pros can work a plan for me that helps.
Best of luck to you on your stuff as well, hope your home sells for what you wish
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i have always taken the letrozole at night, it doesn't seem to make much of a difference. there are ladies at my church who are so spty and in their 80's who get around better that i do. i don't really sleep all that well anyway, b/c of knee pain and stiffness, and neuropathy in toes and fingers left over from chemo. plus, i have to wrap the affected arm nightly due to lymphedema, and it's like a big deal just to turn over in bed!! i keep hoping that some of this stuff will go away when my 5 yrs are up, 2014, nov, here i come!!
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Mamamiaow I had major pain at night due in part to the Femara but mainly due to arthritis. To help with insomnia and pain without having to go to heavy drugs I started using melatonin for sleep and a natural anti inflammatory called Boswellia Serata to ease my pain. It has worked so well I am amazed. Perhaps you might like to check them out for yourself.
Love n hugs. Chrissy -
Thanks Chrissy! I'm going to get some Bosweilla and try it
Good info!
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proudtospin - if we don't get our price we don't sell. We'll then refinance and continue living there until the market recovers more. The good news is that the NW is starting to do well. The bad news is that if we don't sell, then we can't move elsewhere. It's obvious that the economy is recovering, but it was such a BAD recession that it's taking longer than I (and most everyone else) hoped.
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I only started letrozole on April 1 of this year and so far have done pretty well, mild hot flashes, some stiffness on getting up, once up can get around just fine. Then yesterday I had the mother of all hot flashes. My face turned red, eyes felt as though they were bugging out, started to feel faint and it took 30 minutes to cool down. Does anyone have suggestions on how to cope with this?
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GranmaV I ways carry and have stashed in every room, folded fans. I use these to cool off. Take heart they do settle down after a while and if they don't then talk to your doc. I have heard that Efexor ( I think that's the one) does help too.
Love n hugs. Chrissy -
I have trouble with my hands going numb.It happens at night time. I wear braces for carparal tunnel and they still go numb. Anyone else have this problem. Going call onc see if i can see them.
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I have trouble with my hands going numb.It happens at night time. I wear braces for carparal tunnel and they still go numb. Anyone else have this problem. Going call onc see if i can see them.
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Nanna, I had some problems with numbness in my fingers. Not sure if it was neuropathy from the taxotere or from the femara or a bit of both.
Recently I realized that I was probably anemic, so I started taking feroglobin, an iron supplement syrup that also has a bunch of B-vitamins of various kinds. After a week, my hands had also improved noticably. So you may want to try some B-vitamins.
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Good morning all.
I am wondering if anyone has had excessive nose bleeding while on Femara/Letrozole?
The past 2-3 weeks I have had several, when I was at my PCP last week for a physical I mentioned to him that I am getting them, didn't get much of a reaction from him. Then this morning, I am wondering if it could be a possible SE.
Will call the MO and check with him.
Thanks for any input you can give!
Vickie
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Hi Vicks I haven't had major nose bleeds but I have had nose bleeds. Prior to being on Femara I never had nose bleeds so I'm guessing it could be a SE.
Check with your onc.
Love n hugs. Chrissy -
Have any of you heard of anyone taking femara who had a stroke? I have a friend taking it who just had a mild stroke. Scary!
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Does anyone here know if losing toenails is a SE of letrozole? I was switched from Tamoxifen in April to Letrozole and since then I have lost 2 toenails. Now I have a swollen toe that is making walking difficult. Have already been to a podiatrist and had xrays which didn't show any type of fracture. Now going for an MRI. My docs seemed stumped and so am I.
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I havent lost any toe nails but two of them have gotten very soft and deformed. I never thought it was a SE of Femara...... maybe.
Let us know how the MRI goes.
Love n hugs. Chrissy -
since i had chemo, some of my toenails are really weird, like peely, and some of my toes have neuropathy, kind of tingly. i try to keep nail polish on the odd looking toes, as we wear sandals here most of the year!
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I'm having nail issues too, but I thought it may be a delayed reaction from Taxotere. My fingernails are thin and break easily.
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Hmmm, I've been on Femara since Sept 2010 and have had toe and fingernail issues beginning with chemo before I went on Femara.
Now all of my nails are very hard, yet brittle. If I let my fingernails get any white on the tips, they break off. If a toenail gets a fraction past the nail-bed, it will just lift off.
My Dr has checked and I don't have a fungal problem. She just suggested to keep them very short, which I do.
So maybe it is due to the Femara as when on chemo my toe and fingernails just all fell off - ha, like my hair!
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I think the dry nails, hair, skin may be a result of the complete removal of estrogen from our bodies.
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Ginger, maybe it is the lack of estrogen. My skin is dry also but hair is fine.
Sadly, femara has also taken away my desire for one on one with my dear husband. Luckily, he understands and says it's ok, but in fact it is NOT ok with me. I miss those special times. Maybe that's why I am such an ball of emotions most of the time?
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Hi Debbie,
It's nice to see you again! My MO switched me from Femara to Aromasin because of arthritic fingers and toes, bone pains as well! He said Aromasin has less SE's. After some easier months I must say the SE's went back - a little changeable, not bones but joints, arthritis is the same.
As for your desire, please try to maintain yourself. Don't let it go! Try to undergo your habits little by little by being reminiscent of pleasant times, using all's fair in love! (O, my English, I hope you will understand me).
Best wishes
Usha
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in regards to fingernails - mine were breaking much more than they had in the past. I started taking biotin (8000 mcg per day) and that has helped immensely.
in regards to closeness - IMHO it's really important (as Usha says) to keep it up - even on days when you may not feel a lot of desire - once things start up, the desire comes as well - and to be honest, even if there isn't a lot of desire, knowing that you are pleasing your husband and helping him feel close to you can be a real intense pleasure all of itself.
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My onc wants to switch me from tamoxifen to Femara. When I looked at the Hormone Therapy Comparison Chart on this site, Femara had more side effects than Arimidex or Aromasin. Why did your onc put you on Femara instead of the other AIs?
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I'm on Femara because I took the Arimidex first and besides the normal side effects, I became depressed and anxious. She said to switch and see if I felt better on a different one and I do have a lot of the usual side effects but the depression is gone and it's made a huge difference in how I feel. Much easier to deal with the SE's when you're not depressed...
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you know, I totally agree that dealing with the SE is easier when you are not depressed
I started on femara, switched to aromasin after a year as I was getting leg pains which I atributed to the femara but wonders of wonders, turned out to be side effect of a statin (zocor) which disappeared when I stopped that med
have had a bumpie year but have managed to get control over several persistant health problems that dated to before all this stuff started
guess what, feeling much better and even though my mamo had new calcifications this week. I am dealing with it much better
suggestion, before any and all big tests, treat your self to a massage, facial, manicure or pedicure or maybe all.
does wonders for depression but really addicting in a very nice way♥
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I was catching up on posts and I can relate to almost all the SEs....I just lost a toe nail...it just lifted off. There's a thin layer of new nail under it.
While traveling my meds got screwed up and I was having lots of issues....just went back on Femara nightly which works best for me....it was causing depression and lethargy during the day. I also take bupropion and so I take that in the AM so I have energy. It works.
I ran out of Femara for about 5 days - someone threw away my refill - now I started and got the SEs again...warm flashes, the angina-like pains that are scary; aches, lack of focus...inability to multi-task...and sore thumbs again...exhausted but can't sleep.
I had a tough year at work but I hardly missed any time post surgery during rads and after...it took its toll though as I was disorganized, messy, procrastinating....I want to tell my boss and assistant boss about my challenges and meds but I feel if I do that, I will be compromising my position and may raise doubts or lose respect. I need my job 2 more years to get medical for life.
Anyone else have job challenges? Anyone speak with bosses? Most know I had bc but I was so intent on being "normal" and not sick that I did not take time to rest and heal.
Joan
PS - I also had nosebleeds - I think it's from drying of skin. Not sure. -
Joan, I work for myself so I haven't had to deal with bosses, but I would certainly consider it a job challenge. I worked my first 8-hour day this week since August. And I used to be a workaholic. Now I am too tired, too dizzy, too distracted, unable to focus. I did recently discover I need B12 shots, but so far they have not helped.
I had the nosebleeds and nail issues from chemo...didn't even know they could be femara SE, too.
I wonder if it's worth talking to a lawyer first who is familiar with the ADA. If your company can make a "reasonable accommodation" for you, maybe reduced hours/responsibilites until you stablize on femara, then you might be able to take a bit more time to heal.
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@sling99: I was having lots of awful, and ever increasing, SE's from tamoxifen, so my Onc switched me to Femara on Valentine's Day as I am officially menopausal by a few months. The Femara has been mostly fine, even my hot flashes have diminished to almost nothing for the past 2 weeks. I have been having increasingly worse joint/bone pain since about a month into Femara. It was disrupting my sleep and my physical abilities, everything hurt from the neck down all the time. I saw my Naturopathic Oncologist this past week and told her about it. She said it was a very common SE and indicitave of the start of osteoporosis symptoms. She prescribed Osteo-K, a natural form of Boniva type drugs. I tried it with no expectations and voila', the pain diminished 50% after one dose and after 2 days, I am nearly pain free. It is unbelievable. I was eating Motrin like candy, sometimes it seemed to help, sometimes not. I have no other health issues besides the BC, I exercise regularly and do yoga. I will post again if anything changes, but I wanted to share this with all of you on AI's. You can order it directly from the manufacturer.
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phxsunshine:
Thanks for the info on Osteo-K. I've been having bone/joint pain too started out not too much but lately getting a little worse. I'm going to ask my MO about it on Monday. Now I'm fighting the beginning of a nasty summer cold, yuck!
Thanks again for sharing your experience with Femara, I appreciate it.
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cfdr,
Thanks for the encouragement to take it easy. I worked so hard to not miss any work and do all I usually do and more...so it is not physically apparent that I am dealing with SEs.
I am off from full time work for 2 months and I hope that time will be helpful for readjusting to the drugs again.
I am feeling overwhelmed by all that has been neglected and needs to be done. I just want to sleep for a few days.
It sounds like you took off some time from business. We have similar diagnoses but I did not take chemo. If I had, I think I would have taken a semester off.
Hope you are doing well.
Hugs,Joan
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Hi,
I am on Femara for 9 months already. At the beginning
everything was fine - almost no SE's. After being on Femara for three months I started getting some bouts of join pain. It
would last for a few weeks - and then disappear
without any obvious reason. Now I have very bad pain in my hands at night -
have to wake up and exercise my right hand. I know for sure that the pain is a
result of working with the computer mouse - it is diminishes over weekend. I
try to make some breaks during the day while working on PC - it helps somehow.Also I noticed that physical work with my hands helps a lot -something
like scrubbing the floor, pulling the weeds (works the best!).And regarding the nails - I used to have very strong and
long nails all my live - until I started my BC treatment (although I didn't
have chemo). I can't take calcium - something with my guts (I have celiac). So
I drink almond milk instead - at least a couple of glasses daily. My nails are
back, my hear is getting better too. I even had to shave my legs recently - I
didn't have to do it for many months, it didn't grow there since I started
Femara.Does anyone have advice what works with Femara SE's? Would love to hear it.
My best wishes to everyone :-)
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OK, so much for my advice. I woke up to vision problems on Sunday morning. At 2:30 AM on Monday, I awoke to a sharp pain in my right elbox which ran down the outside of my arm to my pinkie finger. Upon fully wakening, I realized my entire right side hurt, from the top of my head to my toes. I didn't feel ill or have a headache, things just hurt/burned. I was also very fuzzy headed and didn't get much done yesterday, I was unable to drive. Called my Onc and he has taken me off the Femara for 2 weeks, starting last night. The good news is, all the symptoms cleared up overnight. Nothing is permanent, so that's a relief. I have a friend who has bad neuropathy in her hands from 6 weeks on brand name Femara, that has never gone away. So, I feel like I've dodged a bullet now.
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Hi, all. Thanks for this thread (and the ones about the other AIs). It's both scary and reassuring to read about other experiences.
I started Femara (2.5 mg generic letrozole, dark gold) on May 1, 2012, about 6 weeks post my BMX surgery with DIEP reconstruction. While my nodes were technically negative (no tumors or clumping of cells), my BS did note that there were cancer cells found in a couple of them (they took 3) and has really urged me to do whatever my MO recommends for treatment. I did not have chemo nor radiation but did have the BMX as a risk reduction.
Initial opinion on the Femara is that I am handling it fairly well but not without some side effects. I should note that I also started Lexapro (10 mg generic escitalopram) about 5 days prior to starting the Femara, on my MO's recommendation. I take both drugs before bed based on my MO's recommendation, and because of some of your posts.
The following side effects are being listed because I can clearly attribute them to the Femara (and sometimes maybe the combo with the Lexapro) versus any of the other drugs I take and have been on long enough to know they are not causing these particular side effects.
Nausea: Both the Femara and the Lexapro had me constantly nauseous for 3-4 weeks. It was mild but uncomfortable, and I did feel better if I kept a little something in my stomach. I didn't have much nausea on the Lexapro alone (but a bit) but it definitely increased when I added the Femara so I'm guessing that, while I was getting it from both, the Femara kicked it up a notch. That has almost completely gone away in the last week or two.
Dizziness/Lightheadedness: This has gotten to be a constant issue and I have learned that I cannot get up from a sitting or laying position without standing a moment to let things settle down. Some days it is worse than others and it takes a lot longer to settle down, but it is a constant regardless of the severity. I do occasionally get lightheaded/dizzy when just sitting or standing but that's much more rare.
Fatigue/Unusual Tiredness: I still spend 1/3 to 1/2 of my day in bed. I usually feel better in the morning and use that energy to do a 45 minute/2+ mile walk, do some garden work, housekeeping and/or errands, etc. There are some mornings where I don't feel less fatigued but I make myself do the walk, some housekeeping and my garden watering anyway. I guess I just feel better psychologically knowing I was a little productive! By mid-afternoon I usually can barely keep my eyes open and just feel so tired I can hardly see straight so I get my shower, get into my pjs and lounge around the bed or couch. This still could be some leftover healing from my surgeries in late March. Some days are better than others and I allow myself to go with the flow on that.
Sleeplessness/Waking Up: I've rarely had trouble falling asleep until I started the Femara. Now I do, plus I find myself waking up anywhere from once to several times a night with my mind racing. I used to use Xanax (.25 mg to .5 mg) before I went to bed for a while but recently decided to try melatonin instead. That jury is still out. I find that the melatonin causes more nausea and dizziness and I feel really "flat" the next day, plus doesn't seem to make any difference in falling or staying asleep so far. I'm using 3 mg and may back it off a little more and give it more time to work before I decide whether to continue. I just don't want to keep using the Xanax on a daily basis unless I am really anxious.
Joint/Muscle Pain: This has been interesting. I don't have much (or any) on a lot of days but every so often everything just seems to hurt. I do have a partial tear in my left shoulder rotator cuff (getting that addressed got back-burnered with my cancer dx) and it does hurt a LOT more than it did before starting Femara. My MO did suggest glucosamine if I experienced joint pains but I haven't tried it yet. Mostly, it feels muscular when it happens, other than my shoulder. Again, this is (so far--knock on wood!) a much rarer SE for me.
Foot/Lower Leg Neuropathy: This took me totally by surprise. I often have really cold feet and wear little sockies in bed when they are that way; however, about 3 weeks ago I noticed that my feet (staring slowly from my toes and working its way up to my ankles) started feeling tingly and like they were actually burning--even though they were cold to the touch. Then they got so sensitive I had to take off my sockies because anything touching them felt awful...not even sure how to describe it. This seems to be getting slowly worse. I don't have it every day but I seem to be having it more and more often.
Hot Flashes: Maybe because of the Lexapro (one of the reasons it was prescribed), these have been mild and not frequent. I do get them and definitely KNOW when I'm having one but they are mild and usually only once or so a day at most.
Headaches: Definitely have had more headaches that seem to last a lot longer and be more severe than I am accustomed to. Sometimes it takes a day or two to ease up, even with things like Excedrin. Maybe twice a week?
Weight and Fluid Retention: Have to combine these two. I have been working to lose weight since January 2011 and am down 40ish pounds since then...at least 15 pounds of it since my surgery in March. What I have noticed is that I only tend to gain any weight if I am retaining fluid AND that I retain a lot more fluid on Femara. My SE sheet actually instructs me to not add additional salt to my food (I love salt...that's been a hard one) and I have noticed that if I do eat the occasional salty things, I almost immediately gain about 4 pounds and it takes 2-3 days to get back to my starting weight (and drinking LOTS of water). My ankles don't swell but my hands do, and it also increases the edema in my ab area (still healing from surgery). Despite my weird schedule of working out vs. laying in bed, I haven't gained any weight and am hoping to continue that trend. I would still like to lose another 15-20 pounds but we'll see how that goes. It's obvious that I will have to learn to love non-salty foods, though.
Vision: I definitely have begun to notice that my vision seems to be changing. My normal glasses broke about a week ago and I put on a pair of older glasses and actually saw better out of them! I'm going to watch this (no pun intended...geez) and will make an extra trip to my eye doctor if necessary in the next month or three.
Dry Skin/Nails: This has gotten worse and I spent a lot of time (and money) at CVS looking for good moisturizers. Without getting into TMI, I've also noticed some vaginal itching and that has been helped a lot by Vagisil anti-itching cream and wipes. Thumb nails have also developed significant ridges and the other nails are starting to.
Bone Density: I already have osteopenia (just shy of osteoporosis) and incidentally had already had a bone density scan right before being dx with the cancer, so we do have something to compare in the future. I started taking Fosamax in January, along with the calcium/vit D3 supplements. While this is a definite concern, I was more comfortable dealing with this (not likely to kill me suddenly/unexpectedly) issue than the possible issue of blood clots on Tamox. (my mom has a history of severe blood clotting).
Cholesterol: Mine is already slightly above normal and I started a low dose of Simvastatin in January. My PCP is monitoring my cholesterol levels every 4-6 months now that I'm on Femara.
Blood Pressure: Also a little above normal, I have been on a low dose of Lisinopril for about 4 years. I've noticed that my BP seems to be running higher since starting the Femara so am monitoring it at home, as well as at the frequent (sigh) doctor visits and may need an adjustment. You'd think with my exercise and good eating program that would have gone down so I'll be a little concerned if this is a trend.
So far, no noticeable hair loss.
Hopefully, this list will help someone else. I will be seeing my MO in early August and plan on bringing my "list" at that time. I suspect some things will get better and some worse but it's an interesting journey (HAH). My plan is to try to stick it out the whole 5 years. I know I have options with the other AIs and will do whatever I need to do as things progress. My husband and I frequently discuss the quality of life vs. the odds but as long as I can deal with the SEs, I will.
Will post (less lengthy) updates in the future. Well wishes and healing Light to all you awesome women!! Elisabeth
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Hi Elisabeth,
There are a lot of side effects to choose from, aren't there? I identify with the sleeplessness I also take Letrozole, a mild statin, and bupropion. I hope you find the right drug combo.
I had to split mine into separate doses (morning/evening) and it worked.
Joan811 -
Hi Elisabeth,
I started lexapro in September (between rads and chemo) and femara in January. I didn't notice any SE with the lexapro, and did find a decrease in anxiety. I'm experiencing a lot of fatigue post-chemo, which could be a combo of femara, post-chemo and a B12 deficiency. I have definitely noticed the dizziness with femara; it is worse with heat or exercise. I have a history of migraine, and although I get some low-grade headaches, I have not had a severe headache since starting femara.
I take melatonin and it really helps me. I take it around 8:30 and go to bed some time between 9:30 and 11:00. I find it takes at least an hour to kick in; if I take it right at bedtime it doesn't seem to help.
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cfdr, I took Lexapro pre-diagnosis and it totally wiped me out and I felt pretty down and out. My RN wanted to increase it but I said no, I want off and switched to bupropion which has almost the opposite effect. Since Femara makes me feel very down and tired I take it at night; and the bupropion gives energy during the day. My SEs are moderated now. When I feel the depression coming on, I recognize it now and I just get busy or go out. No giving in, not if I have to take this for 5 years or maybe more.
Joan -
I'm also going to try ginseng for energy...read a medical report recently that said it has tested well. Also read a recommendation for cancer-related fatigue that said that exercise should not be intense enough to get out of breath. So I'm going to try walking at a much slower pace (especially on hills) even when I have energy to walk faster....see if that helps keep the bouts of fatigue at bay.
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I've been on letrozole for 7 months now and find I'm getting more and more tired. I wake up tired and go to bed tired and in between I'm tired.
This week I've also started waking up with a headache every morning. It goes away within about 1/2 hour - but still... The worst problem I've had recently, though is that I get a muscle spasm/pain in my hip on occasion that almost takes me to my knees. I love to walk, and find that I'm afraid to do so, as I don't want to fall on my face - or break out crying amongst a bunch of strangers....My sleep has become especially erratic. I've never had trouble falling asleep and still don't, but I wake up about every hour to hour and a half just aching. Then I'll move around some, go back to sleep. I honestly think the tiredness I'm experiencing has more to do with the inability to have good sound restful sleep than a direct result of the letrozole. Of course, I also think the lousy sleep is a direct result of the letrozole, so either way it's letrozole...
Though I'd love to blame my weight on letrozole, it seems just about the same as always - easy to gain - hard to lose.
Ysa - I highly recommend taking biotin, as it helps with both nails and hair issues that arise from the letrozole.
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I love reading how everyone is coping with their particular symptoms, and the great suggestions that come out of your experiences. Thanks so much for sharing.
Been really trying to figure out why I feel so weird the last 3-4 days. It's very possible that it has a common cause as I've been experiencing a lot of symptoms of vasomotor rhinitis (which I have, along with allergies) for the last week or so. There are no real allergens around right now, so I'm kind of at a loss to explain why the rhinitis has kicked in so strongly (sneezing repeatedly, runny nose, post-nasal drip). Am quite sure I don't have a sinus infection, however.
Am extremely tired, a little shaky, and seem to have a lot more lightheadness/dizziness (mostly upon standing but actually had some while lying down last night). Also, off and on sore throat (probably due to the rhinitis). Last night I had what felt like very mild electrical surges going through my body--sort of like all my nerve endings were super sensitized and all my hair was standing up. Seemed to start when I brushed the side of my left foot and nearly jumped with the touch. Since we had a thunder storm building with a ton of lightening right at that time (which hasn't happend here for quite a while), I joked with my husband that it felt like the time we had lightening strike really close to us during a thunder storm many years ago. Who knows, maybe I really was reacting to the charged air in the area. I'm fairly confident that no one will ever seriously list THAT as a side effect, though. LOL
Have used Xanax before bed the last two nights and slept much better but the other stuff seems to have intensified. Hate whining but it's kind of a relief to share this stuff out loud rather than having it sit in my head and stress me out. My husband is really kind and loving but I know he feels useless to help (which he kind of is, other than checking on me and getting me things when I really need him to). I do see my MO the first week of August and want to wait until then and see where I am with all this before mentioning anything. On one hand, I don't feel that anything is SO seriously out of whack that I need to change AIs (except maybe the fatigue), but I am definitely keeping my fingers crossed that this, too, shall pass.
Again, I lurk a lot and really appreciate your posts. Don't feel as if I particularly need answers to anything right now (although biotin has made it on to the list for my next shopping trip) but I am grateful for you "listening". It means a lot.
Sending Light and healing energy....
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Gumby, joy of joys, I had something similar to that hip spasm you describe. It happened today. I used to get it as a teen from having scoliosis, so when it happened today I wasn't sure if it was my back or the letrozole. I am leaning towards blaming the femara, since my back is in fairly good shape these days.
Nice ot see you Elizabeth, and I agree that this thread is very helpful.
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I am starting FEMARA tomorrow. Had a lumpectomy & 12 nodes removed May 24th and this will be my first treatment. Radiation starts July & I have opted not to have chemo....potential side effects seemed to far outweigh the benefits for me.
After reading all of these posts I am so afraid of the FEMARA side effects....I have delayed filling my perscription for 10 days because of this fear. Sometimes I wonder if I should just risk it out and take nothing. I am guess I am being a big baby.
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Isabelle, I dragged my feet a bit too. But really, it is not THAT bad. Also, if for any reason you really do have horrendous SEs, you can stop. It would be silly to skip it if it turns out that you don't have any serious SEs.
From what I have read so far, those stupid little pills are really effective.
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Hello Momine...thank you for that....I will remember to call them "stupid little pills". You made me laugh through the tears.
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I have been on femara for two years now and may be one of the lucky ones but I have had minimal SE. Due to chemo I have neuropathy in my hands and feet so have had a lot of pain from that. Talked to my MO on my feet pain and he sent me to a podiatrist. He prescribed Metanx for me and boy that has worked. The Metanx is a prescribed vitamin that has combination of folic acid, b6 and b12. My toe nails are in bad shape but that was due to the chemo, my finger nails are not as strong as they were but doing ok.
I take femera at night since is was making me feel disoriented during the day. I also take melatonin at night to help me sleep. At my last bone scan I did have 13% bone loss in my lower lumbar L5. So now I am getting every 6 months a zometa infusion to boost bone production. I see my MO next month, so I will ask him about the Boniva product.
There is going to be SE from any thing that is being perscribed for BC maintenance. After I read about all the SE I was thinking no way. But I had trust in my MO prescribing what he thought I would need and he has be right so far.
I do not get on the boards very often but each time I get on, I learn new things. Thanks ladies.
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Isabelle - please do not be so afraid of the SE's that you don't take it. The stupid little pill can save your life - what are a few SE's compared to that possible downside??? Most of the time I don't gripe about the stuff, as there's always going to SOMETHING that we'd rather be different, right? But I think it helps us all to know that we aren't just nutso, and the weird things that are happening to me (or you) are also happening to other people.
On a scale of 1 to 10, with one being no side-effects and 10 being the worst imaginable, I'd put my reaction to letrozole at about a 4. My reaction to tamoxifen was about a 9. But my reaction to some OTC meds is about 6 or 7, so again on a scale of things, letrozole isn't huge (for me).
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Well, I tried to read all 110 pages of this thread and got to about 80 before I wimped out. I have a new prescription for Femara. Stopped at Walgreens today to see if I could get any information on the generic fillers, and got some inserts. Lots of information in those, but nothing about fillers. They only have the pink one (Myla, I think?), so does anyone know about the fillers in that one?
Between a bout with chemical sensitivities about 10 years ago, menopause about 8 years ago, and Sjogrens diagnosed last year, I think I have already been through most of the SEs everyone is talking about. Felt almost normal a few months ago, then the BC diagnosis. I am so not ready to start feeling bad again.
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Diana- I am sending you a PM.
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Hi everyone: I've been on Letrozole for three months and the SE for me include thinning
Hair, slight numbness and tingling in feet and finger tips, bladder pressure...this. one only lasted a few weeks, and my latest..just started two days ago, nausea....can any of you lovely ladies give me some suggestions......PLEASE...it's putting me off my food...what the hell....I gave up meat, my red wine and my cigs(givining up the cigs. Of course, is a good thing but what is left is FOOD ...ladies please give me some tips in dealing with the nausea...thank u -
I'm experiencing some nausea myself, lately, and I've been on Femara a week shy of 3 months. I've been trying to add some ginger to my diet (gingerale, ginger snaps, ginger tea) and it helps for a while. I've also found eating smaller meals, especially for dinner, helps some. Once in a while I take some compazine I have leftover from chemo, if it gets severe. I'm hoping the longer I'm on it the better this gets. Also Omaz posted a chart a few pages back of the fillers in each manufacturers version of generic Femara, I'm thinking of asking my pharmacy, to order a different one. Right now I take the pink one from Mylon. It seems to have more fillers than some of the others. Maybe she wouldn't mind posting it again, so we don't have to search through all the pages to find it.
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Hi GrandmaV Thank u for replying. I am in Canada and my company is Sandoz, but I will research what else is in here. Funny, I am just shy of three months also and it just started a few days ago. I will, try some of your suggestions although I do eat raw ginger everyday. Thank u again.
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Here is the list. I think there are more as well. Control + will make it bigger on your screen and Control - will make it smaller
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Thanks so much Omaz. I'll be sure to copy it this time.
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I'm posting this not to scare anybody but to let you know what happened to me in case it happens to you. After 3 1/2 days off Femara I felt really great, then over a 2 hour time-span, my chest and back began to hurt, 3 hours later I thought I was having a heart attack, seriously. My husband took me to the ER on Thursday afternoon. My blood pressure was very high. They ran a bunch of tests and kept me overnight to run more and to keep an eye on me. Tests thru the night and a CT scan in the morning all showed my heart is fine. They released me Friday around noon and all that day I felt like my bones were breaking, I hurt so bad. The cardiologist and my oncologist both prescribed vicodin, which I only took 1/4 tab twice, to get some sleep. I awoke this morning and the pain is almost totally gone. This is the craziest thing that has ever happened to my body over the course of a few days. I don't know what is going on inside me to produce these symptoms, but I am hoping that if I relate this and it happens to anybody else, they'll know they weren't the first.
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Isabelle,
It can be overwhelming to read about all the side effects at once. Every drug comes with a list of potential SEs.
Drugs that alter hormone levels will cause observable side effects, but often the body and mind adjust.
I took AIs because I did not take chemo and had rads on one side...I want to do what I can to prevent recurrence on either side; and more extensive surgery.
When I started with Arimidex, I immediately had joint pain in my thumb/palm joints - arthritic-like, and that never went away; but I hardly notice now. During rads, shoulder pain. I switched to Femara after a rads break. I definitely feel more hormonal symptoms. Warm ensations, especially bad in the heat and humidity. Occasional moodiness like PMS/menopause; inability to focus and food cravings. After a few weeks on Femara, and adjusting the time of day I took it, my body adjusted. I never have these all at once, and often no SEs. I know I'm not the same, but if I keep mentally and physically busy and watch carefully what I eat, I am fine.
Sending hugs and prayers for all who are starting Femara.
Joan -
Question - has anyone experienced increased underarm odor or sweating with Femara?
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I am starting my Femara tomorrow...... so worried.
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You'll do fine. Keep in mind what it's doing to the cancer.... that manages to keep me from EVER forgetting to take one.
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I agree with garden....whenever I have a little joint pain or one of the hot flashes that I get, I think......take that you sneaky breast cancer.....here's another Femara for you today!
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I like that, Filter Lady....and you just reminded me to take my Femara before bed. Thanks....
Isabelle, sending positive thoughts and hugs your way. It should be ok for you. If Femara doesn't sit well with you, there are a number of options....keep a little journal the first month if you can so when you talk to your MO you can both decide if it is the right choice. (I keep notes on my phone for everything)
Nite all.
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Hi Joan:
I, too, keep notes, list of medications, etc on my phone. If I had a piece of paper, I would either forget it or lose it, lol.
I take my Femara in the morning since it was causing sleep issues for me.
Isabelle....I'm hoping if you have any SE, they are mild.
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I took my first little pill this a.m. & so far at least no dizziness or nausea which the pharmicist cautioned about. He said I would know today....so far so good. My biggest problem right now is fear. You wonderfull women are helping me with this.
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Atta girl, Isabelle! My doc claimed that SEs would not start until I had been on it for 6-8 weeks. I still think some started earlier than that, but so far, 3 months into it, I have not had anything too horrible. Most of the SEs are more annoying than really dreadful.
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Diana
I'm so sorry for what you are going through. I know what it's like to have multiple health issues, and then feel like we are dreading' the next med' which may actually make us feel worse. I'm sorry I don't have any advice or info , but did want to send my hugs !
(((HUGS))) -
Filter Lady, I lose everything...especially in the past year. I have a long list of things missing since BC...some important.
Momine, my SEs did kick in early but then they leveled out.
Isabelle, it's a pill that you should take regularly because your body maintains a level of the drug to suppress estrogen. But if the drug is not right for you, it is not so serious to stop while you find another drug under the direction of your MO. So knowing you have choices can make it more acceptable. I choose to take the drug and accept the SEs for now...if I note any debilitation (bone loss, physical changes) I will consider my options.
I want to have a healthy life and lots more birthdays!
Hugs to all,Joan
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Hi all,
I've been off BC.org for some months because other things in my life were more important than bc. Don't you love that? I've been able to more or less forget about it, barely noticing my lopsided bosom and little pink scar, and am just thinking about it now because a month from now will be the anniversary of my diagnosis. To catch up, I read the last few months of this thread.
I have been taking generic femara (Breckenridge brand, mustard yellow) faithfully since last October. The only side effect I can be SURE is from the med is achey muscles, specifically my glutes, and one ibu takes care of it. I do have that old-lady feeling when I get up from a chair, but I already had osteo-arthritis in my knees before bc so I'm not sure I can blame it on femara. I only I feel sure I can blame the muscle aches on the drug because I had never experienced them before taking it, and they began the very next day.
My main reaction to what I read here today is to notice that some of the SEs discussed are things that often appear during middle age (achey joints), during and after menopause (dry skin, insomnia, osteopenia), or with weight gain that may have come from stress eating or diminished activity caused by chemo or rad fatigue. We know that those symptoms are known to be sometimes related to AI use, but we don't know whether we would have them even without the drug. Other symptoms that are not on the official AI list may be related to other things in our lives, other drugs we are taking, or the interaction between them. Drug interactions are complex and not always well-understood, especially those involving herbal medicines -- they may be natural but they are powerful! One person taking a drug, having a symptom, does not prove causation. It takes careful analysis of a lot of data to prove causation.
I'm not saying we shouldn't ask our MOs about problems we're having (reporting SEs is crucial), or ask them to consider other meds (I've often read on these boards that someone got relief by changing AIs). I am certainly not opposed to people posting their miseries on the boards. We all need support and sympathy! Suggestions that we give one another can also be very helpful. We need to share our questions, doubts, and concerns, and help each other, and bc.org is a wonderful way to do it.
My concern is that we may be too quick to assume that all symptoms are AI side effects, and focus too much attention on how the drug is harming us. Solid statistics show that AIs are likely to improve our survival odds a lot. If you're reading this because you're told you need an AI, please don't hurt your own survival chances by jumping to the conclusion that you'll get every SE on the list. There are many thousands out there like me, cruising along with minimal problems related to the AI we take every day. As people sometimes say on the forums, those of us without problems are too busy living our lives to visit bc.org as often as we did when bc treatment was dominating our days. So, listen to the many wise women on here, and allow those in pain and misery to vent and get support without assuming that the worst things will all come your way. They probably won't.
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Hi everyone: I have been on this site many moons ago and Treeskier I am with you. I tried to stay off all forums except the exercise thread. Now I need my femara sister's help.
Crazy question: Has anyone experienced great sensitivity to hot and cold in the teeth and gums? Also I had novacaine for a cavity the other day, dentist put air to see if I was numb, no I was not. He told me to see a doctor and get a blood test. Also has pain in ribs been an issue with anyone? I am driving my PS crazy with these pains and he also has me seeing a Pain Management Dr. who has already injected me with kellogg stuff to break up scar tissue. I have been on Femara for almost 2years and this is the first time this nonsense has started. I am on the generic, little pink pill, never had a problem with the real pill. Has anyone experienced any of the problems I have recently encountered. (I was on Arimidex for 6 months and had to go off - that one killed me).
Thank you.
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Ronqt1-I have not had any noticeable teeth/ gum issues. Might be the only part of my body not bugging me.
Has anyone on letrozole been prescribed vagifem? My onc prescribed it for dryness/ itching issues but it contains some estrogen. He says it is fine but I am a bit nervous...any thoughts? -
ronqt1 - The pain could be caused by the fillers in the pink pills. At the top of this page Omaz posted a chart with the fillers some generic manufacturers put in their pill. I've been on a pink pill from Mylan and it has 15 fillers listed and a lot of those are dyes. You may be having trouble with some of those and could ask your pharmacy to order one with less fillers. About the dental problem, the only thing I know about, is if you're getting a biphosphonate for osteoporosis caused by Ai's. Some have reported jaw problems with those, but not sure about teeth/gum issues.
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Hi treeskier, good to see you and know you are doing well.
It is so true that in a thread such as this, people are going to share questions and problems about the more difficult issues whil on AI drugs.
And I agree that AI drugs are one of the reasons that there is a growing number of Stage 1 and 2 ladies who can leave BC behind them.
Yes, I had SEs with Arimidex and Letrozole (also the mustard-colr pill) but I am learning to live with theissues of getting older and dealing with SEs.
Right now I am trying to cut out fast acting carbs and sugar; and adding walking to help me fend off these SEs.
We are fortunate to have these options.
Joan
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Grandma and Ginger Thank you.
Until this situation with teeth no problems at all.
Unfortunately or fortunately with this problem I am losing weight. (which I am not complaining about).
Thank you again everyone.
Have a safe 4th
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Has anyone lost weight or had gastric bypass surgery. I just keep gaining weight have really tried loose weight but when you have so much pain it is hard to do much exercise.
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Nanna, in the beginning I was a bit taken aback my all the ache and pain in joints etc. But I discovered that moving actually makes it better, not worse. I stick to light exercise, like walking and minimal weights, but the more I move the less pain I have.
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Nana I put myself on a diet earlier this year as I was going in for a knee replacement and I felt I was carrying a bit too much. Obviously I was fairly sedentary but all I did was cut out bread, butter, potatoes, sugar and ate lightly of things like sweet potato, corn and peas but all other veg I ate unlimited amounts, at least 2 pieces of fruit a day and upped the quantity of protien that I ate including fish. If I was looking for something to snack on I had a small handfull of almonds. I drank plenty of water and ended up losing 10kg which is just over a stone in twelve weeks. My DH joined me on the diet and in the same time frame lost 20kgs. The only thing he did as far as exercise was concerned was to walk eack day in the morning.
If you want to know a bit more detail just PM me.
Love n hugs. Chrissy
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Chrissy, that is pretty much how I eat too, and it works quite well. Besides, cutting out sugars and white starches seems to have many health benefits, quite apart from the weight loss thing.
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Mommie my DH complained that he was eating so much it would be impossible to lose weight....not so....in order to lose weight you must feed yourself constantly so your metabolism will use the food and not store it as fat. Some get the idea that you must eat less not more to lose weight and so are never successful.....the only rule is to eat the right things.
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I have just been prescribed Femara but am nervous about taking it. With Tamoxifen, the only SE I had was night sweats. I am already osteopenic and my mom has pretty severe osteoporosis. Is there anything I can do besides taking calcium and exercising with weights to protect my bones?
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I have just been prescribed Femara but am nervous about taking it. With Tamoxifen, the only SE I had was night sweats. I am already osteopenic and my mom has pretty severe osteoporosis. Is there anything I can do besides taking calcium and exercising with weights to protect my bones?
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Hi Jaybird, not everyone gets the SE's from Femara. I get the sweats.....sometimes and I have had a different times the dizziness, memory loss i.e. looking for words in my head....lol, disturbed sleep until I started to take that little pill at night but that's about it. It's very possible that you will get some SE's but it's also possible that you will get none. The only way to find out is to take it and see. Never forget that if the SE's are extremely troublesome to you, there are other AI's available.
Good luck!
Love n hugs. Chrissy
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Hello Jaybird, I am on Day 8 with Femara....first few days i was a little" lightheaded" in the a.m. but now not even that. Judging by what others are saying it is early but I am determined to do this because after all, what choice to we have? This is my very first cancer medication and I understand the fears. It was all I could do to pop that first little pill into my mouth and I think I expected to turn purple and fall over dead. lol
I have been perscribed Teva-risedronate & calcium...taken weekly and it comes with its own little list of side effects ..bone aches & so on...do not know when they kick in but have only taken 2 doses (one pill per week).
Nanna & Chrissyb...I eat the same way...it is called "The South Beach Diet"..not really a diet but a healthy food style...lots of veggies..lean meat, fish & very easy to do....so much good food you never have a chance to be hungry. It would be worth buying the SB book as it is only 10.00 & full of good advice & easy recipies and good for the whole family. I do not have a weight problem but do not want these little pills to give me one so I am sticking to the eating style as much as I can.
