FEMARA

peaches12

You're darn right, Tammy!

FairyDogMother

Lassie-Awesome!  Go Celebrate! 

So, I'm on 50,0000 IU of Vit D for 8 weeks.  Got to love the yellow pill.  I did start running again and it helps with the hip pain.  Also, seeing a chiro for the neurpathy from chemo. 

peaches12

fairy dog-  Would you let us know what your chiro says about neuropathy?

I take 50,000 IU Vit D once a week plus another 2000 IU daily the other 6 days of the week.  It just puts me in normal range for Vit D. I've been taking it for years and guess I always will.  Good luck. 

havehope

Hello

I will be starting Femara next week and I was wondering when is the best time to take it: morning, lunch or evening?

Also is it better before, during or after eating?

I like to have a glass of red wine in the late afternoon, early evening. Will I be still able to have that? 

Thank you.

lassie11

havehope - for sure carry on with your red wine!  There are so many studies that say whether wine is good for you or not that you choose the one that suits you and carry on.

Different people take the pill at different times. I took mine first thing in the morning before breakfast. That routine worked for me. Others take it later in the day. Do what suits you and change it if a situation arises and you think it might help.

Don't stress about possible side effects. Some will happen and some won't. Often whatever happens doesn't continue and your side effects change. I had trigger fingers at first but then never again.

I can't decide if it's wishful thinking or reality, but it seems to me that one month after finishing five years of Femara I might have a wee bit more energy and maybe a bit less joint bother. If it's just wishful thinking, that's OK too.

Tomboy

i am sure the benefits of your red wine would be ok, many women do. i take my femara before bed. so i will sleep through most of the side effects! good luck to you, nice to meet you, and see you around!

Vicks1960

Havehope,

I take Letrozole (generic for Femara) in the morning.  Have had a few SE's but livable.  I have been on it since Nov.2011.

Vickie

honeybair

Havehope, take mine at night with other nighttime meds.  Few side effects for me except for some morning stiffness and virtually no hot flashes.Saw my MO yesterday and she told me that taking that drug was the most important thing I could do to prevent a recurrence. May you have minimal side effects.

buckhold

Hi there, I started femara nearly 3 years ago, took it every morning, no side effects for 7 months then bone pain, exhaustion all started. Seems I had so much estrogen going round my body it took 6 months to lower it. I tried taking femara at night but no difference. I have metastatic breast cancer so no question of stopping. It has caused osteoporosis so I take prescription calcium for that. I do feel like a 90 year old but have adjusted my life accordingly. On the bright side the cancer has gone right down to nothing and I just hope and pray this lasts. Doc tells me some people have held cancer back for 10 years with femara and still going strong.love to all you brave ladies out there.

chrissyb

Hi Buckhold, I have been stage IV since May 2009 and started my treatment on Arimidex.  This made me feel like I wanted to roll up and just die the SE were so bad and after fifteen months and a small progression my doc changed me to Femara.  I am presently NED and have been that way for at least four years now.

It is possible to control the cancer for a long time on all of the AI's.........I know a lady who is 11 years NED on Femara so have a heap of hope for your future!

Love n hugs.   Chrissy

Tomboy

how are your feet chrissy? it's just that my feet hurt so badly, that it makes me not want to be on 'em at all. it feels like bones are broken. i have been waiting a month for that to go away, and the next thing to start! i neeeeeed my feet, i was an active girl. i just did get back from a 5 day trip to Sequoia National Park, in spite of foot pain, i walked every where. Amazing. But, after the first night, i left the femara in the bottle. i will take it tonight though. my feet feel a little better. it is just that i was in great shape, thin and strong, i did construction, and i also have put on 20 pounds at least, and that is on near starvation diet.

enjoyevrymoment

Kathec,  Good for you for walking around Sequoia, how beautiful!  Way to make it work for you!  I have been able to hold it down to 6 pounds up in 6 months but it is 1200 calories a day to keep the wolves at bay; when I go over that for more than a day it isn't pretty    I was overweight to start with so perhaps that is why I have not gained more, and of course I am only on it less time than many of you.

Hang in there Chrissy and Buckhold!  I too am grateful to have Femara when being estrogen positive.  

chrissyb

Kath my feet were really sore particularly after having both knees replaced.  I started taking notice of the way I walk and found that I was rolling my feet inward which made everything out of kilter.  I got myself a pair of well constructed shoes that support my foot and then I bought a set of supportive sport inner soles.........the combination felt really weird for a while but in a short time my feet felt great.  I continue to wear this combination and find I have little or no foot pain.  Just to qualify, I have really bad arthritis in every joint of my feet as well as gout so they were often painful without the addition of Femara.

