I know how you all feel, I have painful joints and I also sometimes hate that little yellow pill. It is now over a year since I was diagnosed WLE then 6 lymph nodes removed for testing as cells were grade 3. It seems a life time away since I had 6 months FEC and 6 weeks radiotheraphy, did’t think I would see this day. Had my first mammogram last month and no signs of any recurrance so the Femara must be doing something.
It is now 9 months since I started Femara and I can’t say it is easy but I just think I am lucky to be here and it is a small price to pay.
Let’s all hang in there together and beat this disease. Good luck to everyone.
Love Anne xx
Hi Ladies, I think I have been on Femara for about 16 months now. I take so many tablets that I do not know which tablet causes what! But it seems to be doing its job. I return to see my Oncologist in April and I put my faith in her when she suggests that she change my hormone tablets. I had a problem with my left leg for a while. It lasts for a month roughly then disappears…then returns again. I don’t know what is going on there but a recent MRI Scan didn’t show up anything new. Hope you are all managing with your annoying side effects. Long may they continue to work for you. Love Val
I have been on Femara for 7 months now, at first i had quite a lot of side effects, nausea and quite a lot of aches particularly in my hands and feet, these have gradually subsided although i still get stiffness in my joints and a few aches and pains, they are certainly managable. My main problem now is fatigue and i wondered if anyone else has had this, i only work 4 mornings a week till 2pm, but by the time i get home i am too tired to do anything, i have to go to bed at about 8pm because i cant stay awake, i actually feel more tired now than when i was having radiotherapy. Is anyone else like this?.
Hello suffolkgirl, I suffer from fatigue a lot of the time and I don’t go to work! Everything is such an effort for me. My head wants to do stuff but my body disagrees! Have you spoken to your GP or Specialist about this? Perhaps a blood test could rule out or indicate something…perhaps your iron level is low for example. I am sure you will get more replies about this from other ladies a s fatigue is quite a common problem. But we are all different. I would start with a visit to my GP. Love Val
I also suffer from fatigue, mainly muscle fatigue. It is my worst side effect. I have been taking Femara and having Zoladex injections for 7 months. It improved at bit whilst on it, then I had more surgery (MX + reconstruction), which knocked me back. I am gradually getting more stamina and hoping to return to work part-time in about a month. But we shall see.
Hello Scottishlass thankyou for replying, i havent been to my GP, wasnt really sure whether to wait till my next hospital appointment in may and mention it then. Dont want to really bother the doctor with it if it is just a standard side effect.
I to suffer from fatigue a lot of the time to. I work 35 hours a week in a very busy secondary school. By the time Friday comes some weeks I am exhausted. Like Scottishlass my head wants to do things but my body doesn’t, butIi try to keep going on.
I know what you mean about wanting to fall asleep at 8pm I feel the same. I have been on Femara for 9 months and also feel my symptoms are getting less.
I suppose this is something we have to put up with or change to a different tablet. I had my first mammogram since diagnosed and it is clear so the little yellow pill must be doing it’s job.
Hi all, I have been on femara for 3 months and to begin with I was very very thirsty but that has gone now. I had a lot of muscle fatigue but someone told me that this was in part due to the steroids I had during chemo. That has got better aswell but the joint pains and stiffness is awful. I am determined not to stop taking it but the thought of living like this makes me very worried. If I move around its ok its when I stop moving for even half an hour that the pains get so bad, mainly in my hps, fingers, ankles and feet. Hips the worst and seems to be getting worse. Hot flushes aren’t so much of a problem and haven’t had other symptoms, we seem to all take it a bit differently. I tried ametryptolin and think it helped a bit so going to try it again. I am hoping the symptoms will get better over time, the eternal optimist!!! Any help re supplements etc would be very gratefully received. love to you all T xxx
Hi This joint pain is very odd. so variable between people and it comes and goes for individuals too. Too Femara for 4 month beginning of last year, didnt have any SE at all. restarted in Nov and the joint pains kicked in over Christmas, and were getting worse , getting a bit panicky, but these last couple of weeks, a huge change - not so bad. but then had a fuzzy head sort of headache for a week and that still comes and goes . aaagh , always something. Also getting very dry eyes when fall asleep - try not to in the day ! am using eye drops from Boots, before bed which help. but most mornings cant one eye for a little while, the eye lid is really stuck , scary. In the scheme of things , not too much to worry about, getting shorter and osteoporosis more of a worry. All stemming from wretched C . Please let us know how your joint pains go, hope they diminish as , touch wood, mine have . Kirtsy
Will do, the stiffness feels like my body is swollen but it clearly isn’t. I have started dancing and horse riding again, which considering my 90 yr old body is a bit of a hoot! No balance, numb feet, creaky stiff joints and a wig that keeps slipping now hair coming back!!! That and a false boob thats never keen to stay in one place ha ha!! I am every dance and horse instructor’s nightmare! Still no knackers yard for me, no sir -ry!! xxx
Yes , I think the only answer to to try to keep going , cos as soon as I sit down I know without doubt that the stiffness will kick in and trying to get up , I could do with a resident fork lift !