I am still having a difficult time getting my head around this whole cancer thing...still so knew & shocking to me but my dear partner is a rock. As he says "this is just another job we will do together".
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Hi everybody: I am into my fourth month with Letrozole and the mood swings are horrendous. I am also dealing with a lot of hair loss, my hair is thinning out at a tremendous rate. Is anyone else dealing with this issue and any suggestions ?
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Jaybird, I've just been told I'm osteopenic, too. My onco told me to take 1,000 mg a day of Calcium and 800mg a day of vitamin D3. But, like you I've been wondering what else I can do. I haven't really started any weight bearing excercises, I do try to walk a couple of miles every day, when it's not too hot. There have been clinical trials of a new drug called strontium ranelate with very good results. It's my understanding it's available now in the UK for treatment of osteoporosis, but has not yet been approved by the FDA for USA. I had never heard of strontium before and when I googled it, found that it is a mineral similar to calcium and available as a supplement. I plan on asking my onco about it next time I see him. Strontium is in some foods in little amounts, so I'm trying to increase those foods. Hopefully, the FDA will approve this, soon as I am unable to take biphosphonates.
http://www.ncbi.nlm.nih.gov/pubmed/14749454
http://www.livestrong.com/article/269250-strontium-rich-foods/
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I just found out I have mild osteopenia. One says calcium, vit d and weight bearing exercise. This scan was done less than 4 weeks on letrozole so hopefully it is not getting worse with time.
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Thanks for the replies, ChrissyB and Isabelle2. I have been happy with the Tamoxifen. The side effects were manageable. I am getting ready to start an intense medical internship at a local hospital. I will need to be sharp and able to think clearly. I guess all I can do is try the medication and see how I feel. Will be doing a bone density scan this fall to monitor my progress. It is hard to weigh the benefits of taking Femara with the real risks of developing osteoporosis. I support myself and can't afford to be out of work due to illness or injuries. Please keep us posted with your progress.
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Scottiee - my hair started falling out and I began taking biotin. I'm taking 8000 mcg per day and am no longer losing hair like I was. I also use Kerastase shampoo and masque, which I think helps with the dryness.
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Thank you for the advise...I have been taking 2000 but I guess that's not enough, and I will try the shampoo because my hair is also so dry.
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GrandmaV,
I found the strontium drug fascinating. I knew that strontium can replace calcium in the body in bones But it is normally radioactive. So I found out that they separate out the radioactive atoms from the non-radioacive strontium. This is a positive approach - I think it is still being tested in the US but not sure.
I have been on Letrozole since February (5 mos.) and mood swings are common. I have very thick hair and I do not notice it falling out. I do not think it causes weight gain - perhaps water retention (similar to PMS, menopause). But the mood swings have sometimes been why I grab the wrong foods. I am able to walk every day and I also eat a modified South Beach diet. I managed to lose about 10 pounds in 10 days; but eating bad for 2 days and not walking gave me back 3 pounds. I got more than I wanted there.
It is getting to be a battle at this age (60+) even though I am very active and working.
Overall, the Femara generic is tolerable.
Best wishes to everyone here....we do have to fight for that "normal" life by doing all we can to stay healthy. With that, I need sleep!
Joan -
I can't take this joint pain and feeling awful all the time. Calling my onc tommorrow about taking a break from this little pill.
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Nanna, I hope you can feel better with a break. Sometimes a switch of generic makes it more bearable. Good luck with this
Joan -
Had my 3 month checkup with the oncologist yesterday. The good news is I now don't have to return for 6 months!!
. Unfortunately, we also discussed my plan for taking a one month vacation from letrozole in December. She's no longer OK with it. Apparently a study of men with prostrate cancer just came back. They had been of the opinion that it was OK to give men breaks from their cancer medication, but when they did a comparative study of men who've been given breaks and men who had not been given breaks - well, the men given the breaks didn't have nearly as good an outcome long-term. Soooo, I guess no break for me . Also, she had been including the 6 months I was on tamoxifen as part of the 5 year hormone therapy. It sounded to me like she no longer felt that it should be included either. So, I guess I've got another 4 year and 4 mos of this stuff. She (my oncologist) said that they are finishing up a study comparison of 5 years and 10 years, to see if 10 years gives more benefit, and if it did - she'd want me on it for 10 years
. I don't think I can do 10 years of it, even if it does provide a better long term outcome - let's face it, I'm 62 - just how much more "long term" would it be anyway... . -
Garden:
congrats on your good checkup.......6 months!!!! I know you are glad of that.
I'm still on every 4 months but hope to move to 6 months after next checkups and mammo in September!
Have a great day!
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Gumby, I'm with you. I will try to do the five years on Aromasin but ten, no way I'm 66 and certainly don't want it until I'm 76.
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Good news girls, after my 6month checkup I'm still hot n heavy with the stable boy! Thank you Femara!! Still going strong after almost two years. Just goes to show that that little pill sure packs a big punch.
Glad to hear that it's working for others as well.
Love n hugs. Chrissy
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Chrissy........I'm doing the happy dance for you!!!!!!!!!! Congrats!!!!!!!!!!!!!!!
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Congrats....I'm also doin the dance💃
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chrissyb, That's wonderful news. It gives us more incentive to stay on it.
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That's wonderful news chrissyb!
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Chrissy, that is good to hear.
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Thanks girls! I was just thinking that if it's doing that for me, a stage IV just think what it can and is doing for you.............it sure is mind boggling!......lol
Love n hugs all. Chrissy
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chrissyb...you are an inspiration...today is day 15 for me on Femara & I am still so afraid of it. I go for my radiation consult today.
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Isabelle please don't be afraid of it nor the possible side effects........not everyone gets them and some people get very mild ones that are easily delt with. If I were able to have this medication when I was first dx'd then there is every possibility I would not be stage IV now. At that point of time the AI's, which Femara is one, were not available but I sure am happy we have the opportunity to have it now...........aren't we the lucky ones!
Good luck with your rads consult!
Love n hugs. Chrissy
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Isabelle, don't worry about the letrozole. It has some SE's, but the good thing is that one of the things it affects for me is my memory - so I don't really remember how I felt before I started taking it!! LOL
. All kidding aside, you may not be one of the people who has side effects. I will tell you that my oncologist is really high on the stuff. She says it's pretty much the best stuff available - so pop that little pill and tell it to run right down there and knock out any stray cancer cells that may be wandering around your bod.... -
gardengumby...i am on day 20 with Femara and charting everything..if I could just forget that I am popping those little pills, maybe I would not even notice.
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Well, it's time to say goodbye to this forum....after 28 months Femara is no longer effective for me. On to Faslodex! Good luck to everyone...
hugs!
Robin -
Good luck with Faslodex Robyn sure hope it does its job for a long time.
Love n hugs. Chrissy -
Good luck with Faslodex Robyn.
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Anyone experiencing lots of nausea with Femara??????
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Good morning Scottie,
So far (day21) with Femara, so it may be a little early, just very teary throughout the day for no reason & other than that no s.e. Little light headed for the first few days but that has passed.
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Hi Isabelle2: I couldn't get out of bed yesterday for the nausea...today I have a slight fever, headache and some nausea again....could this be due to Letrozole...could it be the debilitating heat we are experiencing in Toronto??????
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Scottie the nausea could be either or both. Have you tried taking the Letrozole after food? Also, with the heat you are experiencing you may not be drinking enough water which will give you all the symptoms you describe. When it is that hot you should be drinking at least 2 litres of clear water a day and that doesn't include any other beverage.
Love n hugs. Chrissy
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Thanks Chrissy's: I have not bee drinking a lot of water...tea, yes...not a big water drinker
But will try. -
Scottie, a good trick to make the water go down easier is to put two or three drops of fresh lemon juice into it to give it a taste.
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Thank you chrissyb.....I know all the tricks, believe it or not I used to be a registered
Dietitian, giving all this advice to my patients....for myself.....not so much. I just made a pot of green tea and I'm looking forward to that. My L Etrozole I take in the evening after dinner, but right now, it's not helping. I may have to contact my MO. -
Scottie, you may have picked up a virus. The main thing is to not let yourself get dehydrated particularly as it is so hot. Sure hope you get it sorted asap.
Love n hugs. Chrissy
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Thanks chrissyb: I'll give it a day or so then call my MO or maybe even start out with my GP. Thanks for your concern.....just feel crummy re the nausea.
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Scottie nausea has a habit of making you feel crummy. A call to your GP may be a good starting point and maybe ask him/her for a med to calm the nausea.
Good luck!
Love n hugs. Chrissy
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I'm taking gravol which seems to work, but can't imagine popping gravol for the next 4 1/2 years😱
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Scottie if it is the Femara the nausea should pass fairly quickly and not bother you any more but it could be not related to the Femara at all in which case it should still pass fairy quickly.
Love n hugs. Chrissy
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Chrissyb, I have had it on and off for the last two weeks, yesterday being the worst where I spent all day in bed.😨
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Scottie if it's been that long already I would definitely contact your GP asap. Even if you just speak on the phone and report to him/her how long it has been going on. Time to get some answers from the proffessional.
Love n hugs. Chrissy
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Thanks Chrissyb ...I'm on it.
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Hi Scottiee, I have been away for a few hours & missed all this. I wondered what happened as I expected to hear from you this weekend. So sorry about the nausea....I am often plagued by that when travelling. In fact that is why we are back home now...Went out on the boat to swim & it was too wavy..hence the nausea. It does seem like the Femara is getting to you and for sure you should be calling your doc.
I drink as much water as I can throughout the day by putting lemon juice in it...have been doing this for years & am trying to drink more since I started the F. Sat. at the market I bought pure cranberry juice & now I am alternating lemon juice & pure cranberry in my water. I have been taking the Femara first thing in the a.m. with lots of water & so far no s.e. Do not know what else to tell you and it is very hot here too but probably not as bad as TO. Get better and come for a visit. i will take you to the market for the cranberry juice which is straight from Bala, the cranberry capital. Wish I could help.
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Scottii, just thought of something else that works for me (my husband finds this disgusting). When we are travelling in our coach sometimes I am queasy in the a.m. and I eat a piece of pickled herring or sardines. I think it might be the salty fish that helps to settle my stomach.
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Greetings, I was wondering if anyone knows how Femara affects the immune system? I've been taking it for 16 months, and I've having difficulty with reconstruction on my left side. My right implant had no problems, but my left side keeps getting infected after 3 attempts at reconstruction. My most recent attempt was a lat flap, but the TE became infected, too. I guess I'm looking for ways I can be proactive if I take another shot at reconstruction.
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Isabelle2, you are killing me😱 Breakfast used to be my favourite meal of the day. In my old age it's coffee and toast.......herring or sardines would send me straight for the gravol for sure😝 If it's not any better by tomorrow, I will deal with it.
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Isabelle2, you are killing me😱 Breakfast used to be my favourite meal of the day. In my old age it's coffee and toast.......herring or sardines would send me straight for the gravol for sure😝 If it's not any better by tomorrow, I will deal with it.
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Scottiee1, get better & come here for a visit before the rads get the better of me. My dear Doug will make you the best breakfast you ever had. i made strawberry crepes for us this morning which is not our normal deal....but the berries were just too tempting. I love to cook & bake & Doug usually does brekkie. Get on the phone to that doc.
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I recently took a 8 week vacation off Femara after being on it for 5 years. I previously posted how the body aches and constant joint pain finally wore me down in addition to osteopenia issues. My new oncologist strongly recommended I stay on for 7 years minimum but I really needed to take a break. My blood report showed elevated cholesterol levels and CRP along with other cardiac and inflammatory markers. I did notice after about 3 weeks off drug I finally realized one day -- I had no joint pain! I had almost forgotten after all these years what it felt like to be without constant pain. However, after reading your posts where some of the oncologists strongly discouraged these AI extended holiday I decided to start my daily dose again. Tonight I took my Femara pill and will see long it takes for me to feel like crap again.....
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jlmg, I don't know of any immune SEs, but maybe ask the onc. How are your white blood cells doing?
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jimg I haven't heard that Femara causes immune problems but having BC itself does compromise the immune system. As Mommie said, talk to your onc about the problem and see if he/she can give you some pointers to improve your immune system. Good luck and so sorry to hear that you have had so many problems with your recon.
Love n hugs. Chrissy
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Wow, I have been reading and reading, and I am shocked that no one else has said anything about short term memory loss. That is what I was hoping to find. No one has had it? I just lost the best job I've ever had, and the highest salary because of it. I have been on it since November and that is when I started my new position. I started noticing that I would forget things like a name, but only for about three weeks, and then it would be something else. I had a hard time remembering new things I was learning at work like a new data base system, or it could be the sequence of what to look for when entering something. My job also included alot of interaction with clients and such and for that I was great, but between the memory loss, or inability to hold on to the new info, and then the tiredness, wow.
I was let go "nicely," if there is such a thing. They wouldn't exactly say what it was, but since I worked with such a young group, I'm assuming speed of thought, and learning the new systems might have been the reason. Has anyone else out there experienced the memory loss or have had to keep re-asking forgotten things? This is scarier to me than anything else. After 8 months, I never experienced any beginning side effects, no nausea. I take Biotin so my hair is fine, but I do have the aches and pains in my joints and feel 80! Take advil for that.
I saw that only 5.9% had the memory loss in another study.
Let me know if you have seen or heard of this please.
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Gail, when I was researching the different HT meds, I did read about this. From what I read, the AI's were better than Tamoxifen. Sorry you are one of the ones that got this SE, and sorry about the job.
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Gail - I ABSOLUTELY have short term memory loss. I tell my husband that the only thing I can remember anymore is that I used to have a good memory. At work I have to write down absolutely everything, as I'll get up to go do something and forget what I'm going to do by the time I get there. One of the reasons (but just one, there are many others!!) I want to retire is that I know my work has been impacted to a degree. The notes help, though.
So sorry about your job. We've all lost a lot - losing a job over this just feels like getting slapped for getting cancer.
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Hi Gail: I think it depends on age also. Myself, I'm 65, so memory loss goes with the territory. It's hard for me to say yet if Femara is making it worse since I have only been on it for 4 1/2 months. Will keep you posted though. So sorry about your job.
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Gail I too have memory loss but more for words than anything else. My family usually fill in the missing words now but I know that if I were working it could be a huge problem. I'm so sorry you have lost your job over this.
Love n hugs. Chrissy
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I'm 45 and have been in Letrizole generic (Mylan) since January 2012.
I started back at work full time in mid-April.
I think my memory loss started from chemo but letrozole may be contributing as well since it seems to be getting worse.
I have notes for everything all over my cubicle. It's like The movie Groundhog Day -everyday is new.
My biggest problem seems to be remembering words in mud sentence. Makes me feel stupid. -
Count me in on the memory loss stuff, but here's my receipe: I was a heavy drinker for about 17-18 yrs, my Dad has Alzheimers, I've had chemo & am on Femara....+ I just turned 58 & have been under the worse stress of my life since March (my Mom was diagnosed with lung cancer w/mets to the liver & brain-she lived 90 days from diagnosis to death).. My memory goes continually. I have the post-it note addiction.
Sorry about the job tho Gail. That does seem harsh.
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Not so much memory loss but having to search for (what used to be) common words and an increase in forgetfulness. I don't work outside the home so that hasn't been a huge detriment to me. Gail, I really think that firing you was awful and I am so sorry.
Someone much earlier questioned if dizziness was a SE of Femara and I'd like to note that it has been for me. Both nausea and pretty serious dizziness (especially when standing up) lasted for about 2 months consistently. I still get very occasional nausea and the dizziness seems to be somewhat better (but not altogether gone) during the last week or so. Those two things, along with deep fatigue, have been the most consistent SEs, and any others seem to randomly come and go. I started Lexapro (to help with hot flashes) at the same time as my Femara and attribute some of the severity of the dizziness to that, as well.
So far, however, nothing that is going to keep me from continuing on with Femara or that I can't manage/live with right now. Fingers crossed that it continues this way.
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Ysa-do you take Femara in the AM or PM? I'm one of the ones who had MAJOR fatigue while I was taking the pill in the AM. I switched to bedtime about 3 months in & fatigue has ceased to be a factor for me.
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In regards to the dizziness - my pharmacy stuck a "causes dizziness" sticker on the side of my bottle
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Thanks for the suggestion, Eph3_12! I actually do take it about 7-8 at night (and have since starting it after reading about other's experiences). I don't sleep well (an issue before Femara and exacerbated since starting it) and am trying melatonin to see if that helps. See my MO in a couple of weeks and will discuss with her, too. Open to other ideas, though!! = )
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I have a problem with sleeping as well. I take the letrozole about 7 PM, normally, and most nights do not sleep well at all. I tried melatonin, but had nightmares. So, if you come up with something Ysa, please let me know, too!!!
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Will do, gardengumby! It's such a crap shoot and I haven't really noticed the melatonin helping with staying asleep, even using the time released version. I do occasionally use a .25 mg Xanax to put me back to sleep if I wake up and then notice my mind racing but would prefer not to. There seems to be a fair amount of gals on sleep aides like Ambien but I'm not sure I want to do that.
Please wave at Seattle for me...I used to live there (my sister still does and I'm going to be visiting at Christmas...SO excited) and soak up some of the rain for me (I'll send you some of our hot weather since y'all haven't had much yet this summer)!
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No we haven't!!! But, it's been much better than LAST summer was - so I'm really not complaining. Like you, I don't want to take Ambien and then find myself sleep-driving somewhere
. I don't drive all that much when I'm awake! I'd suggest we meet up at Christmas, but I'm going to be in Hawaii then - getting warm.... I haven't tried the time-release melatonin. I am lucky in that tylenol kind of knocks me out, so if I can't sleep I take a tylenol. Sometimes it helps, sometimes it doesn't. Usually I don't get too much into the mind racing anymore - just lay there going "I need to get up in three hours!!"
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Hi ladies. I would like to share my experience with femara. Sept '11 I started femara & almost immediately my joint pain began, there were also other side effects. I added all sort of supplements to my regimen along with exercise. My body felt like it was aging by the hour. I remained optomistic about taking it becaue I wanted to do all I could to stop the beast from returning. During that time I was reading BCO daily, especially this thread.Anyway...I saw my MO in May & after discussing with him the possible use of an estrogen cream & he decided to switch me to tamoxifan which I began June 1st. I feel like my old self again!! I just wanted to share this. When I asked why he didn't put me on this in the 1st place, he said because femara is 1-2% better than tamoxifan. Really??? Doesn't that equal out to be about the same? Considering all the side effects & the need for zometa to prevent bone loss (which I got very sick from) I wish I would have known more when I was diagnosed. Being on BCO has been so informative to me. I just wanted to share my story. I wish all you wonderful ladies well.
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Sleeping issues: check!
My mind races when I lay down for bed...like many of you, I'm sure. It makes falling asleep difficult. Sometimes, I wind up with a panic attack. Like someone is squeezing my torso-can't catch my breath-heart racing. It lasts about 5-10 minutes. I try "belly breathing" and it helps me out of the panic attack.
So...I originally tried Ambien 10mg. Way too much! It worked awesome, but I woke up feeling a bit nauseous and a minor headache. It would go away within 20 minutes...but still. So, I would break the pill in half and that got the job done.
However, my Onc didn't want me to continue taking them as he said it willaffect your REM deep sleep phase.
He recommended Melatonin. I got the 10mg extended release. Didn't do a thing.
Next up...he said try taking a couple of Benadryl (50mg). I don't know why but this doesn't sound like something I want to do, so I haven't.
He also gave me a Rx for Ativan .5mg for the panic attacks.
I tried taking it when I lay down for bed. Viola! Works like a charm. I sleep good and only wake up. A couple of times a night cuz of hot flashes.
So, for now, I'm sticking with the low dose of Ativan. -
tenaj - it's great that you are doing well on tamoxifen. For me it was the opposite. My MO started me on tamoxifen and it almost killed me. The SE's were much worse, the pain, exhaustion - everything - much worse. Plus I got blood clots. So, it's all a crap shoot. One person's poison is another's medicine!
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Scottiee - any drink with caffeine will dehydrate you to a degree, so if your coffee or/and tea contain caffeine, they can not be counted equally toward your fluid intake in a day. Diet coke, diet pepsi also have the caffeine.
You may just be coming down with a virus - flu bug and therefore the fever and nausea and lack of energy.
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Superfoob,
I started taking benadryl for a couple of years and it helped just enough to get me to sleep, then I had to add Melatonin. That does not work so well and I'm on Ambien extended which seems to work well. I wake up fine without waking up 2 or 3 times a night now. I used to go almost 3 days without much sleep without it.
Glad the Ativan is working for you.
Terri
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Those of you taking the Femara at 7PM, just a thought-I take mine just before I go to bed. I also take 1 over the counter generic tylenol pm; I fall asleep after just reading a page or 2. I sleep solid for about 4 hours (I go to bed around 10), so 2ish I wake up, because no matter how much peeing the dog does before we go to bed, she's up wanting out. I let her out, she does her business & comes back in 10 minutes or so later (less if its nasty out). I generally fall right back to sleep although since June, when my Mom passed away, I find it takes me alot longer to go back to sleep. I'm afraid to try to take anything additional that late because I'm afraid I'll oversleep. But -usually taking the pill just before I go to bed works well for me.
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Eph I take mine the same time you do at bed time with melatonin 3mg and does just fine. If I have to get up it is because I have to, you know. But go right back to sleep and wake up on my own refreshed.
As you all say we are different in how we deal with the meds.
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Eph3 12: I am like you if I am awakened during the night it is difficult to go back to sleep. Don't know if this will help but i have a little dog that needs to "go" during the night so I now leave a puppy pad for her & she uses it...only at night or during the day if we are away for a long time.
I take my pill every morning & so far it is not bothering me other than I am very emotional...crying at the drop of a pin.
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I read recently that research now shows that caffeine is not dehydrating:
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All I know is that coffee makes me "pee"...that is a form of dehydration...I drink it anyhow...love it.
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It's good news for me if now they say caffeine is not dehydrating!
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I drink water all day and that makes me pee, too. I wouldn't say that's dehydrating, though.
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I drink water all day and that makes me pee, too. I wouldn't say that's dehydrating, though.
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I drink iced tea all day long every day - winter and summer. Thanks for the link cfdr!!!
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I'm here to report on Femara and its affect on the immune system. I saw my oncologist yesterday, and he said I can go off the Femara a month before my next attempt for reconstruction. Then I can stay off the drug until the reconstruction is finished, TE through implant (if I get that far). He hasn't had a patient with my history of infections, but my blood work looks good, and I've been on it for 16 months. Since I'll be on it for 5 years, he doesn't see it as a problem. That news improved my outlook. It's one more preventive measure I can take before the next attempt.
I take Trasodone to sleep and it doesn't give me a hangover in the morning. I was being treated for an anxiety disorder before I was diagnosed with BC. I was taking Celexa, but my doctor switched me to Lexapro, and my hot flashes have doubled. The oncologist said the Celexa must have had something to help with the hot flashes that is not in the Lexapro. Has anyone had any luck with Paxil or Effexor and hot flashes?
Alteril is an OTC sleep aid. Sometimes I take that if I wake up to use the bathroom and can't get back to sleep. Hope this helps.
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Have just googled "coffee as a duretic" gave some good information & the bottom line was that coffee in moderation (as most things) was no worse than water . I found the article very interesting and was worth the read. It was by Drsugar and of course was for information only, not medical advise.
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jlmg, what is the effect of femara on the immune system?
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Momine, I'm not exactly sure what exactly happens, but the literature states it can raise the body's lipids and interfere with kidney function. That's probably why liver and kidney functions are tested by the oncologist. Since I've had so many infections and struck out 3 times at reconstruction, I want to prepare as much as I can to fight another infection when I try again in November. I was so relieved my oncologist didn't sweep my concerns under the rug, and agreed to let me stay off Femara before and after the surgery, if I'm lucky enough to keep the TE. I have to say my general health is good. I didn't get the flu shot and was healthy this winter.
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Ok, well good luck with the surgery.
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I just wanted to report that I have been on Femara for a year. I have not experienced any significant side effect. Once in a while I will have a series of hot flashes (more like warm surges) but then they go away for a time. During the year I have changed my diet dramitically. I eat foods that are as fresh as possible and with minimal processing (eating clean). I also have eliminated all alcohol as alcohol increases the risk for reoccurance. I also drink coffee only in the morning. I take my Femara before I go to bed. I strongly believe all of these actiions this has helped me mitigate the side effects from Femara.
Thank you for listening.
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Thank you Ktab96.....It is so nice to hear from someone who has NOT had SE from Femara...good for you. I, myself have been on it for 5 months now....my emotional roller coaster is slightly abating, working on my thinning hair by taking 5000mg of Biotin per day and I can see some improvements, at least my hair feels a lot healthier and I will ask my hairdresser what new growth he sees. I am one of the women who has not experienced bone or joint pain, feel lucky about that. I had major issues with nausea for a few weeks, which also seems to have abated, along with a lot of anxiety Inwas experiencing. Inhave, however, started to see a therapist (2nd visit tomorrow) to help me cope with the whole BC experience, and she has convinced me that she can. That's my
Femara history in a nutshell.......Thank you again for posting, it will be quite a relief to a lot of women just starting out like myself. -
Congratulations ktab and scottie. Sorry, of course, that you had to join the BC ranks, but glad that you aren't experiencing bad side effects from Femara/letrozole. My joint/muscle pain has been ameliorated to a certain extent by completely removing grain from my diet. I still have some pain, but it's definitely more manageable - most pain medications (aspirin, nsaids) I can't take, and the others that affect your senses, I won't take, so i had to find a way to work out the kinks without drugs.... Since cherries always make my body ache (though I love them) I'm passing by all the fresh cherries for sale and will be for another four years.... but I prefer no cherries and no grains to the body aches. I still drink some wine and an occasional beer - but the beer, being grain based, doesn't work for me as well. Hard alcohol doesn't work at all. Like you, scottie, I take biotin, though I've been taking 8000mcg per day. It has definitely helped both my hair and my nails.
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Hi Gardengumby.....Did you research the 8000mcg....perhaps my 5000 is not enough?
Can you explain how you came up with 8000. -
LOLOLOLOL no research - just purchased the bottle that was on sale at the health food store that day. Then when I ran out I bought 5000mcg and it didn't work quite as good, so went back to the original. I can't remember the brand, I'll try to remember to check and pm you with it - but since my memory is GONE with femara/letrozole don't depend on it
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I use Natures Bounty Hair, Skin & Nails. It has a new formula of 5000 mg Biotin per Serving.
I take three per day.
I shop at Ralph's (soCal) and they always have Buy One Get One Free.
I used to have a bare patch right in front. No more.
Smiles! -
superfoob - is it 5000 mg or mcg? 5000 mg sounds like an awful lot... especially 3 per day.
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It is mcg. Oopsie.
Three caplets= 5000 mcg (5mg)
http://www.naturesbounty.com/optimalsolutions/035710
I hoot that works. It goes straight to the product info. From there, you can download the product label.
:-) -
Having trouble with my thumb and wrist aches a lot.Have been wearing brace but does't help. My question can you have cortiozone injection in wrist. It on side i had breast removed. I know cant take blood pressure or draw blood on that arm just wondering about the injection.
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Nanna- I have had 3 cortisone shots in my shoulder on the BC side which has lymphedema but the dr said the shots were ok. They have made a world of difference.
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Has onyone had to stay on femara longer than 5 yrs?
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Does arimidex do as well as femara?
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I was changed from arimidex to femara. I still feel tired, worn out and old. I have 4 more years to go and am wondering how I am going to handle taking femara. Don't know of anyother options.
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Mimidi I have another 4 1/2 years with it so I am pushing myself to workout everyday.
I bought a treadmill and it's in my bedroom where I have to either trip over it or get on the darn thing. I have been doing this for 6 months now and I am at the point where I am FINALLY enjoying it and challenging myself to stay on longer each week. I strongly
Believe it is helping me, plus doing a few weights 2 or 3 times a week....I am 65 and
between my new diet regime, exercise, and MANY supplements, I feel healthier now, physically, than I did before BC....I can hardly believe it myself.....go figure!!!!!! That's my recipe for dealing with Femara, or for me Letrozole. Maybe some more lovely ladies will give their recipes💪 -
Exercise is the key to getting rid of the joint and muscle pain from letrozole. Just start walking as slowly as you need to and build it up over time. It really helps!
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Nana I have heard of some ladies being on one of the AI's for longer than the five years and they are as far as I know testing to see if there is a benefit to staying on them longer. The AI's are Arimidex, Femara and Aromasin.
Different people react differently to all meds. Some may not do well on one but extremely well on another. When you get right down to it, the three of them do a very similar thing but are put together differently but the outcome is usually good.
Hope this answers your questions and please feel free to ask more if you need.
To the other girls asking about getting trough the fatigue, try taking your tabs at night as that really helped me with the fatigue bit. It also helped me to eat pretty much gluten free and make sure my B12 level was good.
Love n hugs. Chrissy
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Scottiee, exercise is the key for me too. I eat a healthy diet with lots of veggies and I try to get an average of 1.5 hours of exercise a day, mostly walking and some light weight work.
Chrissy, I have been wondering about B12, because I had some things going on that could be from low B12. Any particular reason you focused on B12? -
Momine I have always had a problem with low B12 and fatigue and know from experience that a good level works wonders. B12 is a water soluable Vitamin and the body does not store it so eating well and supplimenting for me is a must.
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Thanks, Chrissy. I have taken a B supplement for the last two months and it does seem to have helped various ailments. I was thinking of getting my level checked next time I have blood work done.
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ktab - I have had minimal SE the same as you. I am exercising more and eating better now which may help. I take melatonin to help sleep but my pain problems are due to osteoarthritis in my knees not associated with BC. The only major thing is the osteoporosis in my lower back. I have a zometa infusion every six months to help that out.
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My MO told me last visit that they are currently running tests to determine whether or not a longer time on femara/letrozole would be more beneficial. To be honest, I don't much care. I am completely determined to do the full 5 years, and equally determined not to do a moment longer. I've been on it 9 months now. Exercise and supplements help, but my joints do hurt.
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I absolutely hate taking Femara for the side effects I have - mood swings, depression, apathy, joint aches, leaching of calcium from my bones and total lack of sex drive.....................
but as much as I hate taking the Femara I live every day in constant fear of a recurrance and if the oncologist says it's best to take for 5 years to starve off any lurking bc cells in my body - so be it.....and if at the end of 5 years she says keep on taking it, I will. 23 months in, 3 years to go.
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Femara is keeping me alive full stop. I hope I can take it for the next twenty years!
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Yes, you can have the cortazone injection on your affected site, at least my doc thinks so. I had much pain from OA in the joint of my thumb on the side w/cancer and had the first injection last year, with much relief and no ill effects. I would strongly recommend it but remind you to make sure the doctor knows your situation.
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I took my first dose of Femera today and I am scared to death of SE. I was under the impression that the only side effect might be hot flashes but I see this impression is wrong. Just googled it (dangerous thing to do sometimes) and I read the whole list of possible SE's. Of course, I'm going to do what the MO says. The thought of some sneaky stray cells lurking is more scary than SE's. It just sucks that with BC, it's always something.
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Chrissyb: it is your spirit in dealing with what you have been dealt that keeps me taking Femara. I look up to you as a 'guiding light' on dealing with our life's issues. Thank you!
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Hi Everyone,
Well, I have one more month of Femara, after being on it since 2007!! Two different oncs say that they haven't proven its beneficial after 5 years, so I have to stop. I am so scared to stop taking it! You all can make it fine for the 5 years. It seems like the side effects got much better after year 3. I actually havent felt the pains, aches and general fatigue in a long time. Actually since I havent been having side effects, I hope its still working. Just think of the SEs as proof that you are fighting this.
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Bev, I have been on it for four months. I have had joint pains, mostly feet and hips. If I walk it goes away. The more I move, the less it hurts.
The hot flashes are annoying, but mine are already getting milder.
I have had a couple of other odd SEs, like dizziness for example. But they tend to go away after a few weeks. So far it has not been as bad as I had feared, and if it stays like this it is completely doable.
I do think exercise is key though. -
Momine, thanks so much for your response. Of course, I'm going to take the meds regardless of SE's. The thought of stray cancer cells is way worse. From what you say, it does sound doable, if not entirely pleasant but what is pleasant about BC anyway?? I've had a rough time of it. Had an MX of right side which was totally uneventful and much easier than I thought. Got great news and 1 week after - pathology report showed everything gotten. On the 8th day my chest swelled like a balloon, turned purple and green and I was in agony. Surgeon said rush to ER where he did emergency surgery for a massive hematoma and took out 1,000 cc's of blood. 3 days later, I started massive bleeding again and needed another emergency surg. I was so sick. Blood pressure 80/54, just sick. In intensive care then it just started improving. So I go home and then the surgical scar opened up which is where I'm at now. Have to clean it, put bacitracin in it and bandage it 2x a day. My original surgery date was 6/7 so this is going on awhile. I'm diabetic which is why it's healing so slowly. I guess if I dealt with all that, what's a few SE's, right?
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I hope no one felt that I was discouraging ANYONE from taking femara/letrozole. I will absolutely take it for the full 5 years, and if I should go to stage IV, I will take it as long as necessary. (Chrissy, you are an inspiration!) I'm just not planning on taking it longer than 5 years. That's just me. I am most assuredly NOT wanting to discourage anyone else from doing more!!!
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Walker2222 - I also exercise everyday. I work with light weights, walk, Pilates, and Zumba. My Radiologist strongly recommended I take up exercise, eliminate all alcohol and eat whole foods to mitigate side effects. Its definitely working for me.
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So right on the no alcohol!
I drank a couple of Smithwick's yesterday at the neighborhood pub and, boy am I paying for it. My belly won't stop rumbling and I feel so icky/nauseous. BLECH.
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I have tried wine and endup having a big hot flash. Not worth the flashes eventhough I like a good Zen!
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Can't do beer or the hard stuff, but wine doesn't seem to affect my SE's.
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bevg49,
I am on day 40 with Femara, and like you, I was scared to death...I waited 2 weeks even to fill the perscription and then another few days before I popped a pill. So far I have minor hot flushes, not so bad, first few days a little dizziness and that passed. My biggest problem now is emotional...I am constantly in tears, super sensitive, my family and good friends are aware of this and are being very tolerant. If this is as bad as it gets I will deal with it....this too will pass.
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Isabelle2,
I can identify with you on the emotional thing. I too had that 'problem' when I first started with the Letrozole (aka: Femara). I think it was a combination of the med, radiation, and just adjusting to the idea of having the BC... The emotions have leveled off to more normal now, (most of the time). Hope you too will have it ease up...
Vickie
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I'm on day 3 of taking the Femera and I have to say, I have not had any SE's whatsoever, not even a hot flash. I don't know if they are going to start later on, but if this is it, I consider myself lucky. The really bad thing is the emotional part. Even before starting the med, I am having major problems with moods. I am either crying for almost no reason or enraged at people, mainly my husband, sister, son and daughter. They have been there for me during this horrible time and I don't know why I am overreacting but very little things make me super mad then I end up crying for 10 minutes. My husband made fun of a show I like to watch. I told him to drop dead then cried.... I offered my sister a booklet on lymphadema (she was diagnosed same week as me). She said thanks but no thanks, she knows it all and doens't want to know too much anyway. It hurt my feelings and I got mad then cried... I am losing it and I'm afraid the Femara will make it worse. Of well, time will tell I guess. There are always psychiatric hospitals lol.
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bev49 I could have written every word that you did....be sure and read my little blog above. I have had more upsets in this past month of Femara than ever in my life....& it is just not me. I have always been fairly sensitive but not like this. I was told by my onc. that would I wil adapt but I am just not sure how long it will take.
I feel that cancer is not only a physical disease but an emotional one....and it affects family and friends. I had my first rad treatment today & cried through it..certainly not from pain, only fear. Tomorrow is my first visit with a counselor and maybe she will set me straight. I can only hope I do not destroy every relationship I have before I am through this. It is a good thing that I have an easy going saint for a partner. LOL It is so good to have this site to share.
As for the Psych, hospitals, there isn't enough room for all of us.
Scottie, I got my Gazelle & have started with 5 min. sessions 4x per day and have worked up to 10 min....
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Sisters!!!
I know what you are going through. I believe that the BC 'plays' with our emotions a lot!!!! I too have had some of those days where for no apparent reason the tears won't stop flowing (yesterday was one of those days) but they are happening less frequently than a few months ago. I have been glad to be able to use this site to vent on and know that others feel things too, (guess that is where the statement "misery loves company" describes us).
Sorry if this to too much of a repeat of a previous post....
WE ARE STRONG AND ARE DETERMINED TO BEAT THIS MONSTOR!!! keep hanging in there friends...
Vickie
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Isabelle:
Hang in there. I did 35 sessions of radiation, and compared to chemo, it's a walk in the park! Seriously, there is no pain involved, so hang tough. Do what they tell you and it will be over before you know it. Try to stay as relaxed as possible. I know that anyone can say that, but I did it, and it worked. Take care.
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By the time we get to start taking the AI's we have already been on the emotional roller coaster of finding out that we have BC and then the emotional side of the treatments. Eventually the emotions of having BC finally catch up with us and in a lot of cases, still have to be dealt with then add in the AI's...........well we all know where that lands us.
The emotional side of taking any of the AI's is caused by the lessening of estrogen.Once the estrogen levels have dropped your body will even out and the crying jags will not be as bad nor as often. Hang in there ladies as it does get better.
Love n hugs. Chrissy
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Chrissy - how long after starting Femara do you think it takes for our bodies to adjust to the lessening of estrogen?
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Debbie each one of us is different but for me it took a good six to eight months before I noticed that I wasn't bursting into tears at every little thing. Now, three years out, I only cry at sad movies like I always did........lol.......so I'm now what I call well adjusted.
Love n hugs. Chrissy -
chrissie, I've been on Femara and I think I am learning to handle my mood swings and teary times better, and have faced the fact that sometimes I get really rotten hot flashes. It's also been 10 months since my last surgery and I could have one more to improve the reconstruction from the DM but haven't felt able to deal with that yet - or it just doesn't bother me enought (the imperfections) to risk another surgery.
Interesting word - 'adjusted'. I was just thinking maybe I am finally adjusting to the fact that 'this' is what my life is going to be like from now on. I can start each day positive and let it run it's course. Then I can try and start again the next day. As you also say you have found your peace which gives you strength - maybe I am getting there too.
Thank you for leading me through this - I do feel so alone with this BC stuff sometimes.
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Debbie dealing with everything to do with BC is very difficult and we all deal with it differently but remember we never have to do it alone.
I heard another saying the other day perhaps you might like to use it.
Never mind the new normal, this is my new reality.
Love n hugs. Chrissy -
amywolfie, thank you. I know I will do this... I guess it was the fear of the unknown that was so upsetting & of course hearing the stories of 5 minute treatments. I was on that darn table for 1 hour 2 days in a row but yesterday was 1/2 hour so it is getting better. So far what hurts is my arm from keeping it over my head all that time.ouch.
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Isabelle: I think I was the one who told you it would be around five minutes and truly,
That's all it was for me.....I hope the time period keeps getting lesser and lesser. I hated having my arm over my head but I can't image for half an hour to an hour, I think I would have been screaming bloody murder at the techs. -
Scottiee, I'm with you. I finished rads last month, and it was 37 treatments total. I'd heard other women talk about "it took longer to take my clothes off than it did for the radiation treatment," so I wasn't expecting the marathon zap sessions! I counted, it was twenty separate zaps each time, and altogether, it took about twenty minutes. The difference is how many areas your RO determines should receive radiation, and for us with node involvement, it ups the ante.
Eventually I became such good buddies with my therapists I looked forward to seeing them. They were what made the whole paducah tolerable.
Think of this as a six-week-long speed bump. One day at a time. One foot in front of the other. Before you know it, you'll be looking at the radiation center in your rear-view window.
Is it as hot in Canada as it is in California?
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What is avatin? Is it a sleeping pill? What is lupron? Should I be taking those? I am starting Femara manana. Hope its better than Arimi. I had some very minor aches taking Arimi but mostly swollen tongue covered in ulcerations which hurt and burned 24/7 and the shortness of breath and faintness after exercising I just couldnt take it anymore.