 I have managed to lose 26 pounds over the last two years........I was overweight to start but add the AI's and I ballooned!  Before I had the knee replacements I decided I needed to lose some of that flab and put myself on a healthy eating plan that I did for myself.....I did not count calories and still don't.  My DH joined me and has managed to lose double what I have.  The secret was eating every two hours with no bread or bread products and no butter or margarine.  Plenty of veg and protein.

It is always a battle to keep our weight stable while taking the AI's as weight gain is a definite SE.  Hang in there girls as there really is hope.

Love n hugs.   Chrissy

enjoyevrymoment

Thanks Chrissy that is very encouraging!  I too think there is something wacky with eating carbs, once I start it is like a runaway freight train for me and I never had that problem before so I am not sure if it is Femara or what but as long as I stay away from em for the most part then things are good

chrissyb

Enjoyeverymoment, me and white bread just don't mix at all!  I love, love, love crusty white bread with lashings of butter but that is my worst enemy so the more I avoid the better I am........but I have a friend who visits from the city and he always bring fresh baked crusty white bread with him because he know how much I love it.......needless to say for the weekend he is here I eat more than I should but I do enjoy every mouthfull!.....lol.   Thank goodness he doesn't visit too often.....lol.

Love n hugs.   Chrissy

peaches12

Well, I bragged too quickly how great my bone scans had been. 😥  It had been a couple of years since my last one and I have been on Letrozole now for 5 months.  Had one today and it was really bad and the doc said this is what happens with no estrogen from hormones like Letrozole and it will only get worse.  I will now be getting an injection of Prolia every 6 months to strengthen bones and hopefully prevent further thinning.   Has anyone here been on Prolia?  

Tomboy

i have because after chemo, i was barely osteopoenic. after 6 months of arimidex, 4 mos of tamoxifen, and 3 months of femara, i was full on on osteoporotic. i just had my second shot of prolia, you get it every 6 months, it has improved it mostly back up into osteopoenia range. one point is still subpar, and one point is normal.so i am hoping the second shot has made it even better, and i have ramped up exercise, and also leafy dark greens and kefir for the protein. i am mostly veggie.

Momine

Peaches, how bad is it? I mean what are your numbers?

peaches12

Thanks for the quick replies, Kathec and  Momine.  There are so many numbers in this long report it would be easier to decipher if it was less detailed.  Suffice it to say all areas scanned were osteopenic and the trend line was down 12% overall since my last scan and would only get worse taking Letrozole for 5 years.  Not surprising after all the chemo, steroids, 5 months of Letrozole, age 74, and I am a smoker.   I also have been hypothyroid for years which is another factor contributing to osteopenia.  It is my endocronologist who does my bone scans and treatment.  Of most concern to him and me is that my probability of a major fracture is 11.1% and 3.2% for a hip fracture.  Continuing to take Letrozole will of course increase this probability without treatment, so I am all for being proactive.  I've taken Vit D for years and will now add Calcium, too.

Kathec, have you had any side effects from the Prolia injection?  I took Fosamax years ago for about a year (gynocologist prescribed it for seniors).  I hated it, didn't really need it, wasn't going to go through that again, so I chose the Prolia option.

Cdvee

Has anyone had elevated blood sugar levels on Letrozole? Just had blood work done and was 7.2 which they said was type 2 diabetes. Wondering if letrozole might be responsible for the higher level? I've been on Letrozole for 9.5 months.

Tomboy

 hey cdvee,  i got high cholesterol from femara, but i know at my tx center they are doing a metabolic disorder study on women after treatment, and diabetes is also a metabolic disorder. do you have an endocrinologist?

prolia, i couldnt tell a thing, no different than the aches and pains i already have from femara, it astounds me how much i hurt sometimes. i smoke too, not much, but that seems like quite the % drop, peaches.

peaches12

Yes, it was a big drop, Kathec.  Though I have additional risk factors which could contribute to it and several years had passed since my last scan, since I never had had anything but excellent scans before my endo had to contribute the major portion of the change to Letrozole and possibly the steroids I took during chemo.  Those were the only new drugs I had taken since the last scan and both, especially Letrozole, are known to be major reasons for bone loss.   Hopefully the prolia will do its job.  Medicare only allows a bone scan every 2 years, so it will be awhile till I know.  

Sorry, but can't help you on the cholesterol/Letrolzole connection.  I haven't heard that mentioned before.

