FEMARA

Eph3_12

Garden, Have you done a Femara/Letrozole vacation? I can't remember who has & who hasn't.  I did it, without running thru the onc, for 6 weeks at the of 2010 (which was 1 year from starting the pill) When I went back on it on Jan 1, '11, my SE were less & have remained at bay for the most part.  Another gal who started the lovely pill at approx the same time as me has been taking just a 1/2 pill each day instead of a full pill.  She indicates that has helped some with her SE.  You must do what you must, but I vote on the side of whatever can be done that may help, go for it!!

gardengumby

My weight is too high.  Currently I'm taking a bunch of supplements including curcumin, glucosamine, chondroitin, ginger, indole-3-carbinol, boswellia, magnesium, coQ10, cinnamon and willow bark - there could be a couple others I don't recall.  When I forget to take them, the aching gets pretty unbearable, so I know they are helping - just maybe not enough anymore.  I don't eat wheat or dairy or pork and think I'm going to have to add corn to the list, as I had two corn tortillas yesterday and am hurting more today.  I was exercising regularly, but when we moved it added 30 minutes to my commute (each way).  That doesn't sound like a lot, but an extra hour a day ate up what time I had for exercising - so now the only exercise I'm getting is walking to the train (about 1/2 mile) in the evening - and walking up and down stairs (oh so painful) in the townhouse we're renting.  I'm retiring in 3 months and 2 days (but who's counting...  ), and am REALLY looking forward to have more time to sleep and exercise.

Lily - my MO does NOT want me to take a break.  She was quite emphatic about it.  I had no radiation, nor chemo so am not willing to buck her recommendation regarding hormonal therapy.  I appreciate the fact that  your doctor said it's fine, but.. well... he's not my doctor.

She (my MO) has told me to go swimming some each day - but there are no places around where I feel comfortable, so I don't go. 

I'm bummed right now because I feel so pissy - I don't think there's much of anything I can do that I'm not already doing, but I do need a couple pats on the head... 

Momine

Gumby, you can have as many pats on the head as you need. You are definitely a good doggie

In my experience, the exercise is absolutely key. It hurts the first 10-15 minutes, but then you start feeling immensely better, and if you get into a decent routine, you can end up feeling pretty good most of the time. So, it sounds like you have to grit your teeth for the next 3 months, then make exercise an absolute priority once you retire.

Have you thought of getting a treadmill?

Lily55

I find all this conflicting info between Oncs very confusing.....

gardengumby

I've got a treadmill..... One of the problems is that I start work at 0630, which means I must be out of the house by about 0515.  I get up at 5:00, get home from work about 5:30PM and try to be in bed by 8:30PM.  There just aren't enough hours in the day.  It's better now than it was when we were also fitting in house hunting, but I just cannot bring myself to get up before 5 and by the time I get home, I'm whipped.

Lily - I agree, it is most confusing.  But since my doctor insists that I not take a vacation from the drug, I feel that it's important for me to follow her guidance.

GrandmaV

omega 3 fish oil 6grams a day has really helped me.  Hardly any joint pain anymore, but still stiff in the mornings.

SusanHG123

As a nurse I like research. Even when numbers are not good. Femara was considered a miracle drug-like Herceptin. Drop in risk of death something like 20% and reduction in risk of recurrence about the same (don't quote on numbers--chemo brain trumps). But risk/benefit ratio? How does the patient feel? Remove patient and insert your name. How do you feel? Is it adding or taking away from quality of life. What is your risk of recurrence? WE are in charge of our health care and it is OUR choice how our health care will continue.

I let my MO and RO talk me into radiation. Despite knowing the radiation would decrease my risk of recurrence by 3%/year/5 years AND increase my risk of lymphedema by 25%. I was already at high risk for lymph-edema due to having 17 axillary nodes removed and 8 nodes in my breast. Within 10 days of finishing radiation my arm circumference began to slightly increase. 

I am having terrible SE to femara. I feel as if I have aged 10 years in the past 3 months and that is on top of the 10 years I feel like I aged since diagnosis last June. I can hardly walk due to joint pain and being so darn short of breath due to heart issues from Herceptin or adriamycin. 

As I told my MO about a month ago "I was fine until I let you people be in charge of me. That is changing. I am now in charge. You have to write the orders. But I am in charge."

Gardengumby-stand as tall as you can and take charge. I told my July 2012 chemo group last fall we needed to meet someplace this July to celebrate. Most of them completed in the fall and faded away. Maybe some of us need to meet someplace with hot and cold running maid service and cabana boys. I may be old but I am not dead. 

Much love.

susan 

gardengumby

Bless you all.

GrsndmaV I will try adding the fish oil.

Susan I must admit that I feel I have little if any qol right now. Yet I am far too fearful of the disease to stop taking this beastly drug.. at least not yet. I saw my grandmother and aunt and a friend all die of it and though I might do so as well, I do hope to put it off as long as possible!

I do though believe that it's important to have as good and happy a life as possible while still here which is the main reason I am retiring this fall.