Got a new MO who gave me Femara. I am so crossing my fingers that it works and I get to live til 89 when the chance of BC statistically takes a deep dive and dont have to worry so much. Just getting thru the BMX and ages 50-85 when the big BC is most likely to strike.Good luck ladies,may your sleep be sweet and restful and may your side effects be few and far between!
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Layla I started Femara a week ago. Granted that isn't too long a time so I could be wrong but I find it amazing as far as SE go. I have almost none. The only thing I feel is tired during the day. I'm not working so I'm able to take a nap. I have not had a hot flash even. My joints don't hurt. I am a little depressed and find myself crying sometimes for very silly reasons and I get angry at my loved ones for really little reasons. Dep[ression and mood swings are side effects but really if that's it, I'll go with this Femara for 5 years happily. I hope you have a good experience too. Sorry, I don't know what lupron or the other drug is.
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Layla did you mean Ativan? If so it is a sedative and used to aid sleep. Lupron is used as a treatment for cancer and would be prescribed by your oncologist.
I also started with Arimadex and had dreadful SE's but I have been on Femara for two years now with almost no noticeable SE's. I take it at bed time and that takes care of the drowsiness/tiredness SE.
Love n hugs. Chrissy -
OK ladies.....latest update on my Letrozole journey. Was having major issues with nausea and finally went to my GP....requested a lot of blood work and an ultrasound....
all came back clear and then suddenly overnight it disappeared. So I was feeling pretty
"good" considering some of the horrible SE you ladies are having. I got thinning hair and
some fatigue...big deal....took Biotin and got on my treadmill to take care of the fatigue.
WELL, three days ago I was stopped in my tracks with horrible bone pains from the waist
up....I of course am thinking of mets.....most of you seem to have joint issues (I don't)
If anybody is experiencing deep bone pain, could you post and try to reassure me that it's not mets😱 -
Scottie, bone pain is definintely one of the fun side effects of Femara. Muscle, joint and bone pain. I started taking it a little over a week ago and luckily, no serious SE's yet but I even googled it now to be sure I was right. I would not worry about mets. You wouldn't have mets everywhere from the waist up and I think your doctor would be aware....Maybe you need to switch to another hormone drug? This is something to talk to the doc about.
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Bevg49....Thank you for responding.....feel better now.....I don't have to tell you that now
every pain or twinge I get scares the hell out of me....Have an appointment with my MO
on the 23rd and will mention it. I'm terrified that he might want me to have an MRI....soooo claustrophobic , I don't even want to think about it.....Will keep you updated.
Thanks again. -
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Day have the docs suggested Tamoxifen for you? Maybe that might be a little gentler on your system. It's not commonly used after menopause but is done. Ask about it next time you see your doc. Hope something eases your pain as it certainly does not help with QOL unless you can control it.
Love n hugs. Chrissy
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Bevg49 - It took almost a year for me to get a hotflash. I think its because of the surplus of estrogen in my body, I had to work it off so to speak. The only inital side effect I had when I started Femara was a little fatigue.
Lets face it having and treating breast cancer is a very frightening experience. It took a while for me to gain control of my emotions. I feel much better about it now as each of my blood test results are getting better and better. My tumor markers keep going down which is a very good thing but I still get a little anxious with every blood test I take and each Onc visit I go to.
Others have mentioned that I seem much calmer now. I don't sweat the small stuff anymore.
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ktab, I'm so glad you're doing better. As for me, after reading I am realizing the SE's don't show up for months or even a year, like you, so where I thought I was incredibly lucky, I might not be so much. I wonder if the SE's will be worse than all the complications I've had so far. The cancer surgery was a raging success. The BS told me all the cancer was gotten but the 2 emergency surgeries in the two weeks after the original surgery where almost killers and now, 2 months later, my surgical scar is open and I have to wash it, put bacitracin IN it, pack it with cause and bandage it daily. I am incredibly depressed and angry all the time. I think it's a combo of the meds and the situation. I was diagnosed in April. It was a complete shocker and now, not even 4 months later so much has happened. I really and truly hate this shit. Excuse my french
.... On the other hand, I'm trying to keep it positive. We are here, we are fighters, we will get beyond this. -
I've been on Femara since February and have developed drug-induced lupus. I have an appointment with the oncologist next week, but was wondering if anyone else had this happen and if so, what did you do? I am so achy and have developed five trigger fingers and my bloodwork confirmed the lupus. Between the cancer and this, I just want to go to bed, pull the covers over my head and stay there forever.
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I started Letrozole last January. In the last month, my feet bones HURT!! If I sit for more than a half hour or so, when I stand up, I feel like all the bones in my feet are broken. I told my husband it would probably hurt less to cut off my feet and walk on nubs. I also have bone pain in my thighs and sometimes my lower back and hips. It lessens when I walk, so I walk every weekday. Mon, Wed and Fri: min 10,000. Tue and Thurs: min. 5,000. But still, after I get home and shower...I sit down to relax and boom...pain.
I suspect it is the Letrozole. Any one else feel this kind of SE?
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SuperFood: I don't have the pains in my feet but I do have a lot of pain (bone mostly)
In my neck, shoulders and collar bone. Some days are better than others. For me. Getting on my treadmill helps a lot, emotionally and physically. Must be very difficult for you to walk when it's your feet that's involved. How about swimming, easier on the joints and bones? Have you talked to your MO about some pain meds? -
Hi Scottie: the feet pain just started in earnest in the last month and I haven't seen my MO yet. I have an appt on the 28th and will let him know then. Unfortunately, I don't have access to a private/backyard pool and public ones creep me out...they are like human soup. I do have a Vicodin Rx but feet pain is better than not pooping...Hee! I'm hoping that it is the Letrozole and that it is a "pain" phase/cycle that will mellow out a bit in time...or that the walking I am doing will help over time.
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Superfoob, I have the foot pain on and off. It came on almost immediately with the femara, but it does seem to be easing down (been on the stuff 4.5 months).
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Hi SuperFoob.....I have an appointment with my MO on the 23rd....we wil have to compare notes as to recommendations.
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Hi SuperFoob - I loved your description of a swimming pool. I cannot get myself to go in a public one either. I like the ocean best, so have been planning a long trip to Hawaii with the hope of eventually moving there....
My feet were VERY painful for awhile. That quit, and instead my pain is focused more in my left hip. The root cause of the pain is actually my back, though, not femara. I do believe that the femara aggravates it. Other than that I have overall achiness/stiffness.
I have, however, begun getting some relatively bad headaches of late. Has anyone else had headaches? If not, then I'll probably make an appt with my eye doctor.....
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Scottie: sounds like a plan!
GardenG: I live 3 blocks from the ocean. Unfortunately, persistant ear & sinus infections from my youth have made it impossible for me to go in the water anymore for fear of bacterial infections. I used to love bodysurfing. I'm stuck with staring longingly at it. I bet Hawaii's water is probably a bit better than Long Beach, CA!
No headaches for me....sorry. I would definitely tell my MO though. I did have headaches when I was first diagnosed and I got a Brain MRI...all clear...or as they say, "Unremarkable." I think my headaches/migraines were associated with my ongoing sinus/ear issues which, interestingly went away during chemo and haven't reappeared. -
Calling all Femara/Letrozole ladies suffering from fatigue and lack of energy.....I'm guessing that's most of us....Inwas introduced to a product today called E3Live..AFAFresh Frozen Superfood....it's a blue-green algae kept frozen and to be found in your health food store. I purchased it today myself and took 1tbs and OMG...
I had an instant energy boost, which continues after 3 hours....amazing stuff....I'm sooo
Excited about this product, I couldn't wait to share with everybody....please, please give it a try. It comes highly recommended from someone who is a vegan,mbutnhas spent
Years researching for herself and her mother who is a cancer survivor. PS....I have been
on the go all day and usually need to rest when I come home....I'm feeling so energized
nd getting ready to take a friend's dog for a walk. (dog sitting)....please let me know
your results should you decide to give it a go. -
Thank you Scottie, I will try it for sure as I think the Femara/radiation fatigue is setting in however I got the peach pies made today (with my man's help...he blanched & peeled the peaches) and I will be so happy to meet you on Sunday. So far the tears and fatigue are the most difficult things to deal with. The little aches and pains are not bothering me too much and I am on day 51 with Femara.
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I'm so happy you are willing to try it.....if you get my results, you will not regret it. BTW..
Peach pies are sugar free, right😜 -
I wonder if they sell it in the USA?
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Oh bevg49 I hope so.....it' s amazing stuff.
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Scottie, most pie recipes call for 1 to 2 cups of sugar,now you have to have a little bit...mine have 1/4 cup of sugar, that is all...okay for diabetics too. if you do not love them you can shoot me. lol
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That's quite a difference Isabelle....good for you....Is this your own recipe?
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yes....I am a slapdash cook & baker...love to do it...do not follow any rules and most of the time seems to turn out okay. You will be the judge. see you Sunday.
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Looking forward to meeting you and everybody else.
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Sorry Day, yes it will contain Iodine for sure.
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Superfood- Yes I have the foot pain also after sitting for just a little while. I also was diagnosed with fibromyalgia which we think was triggered by the trauma of my 4 surgeries last year. I have definitely found that swimming and walking help it. Maybe if you cannot swim you can walk in the water?
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Thank you, Ginger. I may try that. I do worry a tiny bit about getting a cut and bacteria.
Have a wonderful weekend! -
Hi: As we all know, we are all totally different. Mine kicked in 4-5 weeks after starting it. If there is anything else I could give my opinion on, please, don't hesitate to ask.
trudy
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Oh my, my thumbs and wrists are killing me. I have had this for about 2months. Went to dr had see np and thought i would get shot but she told me she couldnt give me the shot. The dr was behind and couldnot give it to me. Needless to say that was a wasted trip. Has anyone had problem and what did you do. I will get to see dr next week.
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Curious if anyone has experienced a sore throat while taking Femara????
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Hi Ladies,
I have a question. I have been on Femara for almost three years. My major side effects are bone pain and severe stiffness. In the last six months, twice, I have gotten what I thought was a UTI, out of the clear blue. I was so dry inside and had intense burning high inside that I could scream. I know that Vaginal dryness is a major side effect but in the almost three years, I have not experience it at all. This last bout has taken me down in the pain category. I went my GYN yesterday and she gave me some Estrogen Cream. She said I was so dry that it created the UTI also. My ONC said it was O.K. to use the cream to get things in balance. I cannot believe the pain I was in as I could barely sit. It felt like I was on fire in my body. Has anyone experienced this????? Can you help me with suggestions as to why all of a sudden this is happending? It has been almost three years of a nasty quality of life. I am ready to call it quits only because there is not one day when I feel semi normal. Help is appreciated...advice?
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ktmimi, several ladies have mentioned coconut oil as a natural lubricant.
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Ktmimi- I did not have it as bad as you but my Gyn and onc also prescribed vagifem 2x a week. Definitely helped.
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I kept having UTI's - I started taking cranberry supplements daily. It has stopped the UTI's in their tracks!
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OK - what is a UTI?
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Urinary tract infection
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urinary tract infection
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Hi everyone. sorry to meet you all here, but grateful your here!!!
I usually am a motor mouth typer.. have a nightmare story, but heck.. now I know I'm not alone!! I haven't started the Femara yet, 'have the script' but need to get moved etc before the 'dreaded se's' start.
Thanks to SuperFoob for leading me here.. now I'm overwhelmed AGAIN.. crap.. seems to be my MO of the last few months. I'm now nervous as hell at the SE's. I'm doing ok with my RA/OA/FM/CFS right now (that's the short list) as it's summer, Onc said it's going to be significant increase in pain & most def will get OsteoPor..been on prednisone for 5 yrs. HRT for 19 yrs staved off bone prbs, ...
Chemo was pushed out as a choice. Surgeon screwed up with mis-dx & other things, 2 others messed up with me. this Onc ran his hand through his hair, rolled his eyes in a OMG fashion.. so .. yes I'm after another Onc. one thing he did say when asked: what if I take NO treatment, what happens if BC comes back (now I figure BC also means anywhere in the body??) he stated: it'll be incurable, but we'd be able to slow it down & would probably be a stage IV. what ?? huh?? omg!! haha... thought I was TN for months as 'weakly positive ER' this is what Ms.Surgeon said.
ok, now I actually DID motor-mouth-type... sorry, so many questions! so many thoughts! so when thinking of getting off AI or not taking it.. the outcome is ummmm pretty lousy.. need another opinion for sure.. have you had any answers like that?
Bless you all .. and your families.
Cher
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PS...I couldn't sleep....& now feel apprehension /anxiety for what is to come...man I need to get my positive attitude back! Worrying about pain etc that hasn't happened yet...Geesh!!
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Hi Cher I've been on Femara almost two years with little to no SE's. Not everyone gets bad SEs and sometimes if you do changing the brand of Femara you take can improve how you feel.
Good luck! (oh by the way I am stage IV and Femara has kept the cancer in check)
Love n hugs. Chrissy -
Hey thanks Chrissy!! Wow great to hear...think I'll go with you...lol
Didn't think it fair the Onc already determined I'd have so much pain.have a great day! ' -
Cher56 - I've been on letrozole for 10 months. These are the SE's I've experienced:
hair loss and nair breaking - started taking 8000 mcg of biotin daily and that has stopped
tiredness - take daily vitamins, drink lots of water and other liquids and exercise all of which help a lot
overall achiness - same as above, but the achiness isn't terrible.
diminished sex drive - this bothers my husband much more than me, but we still have sex at least once a week, usually more, so he's satisfied, though possibly not as happy as he could be.
I was scared of the side effects, as the side effects of tamoxifen were brutal for me. This has been a walk in the park in comparison. If the letrozole does get you down, there are some other AI's you can try as well. Some people do take pain medication, I've heard, but I haven't needed anything like that. I did have fairly severe pain in my hip and left leg, but finally found that was not related to the letrozole, but rather a herniated disk in my back! You'll be fine, and the SE's of taking it are much less than the SE's of NOT taking it.
Edited to add: I've noticed that when I am exposed to any allergens, my achiness intensifies. As a result, I've become much more cautious about my exposures. I stay away from wheat entirely, and have cut WAAAYYYY back on dairy (I'm allergic to both). I avoid cats and dogs like they carry the plague (for me they do...
) and try to diminish any other allergens as much as possible - obviously highly allergic people (like me) have a harder time doing that than does someone who has few if any allergies. -
Hey thanks Gardengumby! I'm going to start it about mid Sept. The Fall cold & dampness has started & the pain switch is on...now achy, pain,stifness is back..uggg...but AI is only hope for me. Cdve had Rads but surgeon screwed that up with wrong dx & due to having open wounds wait for chemo puts me past window for it & Onc said 'risk to my life' outweighs the advantage of it. ...COPD + RA mainly he said. Am glad its not severe for you! I've heard of the Biotin + other supplements..will head to health store next week..am on lots,but I see I'll need much higher dose of supplements!
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Hi guys....just jumping in here to say that I have had LOTS of hair loss since starting
Letrozole. Went to see a Dermatologist who said I was taking too much Biotin (600)
and that the body could not absorb all of that . She has me taking just 100 three times a day. Seems so little, but I am willing to give it a try. Take care everybody. -
Oh, one question....has anyone been experiencing shoulder and collar bone pain with
Letrozole....of course, I am thinking the worst. -
oooh, yuk Scottie! man.. this hair loss business with BC is crazy! I'm gathering a 'list' of what to get at health store. I guess i should start taking Femara now, but leaning to the pessimistic side of things.. thinking I don't wanna be sick or in more pain when I go up to Penticton to have a wee R&R & be with my bff up there. Am hoping to do a road trip with my Dad down to Redding Calif.. but, will see (october) I'm in south-west BC
heres hoping no more hair loss for ya.. and no or low SE's.
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Hi Cher56: my hair loss could be caused by so many things.....not just Letrozole...
After my diagnosis, Inwent vegetarian over night, no dairy, went quite anal actually....
Lots of anxiety and fear, loss of appetite, in other words, the works. I am now on an
Anti-anxiety med plus my old anti-depressant (Zoloft) I was on the first time I went through menopause. Was also told I have a zinc deficiency......so, who knows......could be any of these things causing my hair loss. -
Regarding the hair loss, I'm on Femara for about 6 weeks now. I took a shower yesterday and when I came out there were many hairs on my stomach!! not to mention the drain. I used to have thick curly hair, had been losing some due to other meds I'm on for different stuff but now, I suspect it will get to be too much. I have to ask about the biotin. I have a special shampoo but it doesn't really work.... I am also getting aches and pains, in my foot especially. I don't know if it's psychological, caused by something else or the Femara..... and I only just started...ugghh..... I'll have to just wait and see.
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Hi bevg49.......My MO says that L causes thinning....many women here take large doses of Biotin...up to 800......I was taking 600 and my Dermatologist told me to stop as the body cannot absorb that amount. She has me taking 100 three times a day plus watching my zinc as the blood work came back say if I was low. Perhaps other ladies will come on to give you their opinion. Good luck with it as I know it's frustrating....I have been wearing a straw hat all summer as you can see right through to my scalp.
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Thanks scottie! I hear ya..when I first got FM my hair thinned right out. What's the stats on hair being restored after drug is stopped?
Bev..grrrr sorry to hear your gettig SEs so quickly! I've read here many supplements help.
Am wondering, is it (stupid) unwise for me to hold off on starting the AI? Its already been 10wks since surgery.thx -
That's my question too. I wish some ladies would post to answer that question, but they probably have all moved on by now. I will try to do some research and see what I come up with.
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Girls the hair thinning thing has more to do with the lack of estrogen than anything else. As the Femara and menopause is the cause of that then I guess you could say its a SE. Once you stop the drug a certain amount of estrogen will probably return even if you are in menopause as the body does make estrogen from the adrenals and from body fat. For this reason there is a possibility that the hair may thicken once more.
Love n hugs. Chrissy -
High chrissyb.....thanks for the response....it seems unfair because I am 65 and have gone through menopause before and lost a lot of hair then and here I go once more.
May have to spend the rest of my life wearing hats😱 -
Scottiee1 - about the biotin, are you talking micrograms or milligrams?
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I asked my Rad Onc about biotin & he said he did not want me to start anything new until I was finished rad treatments.
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Micrograms
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Yeah Isabelle, I was told the same .
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I did not actually start the AI until about 8 months after my diagnosis and after my oopharectomy. My onc seemed fine with that timeline. I have had hair thinning but I do think it is from lack of estrogen.
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Ginger - they started me on tamoxifen about 2 months after my mastectomy. I took it for about 6 months, but the SE's were far too much for me, so they moved me to letrozole - which I started about a year after my diagnosis. I've been on it for 10 months now. My worst SE is that I need a lot of sleep - instead of the 8 hours a night I used to require, I do best with about 11 - then I actually have some energy for the 13 hours I'm awake...
At first my MO said she was going to include the 6 mos of tamoxifen in figuring my 5 years of hormone therapy AND she was going to let me take a month "vacation" each year from the therapy, but she's changed her tune now. Apparently there was a study done of men with prostrate cancer that showed markedly better results for the men who did not take therapy "vacations", so I guess I'll be on the letrozole for another 4 years and 2 mos with no break.
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Saw my MO yesterday for my regular checkup. He said my extreme foot pain is most definitely from the letrozole and that movement will help (duh...knew that!).
Have a great day everybody!
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I was prescribed Femara 3 weeks ago. Within 2 weeks both my hair texture and volume changed. It felt like straw. It has definitely thinned out in the last 3 weeks. I stopped taking Femera this past Sunday and saw my oncologist on Wednesday. Since stopping femara the texture of my hair has definitely improved. My Oncologist says that the Femara would not have done this this quickly and must be something else going on. I have gone back to Tamoxifen for the next six months. Has anyone else experienced the change in their hair that quickly after starting Femara?
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You are talking to someone with lots of experience with hair loss and Letrozole. It happened very quickly and my hair feels like straw. I saw a Dermatologist who wasn't convinced it was the L. Had blood work done and it came back to say I was low in Zinc
which can cause hair loss. My GP didn't agree and I don't either. I blame L totally because it happened very quickly after I started and after 6 months of being on it my hair is still ending up on my pillow, lots of it. I just keep,it very short and have an amazing hairdresser who does wonder with it (what's left of it) However, it's just hair and when I think of the alternative, I intend to just live with it. Grrrrrr -
Thanks Scottiee1, I hear you with regards to hair loss and what the alternative is. The logical part of me says it is only hair but it is the emotional part that jumps in. My onc feels that for the time being continuing on the tamoxifen will be okay and we will revist the Femara in 6 months.
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Another thing I learned on here from the ladies was taking large doses of Biotin seems to help. I started taking 600mcg but my dermatologist told me the body could not absorb that much. She has me taking 100 three times a day. Worth looking in to.
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Friday was my last Femara, after 5 years, the onc said to discontinue, I feel happy and also very scared of a recurrence. I am wondering if my hair will start to grow in thicker and I wont have so much foot pain. Atleast since I had side effects, I knew Femara was working. Do I now have to limit my estrogen since I am no longer on Femara? I had an ooph 5 years ago. I am so scared that now I have no defense!!!
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Your fears are normal, and although it seems we all count the days, months , years till
We can stop this pill that gives us so many SE, we do all think.....so what now?...
I'm not really the one to be giving you advice since I have only been on Letrozole for
6 months, but my fears would be the same. I think now you just have to keep up with
your check-ups, listen to your body and "try" to move on.....I know, easier said than done.
I have lost a tremendous amount of hair thanks to L and would be curious myself as to whether it will return. Perhaps you could post later as I think many women are wondering
The same thing.
PS...not sure what you mean about limiting your estrogen? -
ihopeg-I get the fear, but YIPEE GIRL! NO MORE PILL! I've got 2 years, 1 month & 11 days!!
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I'm having a lot of trouble sleeping since starting femara. I've been taking it in the morning, but now think I should switch to taking it right before I go to bed.
Has anyone had this issue, and did it get better over time? I've only been taking femara for 3 days.
Thanks!
Susannah -
Susannah,
I take my letrozole in the evening along with my sleeping pill, amitriptyline, since I had trouble sleeping when I took it in the am. I think I switched from am to pm after I had been taking it about a month.
I've been on it since January 20 and I do get some minor aches and pains but it's all good.
Hope it gets better for you,
LaDonna
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Thanks LaDonna, I will try switching to evening too. Other than that, only minor side effects.
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I also take it in the evening with no sleep issues.
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Thanks Scottie, night seems to be the way to go. btw, I'm from Tain, Scotland.
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OMG I'm for. Glasgow but my Father's oldest brother lived most of his life running a sheep farm in Inverness (Lairg). I used to spend all my summers up there as a child.
We should PM each other, we have similar dx and perhaps get to know each other better. -
That would be wonderful!
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I switched to nights after 3 months-best thing I could've done I think
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Eph, did it improve your sleep?
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yes. While I taking it in the AM, I was so tired by afternoon I was having to nap @ lunch during work to make it through the day. Fatigue was terrible. I take my Femara & 1 over the counter sleep pill-just 1-& I'm good!
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I have the opposite problem. Switched to taking at night and feel real wiry and agitated. Can't sleep. Haven't been able to find relief for the joint pain. Taking naproxen and tramadol...they seem to keep me up as well...sigh, taking a self imposed break from letrozole, two weeks now with no decrease in pain:(
My greatest concern with this drug is the changes in my dexa scan. After 2 years, I have a 13.2 percent decrease in bone density. Readings are still within normal but that is a huge loss in my opinion. LDL is also elevated...another known s/e of this drug. I can only hope it is doing the job on cancer!!
Hang in there, ladies! -
On a positive note, I haven't had any hair thinning or loss!! In fact my hair stylist said my hair is way thicker than it was prior to chemo
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Are any of you limiting meat and eggs to minimize the cholesterol problem associated with the letrozole? Have any of your docs talked about this?
Also, the sex thing. Some of you report having sex. I didn't think that was possible on letrozole, due to dryness and risk of UTIs, so I haven't dared try. -
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(((Jacee))))
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Momine - there is no way I could go without sex for 5 years - and even if I could, I wouldn't ask my husband to do so. We have sex at least once a week, sometimes more. Use lubrication, and I'm not particular worried about UTI's. If I should get one, I'll deal with it - probably by drinking a lot of straight cranberry juice - it's really sour, but it does work quite well.
Also, I'm not doing anything about cholesterol yet. Mine has been a little bit high but nothing I (or my docs) are concerned about yet. I'm basically eating the way I have for years.
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oy .... cancer or no cancer, my DH would not be very happy to hear we couldn't do "it" for 5 years because of a pill... There are solutions to all problems. There are great things that counter dryness and UTI's? I've had them even before Femera. Cranberry juice is the best and when that doesn't work, there is always antibiotics. I don't think it's fair to ask anyone's DH to go 5 years! 6 months maybe but 5 years? Since things can be done to make it better, it's kinda selfish I think...
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Well girls the shoe is on the other foot here. I have gone fifteen years without that closeness with my DH.........his problem not mine. Yes I miss it at times less now than earlier but I wouldn't dream of finding others to relieve that itch. I signed on the dotted line at my wedding and promised through thick and thin.........well I think for the both of us we have had both. We are still happily wedded 43 years later with or without sex....... fair or not....... It is a commitment.
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Momine - yes if you want to have sex, go for it girl. If you are dry, there are wonderful lubricants available without prescription. I never heard that you would be more prone to UTI's while on Femara.
For me, Femara has totally robbed me of any desire to have sex. I was diagnosed 2 1/2 years ago at age 57 and my husband was 77 and up until then we enjoyed an active sex life. When we tried after I was on Femara, that part of me felt dead, my body and mind - no zip, no go, no enjoyment. I used to think and look forward to having sex - now that's gone. My husband and I have had talks - it's upsetting for both of us. Now that he is 79 and I have 2 1/2 years to go on Femara I can't just say to him - wait - it will get better. It makes me sad, and I cry. It makes him sad and he kindly says it doesn't matter - all that matters is I'm happy and healthy. I'm healthy, except for the inability to sleep at night and the aches and pains in my bones and joints and the calcium leeching from my body and it makes me unhappy that I have 'lost that lovely feeling'.
Like chrissy, we have been together for 33 years and married 29, through good and bad times, so we can get through this too.
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Thanks everyone, but I thought the vagina actually atrophied and didn't work anymore. If you have no natural lubrication, how can the vagina clean itself even if you add lubrication? How do you buy lubricants and how do you know what to buy?
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Don't give up on sex, Momine!
Here are excerpts from
http://well.blogs.nytimes.com/2012/08/06/persistence-is-key-to-treating-vaginal-pain/
Dr. Coady urges women with sexual pain not to give up, no matter how old they are or how many doctors may have told them that nothing can be done to relieve their discomfort. It is important not to delay treatment: The longer sexual pain persists, the more likely it is to result in nerve pain and dysfunction of the pelvic floor, making the problem still harder to treat.
Patience is also important. It can take weeks or even months to achieve the full benefits of effective treatment, which may involve several complementary approaches.
...
Whether vaginal discomfort is mild or severe, regular use of an over-the-counter lubricant like K-Y Jelly (by both partners) or a vaginal moisturizer like Replens can help to make sex more pleasurable. Dr. Coady has found that applying a coating of natural oils like vitamin E or safflower, coconut or olive oil three or four times a day for a month or two can hydrate the vulvar skin, strengthen it and even heal fissures.
These oils are even more effective when combined with small amounts of pharmacy-compounded estriol and testosterone, she said.
Physical therapy can also be an important component of treatment. Sexual pain often involves changes below the surface: shortened connective tissues and weakened muscles that contribute to sexual discomfort. Dr. Coady said use of a dilator or vibrator can increase blood flow to the vaginal area, and a soft doughnut ring at the vaginal opening can elongate the vaginal canal.
In addition, exercises like yoga, Pilates, qigong and others that strengthen the pelvic floor and increase flexibility can be very helpful, Dr. Coady said.
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I was prescribed some estriol once but did not want to take the chance. The oils mentioned will do the cleaning job, too! Marigold oil (calendula) was suggested by my ob-gyn. I was on Femara 4.5 years. Now I'm on Tamoxifen and I finally feel some moisture again. But I'll still try some of the suggestions above.
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Heidi, thanks for the info, but what about the atrophy? I thought that meant that it didn't work anymore. Also, I had my uterus out, so I can't quite understand how sex would work without a uterus.
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Momine sex works the same with or without a uterus. It is the muscles and nerves in the vaginal walls and the clitoris that make us feel the pleasure.
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Chrissy, not only. An orgasm involves contraction of the uterus. Without that, it seems a bit pointless.
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Momine yes I know the usterus contracts with orgasm but orgasm can still be achieved without it. There are thousands of women who have had hysterectomies who still enjoy a full and fullfilling life style including sex no matter what their age.
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Chrissy, thanks, but I remain sceptical, lol. Still don't understand how it can work, especially with the added problem of the femara.
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Momine, without getting too personal, I can tell you for an absolute fact, it works lol..... I had a hysterectomy in 2000. The gyno told me sometimes doctors accidentally cut certain nerves and that's a problem and the end of orgasms. Well, he was very careful about that and I never had a problem. That was in 2000. It worked after that. Yes, it was slightly differently. The contractions were not there anymore but it hardly mattered. The feeling was the same, mjust minus the contractions. Now, I don't know what effect the Femera will have (I've only been on it about 6 weeks), but lack of a uterus, no problem....
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Ihopeg....I know how you feel about loosing your security blanket so to speak. It's a scary thing and I"m coming up to the 5 year mark and my Onco told me that's it for the pill.In a way I'm happy because it has taken the spark out of intimacy, definitely. For me that is a shock because I never had a problem till 'this pill'. Gotta go with the flow...no choice.
Please keep us posted as to how you are doing and if your pain lessens as well. Wouldn't it be great if everything went back to normal? Who am I kidding. I'll be 64 by then.
Like a friend of mine said " Now it takes all night...to do what we used to do all night." Ha, I think that is a priceless quote.
Keep in touch.
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Bevg, thanks, that is really good to know.
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I had a total hysterecteomy last December and have been on Femara since January and it still works for me too! I must admit that I don't have the desire like I used to; but believe me, it still works for me too.
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LovesChristma, thanks for the info. Then why do all the lists of SEs say that you get vaginal atrophy and dryness from femara. I thought that meant that the vagina did not work anymore.
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Momine you do get vaginal dryness from the Femara but you can use different things as was listed earlier to give the moisture needed for sexual interaction. There is no need to deny that part of your life.
Love n hugs. Chrissy -
Thanks Chrissy, I will have to ponder. So what is the vaginal atrophy all about? Anyone know?
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The vaginal atrophy is the dryness which causes you to not have sex because of pain which leads to the atrophy. Well that's my way of understanding it. If you don't use it you lose it.
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Oh great! It isn't all that easy to figure this stuff out.
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ok, this is kind on topic, but is quite personal, but heck... dont' we talk alot of personal stuff?
many years ago.. lol about 10, I hadnt' had sex for 7.5 yrs.. yes.. exactly..lol.. I had also had a recto/cysto seal(wrong spelling) repair, which made me even smaller, & was told I couldn't ever have intercourse again. ya right.. I was in my early 40's & single. eventually I fell in love & yep you guessed it. ripped so bad had to go to ER.. well, very embarrassing, ER doc said...no more sex (also found i was allergic to latex).. my GP, said HOGWASH, he said to use k-y gel & different size candles (now this is for those that are or maybe in the situation I was in). practice practice he said, well, I was in love, so nuff said. I did use a progesterone cream (well, we can't use that now) to help bring the elasticity back, but I'm sure... if you can keep trying, you won't loose it.. but ChrissyB is so so very right.. take if from me! lol now you can have a wee giggle.
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ok, this is kind on topic, but is quite personal, but heck... dont' we talk alot of personal stuff?
many years ago.. lol about 10, I hadnt' had sex for 7.5 yrs.. yes.. exactly..lol.. I had also had a recto/cysto seal(wrong spelling) repair, which made me even smaller, & was told I couldn't ever have intercourse again. ya right.. I was in my early 40's & single. eventually I fell in love & yep you guessed it. ripped so bad had to go to ER.. well, very embarrassing, ER doc said...no more sex (also found i was allergic to latex).. my GP, said HOGWASH, he said to use k-y gel & different size candles (now this is for those that are or maybe in the situation I was in). practice practice he said, well, I was in love, so nuff said. I did use a progesterone cream (well, we can't use that now) to help bring the elasticity back, but I'm sure... if you can keep trying, you won't loose it.. but ChrissyB is so so very right.. take if from me! lol now you can have a wee giggle.
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Nanna, I just read that it takes a few months for it to kick in, but I only read that the other day.. have I started to take them? no, I'm scared spitless! I'm off estrogen after 19yrs, and the main reason I stayed on it (doc said.. oh no worries, stay on it... won't hurt.. hmmph! although I am only 'weakly positive' 1/3). I'm finding I'm so overly emotional, crying a lot, although my journey from June 14th has been a nightmare, which continues to take over my life (grr) and it's NOT the cancer, it's all the mistakes and idiot medical professionals that I trusted with my life, that messed it all up. anyways, Onc said I WILL have significant pain, because I have FM & RA & OA/bursitis/tendenitis. (oh how I wanna just say i give up)!... if the Femara gives me MORE menopausal symptoms AND pain.. well, I'm just nervous as hell. I don't know what I'm holding off on, as I"m going to have to start it sooner or later. Chemo - too late, due to my wounds/infections, radiation, surgeon said I couldn't have it, Onc said I could have, but too late now.. so Femara only thing I can use I guess. I get pretty depressed with stupid thoughts of giving up on life, and just so over the top! so guess I have reason to be nervous.
am waiting to get appt with a NEW Onc (MO? i dunno) but one in Fraser Valley Cancer Clinic, my hometown sure let me & others down!! I was happy to hear that some others havent' had SE's.. but seems those are few compared to those that do. But it's our defense.
is there anyone who held off starting it? what about the emotional SE's with the Menopausal SE's? my g'/f has now ordered me to go to the BC support group, & wonderfully she'll go with me.
hope your all doing well or better or will do better
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Cher ((((((hugs))))))). Taking the Femara doesn't mean that you are going to get all the nasty SE's...... I know, as I'm one who doesn't. I am allergic to just about everything but I must admit that the Femara has been unusually kind to me. Yes there are times I ache, there are times I'm extremely tired, yes my hair has just about as thin as I don't know what (and it used to be thick and lusterous), I am unable to do everything I used to but hey aging will do that too......all of it. I still take the little pill and thank God each day that it is there and is keeping me stable and as a stage IV girl that's very important.
Good luck with taking your little life saver.......I know you will do well.
Love n hugs. Chrissy -
the only se I'm having (and I don't even know if it's from the Femera or just life) is awful mood swings. I go into rages at people for small things, mainly my family. They think I'm losing my mind and sometimes I think I am. When I'm not angry I'm crying hysterically. Now this isn't every minute, but too often, daily. I have only been on Femara about 6 or 7 weeks so I don't know. Is this a normal side effect and is there anything to be done about it? I know I can ask the doctor to switch my drug but really, i have no guarantee that another one will be better. I don't even know if my mood swings are a result of the med.... Does anyone have any insight please?
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Bev what you are feeling can be because of the Femara but if you are feeling really off ask your doc about an anti depressant. This will help you over this hump and allow your body to adjust. What is causing these emotions is the fact that the Femara has turned off all estrogen and your body needs time to adjust.
Love n hugs. Chrissy -
thanks chrissy, VERY MUCH.... I would NEVER commit suicide but what's going on is insane and I can't say it hasn't entered my mind. Having said that, I know I would never do such a thing but I am just misreable and off the wall. I AM THE most passive personal general and yet I want to kill my dh, my sister, my son and my daughter.... The only ones I'm not fighting with right now are my grandkids ........... who are 10 months old hahaha..... Well, at least I can tell a funny and still laugh a little.... I have never been so mad for such slight reasons and never cried so hard and so much.... It's so stupid but thanks for the explanation and tomorrow I am making an appointment with the psychiatrist who perscribes my klonopin when I need it. I'm sure he'd have no problem helping me get over this depression. I MISS MY ESTOGEN.....!!!! but I don't miss my bc so I guess it's a tradeoff, right?
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Bev hoping you feel better soon. Awe for your grand baby......they bring such joy.
Love n hugs. Chrissy -
grandbabIES, chrissy..... they are twins
and yes, they do bring joy but right now, they are about it.... I have older grandkids too, 17 and 20... The other day I was even furious with the 20 year old. I wish you knew me and you'd know that is so not me. I am 1960's peace and love, good vibrations kind of gal. I am such a shrew now it's almost funny. My DH is reeling. He fights back and yells back then I go into mad hysterical crying.... He is so at a loss. If I was outside looking in, I might laugh.... -
bev, I have had the same se from Femara..on day 75 now and they are waning & have been for the last couple of weeks. In the beginning I was just like you, upset, highly emotional, sensitive, you name it...in tears constantly over everything & nothing. Much better now & so far just minimal "warm flushes" and not even many of them.
One thing I did when this started was explain to my DH that I knew it was me, not him & said " I just can't help myself and I am so sorry". Of course he already knew the emotions were not his fault but it did help him when I talked about it & we are getting through this together.
No hair thinning so far & maybe I will be lucky...my hair is already baby fine. My onc. told me our bodies need time to adjust & I believe he was right.
cher, so far I have had no bone aches, no pain at all from the Femara. in fact the back pain that I have always suffered from (for years) is not even bothering me. ...none of us know for sure how we will react.
and remember this is still all better than the alternative. It is worth giving those little devil pills a chance.
Thinking of you both & hugs. Isabelle
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Hello everyone....I just swallowed my first letrozole (same as Femara, is it not?) and since I'm seeing a 121 page discussion about this drug I'm now waiting for the SEs to hit me instantly. I hope to do without the dizziness and drowsiness the bottle label promises. Most of all I hope this stuff, along with Lupron, does a good job. Haven't had any luck with tamoxifen and faslodex.
Hope to meet some of you and complain together.
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Hi Forestdweller and welcome to the thread. Once your body adjusts to the Letrozole hopefully you won't have too many other SE's. Hoping with you that it does good things for you.
Love n hugs. Chrissy -
Forestdwell, I wish good things for you on L, I have been on it for six months now and it took three months for a couple of SE to kick in. But, now the mood swings and the crying
episodes have subsided. I did get the thinning hair but if that's all I get, I consider myself lucky. Chrissyb is right, in that I believe your body needs time to adjust to the fact
that you are being depleted of your estrogen. Not everybody gets SE and we all get different ones. If any, so be positive and hope you will be one of the lucky ones. Consider the alternative. -
I'm one of the lucky ones who is experiencing few ses from letrozole. I have some new aches but nothing debilitating. The hot flashes are the worst. Although I don't think the femara was the cause, after I finished treatment I went into a very uncharacteristic bout of depression. I was completely surprised by it because I was very happy to be through. I have since found out that this is not at all uncommon. Please talk to your doc if you haven't already done so. I did get past it and things are much better. I was willing to take whatever help I could get.
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Auntienance.....I did too but don't think it was L ...I finally got help from my GP ...anti-depressant and anti-anxiety meds....back working and feel so much better now.
I keep reiterating to everybody, don't be stubborn (I was for awhile) get help from your GP, you won't regret it, I didn't. Take care everybody. -
Thanks, ladies. First SE already hit me....very drowsy about 4 hours after taking the pill. Are you all taking it am or pm?
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I take mine after dinner..works for me.
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I take it with dinner but no drowsiness for me.
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I've been on letrozole 5 months, I take it an hour before bed, and have had few SEs as well. I'm very happy with it so far. The only SE that I know is from the letrozole is hot flashes. My onco suggested 1,000mgs of Vitamin E. I'm still having hot flashes, but I think it took the edge off. Chrissyb is my inspiration to stick with it. Thanks
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I take mine at night so when the drowsiness hits I can sleep. Doing it this way means that daytime I have no problems. Hope it works for you.