I walk a lot every morning without fail with my dog over quite rough uphill terrain , do pilates and try to get to "bums and tums " , but my soon to be 60 year old body can feel like 90 by the evening .
Thankfully the diarohea is usually over by about 7.30 in the morning , but no way can I go out until I´ve "been ".
I fall asleep most evenings and miss any television I may have wanted to watch , and as has been said , it´s not just tiredness , it´s actual fatigue , as if everything is draining out of my body ,and it´s just closing down on its own violation . I put that down to the gabapentin , but perhaps it´s the Femara .
i´m coming up to my first year on it , and I have to be realistic and say that although the joint pains may be slightly less , the diarohea is still as bad , the hot flushes are the worst , another four years of those fills me with dread .
However , so long as the rest of me stays reasonable , then I will stick with it , but , if my liver gets worse and the results from the cardio tests are bad , plus the normal chloresterol and blood pressure being high , then that would make me think again , long and hard . I´m just praying the these results will come back within safe margins , won´t know until end of may .
Always something to worry about is´nt there . But I´m still here to worry , so thats a good thing!!
Kris
I’ve just joined this forum. I began taking Femara 5 weeks ago. Lots of side-effects. Tolerable so far,
but it is so reassuring to have others to ‘talk’ to. I haven’t had surgery yet- waiting to see if these shrink my tumour somewhat. I am exhausted, but possibly it is also due to the emotion involved in all of this. I was only diagnosed on New Year’s Eve. Before I found this forum I had only read American chat, and this makes me realise how stoical we Brits are in comparison (o.k., a generalisation). I guess I have to look forward to other se s in the future, but having all of your input does help. Thank you.
Welcome to the forum, sorry you have had to join us but you will find lots of help and support here. I hope you don’t get any more side effects but if you need any advice this is the place to come.
Look forward to hearing from you, and if there is anything i can help you with please let me know.
Hi Helen
I’ve heard good reports of shrinkage for patients such as yourself. Hope you do well with Femara and the rest of your treatment.
As you may know, we women with hormone-responsive bc can take Femara (letrozole) for 3 reasons:
(a) to shrink tumour before surgery;
(b) after surgery, chemo, rads etc. of primary bc, to help prevent recurrence; and
(c) for secondary bc, to control mets and prevent further spread.
I’m a (c), Femara was my first treatment and it gave me 3 good years.
Thank you for the warm welcome.
I haven’t had time to find the American website but will look into that.
I work freelance and am whacked, but happy to be busy. Is anybody else involved in the ‘Neocent’ trial? I am, and it would be interesting to compare notes. In the Oncology Dept I go to they seem to enjoy keeping you in the dark. It sounds like a long haul, so good to have experienced ‘sisters’ to turn to. Something else I read yesterday- again, an American website, I think it was breastcancer.org where they intimated that those who get joint pain are the most likely to benefit from the treatment! maybe a bit like mummy telling you you’ll have curly hair if you eat your crusts, but who knows?
Can I please join in, have read the posts with interest as I started Femara one week ago - so far so good with no obvious side effects - probably too soon to tell. I was taken off Tamoxifen in October 2010 when my BC diagnosed in 2008 recurred - Onc decided that Tamoxifen had not worked (glad he thinks 5 lumpectomies, Chemo, rads and Herceptin did lol!). I had a mx and recon 10 weeks ago.
Hi Val - long time no see - hope to see you soon, glad to hear that all was well with MRI scan and hope all goes well with your appt this month.
just been reading your posts with interest. I have completed 4 FEC, just started 4 TAX, 12 months Herceptin scheme, RADS and then Tamoxifen for 5 years. I had a lumpectomy, 1.3mm, clear margins, no lymph nodes involved, my lump was prog.+7, Estrog +8, Her2+++. So my question is, what is the difference between femara and tamoxifen? Is one better than the other for certain types? I have never heard of Femara, should I be asking about it with my onc? Thanks for any advice ladies.
lizzy Femara is an aromatase inhibitor (AI) for post menopausal women. Once the ovaries have shut down the body still produces small amounts of oestrogen (about 3-5% of the pre-menopausal amount)from tissue - mainly fat - and it is this oestrogen that AI’s block. It works in a different way to Tamoxifen, but it is quite common to move on to AI’s after 5 or 7 years on Tamoxifen.