Again, bless you all. Thanks so much for the encouragement which on occasion I badly need!

artsee

Gum by....of course you shouldn't go off of the drug. I never considered it. I knew there was an end of the tunnel and did what I had to do. However I did add a drug called Amitrytoline. I have several good friends that have Fibromyalgia and they take this for their pain. It is an antidepressent that works for chronic pain also. I asked my Dr. If I could try it and he said it would not hurt me. It worked wonders and in case you are suffering from some depression it works for that too. Most of us have either anxiety or depression from this hellish journey we've been handed. Anyway I'm 5 1/2 years out, get a monthly therapeutic massage and currently my body feels fantastic. Praying that all states well. I have taken Omega 3 for a long time too. I don't take too much of Aleve, because my stomach doesn't do well with those drugs. Retirement will be a plus for you body. Right now it sounds like it's tighter than a drum....with your scedaul. Good luck and keep us posted how you are doing.:-) :-)

SusanHG123

Garden-in addition to one of the tryptolines are you on Effexor ER? It is an antidepressant and off label helps with the hot flashes. That is one SE I have--not not near as often as many speak of suffering. I started Effexor EX about 4 months prior to Femara and worked the dosage slowly to the amount needed. And--an antidepressant is a good thing. There is not an approved therapeutic massage where I live-but I go to a person trained in cancer massage therapy when I can justify the expense. 

Love to each

jacee

I am one who started taking 1/2 a pill about 6 months in. My s/e's improved greatly. I now have 17 months to go. Please at least try this if you are considering stopping the drug altogether. The Novartis trials show there is complete estrogen suppression at doses as small as .5 mg a day. Taking half a pill a day, you are still getting more than double that at 1.25 mg a day. While it may not be ideal, hopefully it is better than stopping altogether. ( they are a pain to cut in half though). Hang in there ladies!

gardengumby

I get a massage every other week now.  The first one I had I cried almost the entire time it hurt so bad, but the last one I actually fell asleep twice, so either she's getting better or my body is, and I think it's the body...

I won't stop taking the drug, as even if I wanted to, hubby would make certain I didn't.  I'll talk to my dr about the Amitrytoline.  I probably won't investigate the Effexor, as hot flashes have never bothered me.  I cannot do Aleve or aspirin or ibuprofen.  I can (and do) take tylenol, but I can only take it in the evening as it puts me to sleep - I also take willow bark, which is the natural form of aspirin.  Regular aspirin makes my esophagus swell, and I cannot swallow, but the willow bark doesn't. 

Jacee, if things don't get better, I'll talk to my doc about doing a half dose.  The last time I saw her she implied that the dosage is probably higher than necessary which of course does not mean that she'll want me to reduce it, but it doesn't hurt to talk to her about it.

I got a lot of sleep last night (was in bed by 7:30) and started the fish oil this morning.  Have I mentioned how much I'm looking for to retirement????  So I can sleep as much as my body wants!!!

artsee

After 43 years in the hairdressing business I really thought I'd die without that in my life.

Retirement is a new life and I love the mornings of drinking my cup of coffee and reading the paper

without having to run around like a chicken to get to work on time. Did I say that at 9:30 sometimes my Jami's are still on? Oh, must have forgotten that....:) Love it!!!

gardengumby

so Artsee - you've been off Femara about 3 months, now, right?  How did it go?  Is there light at the end of this tunnel?  (I can hardly wait until retirement!)  We're going to be poor as church mice for awhile, but I can be as thrifty as anyone when the need is there - and my body needs retirement!!!

milehighgirl

Hi ladies.  New to this thread.

I was on Femara from Aug. 2009-Jan. 2013.  Was switched to another drug but put back on the Femara in June.  I also started Faslodex and Xgeva in June.  The first go round, I had few side effects on Femara with the exception of joint/bone pain which was tolerable.

About three weeks ago, I started having shortness of breath.  Kind of came on suddenly one afternoon.  I assumed it was the Xgeva or Faslodex but after reading here, I'm wondering if it's the Femara. 

Jaycee, when you cut back to 1/2 dose, you said your SE's diminished.  Which SE'S did you have?  And for those of you with shortness of breath, has it gone away or does it continue?  I'm heading back in Monday for more dreaded scans to rule out heart and lungs.  Just had a full set of scans 6-weeks ago and lungs were clear.

Thanks all.

Sue

SusanHG123

Hi MileHigh,

My docs (MO and cardiologist) tell me my SOB is due to my ejection fraction going from 66% to 50% from January to April. Probably so. What they can't stop bickering about is cause--Herceptin versus Adriamycin. My answer no matter. Lets do another ECHO (per cardiologist) or MUGA (per MO) and check the number. 

What other drugs are you on now or were you on recently. 

Best of luck my friend.

susan golden

milehighgirl

Susan I am also on Faslodex and Xgeva, both of which list SOB as SE.  I guess I didn't realize that it's also a SE for Femara as I'd been on it before but with different SE's.

Looking forward to hearing from others.  I'm going to stop the Femara for a few days and see if it goes away, at which point I'll talk to the doc about cutting back the dose.