Love n hugs. Chrissy -
I take mine early a.m. & the first few days I had dizziness but not anymore. I am on day 75 & now mainly just warm "flushes" & not too many. On the other hand I have 2 days left of rads & my skin has started to itch & fry.
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Hi Isabelle: I think no matter how well you take care of the skin, most of us get some
"frying" I actually had to go to school for two weeks BRALESS...picture it. Talk to your rad nurse...she got me a prescription for cortisone cream and that really helped. -
Hello everyone,
I was on tamoxifen since last September but had a hysterectomy in May - been on Femara since May 25th. At first I felt nothing but then my hip and knee (right side) began to really hurt. My doctor put me on a medication "holiday" for 10 days and that did not help at all so he doesn't think it is the med. So now I am back on the med. My hot flashes are horrible - a few every hour and they last about 6 minutes (yes I clock them!) I take vitamins daily.
I did read about the 1000mg of vitamin E - what do you ladies think about vitamin D? I used to take 5000IU's but stopped.
Any info appreciated. Does anyone take advil or tylenol for the joint pain?
Sheri
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Sheri, I take prescription naproxen and tramadol for the pain. Not daily, but several times a week.
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SheriBell, I haven't heard that Vitamin D helps hot flashes, but my onco has me on 800IU of D-3 along with 1500mg of Calcium citrate for my bones. I occasionally take Advil for headaches but I really haven't had much bone or joint pain, mostly just stiffness.
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Sheri, I take otc naproxen for the joint pain. Works great.
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I have been on Femara for almost 4 years. I only have 14 more months to go and believe me I count each day.
Since on Femara I have had to deal with severe joint pain, fatigue, nausea, hair thinning, and anything else you can name. I stay on it because I promised my husband and my doctor but it doesn't mean I have enjoyed it at all.
I try to keep a positive attitude and most days I can but somedays it is really difficult.
I had right breast cancer with mets to 3 lymph nodes. I had a bilateral mastectomy, chemotherapy, and radiation.
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mhmama, I'm glad to hear that you have stuck with it with only 14 months to go. That's great.
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Has anyone had terrible insomnia on femara that went away after a while?
Susannah -
Insomnia...yes, gone away....no:(
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Eight month to go on Femara. I have the s/e's although not sever. There are a lot of s/e's that are visible, like knuckles that are getting big in the hands. Not necessarily very painful (morning stiffness) but it shows never the less. Insomnia, yes, but I've always been a lousy sleeper. It's all doable if there is an end to the tunnel. Boiling down in a nutshell....Cancer Sucks..big time.
But you know what? We are still here to talk about it and standing upright!
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Insomnia yep but I started taking it in the am and no more problems. I also take amitriptyline at bedtime for sleep issues, ie waking up and not being able to go back to sleep.
I do have joint pain from time to time after I have sat down for a bit, but when I get up and move around, it's okay. I do take an aleve from time to time but not on a regular basis.
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Artsee, that is what I keep telling people too, "I am still walking and talking, so it is all good." I figure I had been lucky until the cancer hit. I had 47 years of good health, never sick, never hospitalized or operated (except for the birth of my kid), so I got to make up for it in the last year.
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Dear Momine: I'm just having my first coffee, lying in bed and reading your post. Yesterday I e-mailed someone I have become close to on here. I was actually feeling a bit sorry for myself, or should I say feeling sorry for all of us. Then, I read your post and
It brought me up short, thank you . I am 65.....SO much older than you and have experienced good health all my life except having my gallbladder out so I will remember this everytime I start to feel sorry for myself. Again, thank you for bringing me up short😍 -
I've only had three days of letrozole...no insomnia. In fact the first day I took it in the morning and got very sleepy. Now I take it at night and that works out better.
Insomnia was one of my big worries with this drug. This drug is very doable even when there is no end to the tunnel, artsee.
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I will be starting Femara soon after 5 years on Tamoxifen. I haven't had a chance to read through all 122 pages of this thread but I might try. I have hot flashes/night sweats and a bit of insomnia on Tamox so I am hoping that improves. Hoping for no joint pain!
Thanks for keeping this thread up so those of us that follow can learn from experience!
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Regarding joint pain: I read that those who get it, for them the med is effective. So a little pain might be a good thing?
On the other hand my doc told me that hot flashes from tamoxifen is an indicator it's working well. I was a walking hot flash, but the drug failed me.
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ConnieHar - how long are they putting you on femara/letrozole after five years on tamoxifen?
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Good question, Day. I'm guessing he didn't answer you. LOL Scary that I'm beginning to sound like a doctor and downplay symptoms.
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for me, I have been on Femara 2 years now.
Still have aching joints, even my elbows, have swollen finger joints and they are so stiff to the point of pain. My migraines have picked up in intensity and frequency. I have hot flashes so bad that sometimes it's dripping from my forehead ................
I get frustrated easily, and it's usually aimed at my poor dear husband, and as he says my frustration swiftly turns to anger but the angel he is, he knows its the medication. I know it too but I can't seem to keep my mouth shut.
So this darn medication, that we all love to take, and need to take, and want to take, if having a lot of side effects means its working well,
then for me it must be working brilliantly!
....I have to joke and laugh at/with myself or I will start crying and and stopping isn't easy.
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gardengumby - I was told that I would be on the Femara for another 5 years. So, a total of 10 years on these meds. I am 45 so I assume that is part of the reasoning.
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For anyone who had insomnia on femara, did ambien help?
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oh my - 10 years sounds like forever, but at your age, it does make sense. I'm 62 now (60 at DX). I'll have completed my first year of letrozole in another month. I took tamoxifen for 6 mos, and it just about did me in. At my last onc visit she told me that she may want me to be on letrozole for 10 years instead of the 5 she said at first. I told her that I'd do the 5 but would not be willing to extend it to 10. So, we'll see what we see as the finish line comes closer. (Originally she told me that the 6 mos on tamoxifen would count for part of the 5 years, and that I could take a yearly "vacation" from letrozole, but she has decided that she no longer wants me to do either of those things.) It feels like somewhat of a moving target.
I've got SE's with letrozole, but they are SO much more manageable than was the tamoxifen SE's.
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Susannah, I upped my exercise, and made sure to leave about 2 hours betweenthe pill and bedtime. I am too scared to take sleep meds.
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Momine, how are you sleeping now?
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Susannah, as long as I get enough exercise, I sleep quite well most of the time. There are glitches, of course, but the norm is decent sleep.
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Originally 4 years ago my Onco said there would probably be an additional 5 years after the first 5. I'm thinking OMG!
He's since changed the theory and told me that there are no trials that have shown the advantage of 10 years on any of these drugs. So for me that's good...why take anything for no good reasons right?
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Day, Do you have some research you could share on that? I would really be interested in reading it. Thanks
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I would too.
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me also.
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Auntie and Grandma - took the aleve and whoooo haaaaa pain is virtually gone in the ole knee - this is so good because I was having difficulty exercising because of it. Ok no more excuses - time to get on the tread mill!
HOT FLASHES GALORE! Am on 225 mg of effexor but still sweat like crazy - anyone trying anything that is working??
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Sheribell, glad it worked for you!
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i'm only on femara for about 2 months now, maybe even a little less and I see my moods going off the chart. I get angry about something, usually something simple. I yell. My husband is not the angel justagirl's husband is, so he yells back and I end up screaming like a banshee. I hear myself and wonder who I'm listening to. Surely, it's not the "me" I've always been. My husband says something like "Boy, you are one nasty person" and I start crying hysterically, and I mean hysterically. I am 63 and I can't believe I'm acting this way. It's kind of like I'm nuts. Aside from that, I am startng to get pain in my fingers but more than that, pain in my hand, in the palm actually, which is something I've never heard of in my life, palm pain??. I can only anticipate that things will get worse before they get better since I have 4 years and 10 months left. I don't like it and yet, the thought of one little sneaky bastard of a cancer cell circulating is something I like much less so here's hoping every bad thing we go through means it's working better and better for all of us ..
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thanks.
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bevg49: yes, you described my husband to a T. He is an angel when it comes to my mood swings and frustration, which he pointed out to me, yes, I start out frustrated and so fast I am angry. And I am, at him, at me, at the world. I rant, I rave, tears stream down my face and my ever loving dog Jaki rushes to my side to lick my tears away. Too often I am on the floor, with my arms around her (she's 55 pounds) and my face buried in her fur.
Trust me, it is the Femara and I think the frustration at how this little tiny pill can give me so many side effects, which day in and day out, I just run out of patience to put up with.
Like you, I hate this pill, but I love it for the fact it will possibly give me a better chance at never having a bc met. I'll keep swallowing it every day and I dearly wish somehow you could give your husband just one article to read of how Femara can affect moods and maybe he will realize that him reacting to you in the way he does only makes it worse for you, which in turn makes it bad for him. We are married, for the good and the bad, the thick and the thin, and this is bad and thick but I am determined to wade through the muck.
Age has no barrier with this drug, I'm almost 60, and it is making me nutz! A dear friend thinks maybe I spend too much time alone here on our property working in my gardens, but I need this alone time, it helps to soothe me, and the anger fades away for a while.
YOU are not alone............
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I am very interested in those links as well, Day.
Thanks
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BevG and JustaGirl, I've been on letrozole/femara about 11 months now. At first my mood swings were a lot like yours - really erratic and I'd get PO'd at the drop of a hat. That's all evened out now. I still will get angry - but it's more normal angry. When my husband see that I'm not acting/reacting normally he'll say something like "the medicine must be getting to you". With those words I can usually step back and realize that I'm off track and bring myself back in line a bit.
Day - I'd like to read those studies, as my MO during last visit (July) said that there were some studies in process in regards to length of time on letrozole. She said at that time that once the studies were out we'd revisit how long I was supposed to take the drug - that was when I told her that I'd do five years but not a moment more. She said something kinda generic in response.
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Hello Ladies,
I am new tothis thread. I have been on letrazole for less than a week. I finished chemo on August 6th and my hair is very slowly returning (more on the sides/back - less on top).
I have read a bit about hair loss on this drug....I wonder if people could let me know of their experiences.
Thank-yoi
51yrs - UK lady.
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I have been on Femara a little over two months. I first experienced side effects around 3.5 to 4 weeks. Mostly hot flashes, joint pain and more recently hair loss.
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Wintersocks, I've been on femara since January and have experienced no hair loss, only joint pain and hot flashes.
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isolie & auntienance,wintersocks ... I have been on Femara for 81 days, so far no hair loss, "warm flushes but not as many now, still quite emotional but not as bad as a month ago. There is hope for all of us.
I still have moments of "sadness" & just want to cry, not sure if that is the Femara or my overall reaction to the cancer.
hugs to all of you.
Isabelle
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The vita e and taking at night seems to help the hotflashes. I take glucosomine chondrontin w/ MSM for aches and pains, and try to exercise which seems to help. If I don't take them I am pretty miserable with pain and fatigue and general discomfort. Mentally, femara is hard as I cannot handle things as well as I used to. i'm much more irritable and inpatient and my general tolerance and ability to enjoy is quite limited. Other than that, what a great drug. Still can't believe through all the research and time spent, not only is there no cure, this is the best most gentle and effective thing they got for women to put in their bodies daily. I know they've come a long way and the AIs were a breakthrough, but there is so much further we must go to gently and effectively treat and conquer bc.
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I have been taking 2.5 mg letrozole since Jan. I do experience some side effects (joint pain, swelling, some foggy memory). In consideration though it is difficutl to outweigh the benefits. I have tumour shrinkage and some memory/foggy stuff I think can be a result of knowing this cloud is over me. 15 years ago I had chemo and radiation. for me the benefits and side stuff totally outweighs radiation. That's just me but keep positive and take care and be well. K
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Does anyone have intense leg or hip pain w/ femara? Seems it's happening more and more. Not sure what to do. Anyone got any pointers?
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I've been on this pill since Nov '09 & have not experienced hair loss as a side effect (knock on wood)
Joint pain off & on; I did a self-imposed sabbatical last Nov, until Jan 1 '12, about 6 weeks worth. Since I've gone back on my aches & pains are less & the ones that I do have I don't necessarily attribute to Femara. I recently started taking Glucosamine w/Chon....whatever that is for some hip pain...so far I still have the hip pain (intermittent) but I'm hopeful.
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lightandwind....I have pretty severe rt hip pain. My Dr ordered an X-ray, all was normal. Then an MRI...still, all normal! Thankful, but doesn't explain the pain. I can only attribute it to the letrozole. Just taking naproxen and tramadol for pain as needed. Some days are worse than others. I do take 5000 iu of Vitamin D3, calcium, magnesium, glucosamine and chondroitin. I have been on Femara for 2 1/2 years, and have a 13 percent decrease in my bone density....not sure I can go another 2 years. And I only take a half pill a day! Good luck as you figure out the best way to navigate this drug....we are all so different.
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Jacee!!!!!
I haven't had a bone density since my intial one in '09, but I'm having one this coming Wed. I'm going to be curious to see result.
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Wintersocks the hair loss is n
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Oops I hit the wrong button above as I'm on my iPhone.
Wintersocks the hair loss is not total like chemo but a thinning. Some people maintain a good amount although not as thick as it used to be and then there is me......lol......I have hair like a babies, soft, fine and not a lot of it but enough that I can maintain a very short hair style.
I take my pill at night and have the aches and pains in the joints but I am also riddled with osteo arthritis which accounts more for that.
Some SE's come and go and most of them are because your body is adjusting to that little pill and a lot to do with the lessening estrogen in your system.
Hoping you don't have too much trouble with it. Good luck.
Love n hugs. Chrissy -
Hello, Wintersocks...welcome to this thread. I'm also new to letrozole...been on it a week now. No input to the hair loss. My eyebrows and lashes are coming in. Must be a good sign!! My hair has thinned drastically from Xeloda, so I don't need to lose any more.
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I've been on letrozole 5 months, so far no hair thinning or loss.
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Hello Ladies,
Thanks for such a warm welcome!
Jsolie: did you have chemo first? How severe is the hair loss?
Isabelle2: sorry to hear you are sad, I too share those feelings and I am trying to adjust, but I am finding it all so hard. I am only 3 weeks on from MX, before that chemo.
Chrissy: my hair is too like a babies!, just coming in after chemo. There is more on the sides /back than on top. it is too depressing to look at it.
forestdwell: we can compare notes as 2 newbies!. I have just taken my 7th Let. So far I seem to have little s/e - save for a reduction in appetite - but this may just be an imagining!
Rain and more rain in the UK at the moment. It feels like Autumn is gaining - but is my favorite time of year.
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Eph - good luck with the dexa scan.
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thanks for the good wishes gg. I'm operating under the assumption all is well! (fingers crossed)
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Eph...hugs back at cha!! Hoping you get great results from the dexa!
Just had 6 month appt with Onc. He said Femara wouldn't be the cause of my rt hip pain...thinks it was an injury from exercise. He said if Femara is the cause of pain, it will be bilateral...won't just affect one hip and not the other. Thoughts???
Makes sense to me, I suppose. -
Wintersocks: I'm having an increase in appetite...LOL. Got to watch those portion sizes, then I can snack a bit more often. I don't want to gain weight. With the temperatures finally cooling off a bit I'm outside walking a lot more too. Love those walks in the woods when it's misting or lightly raining.
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Anyone getting hip and shoulder cramps with arm, hand and finger numbness while sleeping?
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Ginger48 I have numbness while sleeping.I also had to have shot cortisone in my wrist toward my thumb it was aching all the time.It doing alot better.
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I had arm, hand, and finger numbness at night and sometimes during the day for the first few months but now at six months out it has stopped, thankfully. I haven't had hip or shoulder cramps but I have gotten leg cramps at night sometimes.
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I have been on it for 9 months. Get stiff after being still for longer than 20 minutes.
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Ginger, same here.
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No rash here, sorry. I've not heard of that. Have you shown it to your doc?
I get stiff from sitting but it only takes me a minute to get going again. -
Me too Chrissy but takes longer when I first get up in the morning. Fingers take a few hours to fully function again.
That being said; I am still grateful for this drug. -
Ginger I'm not sure if the stiffness is from the Femara, arthritis or just plain getting old.........lol. The stiff fingers is something new for me but again once I get them moving they are just fine. I hadn't thought that maybe it was a SE I just put it down to the fact that when I sleep I rarely move.........I've even woken with a start to catch my DH watching me. When I asked him what he was doing he said, ' just making sure you were breathing as you are so still'. Guess I gave him a bit of a scare........lol
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Haha! I move around quite a bit due to pain at night but I think the stiff fingers are definitely a side effect of the drug.
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Hi All,
Forestdwell: I too have woods near me, but feel silly walking on my own without a dog now. but I feel I need to venture out again. Sitting around is very isolating, but I live in a small ccommunity and don't want to stop and talk or have people staring at my lack of hair/breast.
I wonder if I can pose a question that I have been thinking about: I understand that 'some' people can develop a resistence to this drug and that means it no longer works. Is that correct? and if this is correct how do we know?
Is there some way of working out it's efficacy? a blood test?
Thanks,
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Wintersocks I'm not sure what stage you are but for lower stages, (1-3), Femara is used as a preventative like they use Tamoxifen. For stage IV it is used as a treatment for control of the cancer that has already spread beyond the breast and lymph nodes. We know it has failed us when new mets are discovered.
Hope that helps.
Love n hugs. Chrissy -
Wintersocks: I don't know if there's a blood test to see if you're metabolizing the medicine well. One thing you can do is report any new aches and pains to your doctor. Leave nothing out. Don't try to explain backaches away by thinking that you've overdone it and pulled a muscle, etc. If pain persists over two weeks then my doctor will do a scan.
How about wearing a raincoat with a hood when you go for a walk? You said it's raining. That way your nosy neighbors might not even know who you are when you rush by them.
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Wintersocks: I don't know if there's a blood test to see if you're metabolizing the medicine well. One thing you can do is report any new aches and pains to your doctor. Leave nothing out. Don't try to explain backaches away by thinking that you've overdone it and pulled a muscle, etc. If pain persists over two weeks then my doctor will do a scan.
How about wearing a raincoat with a hood when you go for a walk? You said it's raining. That way your nosy neighbors might not even know who you are when you rush by them.
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Hi all,
chrissyb, I dare not look at my pathology report, because the 'staging' has bothered me much more than anything else. But I think I must be at least stage 3 as I had a very large lump. I do know I have ductal invasive and am classed as 'grade 2'. I have had an MX and am seeing a RADS consultant tomorrow.
Forestdwell: Yes, it is raining (England!!). I do much more enjoy walking in cooler autumnal weather. There is fab walking country around here, very near Bronte country. I recall you said you enjoy 'misty' walks too?
I take on board what you say about aches and pains and I will be heeding your advice. I think those days of passing such things off has long gone...
I am really surprised to hear there is no sort of blood test to see how we are doing on these drugs. I mean, it's shocking if the only way we know if they are working is if we don't get mets.
I will ask my lovely onc when I see her in early Dec.
Thank- you for answering my questions
p.s over 2 weeks now and still now s/e.
Love to all
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Can't you have tumor markers drawn to see if they are going up and if they determine that femara is not working even if scan still shows neg, onc would prescribe another drug based on rising markers? I don't know just wondering. Is femara known to just stop working. I've only been on it for a few months.
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Can't you have tumor markers drawn to see if they are going up and if they determine that femara is not working even if scan still shows neg, onc would prescribe another drug based on rising markers? I don't know just wondering. Is femara known to just stop working. I've only been on it for a few months.
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lightandwind: Tumor markers don't work for everyone. Mine have always been normal and I'm stage 4.
Sure, femara can just stop working. Just like any other cancer drug. For me tamoxifen stopped working after less than a year, then faslodex after a few months.
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Thanks Forest Dweller. You make an excellent and unfortunately true point. Guess I was thinking that most ER+ respond to femara for a long time, years even. Really sad to hear that about tumor markers too. I'm hyperventaliting again. I'd like to hear from anyone whose femara stoppped working. How long did it take?
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Lightandwind I'm still doing Femara and its still holding me stable and it's been two years which I think is pretty good for stage IV. Please don't let yourself get into the pattern of thinking that these meds are only going to give you a short time before they fail.......yes it's possible but it's just as possible that they will be fine for quite awhile.
Love n hugs. Chrissy -
That's right, Chrissy, but on the other hand there are those people who have a false sense of security. They think they are on meds and now nothing bad can happen to them. Before you know it they ignore pain symptoms. That was me on tamoxifen after stage 1 cancer and everyone told me I would be OK long-term. Not so. I went from stage 1 to stage 4 in a very, very short time. Because I ignored pain in my back I had to have surgery.
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Oh my goodness, please don't think that I'm saying that you should ignore pain that you feel that is unusual......... definitely just the opposite. I think we should all be very vigilant with that but we should not spend our days worried that the meds are going to fail us.......to me that is a complete waist of the precious time that we have. Yes they do fail us eventually but that is not today.
Love n hugs. Chrissy -
This tumor marker subject is very interesting to say the least. My Onco is big into tumor markers...to him the test is very important.
However I ran into a friend the other day whose tumor markers never changed while the cancer went to her bones. They stayed in the 'normal' range just like before. Strange.
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I just read an article on the internet about all these test and scans that are supposed to detect for us ladies early signs of mets.......and they have a high rate of missing mets in the early stages. So, false security, and lots of $$$ and stress waiting to do the test, having the test done and waiting for the results.
As chrissyb said our best defense is to be aware of our own bodies and to report to our Dr if we have unrelenting pain somewhere for more than 2 weeks.
I was lulled into a sense that all was ok after the lumpectomy, chemo and rads, that with taking Femara I only had a 2% chance of a reoccurance. Then, being vain, I opted for an elective surgery to reduce the size of my other breast to match in size the bc one, and all the tissue the PS removed came back from pathology BC Stage 0, which means I had up to a 40% chance it would morph into BC....and this tissue had a history - if it was it one breast it more often than not would be in the other. Well, there went my 2% security blanket so I immediately opted for a DM, and the path report came back that the breast that had had bc had no BC stage 0 tissue but the other breast was 90% full of it.
Point being, we need to monitor and take care of ourselves. When I went back to the BS after knowing about the BC Stage 0 tissue, she said no need for a DM, it was drastic. I could just have a MRI and mammogram every 6 months and then if I got another BC, 'we' could decide then what to do. No reassurance for me as I had had a mammo on 22 November and first week in March felt the peach pit size tumor. What if next time my lymph nodes were positive.
I feel more positive doing what I can and monitoring myself than relying on a test to say everything is ok. And as Chrissy, who is a fountain of wisdom and guidance for me, we have to make peace with this as that is the only way I can grow stronger again, physically and mentally.
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Hello ladies,
I started taking Femara last week and noticed that I had small bumps in my head that are itchy, it doesnt really bother me but was wondering if any of you had same reaction as mine? I called my Oncologist today and I was told could be a minor side effect, he was busy today so he will give me a call tomorrow.
Overeall can't complain as I feel good on Femara, since I started taking it I had no pain at all, except that I am brain dead lol.....not sure but kind of gives me a calm feeling.....
Sweetangel
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Hello ladies,
I started taking Femara last week and noticed that I had small bumps in my head that are itchy, it doesnt really bother me but was wondering if any of you had same reaction as mine? I called my Oncologist today and I was told could be a minor side effect, he was busy today so he will give me a call tomorrow.
Overeall can't complain as I feel good on Femara, since I started taking it I had no pain at all, except that I am brain dead lol.....not sure but kind of gives me a calm feeling.....
Sweetangel
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Sweetangel: I've only been on this drug for 3 weeks and haven't experienced or read about itchy bumps. I often itch all over my body suddenly now. It's as if I had fallen into an ant hill. This happens when I get too hot and the worst area is my scalp, but no bumps.
So far my side effects are: increased appetite, increased hot flashes, ant hill sensations, less sleep.
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Hi Sweetangel andForestdweller I have both the overheated scalp and the little bumps that itch like crazy. I have been to a dermatologist and her opinion of those little red bumps is that they are quite common and if they get too annoying they can be removed by having them burnt which is no big deal. She did tell me the name but with my drug abused brain I can't for the life of me remember what it is right now.
I have found that keeping my hair and scalp scrupulously clean helps with the itching side of things.
Love n hugs. Chrissy
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I've gotten little bumps on my hand/wrist that itch like crazy. hahahaha never even thought to attribute it to the letrozole...
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Just remembered the name of those little red things, it Sebhoreic Keratosis. Apparently they can not only grow on the scalp they can appear anywhere on the body.
Love n hugs. Chrissy -
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Day have you had it checked out by your doc?
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its crazy that we can all have diff. reactions....i noticed i am getting the bumps all over my head....if i started scratching one they all get itchy...chain reaction lolz.........funny because one time I asked my doctor if bones can get itchy too.....and he laughed at me...itchy bones :-)....
also another se, i noticed I have been so lazyyyy since I started Femara.....like I didnt do anything the whole week......i just want to eat and sleep.....but seems impossible coz i have a 2 yr old daugther and still work full time.....i feel so slow and brain dead :-\
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I'm new to Femara and have a question. I took it about 2 weeks then I had reconstruction surgery. After the surgery they turned off the ventilator but I didn't start breathing on my own for about 5 hours so they kept forcing the breathing. I came home from the hospital with a minor cough. The cough kept getting worse. After a week I went to the dr who thought pneumonia and ordered an xray. Results came back no pneumonia but fluid in the lung with a partial collapse (CT scan tomorrow). So I'm assuming it's from the surgery, right? Saw my onc for my 3 month post chemo check this week and he said that it could be from Femara??? That Femara can give you fluid on the lungs and a cough? I'd never heard of that. Has anyone else? He took me off Femara for a month to see what happens. I haven't read this SE anywhere.
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Rosie, I would be very interested in the answer to this question as well.
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Rosie, I would be very interested in the answer to this question as well.
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I haven't either but I will see if I can find out anything.
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Rosie, the nurse in me has to chime in. Your Dr. obviously did not give you enough reversal drugs for what they used to sedate you to put you on the ventilator after surgery. Usually, even if they do use the right amount of drugs, and some docs do over sedate patients too, the reason your body didn't want to breathe on it's own could of been that your lungs were already compromised or your heart function wasn't 100%. The cough was most likely due to irritation from having the breathing tube down for so long, and if too big of a tube is used that can cause more irritation also. Fluid in the lungs is usually caused by the heart not doing it's job 100%, so a diuretic will get the fluid off the lungs. As to why you had a partial collapse in one of the lobes of your lungs (there are 5 lobes), I have no idea. Lung collapse is usually due to trauma, like from a car accident. Hope you are feeling better.
Isn't this Femara an un-fun ride?
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Rosie, that is odd. I have also had a little cough here and there and one bout of severe shortness of breath. The latter earned me a CT, where they, thankfully, found nothing. On the other hand, they still haven't given me a good explanantion of the shortness of breath.
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Just finished some reading on this subject and both SOB and cough are both listed as SE's.
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Chrissy, where did you find the list? When I asked my doc about possible SEs, he told me there were so many that it was pointless to list them.
Neither onc nor main doc seemed to know that it could be caused by femara. However, it has gotten better, especially after I started some vitamin B supplements. Not sure if there is a connection or if that was pure coincidence.
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Google Femara SE's then scroll down to Drugs.com and start reading. The list is enormous.
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OK, thanks, Chrissy. So I guess my doc did have a point.
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My worst side effect is having been given the senior discount at the pizza place yesterday. I'm only 50....lol. My oncologist will get a laugh out of this one.
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The list is pretty comprehensive and can be a bit frightening. I have a coworker who had a stroke and it was blamed on femara. She is in her 50's and doing fine now but no longer on it. I try not to worry about it for the most part and hope for the best.
But a senior discount takes the cake...lol. -
2 mos on Femara and hubby noted fuzzy "longer than before" white facial hair on my face. You see it really good in the right light and angle. I am not happy I will have to wax my face. Ugh!! Ugh!! Double Ugh. Anyone else?
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Yes. I have it too.
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Wow ForestDweller........great savings when you get them! Good for a laugh as well.....lol.
Sometimes I think knowing what the SE's are can do us a great disservice. Our minds are powerful instruments and can convince us that there is a problem where none exists. Not knowing but questioning something out of the ordinary makes life a whole lot easier as we are no longer second guessing.
Just my thoughts.
Love n hugs. Chrissy -
Stacie, I got the long fuzzy white hairs on my face too after about 2 months on Femara. Instead of waxing, I have had IPL treatments about every 4 months and I am noticing there is much less growth and I think it's been like 5 months since I've had it done.
Chrissy - yes mind over matter. Didn't you also say a while ago that maybe some of the side effects we think are caused by the Femara are just caused by some of us being in the older catagory when we started taking it?
The only true thing I know Femara has done to me is make my ankles and hips stiff after sleeping so when I get up I am gimpy but it dissipates and walking helps. And, most of all, Femara had caused a 13% loss of bone density since I had my first bone scan before starting on it....and yes, I take calcium at the maximum dose that is safe and choke down a couple of dairy products a day.
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Justagirl yes I did say that and find it very true. It gets really hard to tell a SE from an aging ague so I choose not to acknowledge either unless it is a definite one or the other......... I'm still of the notion that I have very few if any SE's that can be wholey blamed on the Femara regardless of the size and quantity of the list given.
I prefer to laugh than moan.......lol.......but that's just me.
Love n hugs all! Chrissy -
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Justagirl -What are IPL treatments.
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Thank you ladies for your input about the lung problem. I had the CT scan on Saturday and they said the dr would have the results by Weds. Seems a bit slow to me but I'm the one trying to stop coughing so I'm probably being impatient.
The heart issues justagirl mentioned might have played into this. I had Hodgkins 32 yrs ago and had radiation to the chest. 25 years later my heart started developing problems. The RO says it's "late effect radiation". So I've had a biventricular pacemaker for 5 years that has an ICD. I made sure there was a rep there at surgery from Medtronics (the pacemaker company) as they would have to pace me from the outside. Now after what you said justagirl, I'm wondering if this has nothing to do with Femara and everything to do with how I was paced. I'll see what the report says and then maybe get my cardiologist in on this. In the meantime I'm off Femara until Oct 25. Will let you know if any of this gets linked to Femara in any way.
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Reading about "Itchy" in the posts past...I'm going to tell you of my experience with 'itchy'.
For a long time before discovering my lump....I had an itchy spot that I could itch till it almost bled on my breast. In fact it was a little darker that skin tone. Who knew...that in the end my tumor was in the same spot as the itchy spot.
After the fact I researched on the web, and it told me that a sign of BC was itchiness on your breast. Very strange but beware.............
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Has anyone had shin cramps on femara? I've been on it for six months now and have the usual joint and muscle pains but tonight when I was sitting on the couch reading, I suddenly had a bad cramp on the front of my right leg (my shin). I've had cramps in my calves before but never in my shin so it was a bit unnerving. It also caused my right foot to twitch and feel weak. Fortunately, the pain only lasted five minutes or so...
I hope everyone had a peaceful weekend!
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LovesChristmas I've had cramps particularly when I first started the Femara but none ever in the shin. Have you tried upping your intake of magnesium?
Love n hugs. Chrissy -
hello, all !
i'm finishing up RADs and will be starting femara with true mixed emotions . i had gastric bypass surgery in 2004 so i don't absorb calcium and other things like "normal" stomachs do - so i am afraid of bone loss...
ihad two rounds of chemo so i am still waiting for hair to regrow...gosh i am tired of all of this- and the rads fatigue...whoa!
however, i want to know that i am doing "all that i can"...
anyhow- just wanted to say hi.....i have started at page one and am reading in incremenets-got through page three this morning!!!!!
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Rosie, yep, sounds to me like they paced your heart rate too slow and the fluid backed up in your lungs. By the time they realized their goof, the fluid was in your lungs, a lobe partially collapsed from the fluid. I am assuming being on a ventilator, with a diuretic like Lasix and your heart rate turned back to an acceptable level for you got you partially fixed. Also, the anesthetist should of been watching your fluid intake every 15 minutes and comparing it to the output from your urinary catheter. Darn, that fluid has to go somewhere, and the majority of it just can't stay in your body, even with losing some blood from the surgery and them trying to keep your veins and arteries full....but then what do I know, I'm only a nurse.
Stacie, IPL is intense pulsed light treatments. With a wand, a technician will hold it on my face for just a second and I can smell the hair on my face burning off. It also decreases the regrowth but does not 100% keep the wispy long fine white hairs off my face as I keep on taking the Femara which causes them...but like I said my need to have it done is less and less frequent. IPL can also be used to decrease skin pigmentation spots on your body. I have it done on my face as I swear since taking Femara I have more dark pigmentation spots and every morning I put on 30 sunblock and if outside wear a wide brimmed hat....or it's just old age. Oh, this wand is attached to a 100 pound machine which generates some kind of infra light. It is nothing like lying in a sunbed and is medically deemed perfectly safe if administered by a knowledgeable person. It works on facial hair better if the hair is dark and for pigmentation works better the lighter the tone of your facial skin is. Having lived in Hawaii or Australia for over 30 years, I've been very careful about protecting my skin from the sun...... My son may refer to me now as a Senior Citizen as I turned 60 two weeks ago, but I am still going to do what I do that makes me feel good about how I look.
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Barb, I get cramps in many odd places such as my ankle, toes and arch of my foot in addition to my calf and thigh. Magnesium supplements have helped with them tremendously. I can't say for sure it's the femara, as I am diabetic which in itself can make me prone to them.
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Barb, I get cramps in many odd places such as my ankle, toes and arch of my foot in addition to my calf and thigh. Magnesium supplements have helped with them tremendously. I can't say for sure it's the femara, as I am diabetic which in itself can make me prone to them.
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lumpnme, if you have an issue with bone density your onc can consider a injection like Prolia every six months and your can of course help keep your bone density up with weight bearing exercise and calcium rich foods that you can tolerate.
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Thank you for the feedback! I will try upping my magnesium.
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ptdreamers-see-the problem since the gastric bypass is that i do NOT absorb the calcium as well as others do from the calcium rich foods! my body cannot do it - i don't have my complete stomach so i will have to look at some type of shot or pill i guess to supplement--as it is i have to have calcium citrate if i take a plain ol supplement...and then too- i had my bypass to avert diabetes and high cholesterol- and cholesterol is an issue with the femara...
i'll get through this- i made it through everything else i am just not happy about it!
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my blood pressure has gone up. and im feeling some depresson and im on medicine for depresson. Just feel really yucky. Lower back really hurts and legs
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Lumpy, I was concerned about the cholesterol issue with femara, but apparently not everyone has this SE, although it is a common one. Right now, I am keeping my cholesterol intake under 200 just to be safe. I will have blood tests in a few days, so we will see.
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justagirl, only a nurse? LOL! Most of the time they know as much (sometimes more?) than the dr!! All of my dr's are men (think 1 track mind). The nurses (who are usually ladies) have a multitask brain and look at these things from different angles. Dr's should be women!!!
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Both my breast surgeon and my oncologist are women....
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All of my docs with the exception of my mo are women. I really feel that women docs "get" women better than men. At least that's been my experience. Having said that, I will note that one of the worst docs I ever had was a woman, and one of the best a man.
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In theory I agree on women as docs, except that my male surgeon's evil assistant (I call her the mountain troll) is both stupid, unpleasant and entirely incapable of multi-tasking. I bumped into her as I was checking in to the hospital for my hyster and she asked why I was there. I told her. Then she looked all befuddled and said "but why? you are ER-" Uhmmm, no, I am actually ER+. It is cool if she doesn't remember, but then she should really keep her trap shut.
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I don't think genitalia is a determining factor for me. My Onc is a wonderful and brilliant "personal Einstein" that has taken complete care of me. My BS also did a great job and my PS too.
Comfortability, compassion, learning and attentiveness comes in both male and female form. -
I agree - the first breast surgeon (who kept pressuring me) was a woman, and she was no great shakes. I found the breast surgeon I have now, but my oncologist was just the luck of the draw. I like her quite well, though she talks so fast that I sometimes (often
) have to ask her to slow down or repeat herself. I prefer women doctors not as much for me as for my husband, as I feel that he is more relaxed when I am seeing a woman. Anyway, I went and got a massage this week. I couldn't believe how painful it was - and I'm someone who has usually said to my massage therapist to do deeper massage. Anyway, afterwards I had a TREMENDOUS headache, so bad that I took a tylenol and just went to bed (even though I drank a TON of water after the massage). The next, though I felt so much better. Much less aching in my legs and arms. I think I'm going to try to get one every week....
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Saw the doc and had labs today. 4 weeks since I've started letrozole and my WBC dropped to 2.3. It was lower today, 5 weeks after last chemo (Xeloda), than it was last month, 1 week after chemo. Ha! When I saw on the femara website that some women experience a temporary drop in WBC I knew I would be one of them.
Wintersocks, where are you? Is this happening to you as well?
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ForestDweller- is the doc worried about the WBC? doing anything about it or waiting to see? i'm just wondering.....
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Lumpynme: He wasn't concerned. Said it would go back up.
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forest-that's good! always nice to hear a positive!
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Hi ladies. I need some answers and I'm getting kind of desparate. I had my surgery beginning of June with tissue expander put in. Due to serious complications - a major hematoma that put me back in the hospital for 2 emergency surgeries with 11 units of blood -- then after getting over that having the entire scar open up and being told it had to reclose on its own which is where I'm at now. It has closed on the inside but still waiting for the outside to close. I only mention this because one of the side effects is depression but maybe it's just reality, not the Femara. Anyway, since on the F, over 2 months, I am horribly depressed but worse is mood swings I have. I get so angry, especially at my loved ones (Hubby, sister, son, daughter), I want to punch them or kill them lol, usually for trivialities that would have previously gotten me slightly peeved only.... I scream like a shrew which is something not in my personality usually. Then I end up crying like a baby. I cry for every little thing now. Even worse, I have insomnia that's horrible. I fall asleep with no trouble, even on the couch before going to bed but I wake up after about an hour, have to get up for water or the bathroom, stay up, go back to sleep than wake after an hour or two... Go through this most of the night then when I'm finally sleeping, I toss and turn and hubby says I moan and groan, to the point that he has to get up because i wake him. I am vaguely aware of it. I am just so uncomfortable in my own skin. So sorry I made this so long. I just do not know if I can handle this indefinitely. Has anyone experienced similar feelings? Doctor gave me something called trazadone but so far, no help. Perhaps I need a higher dose.
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Hi Bevg49.....I'm taking Letrozole and went through the same experience as you, and I believe many of us do on the "pill"....I finally couldn't take it anymore and went to see my GP....He put me on an anti-depressant plus an anti-anxiety med.....changed my life
Feel so much better plus I'm eating again. Very rarely have to take the anti-anxiety med now as the anti-depressant has kicked in, but just knowing I have them seems to stave off any anxiety I used to have, plus the crying , the anger etc. Hope this helps. -
Hi Bev, so sorry you are having such a rotten time of it. The reason you are feeling the way you do is because the Femara in doing its job and stopping estrogen production in your body. It's the lack of estrogen that makes you scream on minute and cry the next and the insomnia is part if it too.
If you can hang out a bit longer you may find that your symptoms may settle but if they get worse (and that is always a possibility) you may need to speak to your doc about trying one of the other AI, Arimadex or Aromasin.
It's really unfortunate that a woman's body relys on estrogen to function at its peak but if you are ER/PR + it becomes our enemy. We do adjust to the lack of but boy can it take a toll on us and everyone around us.
Maybe to help a bit with the adjustment an anti depressant and a sleeping aid might be a good idea.
Love n hugs. Chrissy -
Hi bev, the lack of sleep is probably making the side effects more extreme. I was also having trouble sleeping due to pain and hot flashes. I have been taking trazodone 100 mg at bedtime and I am finally getting some sleep. I have been on it for about 3 weeks. I have been on letrozole for 10 months. I take it at night.
