FEMARA
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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?0 -
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!!!!!!!!!!!!!!!0
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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. 0
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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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