Sue

gardengumby

milehighgirl - I love your avatar!  I have shortness of breath, but don't contribute it to Femara, as I'm asthmatic and have been my entire life.  As long as I avoid certain allergens (mold, wheat, pollen, cats, dogs, etc etc etc) I am OK.  I'm also badly out of shape, though, as I haven't been exercising - so that contributes to shortness of breath as well.

artsee

Gum by..yes its been since May that I'm off. It went pretty good. Right after I think I had like with drawl, but then it got better and the aches in the joints went away. I figured it would take a couple of months.

ktab96

I have been on letrozole (Femeara generic) for two years.  I was told to help mitigate side effects (joint muscle pain and muscle atrophy) I would have to exercise.   I think this has help me tremendously as my side effects have been minimal.  When I first started taking Letrozole, I did experience fatigue and some warm surges after a month.  There after, I experienced some knee and elbow joint pain.  This year I was diagnosed with osteoarthritis in my knees and ankes but its not debilitating.  This week I will go for my two Dexi scan to see how much deterioration has taken place.  My bones were in extremely good shape when I started.  I think over all I am doing very well on letrozole but I do feel it speeds up the body aging process.  If this is what i have to do to help prevent a BC reoccurance then so be it.

I had IDC Stage 1 Grade 3 BC ER+ PR+ HER2 Neg and negative nodes.  I had a lumpectomy and radiation.  Based upon my Onco Score and agreeing to take Letrozole my reoccurance score is 9% so chemo was not necessary.  I was told if I was HER2+ and or positive nodes, then I would have had to have chemo/herceptin.

artsee

Ktab.....our DX is exactly the same. You must of had a much better Onco score........I had chemo.

Lily55

I did four hours of zumba plus walking on other days every week to cope with femara but got to point where i could not even get out of bed or a chair without so much stiffness i almost fell over, now on exemestane and hoping its better

gardengumby

filled my prescription at Costco, yesterday.  3 month supply, no insurance, $23 and some odd cents. 

sbab49

Still trying to get past the brain block on femara/letrozole. The fear of living in constant pain and the fear of the cancer returning is numbing my brain. I applaude all you brave ladies who have just taken the bull by the horns and did what needed to be done. Praying that whatever final choice I come to is the right one.

chrissyb

Sbab, you may be one of the lucky ones like me who have very little problem with this medication and what SEs I have are minimal and easily dealt with.



Convincing yourself that you will suffer with the medication is really doing yourself a very big disservice and your fear will only grow the longer you put it off. Forget about what may or may not happen, just know that by taking that little pill you are putting a powerful medication into preventing this dreadful disease from having its way.



Love n UBS. Chrissy

sbab49

Haven't informed MO that I have not started Letrozole yet but did see RO for follow up. Breast has been extremely painful since Rads (internal brachytherapy). Saw GP and MO and both said breast looked very red but didn't think it was infected (said it was probably just red from rads). When I saw RO he said "wow that looks infected". Finally someone agreed with me. Started antibiotics and breast is looking and feeling much better. He said he wasn't concerned about not taking letrozole at this point until done with antibiotics. Maybe once this is all past I can make a better decision about taking the letrozole, but those bottles just sit there tormenting me. I did finally bury them out of sight but not out of mind.

chrissyb

Oh sbab that must be so painful! I'm so glad that the RO agreed with you and has given you some antibiotics so you can get it under control. I do understand your reason for not wanting to take the Letrozole as yet but please try not to make it a focus of your days.........you have enough to deal with right now and getting rid of infection is so important as your immune system is compromised. Once that is gone you will be able to look at the big picture with a clearer mind.



I hope your fear doesn't hold you back.



Love n hugs. Chrissy

gardengumby

sbab - don't worry about the pain - really.  Most of the people who post on this thread are the ones who problems.  There are zillions of women who take this stuff, and a lot never have any SE's.  I think it's a lot like anything that is nervous making.  Just hold your nose and do it.  Also, it's just achiness kind of pain.  It's not sharp or unmanageable or anything like that.  You'll be fine.

But, like Crissy said, first get the infection out of the way, let your body recover, and then just start taking it.  Don't let your fear of the pill stop you from taking something so important.

Mimi8

Thank all of you for your input on side effects while taking Femara. I have been on (and off of it taking a few weeks off here and there) for almost a year.



Has anybody had vision problems like vertigo while taking Femara?

Just recently, I had severe head pain on one side of my head causing my GP to order both an X-ray of my skull and an MRI of my head. Very scary, but no mets were found and no reason for the sudden pain. Now comes the vertigo. What causes this? Does anybody know?

Hugs,

Mimi8

chrissyb

Mimi, I did have this SE for a little while and it was very disturbing while it was present but thank goodness it only lasted for a few weeks and then disappeared as quickly as it came. I also had the severe headaches and like you had the head CT done just to make sure there was nothing there to cause the vertigo and headaches.



Vertigo is caused by an interruption of the tiny hairs within the inner ear such as an excess of fluid or not enough fluid. Once the balance has bed restored within the inner ear the sypmtom disappears. Femara is known to dry everything out and that may just include the balance portion of the inner ear.



Hope your comes good soon.



Love n hugs. Chrissy