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Bevg- I wanted to tell you that you are not alone in your experience with femara. Reading your post made me see i am not alone because this is exactly how I have experienced femara. I am on my 5th month and my side effects have calmed down some. It was rough though and interfered with my sleep so badly, and caused so much pain it was really interfering terribly with my life and my quality of life. It's either better now or I'm just used to it. Or maybe its just like dealing with anything else that sucks. Once you accept it, it doesn't suck so bad. BC is worse and in my situation,stage III with high risk of recurrence status, I am not going to walk away from the femara anytime soon. I hope you have some restful night soon. it does improve the daytime when you do. Ativan and melatonin at bedtime has helped me often.
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bevg49: I also have insomnia. I'm in my second month of this drug and the insomnia is getting a bit worse every week. My sleep went from 7-8 hours per night to tossing and turning, restless sleep for 4-5 hours.
My oncologist warned of mood swings as one of the bigger symptoms but that hasn't happened for me. It seems that other people's stress stresses me out too, so I tend to avoid stressed out people. it's a strange feeling in my chest when I'm around stress....an anxiety feeling.
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Hi Day, May warier sister! I think I need to try melatonin as well-thanks for the suggestion.
I'm wondering if anyone has been dealing with rashes? I've had a rash on my upper chest off and on for a few months (and it's crazy itchy!).
I forgot to mention it to my onc and am wondering if it could be Femara related? -
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Hi,
About rash,
When I was on Femara last year, I got rash first on the elbow of lumpectomy site, later shoulder, back and chest. My PCP considered as a reaction from Femara and being exposed to the sun. A high dose of Claritine and an ointment from the chemist helped and in one week I was cured.
Best
Usha
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Bev - I've been on femara for a year now (well a year in two more weeks....). Anyway, at first my moods were really weird and I had some anger problems. Depression has been my "friend" for some time, and visited me often during the first few months on this medicine. It did (as Chrissy suggested) even out over time. I also had insomnia which has lessened as well - for the most part I've gone to the other extreme and want to go to bed early and sleep in late.
The drug is not fun at all, and I have a lot of body aches, and rather extreme headaches, but I keep telling myself that the good it does outweighs the bad. I will be REALLY happy when the 5 years are up, though.....
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No this drug is not fun for the side effects it gives us. But the benefits can be life-saving.
I don't want to get out of bed in the mornings, just don't want to start the day, but once I do, I'm ok. It's a weird feeling of dread and gloom and doom: like if I stay under the covers, nothing bad can happen - cocoon.
My joints ache, I have osteoarthritis in my hands, knees, elbows, and hips, bad migraines, get frustrated easily which swiftly turns to anger. Don't sleep well, no matter what pill I have tried...oh, and now 3 discs in my back have prolapsed as the calcium is leeched out of my body and I take the maximum of calcium supplements I can every day and eat/drink calcium too.
But, I am alive, so off I am to enjoy this day.
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Wanted to report that I saw my doc yesterday. I told him that I had seen that the dyspnea (which I had a bad bout of it in summer) was listed as an SE of the femara. He told me he was really dubious, because in all his year of practice he has never seen this as an SE. He thought it was a bad reaction from all the treatment I had been through.
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For those of you with pain from femara...how long had you been taking the drug when the pain started?
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Forest, for me it was almost immediate, as in the first week or two. According to my doc that is impossible, but what can I say? For me, it was pain in the feet. Doc says it usually takes 6-8 weeks for SEs to hit.
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Forestdweller, about 6 months for me.
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About 6 weeks for me for joint pain to show up. So bad I took a one month vacation from Femara right off the bat! It hasn't let up any since, so I take 1/2 a pill a day now.
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Started feeling pain and stiffness in knees after 4 months, now at 6 months it has begun to subside some. I'm thinking it was changing from Mylan laboratories letrozole pink pills to breckenridge tan pills. Breckenridge has less fillers.
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My oncologist put me on a antidepressant called Efexor for my severe hot flushes and it realy works!
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GrandmaV, that's interesting. I noticed that my new refill is Breckenridge now, hope I have the same result!
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Thanks for your input about the rash ladies! Left a message with my onc and he thinks it's an allergic reaction to something else (laundry detergent, etc.). Nope! I really think it's the Femara.
Re: SE, mine hit within the first month, followed by lots of pain in the ankles and thumbs. It seems to have subsided after a year. The fatigue is awful, however! And it's nice to know
that I'm not the only one feeling anger, sadness, anxiety, and stress. Am hoping my PCP can give me something to help take the edge off. It feels like ongoing PMS - yuk! I find prioritizing quiet time every day really helps. So does exercise, which I can't seem to muster up the oomph to do it.I just hope and pray this medicine really does keep us C-free!
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Mine started by 6-8 weeks with feet, hands and hips being all cramped up. Had the most trouble with the Mylan pink ones. Pharmacy switched to the Sun yellow ones and it got much better. Was still having terrible pain at night and hands going numb, cramping and swelling. Onc just called to say he wants me to take a 10 week vacation off the meds and see him after Christmas. I am curious if I will feel differently? I am pretty used to being in pain...
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Ginger, I have taken a 6 week break, but didn't notice a huge change in s/e's. My Onc just told me it would take at least 3 months to notice a difference in how you feel. I hope you get some relief! I so understand the pain.
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Xray, the rash may be the femara, but both my mother and I developed new allergies after getting taxotere.
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Question for those of you who are experiencing joint pain. Overall, I don't feel any pain, but both of my shoulders have problems: the right shoulder has minor rotator cuff tears as well as bursitis; the left one has tendonitis. All the info I've read on letrozole just says "joint pain" but it doesn't mention exactly what the mechanism is that is causing the pain. What I'm wondering is (a) could the letrozole have made me more prone to injury and inflammation, and (b) could it be that letrozole doesn't really affect the joints as long as they remain healthy, but makes any existing inflammation/injury worse and more difficult to treat?
I've been in PT, had a cortisone shot in one shoulder, but have significant loss of range of motion from both shoulders. Yet, every other joint in my body feels fine. -
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Day ~ that cracks me up ... menopause in fast forward x20! That's how I feel!!!!
Momine, how did you figure out that the allergies were a result of the taxotere?
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X-ray, I obviously can't be sure. But my mother has never been allergic. SHe had taxotere and had a pretty bad allergic reaction to it the first two treatments. After finishing treatment she found that she was suddenly allergic to various things.
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I had posted a while ago that my tongue felt funny like a burning and it was waking me up at night. Now I know it was from a watermelon allergy that I never had before. This could be related to the chemo I had.
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Day --- Yikes about the hair loss. I still cannot believe how much hair is left in the shower stall. I swear I have about half the hair compared to the start of this miserable journey. I have to wear it super short now or it looks like sh*t......
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Cp418.......you and I are in the same boat.....I have lost about half of mine....saw a dermatologist who thought I had lost too much for it to be Letrozole ....had blood work done, but nothing showed up. I started losing it about two weeks after starting L.
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Cp418 I hear you on the hair loss and the fact that you need to wear it super short. I also find that what is there grows super slowly as well so it only needs to be trimmed about twice a year.
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Yes - very frustrating as I brush to cover over the thin areas. My hair and nails do grow quick but my hair is at least 40% less than when I started and it wispy thin fine. The hair never grew back on legs or under arms which was nice but the head and thin eyebrows is annoying. Also within the past year or so I've had 2 small warts sprout on my finger which I've never had in the past. This just indicates my immune system is really struggling.....
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I have been on femara for 3 1/2 years with varying SEs- mostly hot flashes and muscle pain but also bone loss (doing reclast) and some blurred vision. Over the last few weeks have pain in both arms, both sides of my neck and both legs, along with intermittent back pain and unusual (for me) fatigue. Onc says I can take a 6 week "vacation" to see if the femara is the cause of all of this. (Then resume).
I am so excited! Hoping to have a week or two of feeling good. Anyone take a vacation - how long before SEs lessen?
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Mary, I took a few weeks off recently. My Onc said a few weeks wasn't enough for s/e's to go away...said I wold need 3 months off to tell any difference. maybe someone will come along that had different results.
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I took a mini-vacation early this year and it took a full 3 weeks before I realized I was without pain. It was an incredible feeling to recognize for the first time that I was without chronic constant pain as I had been trying to tolerate it for so long. I went a total of 8 weeks off before restarting Femara and within one week I was right back to my previous pain and body issues. I hate these drugs.
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I have been off it almost 3 weeks and notice a huge difference in pain and no longer feeling like a 90 year old. Just a few days ago I realized I am getting up and down off the floor of my classroom so much easier. I am off it till I see my Onc after Christmas.
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Cp4 and Ginger...that is encouraging to hear. I still have 2+ years to go though!!
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Jacee- I have only been on it for 10 months so I have a long way to go too. Dr wants me off it to see if my problems are auto-immune disorder related or drug SE. we'll see...
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I took a self-imposed vacation last year for about 6 weeks. my SE seemed to subside fairly quickly. I restarted on Jan 1 '12 & I am very happy to say that most of my SE did not come back & the ones I have I attribute to wear & tear more than a Femara effect.
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I haven't taken my Letrozole in 3 nights and have already noticed a huge improvement. I'm moving easier in my joints and muscles, my major complaint of diarrhea is gone as of today as well!! I was prescribed a blood pressure med (diuretic) 3 days ago as well as 600 mg of Magnesium at night so am taking that into serious considertion!! Wow. Didn't realize that AI's depleted us of magnesium, increased BP and how important it is for us! I think the Magnesium has made a HUGE difference for me so far! Will go back on Letrozole in a few days and see what other short term differences I notice. Doing my own "study".
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Day thanks for all your hard work looking for those links. Do you have RA? as you mentioned your Rhuemy Doc. I too have it, been on pregnisone for 5yrs, but was on HRT so Osteoporosis was held at bay.. but,... now.. after Dec I'll be starting Lev, and am scared spitless honestly ladies, some say.. oh but you may not have many SE's. but ALL the Drs & MO have given me fair warning that with my RA/FM/OA/CFS & back problems I'm in for a ride. I just really need to loose this big belly & tighten up the core, but am so crapped out with the chemo right now, the 2 walks a day is as much as I can muster. Of course I'll go on it, but like you, I'm not going to let a pill kill me.. (have to wait until Jan 2014 to get another bone density scan).
enjoy your sweetie coming home!
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My oncologist actively discouraged me from taking a vacation from the stuff, so I'm going to keep on keeping on for at least awhile - four more years to go for me. My hair really got bad, though, so it got chopped this weekend. I've had long hair for most of my life, and I keep feeling for it. Kinda weird.
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I totally lost the thread where Day posted 1 link for the Study on the 5yr Femara .. anyone help? thanks
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Hi everyone, I am jumping in the middle to say hello and that I have been on Femara for four weeks now and I was freaking out about side effects but other than a sore lower back a couple of times, I have not had any. I pray it stays that way. I have my phase 2 Diep surgery next Monday and hopefully that will finish out my year of breat cancer.
Love to you all.
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Hi Jenny sure hope you stay SE free! Sounds like you've made a great start. Good luck with your surgery on Monday! I know you will be looking forward to the longest year ever.
Love n hugs. Chrissy -
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Blech! Day, it sounds like you really got the raw end of the deal.
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Thanks all for the feedback. Am hoping for at least a week or two of feeling good before restarting. Am also interested in the study that Cher referenced re: 5 years of Femara...my onc says he hasn't seen the results yet.
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Having trouble with my heels and wrist going get shot in them next week. Will be glad when i can go off this femara. Which will be 13months and 10 days.
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Nanna have you asked to change to one of the other AI's? Sometimes changing gives you relief from the really bad SE's and well worth talking to your onc about.
Love n hugs. Chrissy -
Thank you Day
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I went to see my primary Dr. last week and very surprisingly my BP was through the roof! She put me on a water pill med and I've been monitering my bp daily. The only thing I can really contribute this to is Letrozole (besides the coffee I had in the morning that I usually have and has not caused a soar in my BP before.) I had no real symptoms except diarrhea and hot flashes for a year but right about at the 1 year point, I started having the joint soreness, muscle aches, memory problems, low energy, weight gain, major hot flashes among other things... and tenderness in my right thumb joint that was a bit debilitating.
I decided to do a "study" on myself and haven't take the drug for 11 days now. By the 4th day most of my muscle and joint pain was gone!... I was amazed. Things have been getting better every day and my BP is steadily going down but still high. Oh, and my major complaint of diarrhea (which began the day after I started taking it a year and a half ago) has subsided and I've had a couple of normal poops!!! Sorry to be graphic, but this is huge for me! I feel almost normal again!!!
Now what? I want to do the best I can to prevent reoccurance but 5 years of this sounds like prison. I'm seeing my Onc's next week. For now, I'm enjoying feeling 47 instead of 80 years old.
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Seashelly if you are having such a bad time with the Femara perhaps talking to your doc about trying one of the other AI's would be better for you. I was on Arimidex to start and like you felt really bad. Doc changed me to Femara and I was much better. I've heard quite a few women have found the same thing.
Good luck! -
Thanks Chrissy,
I've also had different SE's from different manufacturer's of Femara and finally found the one that gave me the least SE's which is Apotex. Milan and another pink one are bad for me. I think I'm extra sensitive or something. Maybe Arimadex would work with me better. I'm kind of scared right now about playing around with my BP until I get it under control. I look forward to talking with my Dr's. next week.
I appreciate the encouragement and glad you had a good experience changing meds!
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Seashelly high BP is a SE of all the AI's. I had high BP before BC but now it's through the roof and I'm on meds for it. Thankfully they are working well. Perhaps it may be time to look at meds for yours as well. BC sure is a gift that just keeps giving.
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Thanks Chrissy, I forgot to add that my Dr. put me on a bp med - hydro... something 25mg.. water pill and I've been taking that for 11 days. I'm thinking I may need a higher dosage and/or something else when I see her in a few days. This seems like a scary game of roulette. Sure wish there were more difinitive answers... or better yet, a CURE!!
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I'm on two other meds besides the fluid pills. They are Micardis and Noten. The combination of the three seem to do a reasonable job for me. Good luck when you see your doc.
Love n hugs. Chrissy -
Hi! I've lurked around a few times, so thought I would look to see if any of you had answered my question. I've been having lower extremity pain knees, ankle and feet as well as arm and finger pains. I had called my Onc on Friday and she said it was the medication. It wasn't until I started reading that everyone was having the same form of pain. My pain started about 6 wks into the meds and now that I'm 5 mos into it, it seems like its getting worse. Getting up from a seated position kills me, and then having to walk brings me to tears. I'm taking glucosemine to help with some of that. I'm thinking about having my Onc switch me to something else.
I read someone say that their dr put them on Effexor for hot flashes. I've been on it since June and it works wonders, however, one of the SE's of the Femara is excess sweating. So sometimes it works wonders and sometimes I need to go take a shower shortly after i get to work.
christy
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Hi Christy. The joint pain can be a bit of a killer and taking glucosamine is a good thing. You might also like to try an anti inflamatory like Mobic or if you are into the natural, Boswellia Serata and Cucumin. I take all three as I have osteo arthritis as well and with these added into my regime, I get a good amount of relief.
Love n hugs. Chrissy -
thank you Chrissy. Do you know if any of the naturals you've listed above have any soy or estrogen products in them?
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The ones I take do not but you will need to read the ingredients on the packaging. Boswellia comes from tree bark and Cucumin is part of the spice Tumeric anything else would be from the fillers.
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Chrisrenee, I have been on femara for about 7 months now. I get the aches when getting up from a chair, and some days my feet hurt a lot. It is really the joints in the feet, but it feels like they are just aching all over.
It helps to move. If you are sitting for work, puter etc, get up every 20 minutes and walk around the table 3 times. I also try to walk 1-2 hours a day and it really helps. The more exercise you can get, the better it is.
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momine- Thank you for the advice. I feel like such a baby by wanting my Onc to change my medication. When my ankle started hurting me I originally thought I sprained it, but now I know I did not. So I don't know what to do. I'm just so frustrated with it all.
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Chris, it may be warranted to try another AI. It is hard to assess another person's pain. For the time being, I feel this is doable, but it wouldn't have to get a whole lot worse for me to change my mind
I have just been surprised at how much some exercise really does help, in my case anyway. -
Because of other problems I cannot exercise although when I'm up to it a gentle walk does help some so I revert to taking the anti inflamatories which help a great deal.
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Chrissy, yes, that can be a major problem, very true. But if the anti-inflammatories do the job, that is good too.
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Hi ladies,
I have been on femara now for 2 months and the joint stiffness and pain seems to be getting worse. I agree that exercise really does help alot. I feel i can manage these symptoms but what i am really having trouble with is the fatigue . I feel like i could just sleep all the time. Has anyone else experienced this.
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yes. sleep is my friend. a lot of it. I used to get by fine on 7 or 8 hours a night. Now i NEED 10 and really really like 12.....
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Fatigue is one reason I take mine at night. By doing this I don't seem to drag so much through the day.
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chrissy i take mine at night too. between that and my sleeping pills i sleep like a baby.
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Lol Chris, I with on that one, the little pill and a sleeping bomb and the lights are out for at least eight hours and no dragging when I wake. It's a good feeling.
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Yes, I have had some fatigue on and off. In part because my sleep was not continuous. Again, I find that exercise helps. The more I exercise, the better I sleep and the less fatigue I have.
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I don't really have that much fatigue during the day. (I also take mine at night). I just never seem to get "enough" sleep until I've slept for 10-12 hours. I do exercise daily (well, I didn't today.... up too late last night). I've just started (a couple days ago) taking melatonin, and I'll see if that has any benefit. I was taking tylenol to help me sleep (I'm weird it knock me flat), but started worrying, so switched to melatonin. Hubby says I've been in a better mood the last two mornings, so we'll see.... Today isn't a fair comparison, as I was up extremely late watching election coverage.
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Has anyone switched from Femara to another drug or come from another drug to Femara? My joints are killing me, just when I think I'm starting to do better I wake up and my arms feel like limp noodles. I can barely move them without dying in pain. I'm just curious, I don't know if by going to another drug if I'm going to have worse symptoms. I'm so confused I don't know what to do.
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Chrisrenee I swapped from Arimadex to Femara and I have done sooooo much better since doing that two years ago. To help address the aches and pains try taking an anti inflamatory each day. I take Boswellia Serata and Curcumin and the pains have certainly dissapated. These two are naturals but there is also one called Mobic which works very well also.
Hope this helps a little.
Love n hugs. Chrissy -
thank you Chrissy! I just have so many aches and pains that I don't know whether it's coming or going. When I wake up my arms kills me, it almost feels like someone has beat the hell out of me at night and I used my arms to defend myself. I don't want to come off as being whiney or anything but this is miserable.
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Oh I sure can relate to that!! You sure aren't being whiney when you star how you feel and we all get it.
I don't know if my aches and pain are Femara related or from my arthritis which is extensive I just know that the anti inflamatories do help.......a lot! and without them i hurt......a lot! If you just take the naturals it may take a couple of weeks before you 'notice' a difference as they need to build up but take them every day whether you feel better or not. Eventually you get the benefits but we are all different how our systems process and use these compounds.
Love n hugs. Chrissy -
I can relate, too. I was doing pretty good until about a couple of weeks ago. I had been stiff and some pain, but when my pharmacy changed to a different generic company a couple of months ago, the pain subsided some. Then about 2 weeks ago I woke up with terrible pain in my right knee. It also get's locked either bent or straight. Hurts to put weight on it. My pcp thinks I may have a torn meniscus. If it is, I'm sure this drug contributed to it, by making my joints so stiff. I just started waking up with numb hands, too. So it's back to the pharmacy to see if they can try another generic company. I'm think of asking for Roxane Laboratories version next. It only has 6 fillers as opposed to 11 in the breckenridge one I have now. I've only been on letrozole 7 months so I hate to switch to a different AI, yet. From what I understand there are only 3 and I have a long ways to go, so I hate to blow through them all too soon. I just started Acetyl L-Carnitine for the neuropathy in the hands. I've been taking 8 grams a day of curcumin since July and plan to add Boswellia Serata this week. My pcp put me on lortabs for the knee, and it helps some, but I try not to take it very often, because I don't want to get addicted. Chrissy is my inspiration so I'm determined to keep taking an AI.
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Hi Chrisrenee7,
I'm an old-timer on Hormonals. So some my remarks: Two months after taking Femara SE's struck with all force. 18 months I was really battling, despairing, doing all possible to lessen it and going on. Last fall my MO decided to change, ranging the SE’s from easier to hardest: Tamoxifen – Aromasin – Arimidex + Femara, because of former thrombosis I couldn’t get Tam, was beginning with Aromasin from January this year. I must admit I’m doing well on and the body is in some way adapting to lack of estrogen. You should speak with your MO about skipping to another medicine!
All the best!
Usha
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Thank you Usha, my husband and I are actually contributing some of the pains to Femara and Levaquin. I have been on Levaquin for 3 weeks now. Levaquin causes some deep muscle aches and pains as well. I've got 3 more days left on the Levaquin then I'm done hopefully with it.
christy
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I just got appt with new onc. My other onc was not going to be in my network,so had change onc. Will be glad, the change will be good.
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Anyone having scalp pain from Letrozole......it seems to vasilate between being itchy and being painful?????
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Scottie that is the one thing that I thought I was alone in so your answer is yes. My hair has gotten so thin but the shedding seems to have now stopped.
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Thank you Chrissyb......I have also lost so much hair, but the scalp pain and itchiness is Isomething fairly new.
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I had itchiness everywhere and a hair on my skin felt awful! I am on a break from it now and that has gone away.
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Good to know it goes away....however I have another 4 1/2 years to go....yikes
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Hi Ladies, I have been on femera for about 8 months after completing 5 yrs of tamoxifen (in addition to surgery, chemo and radiation). The TAC(chemo) left me with lots of muscle and nerve pain that gradually went away after about three yrs. Now I am feeling totally beaten down by femera. I tolerated tamoxifen fairly well but femera is causing such fatique, muscle and nerve pain, loss of sex drive as well as lately I am feeling depressed and very unmotivated. Pre cancer I was so vibrant, working, exercising , raising a family, laughing etc. I just hate femera and am thinking of quiting. However my Onc says it is the new protocol to do 5 yrs of femera after 5 yrs of tamoxifen if you are at high risk for recurrance. Is the benefit really worth this poor feeling? I want to do all I can to stay NED but am feeling very sad thinking about the next four yrs of this . Will the side effects diminish? I need some hope !
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hopelives Did your onco mention that there are other AI's? Ask him if you can try a different one. Some of the ladies here have had success with that.
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I had only been on it for 10 months but was having a terrible time with fatigue, pain, joint stiffness and arthritic SE (felt like i was 90 years old) so dr wants me off for 10 weeks. Will have to decide if I am going back on or trying a new one in January. I did not realize how bad i was feeling till I stopped taking it! Can not live like that for 5 years...
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Hi ladies, I have only been on Femara for about a month and other than some minor soreness sometimes (in the am when I wake up) I think I feel pretty good. I did start taking it at night and it has helped me sleep better. I like that I can take Femara and not have to give up my antidepressants. I would not be okay doing that. I sure do hope it keeps on working.
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Thanks for your input ladies, it always makes a person feel so much better knowing they aren't alone ! Ginger i think I will try and see my oncologist and see if I can take some time off also, I can't even remember how it felt before I had all these meds coursing through my blood, I long for a feeling of health and energy ! Cheers
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Hope, I would recommend exercise and anti-inflammatory foods. Like you I had some nasty inflammation issues after the chemo, and the femara can do something similar. Several online nutrition guides have inflammation scores for foods, but basically the idea is to get rid of refined starches and bulk up on the veggies. Onions and cabbages are particularly good, so I make sure to eat one or the other (in raw form) daily.
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Thanks Momine ! I have been trying to keep up with my exercise, but just feel so worn out and basically like you say, "inflammed" the next few days that it has been getting me down. My mood usually is elevated the day I exercise at the gym but it's the next few days that are bad. I think I'm going to get out my cross country ski stuff today and see how some fresh air will help also ! Sounds like you had a rough go of the cancer treatment, how are you doing now? I will definitely take your advice and check out the foods that cause more inflammation. What do you think about taking some Aleve to combat the achiness, I hate taking more stuff but maybe it will help my mood also if I'm not so sore every day. Keep in touch !
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Hope, you should ask your doc about the aleve. I don't take anything, except a baby aspirin every other day. It can be hard to drag yourself out to exercise, but I pretty much set it as a goal and think of it as medicine or my daily shower. I always feel better after.
My treatment was pretty intense and although I was lucky not to have anything go horribly wrong, I was really worn out by the end of it. The first time I went to the gym after my treatment, I almost fainted after 15 minutes on the treadmill. It gets better if you stick with it. Now I walk 1-2 hours a day and do 40 minutes of strength training 3X a week.
Getting outside sounds like a really good idea.
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hope, I was taking a tylenol each day, but a few weeks ago decided to stop. My hubby tells me that my moods have been better since I stopped the tylenol. (I cannot take NSAIDS like Aleve, so they weren't a choice for me.) As Momine says, it's important to eat as non-inflammatory as possible, and exercise does help. If you have allergies, stay as much away from your allergens as you can - they will make you ache much worse.
I also take a number of supplements such as curcumin and ginger which IMO help. I've been on it (letrozole) a little over a year. I had such horrible SE's with tamoxifen that I only did it for 6 months. I don't want to change again, as my oncologist seems to restart the clock whenever I change meds. So for me, right now, a little under 4 years to go.
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momine, so true about the exercise, I could only do 10 minutes and start and walking up stairs totally winded me. Now when I bound up one flight of stairs I feel so grateful and I smile!
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Day, your post about the letrozole not causing the side effects, is important to reiterate. The drug is doing its job, blocking the estrogen, keeping it from fueling those breast cancer cells. The hair loss, joint pain, hot flashes, insomnia, are all symptoms of low estrogen. Make sure your vitamin d3 level is above 50. That has helped me for the last 10 months of taking the letrozole.
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Hi all I have just finished my years of tamoxifen. I also did a 5 year trial ( I got a shot of triptorelin) every month to shut down my ovaries. Because I was pre-menopausal when this all started. Now my doc thinks I should automatically be post-menopausal now naturally due to my age and the 5 yrs of chemically indused menopause. So he wants me to wait for 6 mths then start femara. I have been reading about the femara and I am spilt on it the pros and cons. It kinda was a blow cause I was hoping this was the end of BC because I did all the treatments and thought I was cancer free. Just really mixed feelings. I'm just looking to see has anybody had mild se from the femara if so what or how bad is it really.
Thanks for your help
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Janice, hi and welcome. I would describe my SEs from femara as mild, but it is probably very individual. Unbearable to one person may be no big deal to another.
I have (consistently):
Hot flashes. This is annoying, but not so bad that it really messes me up.
Painful joints, especially in my feet. If I have been sitting for a while, I feel very creaky (and cranky) as I try to straighten out my achy skeleton, but it passes. The foot pain is annoying, but for me bearable. I have had a bad back all my life, so compared to that, this pain is not that big a deal.
I have also had some SEs that came and went fairly quickly, a few weeks of weird depression is the the one I remember best.
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Oh, and about that there foot pain. I went to get some new booties today. I put them on in the shop and the pain was bad. I felt all sad that I wouldn't be able to get them, but then I asked for a size bigger than I normally wear. Problem solved. I wear them with soft, cushiony sock and it is totally fine.
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Janice, ChrissyB has had very few s/e's with Femara. She will probably be along soon to encourage you. It does seem to be very individual. Would say mine are close to severe.
Everyday the thought occurs to me to just stop, but somehow I manage to keep going! 2 years left to go! -
Momine and Jacee thanks for your input....I'm probably going to try it and see what happens and if it is unbearable I will quit it. Then again I don't know what menopausal state I will be in either. We never discussed if I was still premeopausal what course of therapy I would need. I'm just trying to get some more information before I make the decision.
Oh regarding se they are worse then the tamoxifen? The se I had with it was come and go hot flashes (mostly at night) which I think brought on fatigue, weight gain, mood swings, low sex drive and hit and miss depression.
Thanks again ladies
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Hi Janice I've had very few SE's from Femara and those I do are well controlled with natural medicine. The list goes like this:-
No sleep........changed taking tab to night time.
Aches and pains..........caused by lack of estrogen but controlled by taking Cucumin and Boswellia both of which are anti inflamatories.
Itchy sore scalp and hair thinning.
These three are what I call the on going but I have had for very short periods early days of me taking the Femara:-
Mood swings, dizziness and hot flashes (still get them occasionally).
You will find that ninety percent of the SE's are the bodies response to lack of estrogen rather than the bodies response to the drug.
I only took Tamoxifen for three weeks as I had an extreme reaction to it, aka it put me in hospital with a suspected heart attack. We are all different when it comes to reactions the only thing you can do is try it to find out how you will react. Always keep in mind there are some things we can do to make our lives a little easier and tolerable in order to get through all of this.
Good luck!
Live n hugs. Chrissy -
Day, sorry, I must have misinterpreted your Oct 19th post when you said the letrozole itself doesn't cause joint pain, the lack of estrogen does. In that post, your comment about it causing menopause x 20, was spot on. I've only been on it for 10 months, and so far, so good. We'll see what another year of less estrogen brings, and how many more SE's I can tolerate.
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Chrissyb thanks for your input
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Janice, in regards to tamoxifen, I don't think you can compare. I (personally) had a hellish reaction to tamoxifen, but letrozole, though painful, is doable. (I've been on it a little over a year).
I have rather severe muscle pain and stiff joints, headaches and fatigue. Massage helps.
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I agree, Letrozole/femara for me is doable apart from my thinning hair and a few aches and pains...not so bad.
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Scottie, have you tried biotin for the thinning hair? I had to cut mine because it got too brittle, but the thinning has stopped.
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Yeh, I have tried EVERYTHING....the thinning has lessened somewhat and not so brittle
anymore, but I'm 65 so what can I expect?......lol....thank you for the advice however.
I just keep it very, very short and put a colour rinse in it once in a while....in the scheme of things, it's just hair....lol -
I'm 62
and I know what you mean. My hair is still to my shoulders (was down the middle of my back, I was one of THOSE old ladies.... 
LOL). I'm thinking of going shorter yet, but it's still a shock to my system to have it as short as it is. My only real splurge (other than an occasional good bottle of wine 
) is really really good shampoo and rinse. I always cringe when I buy it, but I get Kerastase (especially that for dry hair), and have been really happy with the results. -
I thought about keratase so if you tell me you are really happy with it, I'll give it a try....so expensive though. Gardengumby, if you are happy with your hair, don't cut it, enjoy it...
WTH....wish I could join you in a glass of wine. Happy Thanksgiving. -
Happy Thanksgiving to you, too (Well, yours is already over isn't it?) So, Merry Christmas a little early!!!
(I like a big glass, but I don't think we'd both fit in a glass of wine!!!
) What kind of wine do like best, red or white? Living in Washington we have some REALLY scrumptious wines, and I've gotten a little spoiled. (Really a lot spoiled, but what's life for, if we don't spoil ourselves and our spouses.... )I do like Kerastase. I use the one that comes in a beige bottle/jar with an orangeish lid. It's awfully pricey, but I figure getting my hair cut every few months would cost even more, so for right now, that's my excuse....
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....I'll try it and let you know. Wine...hmmmm....red is my colour of choice.
Living in Toronto, we are not far from Niagara Falls and the Niagara region makes some
amazing wines including their famous ice wine!!!!
Would we fit in a punch bowl together....lol -
You've just peaked my interest....Vineyard..near Niagara Falls. Ahhh, the wonderful memories. I love, love that area and the beautiful wine country.
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I've never been to Niagara. We'll have to add that wine country on our list of places to go (and things to taste!!)
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Ladies, maybe through some Miracle we could all get together there sometime and have a "vineyard crawl".....lots of fun...💃
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Scottee...You are nice and close!!! I'd have to 'fly'. Bahhhhh.
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Hi all~ I'm new here switching from Arimidex (Anastrozole) to Femara. Can anyone share a GOOD experience that they've had with this switch? The joint pain, especially in my right thumb cmc joint, was disabling on Anastrozole. Please keep the not so good experiences in the past. I'm looking for those who had success because I need to hold on to hope that the Femara will be better than the Anastrozole. Thanks!
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Csquared, on my 3rd year. have had ups & downs, but for the most part I'm fine on Femara. JOint pain is minimal & not certain it's attibutable to the pill anyway. Good luck.
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C-squared, I have joint pain on femara, ain't gonna kid you on that, but I find it completely bearable, for the time being anyway (8 months so far). My hands are achy first thing in the morning, but it passes quickly. My hips feel creaky when I get up after sitting a while, but that also passes quickly. I do get pain in the joints in my feet, and that can be annoying, but it can be "walked off," with a bit of determination, and it is not all that intense.
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Hi C-squared - love your avatar. My experience with it is about the same as Momine.
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I've only been on it two weeks and can hardly function. Fatigue, nausea, fluish, migraines. No quality of life if on phenergan and painpills every night. I had a nasty reaction to Arimidex- so still searching.
Amen to what Day said
My SE's are giving me no quality of life and will end up homeless so a lot to think about and talk to my Dr about this week
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The only SE's that I've really had are:
nauseated with alcohol - haven't had a drink in 6 months
Refuse to take Levaquin and Femara together- this caused MAJOR joint and muscle pain for 3 weeks while on it.
Thinning of hair- it was a huge shock at first but now I'm used to it, plus I have some to lose.
Other than that, I have not had any "real" SE's
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Interesting- I just finished Levaquin yesterday- so maybe I will feel better soon!
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Amy- are you having pain in your legs, feet, arms and fingers? That's where mine hurt the most.
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Hi girls, hope that you had a nice Thanksgiving.
I tried taking Femara and in a very short time the side affects are affecting my life negatively. I have been researching for hours and would like to point out that so many things in our environment are full of estrogen including the meat, milk, plastic bottles, the lists goes on. Many young girls start their periods early, or have breasts due to the hormones.
I am feeling: Why take these pills and then get slammed with outside estrogen's. I also read that estrogen stores in the fat tissues, I wonder BMX has anything to do with the level of side affects.
It would be a good poll.
I do now understand the need for eating well, organic if possible and exercise. Drinking lots of water.. ok I have the drinking lots of water down
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I am definitely beginning to second guess my switch from Arimidex (Anatrozole) to Femara. I haven't started the Femara (generic?) yet but you ladies are making me very anxious! I was hoping to hear of some POSITIVE experiences with a switch of this type. I DO understand that ALL of the AIs are estrogen depleting drugs. I was just hopeful that perhaps one reacted different than another based upon our individual biology. Any advice?
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C-squared- I think responses to meds are very individual and the only way to know how you will respond is to take it and see how it goes. There are definitely some people who do well on Femara; I hope you are one of them. Best of luck!
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I switched from Arimidex to Femara about 4 years ago because I was having such unpleasant side effects with Arimidex - in my case, it was worth the switch - I have some side effects, but nothing like the ones I had on Arimidex.
I hope you'll have the same experience, but since we are all different, there's really no way to tell for sure until you have tried it. I wish you the best of luck
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c squared-ChrissyB is another who switched from another AI to Femara. she is a very happy that she switched gal.
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C-squared, Eph is right. I switched from Arimadex to Femara because I had NO quality of life on the A. The SE's from Femara are so minimal for me that other having to take it life is good!
Everyone reacts differently so give it a go.......you'll never know if you don't try. Good luck!
Love n hugs. Chrissy -
Sandra, I eat very little meat and dairy after my DX and keep thin. I also exercise and make sure to get lots of fiber in my diet.
I had a BMX, but I can't say if that has anything to do with what SEs I do and don't have.
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C-Squared - I switched from Tamoxifen (BRUTAL) to Femara - not bad. I never had Arimadex, so can't speak to that, but as others have said - everyone is different. I personally have no foot pain and very little and only occasional pain in other joints (including hands). I've been on femara for a little over a year. I do get occasional muscle pain primarily in my thighs, but it seems that as long as I take Vitamin D-3 religiously that pain is held at bay.
Good luck.
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Any of you ladies experiencing back pain with Letrozole????I have been on it for 8 months now and my back aches all the time!!!!!
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Well, I'm taking letrozole and I've got back pain, but I had back pain before I ever started the letrozole. I do now, though, have more hip pain (had a density scan, though and it was GREAT, so I don't think it's that (for me, at least))
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Hi Day: Thanks for responding......I also had a bone density test done a few months ago
and I'm still in the green zone, which is good, so I don't think it's that either. I used to get
mild backaches before BC....I'm 65 so attributed to my age, but yesterday, I could have cried with the pain. I took two Tylenol extra strength and an anti-anxiety pill and today my
back feels much better, not perfect, but better. Someone posted before that if you have a
weak area in your body ie your back, that's where Letrozole will hit, perhaps that's it, who knows. Reading way back (2009) I noticed quite a few women complaining of back pain
so maybe just another SE to add to the list.....lol -
Not that this will "cure" anything, but we purchased one of those exercise balls (the blow-up kind that you can sit on) and I sit and rotate on that every morning. It really helps with stiffness. Also, after many years of a truly touchy back, I've found that a VERY good mattress means everything. We've got a latex mattress right now, and it was perfect when we purchased it, but even a little indentation will cause my back to hurt - so next mattress is going to be one of those kind that is adjustable to each person - I think it's called a sleep number bed. I have a couple friends who share my hurty back thing, and they swear by them, so even though they are expensive, it's going to be an investment in lowered pain, I hope. (The latex wasn't cheap my any means, and was supposed to last forever without developing a dip - not so)
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Thank you Day.....do take Ca and Vit D3 and Mg but I will start taking K.....my back pain is much better tonight, so who knows what all that was about.
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One word in regard to vit k, it helps blood coagulate, so if you have elvated risk for blood clots, be cautious.
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Thank you Gardengumby, I am an ex dietitian so was aware of that. My husband has issues with blood clots so I'm always researching things for him.
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Calling all ladies who are experiencing hair thinning and/or loss....it's a miracle!!!!!!
I started losing my hair almost immediately upon starting L 8 months ago. Was getting ready to go shopping for a wig!!!! About 3 weeks ago I started to see a big difference and everyone else is noticing it also. It's getting thicker day by day...soooooo happy
AND my nails are now in great shape, growing long with no more ridges. Hang in there ladies.....patience. -
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Thank you Day.
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Thanks, Day!
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Hi all,
Back to 'back' pain. I've had it before BC and I have it worse now. I have 6 month left on Letrozole thank God. It has gotten soo much worse in the last month. Right low back, around that hip and into the right groin area. I'm so sick of pain. I went to get a massage this week and she got all the pressure points in that area. Felt good. Comes and goes. I don't like to take any pills for pain because that raises my liver enzymes. So I'm between a rock and a hard place.
I also go to yoga and try to do the stretches at home. It seems the day after my class I feel worse. I think maybe it needs to be an every day commitment. I take all the vitamins I should be taking and hoping that they are doing a little good for the bones. On top of everything I have osteoporosis which is not on a good 'scale' as far as numbers go. Sigh.............................
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Hi all! well, I'm again not happy with my long time GP grr. had a bit of physical yesterday. was saying, yes am a tad nervous about going on Femara in a month, as 2 MO's have told me due to my underlyinig RA/OA/FM ect.. I'll have significant increase in pain! GP said basically, hogwash! he has many patients on Tamox & Femara, and no biggy for them! hmmph! I said, well, also the osteoporosis that will increase, he said (bang him over the head), well, your not high risk.? huh? oh, well, yes your on prednisone... duh Dr. been on it 5.5 yrs, my grandfather, mother & aunty all has OP very severe, yes mainly due to prednisone for COPD (which i have also) but... he sluff's thing off too easy. I've had him for 12 yrs, so difficult to find a new dr.
so bottom line I have to stop borrowing trouble & stop worrying about what may or may not happen.
have a great day!!!
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Thanks for the info about K2, Day.
I may add it to my repertoire of supplements.... (which I just realized I forgot to take this morning.... ) -
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Day, my local health food store carries it.
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I do have an apt. with my Gyne on Monday.
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Artsee you gave me a good idea with having a massage. I gave myself a present and bought 3 one hour massages and got one free, a special for the holidays.
I hurt my knee doing Zumba 10 weeks ago and am still having pain after doing PT for 3 weeks. I thought a massage might help and let's face it, it won't hurt.