Vicks1960

If you Google, possible side effects of Femara (Letrozole) you will see that elevated cholesterol counts are listed there.  Some of us get few side effects from the drug and others have a lot and a few don't have any.  Guess that it why they say "possible"

Vickie

MargoChanning

hi all, I had osteoporosis before starting Letrozole; I'd taken myself off Estradiol, which had been prescribed for osteopenia and other menopausal problems, the day I was diagnosed, as I knew there could be a BC connection and my cancer turned out to be hormone positive.  Oh well!  So I had a scan a month after starting Letrozole, which was 9 months without Estradiol.  Osteoporosis in the lower spine, saw a specialist who said the loss was not rapid, gave me a choice of different treatments and I chose Boniva.  Took it once, developed strong and chronic back, neck and head pain that lasted several months.  Also made my teeth throb (I have a hx of dental trauma, which I later learned from my dentist made me vulnerable to the dental problems associated with biphosphonates).  Never took Boniva again, and am now taking an assortment of OTC supplements I read about in a paper published by some Canadian university researchers, and will do a bone scan after a year or so and see how it is working.  In the meantime I also got a weighted vest which has been too hot to wear recently (smile) and one of those small trampolines known as urban rebounders which I try to bounce on when I get home from work after my 12 hour work day (long commutes).

I also have "elevated" cholesterol, but my internist is not overly concerned; my cholesterol went back up to what it was post menopause but pre-estrogen, which had brought it back down to below 200.  It runs in my family, but I'm also semi-active and a runner, although I don't run as much as I used to - did marathons throughout my 40's.  He says since I have decades of activity and am still trying to stay active, he's okay.  But I have made dietary changes and am not indulging in sweets as much as I did when I was running 50 miles a week.

I've read a number of research articles on Pubmed and the like about the effect of aromatase inhibitors and my conclusion is that they speed up the aging process that is associated with declining levels of estrogen.  When you read about the myriad functions that estrogen is involved with - vasodilation, maintaining Ph levels in the bladder/urethra, synovial fluid in the joints, immune system, bone cell turnover - it's not surprising that the profound loss of estrogen associated with AI's brings on so many maladies.  The big concern I have is that, relatively speaking, the use of this class of drug is fairly recent, and there are no long term studies to see what serious problems may be associated.  I don't doubt this is a wonder drug for inhibiting hormone positive cancers, particularly for those with advanced ca, but I still would like to see some serious studies on what damage may be done and what could possibly be done to prevent or slow that down.  I would hate to think I'm preventing a recurrence but I'm speeding towards dementia which will make me incapable of supporting myself, as I have all my adult life.

Tomboy

Just say no! to dementia. i agree with you on that they dont know enough about the long term effects of the A.I.s. and yeah, the accelerated aging thing sucks. i was in really good shape and very strong, all my life i have lifted weight and ran everywhere! i was an active girl! i wonder if it just adds twenty years too fast.

kmpod

Margo, I have many of the same concerns that you do about the long term use of AI's. I have a strong history of dementia in the females on my maternal side. I really do worry that I'm staving off the cancer only to hasten the development of dementia.

I will do the 5 years but I will have to have very strong evidence of benefit before consider taking it any longer than that.

Tomboy

kmpod kathy? have you talked to your oncs' concerning your apprehensions about the a.i.'s and dementia in your family? i am going to try and find some info on that. its funny, whenever i ask any of my docs about the problems, they all say, "well, you ARE getting older!!" YAH!, but i wasn't getting older that quickly before!  i am beginning to think anyone who works in the field of cancer should have to do a round or two of chemo or six months or so of estrogen or testosterone deprivation, just so they would have a little more comprehension or understanding of what we go through!

MargoChanning

No history of dementia or Alzheimer's on either side, but the men all died off by their early 80's from heart disease or cancer (bad diet/smoking) and the few women who lived into their 90's may have had dementia but I was not aware, they were not close to the family, so to speak.  My parents' illnesses in their senior years were pretty much all lifestyle related (poor choices) with no cancer so I thought I was going to easily sail into my senior years since I had been running since my early 30's with no smoking or alcohol and good diet.  The joke sure was on me in that category, getting BC at 61.  But, heck, I'm still running when I can, I just have to adjust to far less energy and far more joint pain.

MargoChanning

Btw, I don't know if any of you have ever perused the weight lifter/body builder blogs on the topic of AI's, but it is immensely instructive.  These people (mostly younger men) really know their P's and Q's about the effects of AI's and it's interesting to read how they caution each other to not stay on them longer than a few months before a competition because of concerns of long term damage to their joints, immune system and libido, to name a few of the areas that they all mention problems with when they start taking AI's.

fizzdon52

I'm glad I have the opportunity to take Femara?. I thank goodness every day that we have this drug to stave off this horrible disease. Sure I have side effects, but I am almost grateful for them, to me they say the drug is working and hopefully keeping cancer at bay. I am also giving myself monthly Zoladex injections to stop my hormones from working. When I get hot flushes I say to myself that's great, the Zoladex is working and I am not getting horrible periods any more either. It's funny really I've always been a glass half full person and thought side effects would be a problem for me. I don't know if it's my attitude or if I am really lucky to have minimal side effects.