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dkerler....just noticed we have the same DX. You will love those massages. I'm in my own little wonderful world when I get them. I too got three specials at a Holiday open house. I think we need to all get the insurance companies to pay for them don't you? They are so good for every-ones well being.
Let me know how your body reacts to your next hour of 'bliss'.
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Howdy all -- I begin Day #1 of Letrozole tomorrow -- see the oncologist again in 6 weeks to report any side effects (hopefully I will be lucky and there won't be any!)
Any words of wisdom for a newbie?
Do you perfer taking morning or night, and with or without food... (?)
Thanks for any input.
Also, my insurance does not cover meds. Anyone have a cheap source of Letrozole? My doc's office sent me the forms to fill out for Rx Outreach (which offers L for $30 if I qualify) -- but I paid $300 for my first 44 pills (Sam's Culb supposedly "discounted price for upgraded members) -- and I about had a heart attack.
I called Costco in Albuquerque, and they said $25 for a 90-day supply -- but when I went on their online site, they had no Letrozole -- only Femara for about $1500 for 90 days... so I don't think I can trust that $25 quote. My local pharmacy (usually extremely high out here in the middle-of-nowhere) said $69 for 90 days -- but I am just beginning to wonder if there has been some very recent spike in price of Letrozole, since the pricing seems to be all over the place... anyone know of some reason for this?
Thursday I got all bent out of shape and spiraled into a depression about the price disparity -- ranted on here a little -- and then just got too exhausted -- had to let the anger go and think new thoughts. But in 44 days I need more pills and I sure am not getting them at Sam's Club in Santa Fe ever again!
Anyway, thanks for any insights you may have for a first-timer.
Linda
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Hi Linda - I've been on letrozole for 8 months. I get mine at Dillons pharmacy (grocery store). I asked my pharmacist about this, because I was wanting my generic letrozole from Roxanne laboratories. It has only 6 fillers, whereas, the breckenridge I have now has 11. He said pharmacists do not order directly from the generic company, but contract with wholesalers for their generic drugs. So by the time we get them the cost goes up, depending on the company, the wholesaler, and the pharmacy. I was on the one from mylan first and once my insurance wasn't going to pay, because it was too soon. So I asked how much it would be if I just paid for it since I was already there. $600.00 for 1 months supply. Yikes! So I waited another week to get it paid for. The breckenridge one I'm on now, I was just noticing on my receipt was $69.00 for 30 day supply. So the price varies greatly depending on how many hands it passed through and who it's passed through. I called Roxanne laboratories and they told me the same thing, so I asked them for the names of some wholesalers who sell their product to pharmacies close to me and they were happy to give me 3 wholesalers and their phone numbers. I haven't called them, yet, but plan to on Monday. I'm sure the Brand name is probably off the scale in price.
With regard to when to take it is really a personal decision. I take mine at bedtime, because it's easier to remember to take it.
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Hi Cher,
I also have COPD and am on meds that contain a steroid. Before my breast cancer, I already had lousy bone density, and was on FORTEO for 24 months (the maximum allowed). It was helping to actually build new bone. But, once I had to start taking an AI (I started on Arimidex and then switched to Femara due to side effects), my T-score started to get pretty bad again. So now I'm on yearly infusions of Reclast. It's kept me from losing any more bone density. You might want to talk to your doctor about one or the other of those, if it turns out that the Femara is causing you to lose more bone density.
I'm also a little concerned - do you have an oncologist? And a pulmonologist? With your history of breast cancer and COPD, it's important for you to be going to specialists. And another thing - I'm not sure if anyone else in your family has COPD, but if they do, have you been tested for the Alpha-1 genetic form of COPD? It's really important.
I wish you the best of luck with Femara - for me, it was so much better than Arimiex!!
Hugs,
Karen
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Linda, I just refilled my letrozole at Costco 3 days ago. I paid 18.00 for a 90 day supply.
I take it at night about 1/2 hour before I go to bed. -
Gardengumby - Thanks so much -- and that Costco price isn't because your insurance pays the rest, right? That is the full amount? This is just so crazy that some pharmacies would charge up to $1300 when Costco charges $18. Flabbergasting -- and disgusting to think that so many companies (Sams, Walgreens, CVS -- the big names in pharmacy) are making so much profit off cancer patients who need this stuff to fight the big C.
I think this is all about the drug companies inflating the price to get more from the insurance companies.
And who gets hurt? All of us as the cost of insurance skyrockets, and some of us simply can't afford our meds.
Anyway -- thanks for your input. I wonder why Costco doesn't have Letrozole available through their online site (?) I am 5 hours from the nearest Costco (out here in the boonies).
Linda
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Yeah, I don't use me insurance as then I can only get a 30 day supply - plus it costs more. Go figure.
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Gosh Gardengumby - I might become a Costco patron. I pay $15.00 for 30 day supply but that is with insurance. Insurance pays $203 for 30 days supply. My Femara is Sun Pharma. The insurance part went down recently from $400 something. Don't have a clue why since manuf. didn't change. Wow, I guess if I could save the insurance co some I would and certainly!!! if I didn't have insurance. This is thru local grocery chain.
Does Costco change manufacturers on you? I have had very few SEs on the Sun Pharma and it's been the same manuf. since I started it in June this year. Usual morning stiffness, knees little stiff. Am 60 so expect some for sure. Cognitively maybe more decline but just quit job Friday so hopefully stress reduction will help that. Thanks for the info.
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It's funny that I pay $18.00 for one month of Letrozole. I got to Costco too and my insurance company will only let me have 30 days at a time. They pay after my detectable is met which is pretty high.
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Costco has changed manufacturers on me once. My first 3 month supply was Mylan (pink). Since then it's been Cara (a mustard color). This refill was my cheapest. It used to be $36 for three months, I asked her to double check when I got this refill, as I wanted to make sure that it was really three months worth and that she didn't have the price wrong. She verified all was correct - so we'll see what it is when I refill again.
When I had them check with insurance, it was $10/mo, and I could only get a one month supply. I hate the fuss of refilling, so preferred to always get three months, even when it was slightly more expensive to do so. Of course, if it was over $200 a month, I'd be doing the one month at a time thing for sure!!!
But I need to be clear... I do not get the brand name Femara, I get the generic letrozole. I'm sure if I was getting the brand name prices would be different.
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Hi, I take my little pill at night. When I took it in the AM I had major fatigue throughout the day.
I pay $10.16 at Costco for 30 days at a time. That's without insurance. I'd call Costco & ask about the availablity on on-line.
It's Dec 2!!!! Can you believe it?
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Hi everyone - I just had an oopherectomy, and so will be switching from Tamoxifen to Femara soon. I've actually already filled my Femara prescription, but have been hanging out on Tamoxifen cause I'm a little afraid to make the switch. I've been pretty lucky on the Tamoxifen, with hot flashes being my main SE. And now with no ovaries, well hot flashes are pretty much a given! Was hoping you wise ladies might give me an idea about what I might expect on Femara. I've heard joint pain and vaginal dryness - are those pretty universal or has anyone managed to escape those? What other things that the doctors don't tell you about might I anticipate? Thanks!
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Oaktownmom there is a great list if possible SE's but not everyone gets them all. Because our bodies are all different and react differently to drugs you may experience all, some or none the only way to know is to take the Femara and see.
I have almost no SE's but I also know people who are almost crippled with muscle and joint pain. Having said that, there are some things that can be done to ease the SE's should you experience them.
Good luck!!
Love n hugs. Chrissy -
Thanks Chrissy! Great that you have weathered it so well!
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hi oaktownmom. I've been on letrozole/femara for a little over a year. I have very little joint pain, but I also take glucosamine and chondroitin daily. I have muscle pain in my thighs, but as long as I stay away from allergens, it is manageable. I have not experienced vaginal dryness. I had some problem with my hair falling out and my nails breaking, but started taking biotin and that problem has gone away (on the other hand, I have to get a pedicure more often, as my nails (and hair) grow faster when I take biotin
). Constipation can be a problem, so be sure to drink a lot of water and eat vegies and fruit. Overall, my digestion is much more sensitive than it used to be. I get indigestion easily - when I used to have a cast iron stomach. So, I make sure to take probiotics and always have something like tums or rolaids on hand. I also take ginger capsules daily.
I always take the medicine in the evening as I get fatigued from it. Both the fatigue and achiness is made more manageable by daily exercise. I also try to get a massage every other week, as that also helps my muscles stay more fluid.
Everyone's experience can be different though, (for example tamoxifen almost killed me....) so what I experience may not bear any resemblance to yours.
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All I checked prices on was Letrozole... that $1300 for 90-days and the $626 for 90-days at Sam's Club -- was all for Letrozole. It is crazy!
Costco for me from now on -- for sure -- even if I have to drive 10 hrs round tip to get to Albuquerque and back.
artsee -- It seems that the pharmacy prices vary from city to city... My call to Costco in Albuquerque quoted $25 for 90-days.
Anyway -- I take my first pill tonight! (I was waiting to restart my vitamins/supplements first, in case I had any funny feeling restarting them after being off for 6 weeks -- didn't want to mistake any of that adjustment to Letrozole "side effects".
How long did it take for you-all to see any side effects, if you had/have any?
Thanks,
Linda
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Linda, I got pain in my feet the first week I took the stuff. My doc claimed that was impossible, but pain is pain.
Apparently SEs typically start 6-8 weeks after you start.
I have now been on the stuff for about 9 months, and it seems like the SEs are settling down a bit.
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To be honest - even if Walmart had it on their program, I wouldn't purchase there. I won't shop at Walmart.
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Gardengumby, what a helpful list of tips! Thanks so much!
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Just got my new refill of Letrozole. Changed manuf. on me. Was on the Sun Pharma brand x 6 months with very few side effects. Little sore knees, little sore hips. Overweight so no surprises there. Changed to Apotex Corp. Looks to be Canadian Co. I did find Omaz's list by manufacturer (April 2012) and Apotex is not on there. Anyone else on this brand???
But - it does have fewer fillers than the Sun Pharma and also name brand Femara (googled it on Apotex page). Maybe I came out a winner?? It's on page 101 here for those that want to check it out.
Grocery store, very convenient. Good hours. Hate to change even though we talked about the cost at Costco. I don't drive into the city everyday anymore. Now for a 90 days supply and reduced cost, sure I would/could drive in. This is grocer's new drug supplier. Also changed for my metoprolol but Apotex doesn't make that. As a matter of fact, I think the last glaucoma drop changed also but neither that nor the metoprolol shook me like this did. I'm usually pretty meek but truly objected to this. And - no, no offer to order from any other manufacturer. I was pretty snotty and said I would probably be making some calls to transfer it out. Just checked my benefits page and not on there yet. Curious to see what insurance paid on it. Like I said earlier in the week the insurance payout went from $400 something down to $203 and that was before the change. Mysterious. Saga will continue.
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Y'all may have seen this study (http://www.nytimes.com/2012/12/06/health/extended-use-of-breast-cancer-drug-suggested.html) that was reported on this week about extending tamoxifen for 10 years instead of just five. Towards the end of the article, it says
"Mr. Peto said he thought the results of the Atlas study would “apply to endocrine therapy in general,” meaning that 10 years of an aromatase inhibitor would be better than five years. Other doctors were not so sure."
I happened to be having my med onc follow-up this week, so I asked the nurse practitioner her thoughts on this. She said that she believes it is quite possible that recommendtions for remaining on an AI will be extended for 10 years, or even for life. She said the AIs are only about 10 years old now, so they are only beginning to be able to study longer term effectiveness and side effects. -
cfdr, I missed that bit, when I saw the articles on this, so thanks for posting. As far as I know, there are some studies running to see if it is useful to continue AIs past 5 years. I have also seen a few women here on BCO who are continuing past 5 years, some with a 9 months on, 3 months off schedule.
Completely anecdotal, but my LE therapist has a couple of patients who recurred almost as soon as they stopped the AI. She is of the firm opinion that use should be extended.
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Scottie-not sure what you mean that is helping your hair. Boy, do i need help with mine! Has been very thin for many many years now. Do you mean that Vit K helps? If so, which Vit K? Tks.
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I have been on femara for 4 yrs had get cortizone shot in both wrist and foot for pain. Had shots about month ago it really helped. Now i noticed my arms have rash on them it does't itch. Has anyone had this problem while on femara?
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Pegnie.....I'm 65 and have always had fine hair, lots but fine. Immediately upon starting
Letrozole, it started to fall out....my pillow was full it every morning. This continued
until about a month ago when it stopped and started to come back in again, to the point
where others remark on it. No secret miracles....was on high doses of Biotin for awhile
But my Dermatologist told me I waswasting my money as the body cannot absorb such high amounts. To be honest, I had the summer from hell....two meltdowns, vomiting,
Nausea, no appetite, trying to stick to an almost vegan like diet....now on anti-depressants and anti-anxiety meds.....I'm eating organic chicken now, wild salmon, still no dairy, lots of nuts and seeds and many, many supplements....oh, sorry, long answer
to your question.....not sure if anything here will help. Good luck, I know it's not fun, that's for sure. Oh, one more thing, eventually I stopped stressing out about it and decided that
in the scheme of things, it's just hair, and I could always buy a wig. Maybe, the fact that I
stopped stressing over it , helped a little also. -
Have been on Femara for 1 month... How do we know that Femara is doing what it is supposed to do?. Is there a test that can be done to determine how Femara affects the Estrogen + path results?
Thank you
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I was just put on Femara three days ago due to stage 4 Met cancer diagnosis 1 1/2 weeks ago. Good question. How will I actually know Femara is doing what the doc says it needs to? What can I expect on side effects? Tips, suggestions, anything, that can and will help me would be much appreciated by my B/C buddies!
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Sorry to here that...How long was it that you were diagnosed the first time and were you on anything when you were diagnosed again?
I have joint and muscle aches. It can cause your cholesterol to go up, and thin your hair. But if it does it's job then these are minor things I guess. My hair is a bit thinner and the cholesterol is up a bit. I've got 5 month to go on Femara.
Don't know about tests to check the path of Estrogen.
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Just took my first Femara last night after 5 years on Tamoxifen. So far, so good!
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Hi everyone! This sure is a great forum.. thanks to all who make it great! I've been keeping an eye on things as I'll be starting in about 4weeks. today is my LAST chemo!! woohoo!
Asked my Onc yesterday to do a hormone blood test - no we dont do that! I know I had them before..years ago, my GP doesn't either. What's with that. I did ask.. well, if the AI is supposed to stop the estrogen from being created, how do we know if it's working without a hormone level test. I think MSP or whichever has decided NOT to allow them? just a guess.
I also said I'm a tad nervous, as I have FM/RA/OA & a bunch of other things wrong, & was told by 1st Onc I'd have quite a significant increase in pain on Femara, but this Onc & my GP have said.. not necessarily will that happen. maybe they're trying to be positive or something. I'm hoping I"m one of the lucky ones!
Good luck to ALL with your SE's & such.
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Cher, huge congrats on being done with the poison. Onward and upwards! I had quite a bit of foot pain with femara at first. It calmed down eventually. My joints are still more creaky, but it is not as bad as it was in the beginning. I try to eat well and exercise daily, both of which seem to help.
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any one use or on Letrozole by Mylan? have been changed from generic Arimidex to this starting tomorrow.
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No I was on the SunPharma brand but just got changed to the Apotex Corp brand. I know others have mentioned the Mylan brand. Page 101 has a list of the fillers in different brands.
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Thanks. The switch was made due to the near disabling affect on my hands and fingers along with massive fatigue and headaches daily. I've been wearing braces on both hands to support the wrists and thumbs which does help some with the tingling and numbness. I couldn't keep working like that.
I'd been on the generic Arimidex since 10/6/12, one day after receiving the Lupron injection.
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Hello ladies. This is my first post in this forum, I'm pretty new as a member.
I gotta first say that after staying up half the night reading this thread all I can say is WOW! What amazing warriors you all are!!! You are truly an inspiration and a source of strength for me!
I have been on femara for about two months now and just started experiencing joint pain in the hands and wrist, bone pain down the arm and slightly in the jaw, back pain and difficulty getting up quickly. I will be taking some of the vitamins recommended here along with the juicing of my calcium cocktail in the AM! So thank you!!!
My questions are ...I was told by the oncologist to research the Zometa and decide whether or not I wanted to do it, should I take it??? Have any of you taking it and what have been your bad or good experiences? Is there a thread for Zometa on the site?Thank you in advance for all your help!!
Praying for all of us! Hugs!! -
Michy, at first I was all ready to sign up for zometa. As time has passed, I am less sure. It partly depends on the state of your bones and on how great your risk is of mets.
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Michy -- trying going to the master website here (BreastCancer.org) and type "Zometa" into the search box there... hundreds of posts and articles come up... at least a place to start, and you might fing a thread where this discussion is already underway.
Sorry I don't have any first-hand knowledge about Zometa-- but your doc is right (in my estimation) when he/she encourages you to do your own research and actively participate in choosing the right options for you.
It empowers us to make the decisions ourselves -- and feeling empowered sends strength and reslove messages/chemicals from the brain into our bodies... which I believe is our best first-line internal defense. Our natural immune systems are amazing -- I like to imagine an army of lymph nodes and white blood cells -- my own little soldiers -- faithfully doing their best and taking orders from the chemicals sent by the brain.
One of the biggest lessons in this cancer-journey for me so far is that the docs (no matter how smart and how well-meaning) have no simple answers for us. We are their guinea pigs -- and cancer treatment is one huge-on-going experiment.
The docs want us to make the decisions because they don't want the liability -- but my way of thinking is that the more we patients arm ourselves with first-hand knowledge of the most up-to-date research -- the more our docs must stay on their toes and keep up, too. The more minds we put to this -- the better the chance that we (humans) will find what starts the cancer process -- and the more likely we are to discover un-expected outside-of-the-box answers.
Good luck with your research!
Linda
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Momine, sounds weird but how do I find out what my risk is? I had stage 2 with bilateral
Mastectomy, no rads, no chemotherapy. The doctor said reoccurrence rate is 5-11% in cases like mine. Do I ask her anything specific?
Linda, thank you so much your 100% right and Im Trying really hard to stay on top of it all. It becomes overwhelming but thank God I found you ladies!
I searched zometa but didn't see a specific thread. Maybe I'll start one.
Michelle -
Michelle, I would consider that relatively low risk. But that is me. How are you bones? I assume you had a dexa before starting femara.
I would ask the doc how she sees the risk/benefit equation in your particular situation.
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Linda-Ranch - I so agree with you. I pretty much decided my own treatment except for the type of chemo I had.
It was very scary but also very empowering
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Hi ...has anyone experience an elevation of liver enzymes from an accumulative effect from Letrozole or Femara?
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Artsee yes. My Onc says it happens with being on femara. It my liver enzymes are still up in 6 wks I get to go in for a wonderful liver MRI. just what I wanted to do. Lol it also causes fatty liver and non alcoholic cirrhosis too.
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Great! Anyone have some idea how common fatty liver and/or cirrhosis is with femara use?
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Here's what it says on drugs.com about liver side effects:
Hepatic side effects including abnormal liver chemistries (3% in patients where it was not associated with a documented metastases) have been reported.
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Day and CF, thanks for the info. I looked for it, but couldn't find it.
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I love this thread...It's always amazing when a subject comes up, how many people chime in. I always think I'm the only one stuff happens to. Can some of you fine ladies tell me what your 'numbers' were? Also is it good to stay on the drug if it irritates the liver? I'm so glad I have 5 month to go on the drug. Has any ones Dr. admitted to this happening from one of the drugs they are prescribing for you?
Day...how did you get the levels back to normal? Also why are you going off of Femara....without doing the 5 years.
Have some of you 'not' have them go down, after a retest?
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ILC stage1 grade 2 with some isolated cells in sentinel nodes. I go for my "sim" tomorrow but will start rads. the day after Christmas. My onoctype score was low (9%) but that is with the taking the hormone blockers. My onco tells me that the risk of recurrence doubles if I don't but I am very hesitant to do so after reading about side effects. Is Arimidex better that Femara? How bad are the side effects? With an 82% shot of no recurrence without them and a 91% chance with them, I'm now leaning toward going with the blockers but they worry me.
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Bookworm - I've been on generic Femara since June. Few aches/pains but nothing dramatic. I am 60 so expect a certain amount. No hot flashes/ never had during menopause. Feel I am tolerating it well. Don't plan on changing anytime soon. I do wish there was a lab test to tell you its working. I do feel skin drier/more wrinkled and age spots on hands worsening. I expect I'm really 80 inside. Need to get lab tests done 2 weeks ago at MO, check cholesterol. He said he'd call with any changes, I said I'd pick up a copy. Unfortunately it's 45 min. drive and not doing it if not necessary. Guess I could see if they would email. had bone density done in Feb. Don't know when next one to be done. Gyn. said every 2 years but that was b4 BC. Osteopenia but I declined Fosamax/Prolia for now. Need to get butt out of this chair and do housework or walk. I have hand weights and know weight bearing is best for bone building.
I must admit I don't "know" my numbers. I think I have a chart he drew at my 1st appt. Know he thought it was pretty low that's why he agreed I could skip the Oncotype.
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Bookworm, I have been on femara for 9 months. The SEs were worse in the beginning, now they seem to have calmed down some. For me they have been achy feet and hot flashes.
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Bookworm when it comes to these drugs everyone is different and react differently. If say
Arimidex causes one person really bad SE's the next person will have few or none.
The only way to find out for yourself is to try them always keeping in mind that there are three AI's so if one is causing too much trouble you have the option af asking to change to another. The main thing to remember is that always in the beginning you will have some SE's that will go once your body has adjusted. If you think about it, the SE's that come with most of these drugs is you body adjusting to having no estrogen and learning how to function without it.
Good luck!
Love n hugs. Chrissy -
Oh, and bookworm, there was just a new study out which strongly suggests that femara (as opposed to tamoxifen) is especially useful in ILC. My cancer was far more advanced than yours, so it was really not a debate in my case. But I am very much hoping that the femara can keep me free of cancer till they come up with some newe treatments of some kind.
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Hello everyone, I have switched from tamoxifen to femara about three months ago due to a lung blood clot post DIEP. I had no issues with the tamoxifen only hot flushes. The femara has really knocked me over with joint pains especially in my hands and feet and debilitating fatigue . I feel like I am 70 and I am only 48. Chemo made me menopausal so AIs are a good choice, but the side effects are tough. I take glucosamine for the joint pain- I can't take antiinflammatories or fish oil so would welcome any other suggestions to help ease side effects-I eat healthily, am active but easily fatigued and excercise as I can. Only hoping that the SEs will settle in time. Any suggestions for natural supplements would be welcome!
Cheers Robyn -
Robyn, I have trouble with anti inflamatories so I take Boswellia and Curcumin. Both are natural anti inflamatories and work very well. If you are having major problems with Femara please don't be afraid to ask your doc about a change to one of the others.
Love n hugs. Chrissy -
I've been on femara for a year now, and have also had debilitating fatigue. Not sure if it's the femara or post-chemo side effects. I have recently started taking 3 supplements that seem to be helping: ginseng (2g/day), d-ribose (1g/day) and coenzyme Q10 (100mg/day). I have been taking the ginseng after reading about studies published this year saying that it is effective for cancer-related fatigue. The other two were recommended to me by a physician at the Duke Integrative Medicine center. Prior to taking these, even exercise exhausted me, and as you know that is recommended as the best thing to help fatigue. Now I am hiking in the hills for over an hour almost every day!
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Robyn, walking helps, whenever you can, take a 10-minute stroll, even around your living room if necessary.
Anti-inflammatory foods help: greens, onions, sardines, chilis.
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Hi everyone,
Well, it has been 14 days since my first dosage of Letrozole. I thought all will be well as I hadn't experienced any side effects til yesterday. I began with dry mouth, some nausea, and some diarrhea. Wondering how long this will continue, and what I can do for dry mouth. Suggestions, thoughts? I'm getting somewhat apprehensive here.
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Day 7 and so far so good. Well, the fatigue is the same as the other but nothing's perfect. Hoping for good results on this one!
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Naturegirl a good product for dry mouth is Biotene. They do mouthwash and toothpaste that contain the natural enzymes that are found in the mouth and so help to stop that dry feeling. Over there I believe it's a available in most pharmacies and Walmart.
Hope it works for you.
Love n hugs. Chrissy -
Naturegirl2.....Inhave been on Letrozole for 9 months now and still get the occasional
Diarrhea and nausea.....gravol takes care of the nausea and the diarrhea I just put up with. Also still dealing with fatigue...grrrrrr -
naturegirl- I don't think I ever experienced the dry mouth and I have been on it for 6 mos now. Nausea comes and goes, diarrhea also comes and goes. My main issue is the joint pain, but I have that under control now. I take Glucosemine twice a day and 2 advil every 12 hrs also for the inflammation. Hope yours gets better.
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Momine, what s dexa?
Thank you for the question suggestion I will definetly ask because it's a great question!
Thank you!
Michelle -
Mich a DEXA is a bone scan to see if your bones are deteriorating due to osteopenia or osteoporosis. The AI's are known to deplete the bones of calcium and a DEXA can tell your doc if he needs to give you bone strengthening drugs.
Love n hugs. Chrissy -
Thanks everyone for the supplement suggestions! I will try some one at a time and hopefully get some relief from the aches and pains! I know the glucosamine helps as I have been on it a few weeks and the joint pain definitely increases without it. If I have another five years of femara I would rather find out earlier than later what helps to ease the SEs! I will try anything within reason!
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Chrissy already answered about the dexa. Most things I have checked say that you should have a dexa when startin and AI (as a baseline).
For those of you with digestive issues: pro-biotics, ladies!
I had a bit of trouble when I started femara, so I started taking acidophilus again. No problems since. I take one capsule a day with my breakfast. Works a charm.
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Looks like I have a tear in my meniscus in my knee and surgery will be on the 31st. I hurt myself doing Zumba. Go figure! I was wondering if anyone thinks that the lack of estrogen might have contributed to the tear. What do you think? I forgot to ask the surgeon.
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I am TN but with my local recurrence this past spring I was 1% ER+. Any + is a + I guess, so they put me on Letrazole. I've been bad about taking it, but this past month I've really been forcing myself to take it daily.
So far, I'm OK - I notice a slight reduction in hot flashes, which were brutal before. But - joint aches. Ow. Ow. Ow. The thing is, they are in odd, assymetrical places. My left thumb, the first joint. My right knee. My left shoulder. Is this normal SE joint pain, or could this be something else?
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Hi minxie sound an awful lot like normal SE's to me. If you read back a few posts you will see a whole lot of suppliment that have been suggested by others to help with those aching joints.
Love n hugs. Chrissy -
Hey Chrissy, what form of curcumin do you take? I hear it has excellent anticancer properties. I have the tumeric spice but don't really like it.
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Racy I use the Blooms Curcumin Plus 600mg. One twice a day as the dosage so a total of 1200mg per day. As far as I know curcumin is part of turmeric.
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Just peachy...VitD level is at 22, below the bottom "norm" of 30. Fools didn't pay attention when it was at 32, just said take some VitD. That was about two years ago. Since then, BC with two major surgeries and Tamoxifen for a few months and then onto AIs for the past several months.
On the positive front though, Brca1 and 2 were both Negative.
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Yay Galsal........at least there's some good news in amongst that lot! How much Vit D were you taking? I take 2000 iu per day on summer and double that for winter but at one point mine was almost on existing so my doc told me to take 100,000iu a month for four months to get my level up. Check with you doc about the large dose as here we need a prescription for the massive amounts.
Oh by the way, my levels are steady at 110 but it took me a while to get there!
Love n hugs. Chrissy -
Thanks. The test results showed up in my record online but don't see PCP until Feb or them. Will bring it up to Onc when see her in Jan.
Was taking about 6k OTC type, along with Calcium.
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dkerler, I'm interested in knowing what your surgeon has to say. I found out recently that I have several minor tears in my rotator cuff. I can't imagine how they got there...yoga??? I have also wondered if letrozole could have played a role. My orthopaedist didn't think so, but he is a nurse practitioner, not an MD and no oncology or endocrinology background.
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thanks chrissy for the info on Biotene. My side effects have settled down at this time. I've been on Letrozole for 18 days now. I need to get on a calcium/vit d supplement, say, 1200 mg. of calcium & 800 IU of D. Suggestions on brands please? Also, most of you say y'all are usually on them 5 years. My doctor didn't give me a time frame to stay on these. Hmmm. He did say if/or when Letrozole does not work, there are other meds he can use. Input please? I'm stage 4 with met. (one spot on on rib) nodules in my lungs, tumor on my sternum.
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Naturegirl I'm also stage IV. The rule of treatment for us is use what ever until we have a progression and then move o to something else. We all hope for a long time on the hormonals as they are the gentlest treatment so hopefully you will get those years your doc was talking about.
Oh by the way, I have four years up with the AIs and going strong.
Merry Christmas!
Love n hugs. Chrissy -
Oh, thank you chrissyb. Do you take the calcium/+D vitamins or other vitamins? Others as well?
Hugs back to ya!
Merry Christmas all! -
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Naturegirl I don't take added calcium as I get all I need from what I eat but I do take Vit D, folate, Curcumin and Boswellia. The last two are natural anti inflamatories which really help with the pain of bone mets. I get so used to popping my pills that I almost take no notice any more......lol.......my grand children call my morning meds second breakfast.....lol.
Hoping you are having a good day!
Love n hugs. Chrissy -
Hi Day,
Oh, thanks for the valuable info re. calcium.
hey chrissyb, you are a good girl in eating your calcium nourishment daily. I did have a good day, thanks dear! Hope you did as well. Where do you have the pain from bone mets? I hadn't heard of Curcumin & Boswellia but I will look into it. I've got the pain in my chest area, left side,(mastectomy) radiates to right breast. Back and forth. My oncol. said he thought Letrozole would help decrease the pain, and it has, somewhat. I was misdiagnosed with costochrondritis and was sitting on this one year and under treatment with a physical med. doc who diagnosed this as costo until my sternum began to swell. I decided to see my oncol for this as I figured something was not right to see swelling there. I had seen my oncol. in April of this year, he did his 'normal' blood work and said everyone was fine. Interesting isn't it? I'm still pissed off about how this all came down really.
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Naturegirl my pain is mainly in my left arm as the mets were so bad I had to have a metal rod put into the bone to stabilise it. I also have osteo arthritis in just about every joint and fine that the Curcumin and Boswellia also help with that.
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Oh my chrissyb, I am sorry to hear that, but glad those two natural meds are helping you dear. May I ask you how you came to know you had Stage IV BC, was it detected from a mammo? If so, were you having mammograms every year? That is just a tough thing to learn out the gate you have stage 4 met BC and no problems prior to that or any indication.
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Naturegirl I had been having a lot of pain in my shoulder and my doc was treating me for bursitis (which I had, could be seen under US) but then I moved house and it just got worse and worse until I was in a lot of pain. Because of the move I was about five months late with my 5 year check up.........when my specialist was doing his routine checking of nodal areas in my neck I winced. He asked if that was sore and I told him it was more than sore, it was painful. He ordered a bone scan and the mets were found. He sent me straight, and I mean straight to a radio oncologist who then did X-rays and then made an appointment with an orthopaedic surgeon for the following Monday (this was Friday). I saw him and the next day was in hospital having my arm stabilised with the pin. I was there for a out 5 days before being released into the care of my daughter and then started rads to the arm the following Monday. It was all a whirlwind again as it was the first time around but this time I was not surprised.
That was almost four years ago and other than being slowed down a lot I am living my life to the fullest possible and enjoying every minute. Yes I have pain but I know how not to be affected by it to a great degree by changing the way I do things and knowing when it's time to stop. Life can be managed in a way that we can still enjoy all that life has to offer.........with some modification.
Oh, I've raved on once again.......lol.......but I did want you to know that even with stage IV it is possible to have a life that is full.
Love n hugs. Chrissy -
Hi chrissy,
Wow girl. Whew. So you were diagnosed back in 12/08/2003 for Intraducal Cars. cancer, then was 5 months late for a 5 year check up five years from 2003?
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Hi Naturegirl, yes, IDC in December 2003 and bone mets in May 2009. I was prescribed Arimadex in 2009 and was on that for sixteen months then when I had scans done there were a few new spots so my doc changed me to Femara in October 2010 which got rid of those tiny spots and has kept me where I am since then.
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hi chrissy, oh, okay. So as you said, right out the gate back in 12/03 you were diagnosed with Stage 4, but bone mets in 2009. I'm sure glad your meds have reduced and even gotten rid of the tiny spots! That is great girl. How much Vit D do you take daily?
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I take 2000iu every day and get the levels tested every three months to make sure they are in the range (100 - 110) that my doc wants me at. They can still fluctuate even though I take it without fail and when that happens I take up 5000iu per day for a few weeks and then drop it back to the 2000iu.
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Hi everyone, new to this site, I have been stage 4 since 2002.....Tamoxifen for 4 years, new mets so changed to Femara for 6 1/2 years, new mets so now I take Faslodex shot and Femara together.....I was on Zometa for 6 years and had a stress fracture in femur so a rod was inserted from my hip to knee then radiation and that was in Jan of 2012....still going strong...taking Coq10 and green tea....tried Vit d , but it caused my calcium levels in my blood to rise...going to talk to Dr about taking the vit d again........great quality of life...
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Hi JudyAlice and welcome to BCO and this thread. It sounds like you are getting a great run out of the AI's which is a really good thing and encouragement for us all as to their power.
My Vit D was bottomed out and calcium level almost off the chart but now the D levels are much better, my calcium is where it should be. Check your magnesium level as well as the two (vit D andmag) work together to make the calcium deposit where it needs to be and not be excreted by the kidneys.
Love n hugs. Chrissy
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JudyAlice, thank you for posting! I wish you (and all of us!) Many more years! Ten + and a long time with each med, that is what we love to hear! Thank you.
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Thanks Chrissy and PA, I am going to look into the Vit D and Mag......I am so thankful for the new meds out there....It seems like when one stops working another is there to take its place.....the worst side effects of the AI's are fatigue and bone pain, so when I have pain that does not go away in 2 to 3 weeks I tell the Dr......last year the Onc. kept telling me my leg pain was a side effect from Femara and Zometa, so I got a copy of my scans and found out I had active cancer in my left femur, so of course I changed doctors, then had radiation and a rod inserted from hip to knee to stabilize my leg, that was in Jan. of 2012....now I am active as ever....what I am trying to say is listen to your body and keep on top of your scans and test.......Bless each and everyone dealing with cancer...(((HUGS)))
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That is ridiculous for an oncologist to miss something like that! Seriously! I'm convinced there are a few out there who just figure we are terminal anyway and have no sense of urgency. Not most, of course. Maybe I don't know what I'm talking about because I'm fairly new at mets, but reading these boards for a few months now it really seems like things happen painfully slow sometimes for some people. Thank goodness you were vigilant. Very good advice.
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After switching over to Femara from Arimidex, I've only had one headache and one time of ear ache. HOORAY! As for the hands, they never got any better and if any thing have gotten worse. I won't say it's the med caused it, since I'd had the hand problems before starting any meds from Onc. Finally, now the sleeping is starting to even out over the past few days although I do still need a sleep aid.
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I has a Onc. tell me I should not complain about "a little" pain because I was here and some people were not.....so I asked him about quality of life while on AI's? His answer was take advil or tylenol.....I wanted to scream at him about joint pain and weight gain and about fatigue, but that was early in my diagnoses and I have come to believe that I have adjusted to my new normal, I don't know how long it took me to adjust, but I have. I also found a wonderful Onc. she is my age (51 years old) that addresses my pain and fatigue issues.....by the way the Femara has less SE's than Tamoxifen and Galsal I am so glad you have fewer side effects. Thanks PA USA for the kind words....
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Judy, glad that you have adjusted some. I find that it has been the same for me. In my case, after finished treatment I had gotten rid of a lot of semi-chronic pain of long standing, so the femara annoyances do seem like a fairly small price. Still would be nice if doctors would take us bleeping seriously. Mine have been pretty good though about the SEs. They clearly want me to stay on it, so they ask how I am doing with it and do seem concerned about my QOL.
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Take FEmara at night for less side effects, don´t know why but it works....
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Hi everyone--am new to this topic but have read some threads and am encouraged and so heartened by the experiences you have openly shared. I have been on Letrozole for about a year -after tamoxafin for about 2 years--only had brief joint aches which went away; also had some unexplained urinary track infection--everything seemed to settle down--but I have noticed some definite, significant hair thinning on the top of my head. of course I will take thinning hair and even baldness over cancer recurrence any day--but was wondering if anyone who has experienced this can say whether this reverses itself--I have read some on this site taking Biotin--any other strategies?--not a major concern, just curious. I was only advised to take 2,000 iu of vitamin D each day with Letrozole to counteract bone denisty loss. thanks for any advice you may have.
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Howdy everyone -- I have only been on Letrozole since Dec 3 -- but so far, so good! No side effects as far as I can tell.
The main reason I wanted to post was to suggest that everyone (especially new-bies) COMPARISON SHOP for your Femara/Letrozole by calling around prior to purchasing -- I was horrified when I picked up my first 90-day prescription (at Sam's Club in Santa Fe) and they wanted over $1000! I quickly blurted out that I had the "upgraded membership with discounted prescriptions" -- and the price went to $636!!!
I only got a half-filled precription, because I couldn't afford over $600!!!
Well, I called around and found that CVS, Wallgreens, Wallmart (in Santa Fe) were all charging even more -- up to $1380 for 90 days!
I came on here and heard others were paying less than $20 at Costco -- and sure enough, when I called the Costco in Albuquerque they only wanted $12!
Well -- I wish I had my old energy of the 'pre-dx-days' -- but I don't... so I haven't done anything yet (other than scream a little here) about the price gouging. Have realized I must pick my battles and conserve time/energy for happier pursuits! Had my BMX/DIEP recon Nov 6 -- and have been concentrating on healing!
Anyway -- just checking in to say no SE's and do yourself a favor -- comparison price shop -- this stuff can be EXPENSIVE!
Happy New Year to everyone
Linda
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I've been on Letrozole for about 10 months and apart from hair thinning and emotional issues I was fine until about a month ago when I started to experience upper back pain,
some days are more doable than others. Will see my MO in Feb but was just wondering
if anyone else has experienced this. I read that it is one of the SE of Letrozole, but my mind goes to dark places, of course. Appreciate any input. -
Scottiee...just wanted to say that maybe you should see if you can talk to your Doc before Feb. It sure would put your mind at ease, about your back pain. Sometimes a simple blood test will get you some answers. My pains always seem to travel around the body. One day it on the left, then it's on the right. I have been having a pain in the right lower back...goes around the right hip and into the groin. It's pretty persistent although some days it surprises me and is gone. I did however not wait long and called my OBGYN and wanted her to check for 'ovarian' stuff.(mind goes crazy) I felt so much better when she said 'I can't even find your ovaries'. That told me there was not a big 'Honkin' tumor on it.
I guess with the age of 64 coming up in two weeks puts me in the old category. Or shriveled........ -
Thank you Chrissyb, sorry it took so long for my reply. Holidays
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How much calcium and vitD do need take? Is 1200 calcium and 800 vit D the normal amt.
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Linda....I am wondering if the pricing is for Femara rather than letrozole. I have always gotten my prescriptions filled at Walmart. Before Femara was generic I got it for $10 a month. After it went generic, the price returned to $568 monthly, but letrozole was $4 a month. I wanted to stay on Femara, but my insurance would only cover the generic. So, that's what I now take.....but it has always been $4 at Walmart.
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I thought the same thing (about it being Femara instead of the generic) -- but, nope -- it is Letrozole that I priced and paid for -- $300 for 44 days because I couldn't afford the $636 for 90 days. It was Letrozole selling for over $1300 (for 90 days) at CVS (in Santa Fe). And Letrozole that I just paid $18 for the same number of days at Costco (in Kansas City, with close to the same quote at Costco in Albuquerque).
Walmart (in Trinidad Colorado -- my nearest Walmart) was $1185.62 for 90 days supply.
It really makes no sense, other than the middle men are making an incredible fortune off of we cancer patients, and our insurance companies. Personally, I think it is all another part of the insurance/medical industry agrument/profit-war... but is happening at our expense.
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Update on my Letrozole experience.......been on it for about 10 months now...started with massive hair thinning and mood swings, not much else. About two months ago my hair started to grow again and also my finger nails....was so happy. Now, two months later, I am finding lots of hair on my pillow again and may finger nails are becoming brittle and breaking off, AGAIN! I have also developed muscle and bone pain in different areas..
they change from time to time....oh and some rib pain.
I can't take muscle relaxants due to other meds I am on, so my GP has me on an anti-imflammatory. It's only been four days, so was hard to tell, but today I also took claritin ,
On the recommendation from gals here, and that has helped a lot.
Someone reported that there MO said everything with these Al!s is cyclical. Perhaps this is what's going on with me. A other four years of cycles.....yikes, will I survive....lol -
Scottie -- wow. So sorry to hear of your complications...
I am just now at 5 weeks on Letrozole -- and so far -- so good. No side effects to report.
Think it is important to post 'NO side effects' too -- so that newcomers here don't only read the horror stories.
Anyone else here (taking it longer than relatively-newbie-me) experience NO side effects from Femara/Letrozole?
Linda
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Linda, I wish more people like you would post, but I guess the ones having no SE are all getting on with their lives. I posted really for people to be optimistic re the cyclical comment made by the MO....hoping in a couple of months I might get a break again....lol
Thank you for posting, it does give hope to others just starting. -
Hi,
I have been on femara for 4 months now. The first month.. no side effects. Then very quickly i started to have very debilitating joint pain and just felt awful. I spoke to my pharmasist and he said the side effects often reach there peak at 6 months and then seem to subside for many.
Well i am now going into my 5th month and i am starting to feel well again.Really well actually. I do still have some muscular pain... especially for a little while in the morning, but nothing like it was.
So hang in there... i definatly think the AI'S, for me, are doable and the benifits we get get will make it all worthwhile.
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Thought the Claritin was for Aromasin and it's generic. Femara too? Yikes, just gave it all to my Son thinking it was only for the one.
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Gal..would you explain what you just posted. LOL....it makes no sense to me, but am curious.:)
As for the Letrozol and Femara, Linda, I hope your insurance covers that huge amount, because I'd find me the nearest Costco and pay 18 bucks out of my pocket if it doesn't. It's a crime what they charge and we wonder why out insurances are so darn high.
I have S/E that go in cycles with both of these drugs. I'm on the generic now and it didn't make a difference one way or the other. I figure my hair and eyebrows will continue to be sparse till I'm off of the stuff. When I look at the couple month I have left on them and back at the almost 5 years of agony that they cause...I have to say I'm glad I had the security blanket for the time being. It beats a recurrence and I know you all will agree. You'll look back and ask 'where did the time go'. Everything is doable in BC, because I don't like the alternative at all.
Gentle hugs, Artsee
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Artsee....I liked what you said as it puts it in perspective...even with all my issues
that's my philosophy also. -
Artsee -- my insurance covers NO medicines -- so that is why I was freaking out. I had to pay that first 44-days worth out of my own (dwindling) cash -- at $300! But now I can get it at Costco for $18 -- and you can bet your sweet bippy I won't be going to Sams' Club or CVS or any of those other rip-off pharmacies again!
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I have been on letrazole for 8 mos now. After I figured out that I can't take letrazole and levaquin together, because they both pull fluid out of the joints. I started taking glucosamine twice a day to help put fluid back in the joints.
Scottie- I too am seeing the hair thinning at this time. I have noticed more of it when I wash my hair or brush my hair. It's pretty depressing to see how much hair I've lost since being on the medication. But if that is the worst SE I've had then I'm really not going to complain about it.
Hope everyone is having a good day.
christy
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I have been on Femara/Letrozole for 4 and 1/4 years, at first had a few issues but also had some arthritis so that was affecting my joints and the only other issue is that a couple of months ago my hair stopped growing, I have very thick hair and it didn't thin out it plain old stopped growing but only at the front, weird eh, I had 3 haircuts where my hairdresser didn't cut the front at all and then it just started growing again, go figure.....
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oh heck, was I mixing up my topic threads? LOL sorry about that!
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I have had some joint problems (torn rotator cuff, frozen shoulder) that are probably NOT related to letrozole. All my other joints have been just fine. I've been on it for a full year now.
I've had a lot of fatigue in the past year, but that seems to be fading (FINALLY!!!), so I don't think I can blame that on the letrozole.I'm on an HSA plan, so at the start of the year I pay 100% drug costs. My refill this week was $29.27. But in the small print, it says "Your insurance benefit saved you $1,180.42!!!" That is an enormous amount of money for a generic drug!! It reaffirms my believe that those of us lucky enough to be on big group plans (I'm on my husband's insurance through his job) are subsidizing everyone else (like me, two years ago, when I had an individual plan).
Of course the biggest group of all would be *everyone*...but don't get me started on that!
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I can't believe the amount that you girls pay for Femara and the generics. Here in Australia the full cost is $142.50 and be because the Government has it on the PBS ( Government Subsidy) and I am a pensioner, I pay $5.70 per month. If I weren't a pensioner my payment would be $33.60 p/m. All that aside, the base cost between here and there is over a thousand dollars and right now, our dollars are almost on parity. It sounds like the drug companies can charge whatever they choose to the detriment of the American person.
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I pay $10.16 for Letrozole at the local Costco.
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Lol Linda....I figured it must of been the wrong thread.
Well, all these different prices on the same drugs....gotta be your insurance plans. I remember the days when my insurance didn't pick up $200.00 +. That was a lot of money for us to pay so $18.00 looks pretty darn good to me now. Glad I won't have to worry about it anymore come May.
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I don't have insurance.
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Artsee: Nope -- the price variance has nothing to do with our varying insurance plans. My insurance pays nothing for meds. So all those prices I listed (some over $1300 down to Costco at $18) were all for 90 days supply -- with no insurance happening at all.
Cfdr: I am convinced that the drug companies and middle men are simply ripping us off BIG TIME -- and that the thing about ""Your insurance benefit saved you $1,180.42!!!" is just the insurance companies refusing to pay the exorbidant inflated prices. Those of us without insurance -- are screwed. Thank God for Costco.
"It reaffirms my believe that those of us lucky enough to be on big group plans (I'm on my husband's insurance through his job) are subsidizing everyone else" --- ???? I don't get this -- your big group plan is REFUSING to pay the inflated prices -- so it is actually those of us without insurance coverage for meds who are subsidizing... what? Not you with insurance, and not other poor people without $$ to pay for these meds ... but looks like we are subsidizing Golf and fancy vacations and summer homes for the owners of Walmart, Walgreens, Sams Club ... oh -- wait a minute -- they are all owned by the same Walton family, four of whom are on the list of the richest 10 Americans -- yet who pays their employees such crap wages that most full-time Walmart employees still qualify for medicaid... Oh -- this is different rant... But perhaps the reason 4 of them are on the top-10 richest list is this blatant rip-off over meds! Not to leave anyone out -- also the owners of CVS should be ashamed for this inflation!
Linda
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As an outpatient medication, I pay $8/mo for a 30 day supply at the VA. When I'm an inpatient, I pay nothing. One of the perks of having served in the Military. Yes, it is filed against my insurance too.
I've been fighting to have my very early dx'd Fibrocystic Breast Disease condition added to my VA ratings since it was found when I'd been in the Army for about one year. Hoping to pave the way to the BC since I'd been stationed at several installations at least one year or more that are on the EPA super list about water and chemical contaminations of known carcinongens.
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Linda, thanks for catching that...I had said exactly the opposite of what I meant. I'm blaming chemo brain!
What I meant to say was that the self-insured subsidize the discounts that the big groups get. When I was self-insured I paid more, but got less. And I was on the same company (Blue Cross Blue Shield) that I am now.
Also, the pharma companies can charge more to Americans because they negotiate separately for each insurance company and each plan. So in other countries (like Australia, as Chrissy mentioned) governments are able to negotiate lower prices overall. So in a sense everyone here in the U.S. is subsidizing what people pay in other countries.
A number of years ago, I took my mother to the ER for something. When she got the bill, there was a charge of several hundred dollars for "wound management". The only thing I could think of that could relate was that she scratched her arm while she was there. Maybe they put a band-aid on it. A friend of mine who works in a hospital asked if my mom had good insurance. Yes, she was on medicare and also had a supplemental policy. My friend said it is common for hospitals, especially ERs, to jack up the charges on patients who have good insurance in order to subsidize the care of the uninsured.
What a crazy system!
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Wow I'm pretty lucky when it comes to my prescription. I pay 2.00 for a 30 day supply or 5.00 for a 90 day supply. I won't complain about it anymore.
I hope everyone is doing well. I have started working out again and have found that with me adding glucosamine and ibuprofen to my daily pill regimen I'm doing good. Before I couldn't last 2 mins before the joint pain started. Yesterday I walked a 1/2 mile and the only pain I have right now is in my calves and that's just because I haven't worked out in forever. For those of you having pain are you taking glucosamine to add back in the fluid that femara sucks dry?? -
I have only been on Letrozole for 5-6 weeks now -- and still no side effects (at least yet) - Yay!
I DO take glucosamine twice a day (already did) -- so I am wondering if perhaps that is helping and I don't even know it. Whatever, though -- I love riding the 'no-side-effects-train' so far!
Saw the onc today and she said my bloodwork all looks fine -- so I won't see her for another 90 days, unless some SE pops up. (Positively thinking here... I will be one of the ones for whom Letrozole is a perfect fit!
Linda
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Hi all,
I've been on Letrozole for 5 weeks now, and no side effects to speak of. No hair thinning and hope that remains that way. I do have a question for Letrozole users.
My results from blood work from my oncol. recently did show high liver enzeyme levels, both in AST(SGOT) & ALT (SGPT). Anyone/s experience this in initial or now from taking Letrozole? I keep all blood test reports from past and this has never been high, until now. I did read that Letrozole can elevate blood liver levels? Input please?
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naturegirl2 -- I have been on Letrozole for 6 weeks now, and just had my first bloodwork done, too. I was pleased to hear that everything is in the normal ranges, and happy to report to my onc that I am not experiencing any side effects.
I am sure women with higher liver numbers will be coming on to answer your exact question -- (which I can't) -- but I thought this might help... it is a source for extremely high-quality natural vitamins and supplements... which may help balance your numbers and your body.
I keep reading suggestions here for dealing with the SEs -- and can't help but note that I already was taking many of these supplements, and am continuing to do so -- so perhaps that helps explain my good bloodwork and lack of SEs...
I get my vitamins/supplements from Melaleuca -- a company that is extremely 'green' and uses naturally occuring (as compared to synthetic) ingredients... in combinations that allow for best apsorption.
You order direct (via computer) and your order is shipped direct to you each month.
They have lots of other great products too (like laundry soaps, beauty/bath supplies, healthy foods) and all is based on word-of-mouth and highly-concentrated green products that re-use the plastic bottles (you add water to the concentrates, and so aren't paying for water!). And, since it is a referral-based company, you can earn commissions for telling others about the great products... and build a part-time side-business based on just telling your friends and family about high-quality products that everyone buys anyway!
Anyone interested can go to Melaleuca.com to peruse what they have -- I take the "Vitality 6" vitamins/supplements for women, plus "Replenex" (glucosamine). Also really like the concentrated dishwasher and laundry detergent, the face cream, shampoo, Melaleuca tea-tree oil (for burns and rashes) and their laundry pre-spot.
If you like what you see, please feel free to PM me for more info on how to get discounts.
Good luck!
Linda
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Naturegirk- yes my liver enzymes started going up month two of taking femara. Unfortunately it is one of the SE's of femara. I go in in 2 wks for another set of labs and if it comes back high again I get to have an MRI of the liver to see if there is anything else going on. Keep an eye on your labs and make sure your ONC does too.
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I just went through the liver enzymes being raised at my Oct. apt. Eight weeks later, retested, and they did not go down. I'm taking nothing new and when I asked the Dr. if it could be the Letrozol his reply was "no". I then had to have a CT scan of the abdomen which came out normal. So I never got an answer...although I think it's the AI. Few more month on the stuff and then I'll see for sure I guess. I googled many times and could not find anywhere, where it said yes Femara or Letrozol could be the cause.
If anyone finds anything written about this could you please post where you found it. Thanks.
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I didn't know about this. I'm going to try taking milk thistle to oprotect the liver.
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HLB.....please do some research about milk thistle and ask your doc first....I used to take it everyday but after getting BC and all my research, I read somewhere (can't remember
where or why....sorry) we shouldn't take it. Sorry I don't have more I info....memory has gone...lol. Please check first. Would be interested in your findings as I say, I used to take it all the time....my husband still does. -
Scottiee, I read the same thing about milk thistle. I have not taken it since.
My onc agreed to give me one month off Femara. It's been a few weeks and I have noticed my hot flashes have decreased SO much. Also, my deep fatigue has changed significantly and my mood has lifted. I thought the rash on my chest might go away - nope. Come February, my options will be to resume Femara for the next 4 yrs (plus a probable additional 5) or to swith to Aromasin. Given that my BC was lobular and stage 3, I think I'll stick with the Femara. It's been nice having a little break
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X-raygirl....thanks for that...I know I read it somewhere but can't remember....at least I know I'm not losing my mind completely....lol
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Hi Linda-Ranch, thanks for responding. That is great you do not have SE's from Letrozole and you have good blood test results. I had been taking multi-vitamins for years along with a few other vitamins and stopped soon after a diagnosis of Stage 4. That included a baby aspirin as well since one of my tests was delayed due to taking aspirin. I am still taking Vit. C, 1000 mil daily. I figure the multi-vit. didn't do their job in keeping back a Stage 4 diagnosis so what the h - - l, ya know. I am trying to follow a heathier diet, even healthier than before in getting my vitamins and minerals naturally, through food.
My cat scan did not show any problems with my liver at this time. Now I'm wondering if stopping multi vits along with taking Letrozole raised my liver enzeymes. I'm thinking it's the Letrozole as I read. I wonder how my oncol. is going to treat that. Inputs?
Chrisrenee,
Hmmm, interesting. I'm going in for more blood work in a month so we'll see as well. My oncol wants to see me monthly until further notice. My cancer antigen test numbers dropped and he was please in seeing that as well. Said we were headed in the right direction. My oncol. didn't mention MRI tho, but he did mention another cat scan in March depending on my blood work for Feb. I suppose and to see if the nodules in my lungs are shrinking. I do know my sternum tumor went down in size considerably. Oncol. was pleased to see that.
Others?
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Thanks for that info on milk thistle. Apparently it has to do with estrogen.
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Isn't it funny how many things we used to be able to eat or drink effects us so much now?! I am extremely happy that I was able to drink my first beer in 8 mos. Ok so I only had 1/2 of it but that was all i needed.
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I read several articles on milk thistle and they are conflicting. The estrogenic component is found in the flower and leaves which isn't used in supplements not in the root which is used. One article said that the study which said it was harmful used dosages much higher than would be used in hmans and another study said that milk thistle has been beneficial in breast cancer so I guess you just have to choose what you want to beleive and look at the sources.
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I tend to lean towards plant estogens being ok and the xenoestrogens to be the dangerous ones. I wish they would just find out instead of guessing at it or assuming that all estrogen is bad.
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I just started letrozole today, after a year of tamoxifen and an oopherectomy in November. Wish me luck!
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Oaktownmom here's wishing you all the luck you need. Hopefully you will have few SEs and it will work well for you.
Love n hugs. Chrissy -
I just started taking Femara on January 12 after nearly two years on tamoxifen. I was very fortunate in that I had relatively NO side effects on the tamoxifen - a few hot surges but that was about it.
Can I possibly be having side effects after less than a week on Femara? I had the strangest leg cramps last night and the joints in my fingers were "stuck" for lack of a better explaination. After opening and closing my hand a few times the joints moved just fine.
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Doctors will tell you that there's no way you could be having side-effects that soon - but what you're describing certainly sounds familiar....
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I got the foot pain almost immediately, in the first week. My doctor insisted I must be mistaken, because, he claimed, it takes 6-8 weeks for SEs to show up. Sure, sure!
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Thanks for sharing your experiences and information. My dr has taken me off letrozole and put me on aromasin. I guess I am off to find a new thread.
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Sue2010, I got joint aches after about days I recall--lasted for maybe a couple of days and then went away--it was very immediate but fortunately did not last. I had no SE with tamoxafin and I am finding hair thinning is the only one on letrozole (also had some UTI issues that went away)--but we are all different. Good luck with it.
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Thank you all for the quick replies.
Hopefully, the side effects will not be too intense. I have to admit, I most fear my hair thinning, but considering the options, it's a small price to pay.
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Sue, my husband says my hair has thinned some, but I haven't actually noticed it myself. My hair definitely did get more brittle, so I no longer have long hair. (I actually think my hair hasn't thinned, but that my husband misses my long hair....)
I've been really whining about side-effects on a different thread, so for those of you who don't visit that thread I'll tell my latest experience.
We spent 5 weeks in Hawaii, I had contemplated taking a letrozole "vacation" during that time, but after discussions with my oncologist chose to continue the medication. I am SO glad I did, as my experiences were eye-opening. After about the first 3 days I found that that I could walk MUCH more freely, morning pain was gone. While I was there I continued to improve. Hubby and I figure that about 75% of my aches and pains disappeared. Then I came home to Seattle. The first day or two I was pretty much OK. By day three I was starting to ache and on day four all I did was sit on the couch and cry I was in so much pain. I'm slowly adapting and am certain that within another week or so I won't remember what it was like to be without it (there are certain advantages to the lousy memory the drug induces....
)So, here's my thoughts on the situation:
Hawaii was WARM. Each day was in the mid-eighties. Here it's been in the twenties and thirties.
I got a LOT of sleep. I probably slept 11 hours a night. Here, not so much, as I'm back at work.
My eating was about the same, as we were in a condo and I did the cooking, just like at home...
Stress was less - after all it was vacation (though there were some familial issues that beat out work stress in some respects....)
I swam almost every day for at least an hour - and that felt GREAT.
I'm now attempting to get more sleep each night, and hubby is looking for a sauna to put in our basement. I'm also strongly thinking of retiring next fall so that I don't have to do another winter here.
All in all, I believe that the two biggest contributers to the reduced pain were the warmth and the sleep. This may not have any effect for others, but that was my experience, and I thought others of you might find it somewhat interesting....
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Gumby, sounds good except for the sauna. Saunas can trigger LE.
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Gumby, leaving today for ten days in caribbean I will see if my experiences mirror yours. I hate this wet WA cold.
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have a great time pt. I just got back 12-30-12 from 7 days in the Caribbean.
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Hi Gals! hope your all doing better and/or hanging in there. I've been following your posts for a long time as my Onc said he was putting me on Femara, but now has put me on Tamox instead... now I'm trying to wrap my head around that. I only had a TINY bit of estrogen (weakly positive) in my tumor, so haven't found a forum for Tamoxifen yet, not like this one, where its mainly about that drug. I'm not sure if I want to be on them or not. I had/have so many other SE's from other illness's/diseases & left over added fatigue, that my 1st pill left me almost incapacitated, and I just don't have time to deal with all the SE's right now, even if they're short lived. so will try to find a thread/forum about them. Thanks for being so awesome! I've enjoyed reading & sometimes posting. Blessings to you all!
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Cher I know there is a Tamoxifen thread (s) cause I was on 1 for awhile when I thought that was what I was going to be taking
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There used to be a tamoxifen thread for sure, as I was on it (tamoxifen) for six months and used to visit that thread (for ME the tamoxifen SE's were much worse than those I've had on letrozole...)
PT - have fun in the Caribbean!!! We're thinking of taking a trip there in April or May - or maybe go back to Hawaii again.
Momine - do you know why a sauna would trigger LE when just plain hot weather doesn't??? Where could I go to get more info?
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Gumby, even plain hot weather can also do it. My PT told me to wear my sleeve in hot weather (by "hot" I mean 35-40 celcius and up, 95-105 fahrenheit). I am not sure what the problem is exactly, i.e. how the mechanism works, but I was specifically told to avoid hot baths, hot tubs and saunas. Your surgeon's office ought to know or a PT with a specialty in lymphedema and cancer patients.
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Hi Ladies: just thought I would pop in here and say that I have been on Letrozole about ten months now, and apart from thinning hair, which is starting to come back now, I have no side effects. I am however, in that small minority of women who lose weight with Al's ,
but my anti-depressant gives me an appetite, so I'm able to control my weight.
Just thought it would be good to hear from someone who has had little to no SE with this
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Hi ladies. I scanned thread but didn't see this but may have missed it. Does anyone have itching with Femara? I take mine before bedtime and within 10 minutes or so my legs itch to the point of me scratching so hard I leave marks.
Like most of you, I have minor aches in the a.m., takes me a few minutes to get going. And suffer from leg cramps almost nightly. I won't even go into the night sweats!!
Have a great day.
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Sounds like you may have an allergy....should check with your MO.
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Boy I see we are all a 'dried up mess'. Everything is drying up thanks to all these meds we have to take.
Heading to Arizona next week for 2 months and I'm so looking forward to that. Of course...more drying because of the sun and warmth. All I can say is moisturize, moisturize and more. But I'll take that instead of this winter cold weather.
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Just found out after 2 1/2 years on Femara my liver enzymes are elevated so Dr has scheduled a CT but says she thinks it's just the Femara.
Can you ladies remind me how many of you have had elevated liver enzymes from Femara?
Thanks
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Scottiee I have been on letrozole for 6 months with no SEs. I just recently noticed a bit of hair in the shower every day but not much at all.
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Justagirl- my liver enzymes are also up. It is the femara that causes it. Something about the medication can cause fatty liver or even nonalcoholic cirrhosis. If my enzymes are up after next Fridays labs then I get a one way ticket to an MRI of the liver. Just make sure you keep an eye on your enzymes.
I've been on femara for 8 mos, and I started to notice some hair loss around month 3 and just thought it was normal hairloss. Boy was I wrong! It has now become my new normal to see it running down the drain. I would much rather have that than to go through chemo and rads. Vanity is a sad thing ha hope everyone has a wonderful weekend. -
Hi All,
been on Letrozole since Sept. Few side effects. no itching, few night sweats. I had terrible sweats before I started L. worry that it is not working.
WS
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Wintersocks if you are not experiencing any SEs with the Letrozole that's great! Believe me when I say it's most unlikely that its not working for you. I also have almost no SEs but know that it is keeping me stable as I am stage IV.
Try to take a deep breath and relax a little.......stress is not good for you.
Love n hugs. Chrissy -
I am new here. I just started Femera fter being on Tamoxifen since June. I enended up getting bloos clots in my arm!. Amy words of wisdom for these taking Femera. My MO also wants me to go on Reclast for my bones......
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I was concerned that it wasn't working as well but it is. Tumur markers went from 116 to 33 after 6 months of taking it. I may have asked this before but can't remember if it was this thread; what about milk thistle for the liver? Mine are normal but look like they might be gradually going up and I want to stop it in its tracks!
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Milk thistle is controversial regarding whether it is estrogen producing or not.
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Justagirl.....Read the thread I started called " Crawling in and out of that dark place". There are lots of answers to your question on Liver Enzymes.
Let me know if you have anymore questions...been through this a couple of time and is very scarey.
Hugs, Artsee
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Wintersocks - you had chemo so your oestrogen levels will have been lower from that when you started letrozole - so less hot flushes - I am someone with a VERY oestrogen dependent body so my flushes are horrid and all night long even 7 months down the line..........
Itching on lower legs can be sign of lvier stress - I have a lot of itching, scratching does not help
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Why must we stay out of the sun while on Letrozole? I read that on my side effect page. I just love the sun and will be bummed if I cannot get occasional sun come this spring/summer.
Input?
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naturgirl- from what I gathered with the sun is that it can cause serious burns. I am pale white (almost ghostly), when I was on hormones post hysterectomy if I was in the sun for more than 10-15 mins, I would burn pretty bad. So now if I'm out and eating outside I try to get under the shade as much as possible.
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I've never known ( or been told) to stay out of the sun on letrozole. While I don't "lay out" like I used to, I certainly don't avoid the sun. I don't use any sunscreen, unless all organic, anymore either. I have been taking letrozole for 3 years and haven't had any issues with the sun, thankfully. This might be one s/e that I'm not having.....yippee!!!!
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No sun? Ack! Nobody told me that. Like when you are on chemo? I have been walking outdoors without a hat for the past 10 months on letrozole. My doc never mentioned it.
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Gals, like Chrisrenee I'm ghostly white and burn quite quickly, but I noticed last summer
when I was sitting outside the hospital having lunch, with a hat on, practically covered
up to my chin AND sunscreen of 60 on!!!!!...I still got red within seconds of that sun hitting me!!!!!....maybe it's the F/L or maybe some of us have just developed more of a sensitivity as we age...I for one can't go without sunglasses at all anymore...my eyes just tear up.......grrrr -
3.2 years & no issue with sun. I was on a cruise at Christmastime & did get burned, but it was where I didn't put sunscreen!
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Eph, I have never used sun screen. I have tried a few times, but it is so gross and sweaty to wear and it smells too, so I always give up after 1-2 applications.
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I am new on femera after being on Tamoxifen, so now I need to take something for bone loss. Anyone here get Reclast? That is what i am leaning towards...thanks
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I have not been told anything about bone loss or avoiding sun (I live in sunny mediterranean where the sun is strong) due to Femara .................... just told to take the pills and that I might get aching joints and that is it
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Jittersmom....Femara/Letrozole can indeed give some people bone loss....many of us here have a bone density test done before starting, that way we can monitor by having a
yearly one thereafter.
I have not heard of reclast myself....perhaps some other ladies will come on and give
you their opinion. I take a calcium supplement with magnesium along with Vit D3 and K2
in order to try and keep my bones healthy, along with some exercise and light weights.
These supplements I get at my health food store. Hope this has helped you. Cheers -
Jittersmom, I was advised when I started on letrozole to take vitamin D3--1000 IU's per day. I had a bone scan showing I had good density--they wanted to keep it that way. I also take lots of calcium in my diet--milk, yogurt, cheese.
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Anyone been given gabapentin for the joint pain? I think it's making a difference for me.
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I'm scheduled with ortho on Thursday for cortisone shots (my primary is recommending) in both thumbs. The letrozole (and Anastrozole in the past) are rendering me completely dysfunctional because of the pain in my thumbs (40% of hand function comes from thumbs - the main difference between us and the monkey's). Anyway.., HAS ANYONE EXPERIENCED RELIEF FROM CORTISONE SHOTS THAT WAS NEEDED AS A RESULT OF JOINT PAIN FROM THE AI's????? Please tell me it's so!!! And, yes, I'm taking Calcium, and D3, and Fish Oil, and B-Complex, and on & on... :-)
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C squared...trigger finger in 3 fingers is what caused me to cut back to only half a letrozole tablet per day. My joint pain was severe. It went away.
I have had a cortisone shot in my knee in the last year, but it was due to a strain rather than letrozole....but it completely took the pain away!! Good luck! -
Added....the trigger finger went away, still have joint pain, not as severe.
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Right about now I'd love to have a cortisone injection for my hands! Seeing Rheumy tomorrow. Hands swell, wrists swell, nerve pain, joint pain. I've had the hand problems before the AI though.
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I had shots in both my thumbs and also my heel. I was pain free in about 3 days. That was 6mo ago. My primary dr gave me my shots didn't have go to ortho.
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It seems so far that I have some form of inflammatory arthritis. Rheumy went and got another Rheumy to jointly see me after reviewing things with me since I'm seronegative for Rheumatoid Factor and because of the BC and Femara. One says inflammatory and the other says no. They realize the AI will continue or my risk rate to go through the BC again will go up into the 20s.
For now, until the MRI and EMG and more labs are performed, I'll be on a round of Prednisone. Hoping it helps! Told them I have to be able to perform my job and work. Told them I run a computer helpdesk and they rolled their eyes, like oh good grief.
Btw, they discussed research about how MRIs of hands taken of those on an AI have shown synovial involvement with the hand pain.
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Turmeric and boswellia are good for joint pain, and if you take both it works even better than the sum of the two. I'm taking them for cancer but that's what I read about them and the reviews of people who take it say it works great and better than glucosamine chondroitin.
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Ahh, have been on htat one. No help. Mine is nerve and joint combined.
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Early on in this thread there a discussion on prices for Femara. I'm on Femara for two months and getting ready to order my next month of meds. I have a new health plan and have been getting prices using this plan. I can't believe the difference in prices --- CVS with Medco 62.25---Costco with Medco 16.68. I did find out that they use different companies for supply Mylan and Apotex. Has anyone noticed a difference? I'm afraid to change to get the better price and have problems with the new med. I already had to switch from Arimidex because of numb hands. Any help would be appreciated.
Hope all have a great day)))) -
Mine have always come from Sunpharma. I think it would be interesting to compare brand names and SEs. I will start.
Sunpharma - no SEs -
I take Femara made by Novartis Pharma in Switzerland. I think it is the original and not a generic. The brand name is Femara.
I have foot pain on and off, sometimes pretty annoying. Also my hands are stiff in the morning. I had some digestive problems in the beginning, but adding some probiotics took care of that. I have lost bone mass. Otherwise nothing much.
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Januaryice - My pharmacy recently changed to the Apotex brand (made in Canada) from the SunPharma (made in India) which is the one I started with. I'm halfway through the 2nd month on the Apotex brand. I think it actually has fewer fillers than the SunPharma but the smell when you open the bottle will curl your toes. CHEMICAL and it takes a lot to curl my toes, i.e., nurse, chemistry/biology degree/goats. But I put it in my body because with as ER+ as I am I KNOW it is necessary and esp. since I didn't have chemo.
I have the stiff hands/knees and general slowness in the mornings. Memory may be a little worse. I am 60 and recently quit my job, nothing to do with the Femara, just time. Overweight and getting worse but cannot attribute to Femara. Am osteopenic which was b4 BC. Not on anything just yet for it. Declined Fosamax in December. Take my calcium/vit D and take a liquid vit D when I remember it. I used to take the Femara at night but had some insomnia. Take it in the mornings or even midday now. The insomnia comes/goes and seems to be tied to anxiety/worry, doubt it was the Femara. It has never bothered my stomach. I eat breakfast with it as I take in with my Metoprolol which has to be taken with food. And the Metoprolol predates the Femara so the BP problems are not due to it. No SE that at present would lead me to stop. Actually say a little prayer when I take it that we have such a drug. I'll tolerate some SEs in trade. I see really no difference in SEs since I switched brands. Asked my MO why Femara and he gives every other patient Femara so I was that every/other pt. I don't see me changing drugs.
On page 101 Omaz put a list of fillers of different brands. I went to the Apotex website and found theirs. Have heard of many on here on the Mylan brand but no has mentioned Apotex but me.
HLB - I also didn't find anyone else on the SunPharma brand.
Are those quotes for a month or 3 month supply, esp. the CVS quote? I sure hope 3 month supply. The cost my insurance pays has changed greatly over the 8 months I've been on it at the same grocery store pharmacy. Started out $420 (my copay $15) down to $203 in Sept and now insurance paying something like $15.00 even b4 the switch to the Apotex. Boggles the mind, esp. when I saw the $420 (and that is only ONE month supply). Have no clue why the drop in amounts. Pharmacy explained they switched out wholesaler recently so all my prescriptions have changed and that's why the change to Apotex.
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Also high cholesterol, as the list goes on and on.
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Wow ee - wonderful.....more SE´s.....
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Jaunuaryice....mine is generic Letrozole I got 9 days it was 105.49,with my insurance i had to pay 12.00
now I am waiting to see what SE's I get. I hated Tamoxifen so i am hoping this is better
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Teva Pharmaceuticals for mine. Joint pain is the main s/e. No hair thinning for me.
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Hi, Ladies,
Thanks for all the good info. Read as far back as I could til my eyes crossed. Have a question for you.
Took tamoxifen for 2.5 years, and just switched to Femara two weeks ago. I had joint pain on tamoxifen but it was bearable, especially if I walked or swam. On Tuesday I swam and now have very bad neck and shoulder pain. Can hardly turn my head. Waking me at night. Took Motrin one night, Alleve the next and neither helped. Pain is clearly muscular, not bone related. Diffuse, like the kind of pain you get when sitting at your desk too long. Also muscular pain in my legs. Anyone experience anything like this? Really the worst muscle pain I've had and think it must be related to the Femara.
Re elevated liver function tests, I have had them off and on for a few years. Went through the panic and turned out that an US showed gallstones (can be produced by an over abundance of estrogen, similar story w huge fibroid which caused a hysterectomy in 2008.)
Thanks! Good weekend everyone,
Shari -
I buy my letrozole at Costco in Seattle. The brand name is "Cara", the pill is mustard colored. Last refill was $18.00 for 3 months - without insurance - which was approximately 1/2 the prior refill.
The SE's I have are:
muscle aches - primarily in my legs/thighs
joint aches - neck, hands, feet, back, knees.... pretty much all of 'em. (I take boswellia, turmeric, glucosamin sulfate and chondroitin. As long as I keep this up regularly I'm better - not good, but better)
thinning/stressed hair, broken nails, etc (biotin helped this)
MUCH more and worse indigestion. For this I take probiotics (and an occasional tums)
fatigue - I take the pill at night and that helps - but I'm really not "happy" unless I get about 11 hours of sleep at night, where I used to be just fine with 7.
lousy memory - which can't be "just" age, as it dropped out at a pretty remarkable rate when I started letrozole
so far no bone loss, no liver problems so far as I know, my cholestrol is a little high, and I have an even harder time losing weight than I used to have. When I was in the tropics for a month most of the joint/muscle aches disappeared, but the rest stayed with me.
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Day...please keep us posted as to your results ok?
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I started letrozole right after chemo ended, so I can't really tell if my cognitive and fatigue issues are from letrozole or long-lasting chemo side effects, but I'm guessing the latter, since they seem to be improving verrrrry slooooowly. I've been lucky in that I have had little joint pain; I do have joint issues (frozen shoulder, costochondritis) but they seem to be unrelated. Of course, there's always the possibility that letrozole could be making them worse.
What fingernail issues are people having? My fingernails are ridged/warped in both directions, and have white streaks as though they are very scratched and dry. For a while I was painting my nails, but I can't seem to sit still long enough to let them dry.
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cfdr....had those exact nail issues....only one thumb now that is still warped with ridges,
but they continue to be dry no matter what I try. I have been on Letrozole for about ten months. Hopefully your nails will improve eventually. -
fingernails are ridged and break easily - though when I'm conscientious about taking biotin they are much better - maybe even back to "normal" though my memory could be playing tricks on me....
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I've beenon letrozole made by Generic Medical Partners Inc. for almost a year--I have the same nail issues and have thinning hair. I briefly (2 days only) had achey joints--had some UTI issues otherwise no other side effects--well maybe harder to shed a few pounds--the only side effect I can definitely attribute to letrozole was the aches I had--becasue it occurred about two days after I started the meds. I also believe the thinning hair is from letrozole as I can't think of any other reason. I am sorry to hear about the more serious and painful effects others are having.
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Hi Ladies; I have been taking Fermara for the last two weeks; no side effects until this morning, my hands hurt alot! My breast cancer was diagnosed in stages; beginning with a papiloma in my right breast and advancing through biopsies and mris to idc and ilc. I have had two lumpectomies and finally a mastectomy in December. The final pathologist report showed cancers were er and pr+, lymph nodes (6 were removed) clear and no more invasive breast cancer found. The Oncotype DX could not be done because the tumors were too small and my oncologist has now put me on Fermara.
I am going to see him on Monday but I was wondering if anyone else has the same kind of diagnosis and what was recommended.
Thank you so much!
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Karen an AI of which Femara is one is standard treatment for someone who is post menopausal and no chemo required. It is used the same way as Tamoxifen is for pre or peri menopausal women and it will be suggested that you continue it for five years.
Hoping your SE's are few and all manageable.
Love n hugs. Chrissy -
Thanks Chrissy! I took some Tyneol Extra Strength last evening and it helped. Also, my right arm sometimes goes to sleep in the night; but I read on other blogs that this is another SE.
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Karen -- It could also just be the position in which you are sleeping -- which changes in relation to aches/pains/surgeries. Try consciously sleeping in a new position - you can even put a pillow under your knees to keep you on your back for a night, and see how that works re your 'sleeping' arm.
I realize that I tend to panic and see each pain/change as a SE -- but when I calmly step back, I think that I actually still have NO SEs so far... only fleeting aches and pains -- just like I always have had, in reaction to stress or over-work, etc.
Knowing that someday I may experience real SEs, or even reoccurrance... I am determined to appreciate every singe GOOD day and whatever GOOD health I currently experience -- to the max!
I am only about 2 months in -- (first 45 days I was on Letrozole mfg by Teva - purchased at Sam's Club in Santa Fe for $300 !!!! -- switching about 3 weeks ago to Letrozole mfg by Sun -- purchased at Costco for $18 for a 90-day supply!) My insurance does not cover meds... so (once again) for those new to this -- call around to check prices -- you can save thousands per year by choosing the right pharmacy!
Linda
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Hi Linda and everyone, Well today I went to see my oncologist for him to see how I was doing on Femara and he told me that since the Onctoype DX test could not be run for me (my lesions were too small), he made the suggestion that I go on 4 rounds of chemo every three weeks for twelve weeks. I asked why since my lymph nodes were clear and the lesions were 100% ER and PR+ and I am taking Femara, he said 90% I would be o.k. without chemo; but there is the 10% chance of recurrence or spread.
I talked it over with my dh and I am going to reach out to other breast cancer oncologists for their opinions before I make a decision.
Anyone else been in this position?
Thanks and best wishes to you all!
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karen- may i ask what size your tumors were? Mine were 2 cms and I did not need chemo/rads. My oncotype score was 7% if I took Femara and 14% if I did not. You have every right to get a 2nd 3rd or 4th opinion if you want. You have to be happy with what you are being told. Good luck with making your decision.
christy
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My tumor was ER/PR+, node negative, and at 1.1 cm it was thought I wouldn't need chemo at all until the oncotype score came back at 25. If your tumor is even smaller, I'd wonder why your onc is recommending chemo unless there's something else going on, e.g. a tumor grade of 3. Certainly worth asking more questions and/or a second opinion.
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you can see my stats below. My onc score was high so after being told that I probably wouldn't have to do chemo, the MO & BS both encouraged me to do it after all. What they didn't know was that I had pretty much decided I was going to do it anyway, no matter the score. I wanted to throw everything I could at the beast.
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The current standard of care is shifting, in large part due to the oncotype test -- and the new acceptance that that chemo works better with agressive cancers -- but with slow-growing tumors (low oncotyoe) chemo can actually cause more harm than good.
If your tumors were so small -- were they able to grade them? If so, then it seems odd they couldn't also oncotype them.
I have not heard of this situation before ... and (being a bit cynical myself) I kind of wonder if there might be another reason the oncotype test wasn't done -- like an error by the surgeon in not ordering it to be done... hey -- everyone is human and no one is perfect.
I would definitely get more opinions -- some women feel as EPH does (above - about throwing everything at 'the beast') but chemo is poison whose aim is to kill every new cell in your body -- cancer or healthy. It can have some very detrimental consequences... so there is no sense in rushing to take poision that will harm you -- unless its affects are considered to be beneficial.
Take your time and ask a lot of questions so that you feel comfortable with your decision.
You might start your own new thread asking the question -- because only Femara/Letrozole women will probably see your question here.
Best of luck
Linda
Best of luck
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Karen, I was node positive but had an oncotype score of 14, so didn't have either chemo or radiation. It's a tough decision to make, though, as on occasion (such as when I reacted EXTREMELY badly to tamoxifen) I wondered if I should have thrown more at the beast (as Eph says). But femara is treating me OK, and now I'm back to being thankful that I didn't take poison.
I'm with Linda that there might have been other reason(s) for not doing the scoring, but how small were your tumors, and how many did you have??
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Hi gardengumby, Linda, and everyone who replied to my post.
I had one ILC 1.8MM and two microinvasive ductal carcinoma (0.4mm and 0.5mm) which were adjacent to one another also DCIS low to intermediate grade and LCIS, focal. 100% strong for ER and PR. No other invasive cancer was found in my breast after the mastectomy.
My oncologist said very rare but sometimes there is not enough tissue for the OncotypeDX test; doesn't mean that the number would have been low; only there is not enough tissue. However, he did believe that the number would have been low given the properties of my tumors if the test could have been done.
I am now in the process of getting names of breast cancer oncologists for a seond (or third) opinion.
Thank you all very much.
Karen
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What did it receive for Grade though, Karen?
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Hi Galsal, I don't know the grade; how do I find this out? Thanks,
Karne
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Karen -- Did you get a copy of your pathology report? Your grade will be there -- as well as a lot of other good info.
BTW -- I ALWAYS get a copy of every report sent not only to my doc, but to ME. Sometimes it is amazingly hard to get them to give you your own information -- but I can be a pit-bull when I need to!
Linda
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Linda Ranching, I absolutely agree with you. When this whole fandango started, I created a binder with dividers--path reports, labs, procedures, drugs, etc. EVERY TIME something is labbed, scanned, prescribed, operated on, or sliced up and studied, I get a copy of the report. If it's imaging, I get a disc of the MRI, mammogram, CT scan, whatever. It all goes into my binder.
I can't tell you how many times, with all the damn physicians I've consulted over the last 1 1/2 years, this has saved me time, money, and frustration. I'm not crazy about all this being on-line and having every physician, PA, nurse, and dog-catcher in the world allowed access to it, but I can be the keeper of my story and share as necessary.
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I've been on femara for 5 mths and besides the ridiculous joint pain, I'm noticing my hair thinning radically and my scalp feels like that chemo thing before your hair falls out - are we talking major hair loss here folks or thinning ( neither of which is appealing).
Kathryn
PS I'm taking this for a metastatic recurrence (12 yrs after initial dx - are you friggin kidding me!?). Most of the posts seem to be from people are using it as a preventative thing. Sorry, I'm new to all this - is it used for both? -
Ktm -- either way the goal is to flood the system with fake estrogen that attaches to the cancer ER/PR receptors, providing those pesky cancer cells with nothing real to feed on.
I started Letrozole just over 2 months ago -- still no SE's -- and my bloodwork came back with everything still solidly in the normal ranges -- so I can't help but wonder if some of that is the supplements I take. Could the 3 glucosomine per day be way-laying joint pain? Maybe... and I am also taking "Green Food" (containing concentrated brussel sprouts brocolli powders) and "Super Green Algae" three times a day... as well as extra vit D3 and E and wonderful all-natural full-range vitamins (from Melaleucca -- which takes great pains to balance/pair vit/min in ways for best absorption -- and not 'over' dose what can't be absorbed).
My next blood work will be in March ... keeping my fingers crossed.
Ktm - are you taking any supplements to help balance the Femara/Letrolze SEs?
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Hi Kathryn....many women have an issue with thinning hair , myself included. I started
Losing from the get go. It's been almost a year now and my hair has started to grow back slowly, but the texture is very bad....like straw...I take biotin and it helps somewhat. -
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Day, I just started using organic Argan Oil last night, funny you should mention that...lol
I will look into the shampoo and conditioner...is it organic? I have become a little anal
since my BC dx. -
PS Day....your hair looks amazing!!!!
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ktml- I didn't have any hairloss until around month 2. Since then it's been a gradual hairloss and it sucks kinda. I have real thick hair and always had to get it thinned when I got my hair cut. Now I pretty much wash/brush my hair and it's falling out.
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Kim, I also have metastatic disease and have been treated for the last two years with Femara. It is keeping me stable which is a good thing. I had a lot of hair loss which has now pretty much stopped but I still have the sore/sensitive scalp just as you describe. My hair didn't grow much for ages either but has of late begun to grow again but it is slow........it's also very fine and a lot thinner than it used to be but there is still more than enough to fluff up with some product and a hair dryer when the occasion calls for it.
Hope you do well on it.
Love n hugs. Chrissy -
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Day, thank you very much....sounds good!!!
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I just completed a year on letrozole. About 3 months into it, I started having joint pain, which was usually relieved with naproxen. I have to say that at this point, I'm having much less pain. I had really thick hair before chemo, but now it's considerably thinner. I'm hopeful that it will start growing again as some of you have indicated.
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Anyone else have their alkaline phosphotase go up while on femara? How about urea?
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Day, crap! I was afraid that might be what it meant. How high was yours, if you don't mind?
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I just completed my 5 years of Femarra. I experience hair thinning over a period of time so it is difficult to say when it really started. However, after about 2 1/2 or a maybe a little more, I experienced problems with joints and bone density. I sometimes feel a little tired other than that no other major effects.
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Bjcm, you say "completed" so that means your doctor isn't pushing for an extension on your consumption of the Rx? Congratulations. I hope that your aches & pain & tiredness will begin to go away now.
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Hi everyone - I was originally on Tamoxifin but then had a hysterectomy in May of 2012 and then was put on Femara. I still have joint pain and horrible hot flashes - I am on high dose of effexor and just recently started taking vitamin D3, fish oil and the Melaleuca vitamins which are helping me feel better - My question is for people that have been on Femara for awhile - when do you feel the SEs get better - after a year, 2years? Thanks!
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Sheribell- I had minor joint pains for a couple of months, then I had another surgery TE placement and was placed on Levaquin and that started up major joint pains for 2 months. I guess something between the two causes major issues. Since getting off the Levaquin I have not had any issues, plus I take 2 glucosamine pills a day to help prevent joint pain as well as advil.
Bjcm- Congrats on completing your 5 years. In may will be my 1 yr anniversary on it.
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Hi Chrisrenee - thanks for the info - do you think the glucosamine is making a difference? That is one thing I am actually NOT taking as of yet - I take a handful of supplements everyday!
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Sheribell- I think it is a combination of the Glucosamine and the advil. One of the things my Onc told me was that Femara actually dries out the fluid from your joints, and that taking glucosamine helps keep the fluid in the joints. The advil helps keep the inflammation down. Now when my PCP or PS wants to give me Levaquin (which also sucks out the fluid from the joints) I request amoxicillan, or bactrim or both. Before diagnosis I only took 3 pills, 1. hormones 2. sleeping pill 3. multivitamin. Now I take 1. sleeping pill 2. multivitamin 3. Effexor 4. glucosamine 5. calcium 6. advil 7. Femara. I am about sick of medication. Hope that helps you Sheribell, if you need anything let me know.
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Thanks Day, I would really appreciate that.
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Day, thank you so much. It really helps to have an idea of the point at which it is considered a problem.
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Day, sounds like you are in good hands. Thanks again for the specific info, it really helps.
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Day, I have hair thinning as well from letrozole--I was post menopausal when I started on Tamoxafin for 2 years and then letrozole for the last year--I never encountered hair loss until the letrozole--was wondering what the gerovital shampoo does: what is special about it--also what special properties does argan oil have for hair? Just curious--Ihave never heard of these products.
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Day, thanks for the info--I am one of those who like more 'data'. this helps a lot.
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Thanks so much for all the posts regarding hair loss. Sounds like for most of you it doesn't get too bad and seems to abate over time. It's somewhat comforting (unfortunately) to know that the side effects I'm experiencing are 'normal' and your coping suggestions have been helpful. Also nice to hear about the supplements that many of you have mentioned being on (either for side effects or to combat the effect of femara on your body period)- no one suggested anything to me. Have an appt in a couple of wks with the onc, so will bring that up.
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I take MSM powder, drink a teaspoon a day in water. It strengthens my hair, my skin looks better, looks more healthy and I feel better. Really helps with the pain and fatigue from Femara. There are some articles I've read that say it also has anticancer effects, especially for bc. There's quite a lot of info on it out there, but so far no real evidence base on that. Still it has enough other benefits that I take it.
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Hi, Ladies, I'm a bit new here. About a month on Femara. I thought I was having more muscular pains than usual, but I can handle that. I've noticed now that I am so so so cranky! This is harder to handle!
Irritable, moody, depressed, weepy. Feel like I'm going through puberty again, or having turbo charged PMS. Also more tired than usual. Shouldn't complain, as I normally have trouble sleeping, but now seems that I want to sleep all the time. Sleep 8 hours and wake up tired. Exercise isn't helping. This doesn't feel like a deep depression, just overall sluggish moodiness. Really don't want to go on anti-depressants as I am already taking meds for asthma, too. May even feel better if I hear from some of you that you've had this and that, yes, it does pass?
Thanks, weepy Shari
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Hi Shari I think what you are feeling is the SE's of lack of estrogen.......yes we have all felt them unfortunately. If they are really too much for you to handle it may do you some good to ask for a little something to help lighten your mood. As for the sleeping all the time, I was having the same problem until I started taking the little just before bedtime and that seemed to alleviate that all encompassing tiredness somewhat.
Hoping you feel less of the effects as time goes by.
Love n hugs. Chrissy -
Shari, yes, I had a bout of what you describe. It lasted 3-4 weeks and then I snapped out of it. By week 3, I had decided that if it did not lift on its own within another week, I was booking a shrink appointment. Maybe I scawed it
Hope you feel better soon.
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Hello from sunny AZ where I am spending the next 2 months. Sure beats the Midwest right now.
As I've mentioned before, estrogen or lack of thereof can do bad things to our bodies. All the side effects can't always be blamed on Femara. It does prevent the production of estrogen, that we know for sure.
My Onco said to take Aleve or the generic form. I do not put too many other meds into my body, except for the important vitamins. If there is an issue in blood tests, then it takes too much elimination, to find the culprit. I have recorded some of these issues in a thread I started called. " Crawling in and out of that dark place". Sometimes things get extremely stressful and I think since the BC, chemo, rads.....our bodies will never be the same. The effects we will have do deal with, as best as we can. My five years on Femera...were up and down. The bones and joints are more like an 80 year old than a 64 year old, thinning hair and skin....lack of that estrogen that kept us ' glowing all our b-4 C lives.
But the alternative is not where I'd want to be just. Too much to do.......:-)
Hugs, Artsee -
Wow. Thank you! I'm experiencing that guilty feeling of being glad I'm not alone in this but still sorry that we are all going through this. So it sounds like I'm not insane...just drug addled. Relief. I had similar symptoms while on lupron. This actually pushed me to get an ooph so I could stop that nasty drug. Like lupron, Femara is now being used as a fertility drug. Just read this. Wonder if they are related. Think both work on the pituatary gland? These are strong meds...
Off to swim. Sometimes that helps. Thanks! Good wishes to my Femara friends! Shari -
When I first came to this thread, I was horrified by all the side effects descriptions -- until I realized that that the women who are NOT experiencing any side effects -- are probably out enjoying their lives and simply not posting here!
So -- to any New-bies to the drug -- and to these threads -- Not everyone experiences side effects -- and I have read many posts from women who had some side effects for a few months -- that seemed to lessen or even disappear within a fairly short amount of time.
I have only been on Letrozole (generic Femara) for a little over two months now.... and I am determined to NOT call every ache a 'side effect'. Our brains respond a great deal to our thoughts/fears -- and that we can worry ourselves much sicker than we need to be.
This is not to discount true (and sometimes debilitating) side effects that some women DO experience -- but if we add worry and fear into the mix, ANY side effects will be/seem worse -- aided by the toxic chemicals our brain will send through the blood stream in response to our fears.
My mantra so far is to 'Be Happy' and my aim is to just live life fully - sort of ignoring smallish aches and pains instead of helping them gain significance. If my ankles/feet hurt in some new way -- at least so far, I am claiming it only to be caused by yesterday's hike. (I hike 2-5 miles per day out here on the ranch over hill/dale and through forests). And I find that this 'ignoring' works pretty well! I keep on walking -- (maybe a bit slower or less far -- but still every single day) and the next day, or the next... I am finding that the 'new' pain has completely subsided -- and I feel perfectly normal again.
Don't know if these occasional/temporary aches/pains are related to the Letrozole or not. But I have 5 years of this drug ahead of me -- and I am not going to spend that 5 years anticipating problems that have not yet proved to be real!
And -- I VERY much appreciate the suggestions for treatment from those of you who have found relief... more tools in my tool box if I find I need them at some point in the future.
Diet/Exercise/Supplements can help with most side effects, too... so I am taking Vit D3, E, and glucosomine as well as a full-regimine of Natural vit/minerals... and at least so far, all my blood work is still in the very center of the healthy range, my skin/hair/nails are just fine -- and (only 3 months post BMX/DIEP recon and 2 months into Letrozole) I really feel amazingly great!
Linda
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Femara is a fertility drug???????????? How can that be?
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Well thanks for all that info Day. Very interesting.
My onc has never run an estrone/estoradiol test on me. I see her at the end of this month so I'm gonna ask her about it. But I've had side effects so maybe she knows it's working because of that?!?!?!?!?!
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I am not having SEs and I was worried that it wasn't working but my TM has gone from 116 to 33 in 6 months. Maybe its because I had already been in menopause for 8 years, idk.
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I am on femera after being on Tamoxifen, and so far I feel better than when i was on Tamoxifen
I do have a question. Has anyone had a Reclast infusion for bone loss? i had one this week and had some strange side effects. The first night i woke up with the worst chills and headache, last night i sweated so much i had to chang my cloths! Today i feel ok. Just wondering if anyone had this happen?
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Jitters, I have not had this drug, but was discussing it the other day with my doc. He said that you can get flu-like symptoms for a day or two, including high fever.
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Thank you Day :-D. Yes I'm very relieved esp for my parents. I hate how much they worry about this crappy disease.
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Want to thank you all for your responses.
To Linda, I completely agree with you. I think coping with this drug will depend a great deal with our attitude. Femara is my best shot (recent research shows that it beats the other AI's for lobular BC) so I am on it for the next 5 years, at least, whether i like it or not. I have decided that I can succomb to SE's and mope or try to live life, working around them. I don't want to minimize anyone's pain, but I find that a positive outlook helps to minimize the focus on all of these new problems. I exercise, eat well and take omega 3 and vitamin D3. Have better than avg bone density (so far.)
Conversely, I do like coming to this list with questions. It is reassuring to find that many of these new aches can be attributed to Femara. I understand that we can't diagnose virtually, and will check out any nagging symptoms that persist, but I welcome the real life descriptions that I can get here. The drug insert just doesn't do it for me. Day, I appreciate your info.
One nice SE that I hope lasts is that I am sleeping better on Femara than I have in years. Granted I am tired by 3pm, but at least I am sleeping well during the night. Have only been on F since mid January and I am seeing the hot flashes beginnning. Was happy to be rid of them after a year of intense ones following my ooph, but like everything else, they sure beat the alternative.
Thanks Ladies, good weekend. Shari
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I think the thing to remember here is that with Femara/Letrozole -- just like everything else in BC -- each woman is different, and will react differently -- both physically and philosophically.
Day -- It sounds like you really had a very rough time on Femara... and I think that you are right, that you were definately one of those who "got hit hard with the SE".
And, like I said in my earlier post -- I know that some women ARE hit hard -- and have some very debilitating SEs.
But -- The very first time I visitied this thread -- I absolutely freaked out, reading about the long list of terrible side effects listed here.
So, I had a VERY LONG talk with my oncologist -- because there was no way I wanted this 'extremely detrimental' drug in my system.
However - my oncologist assured me that her patients have experienced many more side effects from Tamoxafin (like maybe 30% with severe side effects that had to be treated with more drugs or even switch to different anti-cancer drugs).
But she has only had 'a handful' of patients with Femara/Letrozole SEs that required treatment or switching... plus she says that for post-menopausal women, the Femara/Letrozole is proving to be MUCH more effective than the results of all the studies of women on Tamoxafin.
So, I "determined" to be one of (as she described it) the 'vast majority' of women who have few-to-no side effects. My oncologist in no way told me that I must expect severe side effects or it meant that the meds weren't working. My cancer is 100% ER and 100% PR positive. So using Letrozole(Femara) should be extremly effective for me.
And -- if mental attitude has anything to do with health -- which I firmly believe it does -- then I will also do my very best to maintain the most positive attitude possible, and not look for SEs where they don't exist.
I am in no way saying that people who have difficult SEs have them because they unwittingly 'wish them' into being ... but I DO believe with all my heart that just as we can 'worry ourselves sick' -- we can conversely 'wish ourselves' into the very best frame of mind for the best health possible for us.
So -- to all the newbies here (which is the reason I keep posting here) -- Just as everything else in bc -- our bodies and our cancers are all DIFFERENT. A few people (like Day) have a very adverse reaction to Femara/Letrozole. But (accordning to my oncologist) the vast majority of women who take Femara/Letrozole do NOT experience severe side effects... and some simple supplements like D3 and Vit E and glucosamine and lots of exercise (like daily walking) can greatly relieve the (usually minor) side effects that you might encounter.
I am no expert. I only started taking Letrozole (generic Femara) December 1, 2012. But I promise to keep posting here from time to time -- to let you know if my 'power of positive thinking' is working for me!
I only know that thinking happy and living/thinking healthy makes the experience of even the most tragic set-backs be less-bad. I was primary caretaker for my wonderful Dad through his cancer, and eventual death -- and both Dad and I found the humor and humanity and BEAUTY of life -- in every step of the way. His grace, strength, and humor taught me wonderful lessons -- which have helped me immensely in coping with my own dx of cancer last spring and all the subsequent treatments and surgeries (including a double mastectomy).
And YET -- Despite the recent loss of my father and my own BMX -- I can honestly say that the last year has been the BEST year of my entire life.
How can that be? It is because my mind is full of new concepts -- I now see life as a powerful POSITIVE force over-flowing with intense intimacy and beauty.
Since I have been able to find new strength and insight through my father's illness/death, and my own cancer -- I know that I can also deal with whatever else is coming.
At the very least, a positive outlook certainly can't hurt -- and creates a space in which we can live the best quality of life possible during occasionally trying times. I strongly believe that much of our pain and other symptoms are caused by our worrying them into existence.
So, Yes, a few women will have severe side effects with Femara/Letrozole -- just like some people are allergic even to peanuts or bee-stings. Day, perhaps your thyroid meds or thyroid condition contributed to the severity of your Femara SEs, too. Some people are simply more sensitive to some meds than others. All bodies are not created from the same mold.
But I would sure hate for women new to the drug (and to these threads) to assume that unless they have terribly-debilitating and life-interrupting reactions -- that the drugs aren't working: That the worst side effects are inevitable.
My oncologist promises that no such thing is true.... for the 'vast majority of women.'
And I (for one) plan to be in the very-healthiest/least-affected group of that "vast majority"!
Best of luck to each and every one here!
Linda
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Day, lol on the unicorns and I agree. I do try to look for the bright side whenever possible and it does help me. But when I have been hit by really crippling SEs, in my case from the taxotere, no amount of positive thinking could drag me out of bed.
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Linda...lots of good points. I belong to a support group and it hard when a newly diagnosed lady is there and someone shares the worst case scenario. I have come to learn that i am one of those that gets all the weird side effects, but I talk to my oncologist and we try to find a solution!
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Day, I had some wheezing this summer and had a CT to rule out fibrosis (or worse). I seem to have escaped this fun SE. The docs could find no reason for my breathing problem, but it disappeared when I started eating better and taking some magnesium.
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Unicorns shitting rainbows... Hmmm -- I don't think anyone had ever described me that way before!
Funny thing is that up until about 2-3 years ago, I was the one LEAST likely to look for the bright side... but I went back to college -- took Philosophy, Psychology, Interpersonal Communication, Sociology -- all of which taught me the technique of stepping out of my own (limited) view of the world -- and encouraged me to look at the 'bigger picture'... and the science behind emotions and health.
Our brains search through the millions of bits of information that bombard us every day ... looking for connections to things that we found significant in the past. Human brains are wired to do that -- and if we focus importance on negative experiences -- THAT is the sort of connection that our brain will search out.
"Law of Attraction" -- well, I never mentioned that -- but I think that is sort of "metaphysical short-hand" for what the science behind it -- which is what I just mentioned.
If our view of the world is that "Love is Hard" and "Relationships are Difficult" -- then those are exactly the sort of connections and conclusions that our brain will make... and the sort of experience we will have in life. We will be suspicious of getting close, and sabatoge good relationships by coming from such a negative context. Our brains will find the evidence to prove that view of the world.
In the same way -- our brains will search for (or even create) physical symptoms and disease -- and contribute its own orchestra of chemicals into the blood stream to support our NOT feeling well -- if that is where we concentrate our attention.
This is NOT to deny that we also have a physical body -- and actual disease. Our bodies are deteriorating -- and rejuvinating -- all the time. At some point the scales are tipped, and the deterioration takes the lead... but this is just a part of being in human form on this planet. Each and every one of us is nearing death with every breath we take.
Anyway -- all my college study (and new/deeped understanding of the way my mind worked -- and how I could acutally CHOOSE the emotions I was going to experience... ) was going on at the same time I was care-taking Dad through his daily radiations and occasional chemo, along with a multitude of doctor appointments and the occasional surgery. He was TIRED. Many times a day we had to deal with getting nutrition into him. My mother was so deep in denial and depression that she needed my help nearly as much as Dad did.
Dad and I focused on the 'positive' reasons to get past the cancer. One day at a time we managed his care -- including his mental health -- focusing on the beauty of nature (which is what got him through). We planned a great cross-country trip for when his chemo/rad was through -- and cancer was 'gone'.
And -- we DID it! As he said -- he "kicked cancer's ass"! His onc said that Dad's success was in the top 2% of all the esophogeal patients he had ever had -- and that Dad's positive attitude and the fact that he kept 'getting nutrition' was what did it. I can tell you that 'getting nutrition' was not easy for him. If we had needed to resort to a feeding tube, I am sure it would have taken away his will to keep going. So many many MANY times a day -- I would carry him a "Boost" or an "Ensure" -- and stand there until he at least took one sip. Then I'd be back in about 30 minutes to see if he had taken any more -- and stand there, smiling-but-firm, until he at least took another.
But I think it was planning the trip that really was his biggest incentive! When chemo/rad was finished -- We visited 7 National Parks from Kansas City to Tucson -- and drove through some incredible natural wonders -- like Monument Valley, the Grand Canyon, and the Petrified Forest. Dad and I even hiked some of the easy trails at Hovenweep, to see the ancient Indian dwellings... But the planning of the trip was almost as much fun as the taking of the trip! It gave us something positive to focus on... it was our dangling carrot.
And then we took a second trip later that summer -- to Maine - for my older sister's wedding! Dad walked my (then-60-year-old sister!) down the aisle -- as she married her E-Harmony Honey of 3 years. What a wonderful trip that was -- we dilly-dallied through CT and VT on the way home -- drinking up the scenery...took the back roads -- and stopped in OH to see the old family graves and visit my Dad's one remaining relative...
Then, about 2 weeks after we got home, he had a major seizure, and they found a brand new primary (stage IV) brain tumor. We immediately moved into Hospice, where I spent the last month of his life with him. Believe me -- if we had wanted to focus on the negative -- it could have been a very tragic time. But instead, we celebrated his life (and our love for each other) every single day. He was completely cognizant and "with us" until the very end. Dad and I had lots of long talks about the afterlife -- and I even asked him to (once he was in Heaven and if he was bored...
look around down on Earth -- and to send me a 'Good Man'. (BTW -- I think he did -- I am in the very best relationship of my life now -- living on a gorgeous (huge) ranch that spans from 6000' to 13000' elevation -- and I see my Dad here in every glorious sunset or mountain vista). Anyway -- When the nurses thought that Death was close, one suggested that we might want to take Dad's bed out into the garden (they had a beautiful garden, and Dad and I had spent many many hours out there together. Dad had taught Boy Scouts for 50 years -- and was an avid outdoorsman. The nurse's idea was a brilliant one -- and they took out both our beds... to sleep under the stars.
All night long I talked to Dad -- poured out all my love to him -- reminisced about our camping trips and hikes together -- rambled on about possibilities of God and Afterlife... Told him again (and again) how much I loved him, and was thankful for our time together on this beautiful planet.
Four days and three nights we stayed outside, watching the fall leaves turn deeper red and brighter yellow. The constellations and moon passed overhead -- we shared the glorious sunrises and sunsets. I likened it to a mountaineer's base camp... with family and friends (and me) as his crew... supporing him as he readied himself for the final ascent to Heaven.
What could have been tragic and painful and the WORST experience of my life -- was instead -- full of love and epipnany. I found out what love (and love-of-life) really was.
Anyway -- long post.
But my reason for doing so is to help explain that we each get through this life by using our own unique thinking. Some of us believe that focusing on appreciation and the beauty in this life helps us not only 'move through' tough times -- even physical pain -- but also allows us to find enlightenment and personal strength.
I am a completely different woman than I was only 3 years ago. And I use the lessons I learned with Dad every single day in my own life now -- and it has helped incredibly for me to find the blessings hidden in my own dx. I could have stayed in "this isn't fair"! about my cancer -- after all, I was dx'd only 6 months after over a year of care-taking my Dad through his cancer... and I had just fallen in love with Les. But what could have been an incredible "burden" on a new/budding love -- instead became an opportunity to move faster and bond tighter. Les has SO stepped up to the plate -- is a wonderful nurse and support team... as soon as we got my dx he invited me to move in out here, and he wanted to be my partner in this. The bc gave him the opportunity to show me what a truly wonderful/compassionate man he is.
I must say that if this is "shitting rainbows" -- then I can only say that I am VERY happy that I learned to do this -- Because shitting them is MUCH more pleasant thatn shitting ON them!
We each do the very best we can in every single moment. We continually choose how we will experience life... no matter what Life brings us -- and we each have the choice to focus on the joy or the pain.
I choose joy.
My best to you all!
Linda
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@] I went to a lung doc and he said it sounded exactly like asthma. I started taking magnesium for a different reason, but then realized that the breathing problems had stopped. When I checked, I found that asthma can be a symptom of magnesium deficiency.
Linda, I think what you are talking about is being master of your emotions instead of letting your emotions master you. This has been sound advice since ancient times, the "unexamined life" and all that. Where I draw the line, however, is when people assume that mastering emotion means we can also will our physical condition to be something other than what it is.
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Momine -- If you believe that people can 'worry themselves sick' -- then even you believe that we can 'will our physical condition to be something other than it is".
Science shows that petting an animal can lower blood pressure and spike endorphins... and I have read that animal therapy is even used in some hospitals. This is a simple example of our emotions having a physical effect on our body's physiology.
I know that when I 'will myself' to be calm, release worry, and 'relax into it' -- that the pain of the needle prick is lessened. I know that when I concentrate on the pain at physical therapy it hurts more -- and that if I can instead visualize my muscles responding to the stretch and scar tissue releasing -- instead of the 'pain' -- the hour passes faster. Yes - I am still sore... and my body has an actual physiological reaction -- but my pain is LESS because I don't dwell on it.
So -- yes -- I do believe that we can lessen our symptoms and pain by focusing elsewhere. Because thinking 'pain' signals our brains to send out adreneline and toxic chemicals that make us feel the pain more intensely.
Of course there are limits to this. I don't think we can spontaneously heal ourselves. Or at least I can't do that -- but I do know that if I 'look for' something to be wrong -- I sure as heck will find it... and that by perseravating over it, I can easily make any symptom worse.
I don't think I can will an amputated leg to grow back.
I do think I can will the pain down by notches -- and decrease pain by decreasing worry.
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Linda, I don't actually believe that people can worry themselves sick.
I do agree with you that being in control of yourself and your emotions can help you get through a serious illness.
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I know I have made myself nauseous with worry.
I know that I have had physical symptoms from panic attacks during my divorce (inability to breathe, racing heart, increased blood pressure) ... and that worry and depression depleted my appetite and made me physically lethargic... which increased my depression and inertia.
These are physical reactions to emotional state. The more worry -- the worse the symptoms.
Bio-feedback removes thought from pain by creating a new focus.
And placebos can actually cause some healing -- that is the power of the mind.
Yes?
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It depends on the person, and how much the person is in charge of his/her emotions. I already said that you can cope better if you work to maintain a good attitude. However, I do not believe that you can make femara side effects or cancer go away by willing it away.
My feet often hurt from the femara. If I shrug and go for a walk, the pain bothers me less, but the pain is there all the same.
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I beg to differ, Day, but though some of the side-effects are the loss of estrogen - it does not necessarily mean it is all of them. I had a notable difference in side-effects from one brand of letrozole to another - both had the same effect on estrogen but they had different "fillers" which can also affect your overall well-being. And tamoxifen almost killed me - I'm now technically regarded as "allergic" to it.
Linda - for the most part I agree with your statements regarding mental health affecting physical health, just as physical health will affect mental health.
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In my case 2-3 weeks. I began Femara 3 weeks ago today..taking it at night with a small dose of Ambien to sleep... I don't feel the joint pain unless I get up during the night so it is bearable. 3 days ago UTI symptoms began with no UTI bacteria present. My O has taken me off for 2 weeks to determine if Femara is the cause of the symptoms.
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carolmabry--I had UTI symptoms with no bacteria as well--it was the strangest thing--and very, very distracting to have. My family doc prescribed Oxybutinyn (for spasmodic baldder or something like that)--in any event it did the trick. I was very relieved.
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I'm not a doctor, and I don't even play one on TV. I have no experience with unicorns, either during bowel elimination or otherwise. From my own experience, however, I do know this--
We most certain can "worry ourselves sick." From short-term maladies (nausea/vomiting, headaches, an asthma attack) to more serious problems (heart disease, stroke), stress can be a killer.
My own 6-month waltz with Femara has included achy knees and hips, and the aches are considerably relieved with exercise and stretching. Oh, and the lady hair down there has become a bit sparse, but like who cares? My oncologist quoted a statistic regarding recurrance reduction to me sometime, and although I can't quote it right now, I'm pretty sure it was higher than 2.3%. But then everyone's different.
For me, it's "take Femara, take a walk, and thank God for modern science." I'm doing great and I'm thrilled to have yet another grenade to toss into this pit called breast cancer.
Maybe I'm just oblivious, though. I worked all through my TAC chemo, missing a day or two each round (felt like I had the flu without the cough and sore throat), went back to work three days after my lumpectomy/axillary node dissection and twelve days after my mastectomy. My husby says I'm a tough old bird, and he's probably right, but it's not bravado. I really felt, and do feel, OK.
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Over the last 4 months life on Femara has gotten better. I no longer have the severe knee, joint or feet pain. Hair is still thinning every day. But I'm used to that now. I try not to look at the amount of hair I clean out of my drains in my shower or my brush. If I wake up bald one day, it will be worth it to say I beat this damn disease in 5 yrs.
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Hi everyone....I have asked a few times here but no response really so I will ask once more.....lol....does anyone suffer from back pain now since starting Femara....my back hurts a lot and it shifts from top to bottom.....sometimes it's my ribs, sometimes it's
my muscles.....I think some of it is due to anxiety because when I take an anti-anxiety
med it helps a lot. Claritin also helps somewhat. My GP says my shoulder blades are full of knots (hope that's what it is) so I have started to have massage sessions....I've had one and will go for my second next week. I want to be on an anti-anxiety (low dose)
daily but my GP says they are addictive....I say...who cares, I need QOL ....never took any pills before BC but I want some QOL again......any comments ladies??????? -
Scottie I think a lot of that pain is due to muscle tension and for that I take extra magnesium or a powder called Ultra Muscle Ease. I don't know if you have same thing in the USA but the compound is used to ease muscle cramps and is made mainly of magnesium but is taken in water to make it easily absorbed. I take a teaspoon full per day in a large glass of water and it seams to take a lot of pain away all over. Massage is good as well but I think in combination they would work even better.
Love n hugs. Chrissy -
Hi Chrissy....thank you for responding.....you are wonderful at that....here's the thing....
I agree with you and to that end I started off at the drug store enquiring about muscle relaxants....the pharmacist told me they all contain an ingredient that conflicts with
my meds.....that being Zoloft and occasionally my anti-anxiety pill. How much Magnesium are you taking? I'm not sure about Ultra muscle ease....my guess is that even if we have it here, it will contain that ingredient that conflicts with my meds, but I will certainly check it out.....thank you Chrissy . -
Scottie I take a 600mg once a day. I don't take both the powder and the cap together it's an either or thing. If taken together it works like a laxative and gives me a good clean out.......sorry about TMI but I though you should know that it can effect you that way. I sure hope you can find what gives you comfort.
Love n hugs. Chrissy -
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Hi Day....knew I could rely on you also.....what is Flexeril?
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Linda, thanks for sharing your story. What a wonderful journey--literally and otherwise--you had with your Dad. I cared for my mom during her final months, and was diagnosed only a month after her death. I am grateful for the time we had together, but also grateful that she did not have to live through my diagnosis and treatment.
On the issue of positive thinking, I believe it's necessary, but not sufficient. "The Secret" is not so much about positive thinking as magical thinking. I don't believe someone can think away their cancer, or most other maladies. OTOH, cognitive therapy has shown that attitude adjustment can be as effective as antidepressants, and there are many other examples of how our thoughts can affect us physically.
Here is something I wrote about positive/magical thinking, in a non-cancer context: http://cronereport.com/2010/01/27/if-you-think-it-it-will-magically-happen/
One thing I've held on to through diagnosis, treatment, and beyond, is that every cancer and every cancer patient is different. I have had no joint pain from femara, yet I suffered much more fatigue and chemo brain than a lot of patients (sbelizabeth, I admire you being a "tough old bird"! I was more like a wounded sparrow, and still not back to full time work). It's been difficult to sort out what causes what...is this ongoing chemo fatigue? Femara side effect? Depression? Did I somehow develop ADD through all this? Or am I just plain lazy? Where positive thinking has helped me is in not beating myself up for whatever I'm going through...and beating myself up has been a lifetime pasttime. If cancer has given me one gift, it has been to accept what life gives me and who/what/how I am and not let it get me down. I've had to accept that I can't do what I used to do, and be positive about that. Which is a very different attitude that "I can do it!". I can't do it, not the way I used to do, but I can figure out what I can do now and be OK with it.
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Just came from the pharmacist and she reiterated the fact that due to my Zoloft, I cannot take any muscle relaxants....none....😪
I got some tyelenol with codeine, but wil talk to my GP about weaning off of Zoloft in order to take the muscle relaxants since he won't allow me to take the anti-anxiety daily.
Thanks Chrissy and Day for our help. Chrissy I have upped my Mg to 400 and wil start taking 600 later. -
Scottie- There are so many drugs that interact with Zoloft it's not even funny. I take glucosamine and 2 advil twice a day and that helps with my back pain and the few joint pains that i have every so often.
Funny story about my Zoloft experience. After I had my daughter back in 2001, I had major depression and was put on zoloft for it. Wasn't getting any sleep at night because of the depression and all the suicidal thoughts I had wasn't helping. I would go to work and be a complete zombie. One day I guess it was working I put my head down on my desk in between calls. I woke up 4 hours later drool all over my computer and desk. I asked my co-worker why she didn't wake me up and she said she tried but I was snoring so loud. She took all the calls for that 4 hours and lied to our boss everytime she called. ha
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Glad you have such a compassionate and caring co-worker to cover like that!
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Hi Scottiee,
Have you checked your Vit D3 levels? I have had terrible back pain on Femara, Oncologist suggested to take more pain pills, my Internist find out low D3, after taking this Vit the back pains decreased!
Best Usha
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Hi Slousha ....thank you for responding ....where was you back pain?....I take 3000 IU
a day, which I would think is more than enough, unless there is poor absorption. -
Chrisrenee....what a wonderful colleague you have....I think that's pretty rare these days.
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Hi,
I've got back and neck muscle spasms that started about a week after I started femara. Had the timing not coincided I think I might have been a bit more hysterical as the back and neck pain can be considerable. It is definitely muscular, hurts with certain movements. My wonderful GP told me that back pain that moves around and gets better is not the kind you worry about.
For those of you taking magnesium, does it make you constipated? Or could it be the Femara? Is this the SE flavor of the week, constipation? I'm doing all the right things, dietwise, to solve this. Any other suggestions?
Trying to stay positive. (Linda, nice story about your Dad.) My attitude is simple. Unless an SE is life threatening, I'm going to stay married to Femara. My onc says that its my best weapon vs BC (especially potent for ILC.) Though QOL is important, I'd rather try to learn to live w SE's than die of BC.
BC still terrifies me beyond almost any other eventuality. Think I've got PTSD from that initial shocking end to what was supposed to be a routine mammogram. I am doing everything I can to keep the disease at bay. Eating well, (organic; no pesticides, no hormones in food, low sugar, whole grain, lots of fruits and veggies, nuts and seeds, legumes) exercising an hour a day, at least thinking about lowering stress (HAH!)
Best wishes, Ladies, Shari
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Hi Scottie,
My ER was +100% therefore I was set on Femara, my terrible pains began two months after, mostly at night, I was awaken from pains along hip, spine, ribs - have to go up and to move – exercise to ease it. I’ll post you as PM the article about!
Greetings and Best wishes
Usha
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Usha....thank you very much....my pain is also along the spine and ribs.....I never had issues before starting on Letrozole....It's quite debilitating and very frustrating. Thank you again.
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Shari, I have been having probs with constipation since I started femara, and the magnesium is what will help you with that! I don't know if the femara is the problem because at the same time I started xgeva and calcium. It seems that eating the right things just doesn't seem to help and the mag really does. I take 500 mg. Also I learned on youtube how to massage my abdomen where the large intestine is and that helps too. Magnesium is really good for us.
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Oh and also Probiotics! Just started those a week ago and I have pooping big anacondas every day.
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Femara can and does constipate some people but the biggest offender is calcium. Magnesium taken is large enough quantities is very good for removing the cork and getting things back on a normal footing. Magnesium is also good as it works in conjunction with your Vit D to deposit the calcium circulating in your blood stream into the bones where it belongs rather than be excreted through your kidneys and thus causing kidney stones. All the vitamins that we take as supplements work together with our bodies to help us feel the best we possible can.
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I too have very little side effects - but only taking this drug since Sept 2012. I too would not want others to be scared of taking it.
perhaps I am lucky? No 'positive thinking' though.
It's just the way it is.
For that I am thankful.
I have every sympathy for those not as fortunate,
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HLB...cracking up over the anaconda poops. What a visual! Thanks for the laugh!
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Ditto on the probiotics and magnesium.
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Dear HLB,
Thanks for the visual. Had a good laugh! Anacondas! Something to aspire to.
I think you may want to look into whether or not calcium is causing the constipation, as ChrissyB says. Pre Femara, when I was on Tamoxifen, I started to take calcium as advised by practically everyone. Major traffic jams! Things unclogged as soon as I stopped the calcium. My onc team is big on trying to get vitamins as naturally as possible, i.e., through food. Healthier and more effective in many ways. Except for vitamin D (not as simple for a variety of reasons) I've been able to do this. I also didn't want to eat too many dairy products and found that there are many other good sources of calcium.
http://dairyfreecooking.about.com/od/dairyfreebasics/tp/CalciumFoods.htm
Recent blood tests showed a normal level of calcium and better than average bone density. So hope this is helpful.
Next project is to try to bring up my magnesium level through diet. Havn't been as successful with this in the last blood test. Was on the low end so am supplementing. For the curious, here are foods that are rich in magnesium.
Black beans
Broccoli
Halibut
Peanuts
Oysters
Scallop
Soy milk
Spinach
Tofu
Whole grains
Whole wheat breadSorry if this should be on the natural site. A bit new at this. Thanks for everything,
Shari
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Thanks Shari, yes I do believe its mostly if not all caused by the calcium. I have to take it because of being on Xgeva. I started with 1200 and cut it in half to 600 which really helped, and the mag and probiotics help even more. The xgeva takes the calciun from the blood and puts it into the bones, so we have to replace the blood calcium due to the risk of hypocalcemia. I have also been using magnesium chloride that comes in a spray bottle, spraying it under my arms. It works better than any deoderant!
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