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Hello everyone..I too am taking femara..I have mixed feelings on how this drug makes me feel, I have hot flashes and the joint pain but that is about it for me...I find it is helpful to exercise and stretch first thing in the morning...but it never fully goes away..I keep taking it hoping that it is working and live each day one day at a time...I am very positive...thanks for reading...Cheryl
I've bee taking Femara since May 2007. I was diagnosed in November 2006, had a lumpectomy and ultimately a mastectomy in March 2007.
I've experienced slight weight gain, hot flashes and fatigue. Muscle and joint pain sometimes bothers me - but I've also been seeing an acupuncturist on a weekly basis and I feel that my weekly acupuncture sessions has helped me feel "normal."
I still have hot flashes, but not at the same extreme that I had experienced when I first starting taking Femara. I own a business and keep up with 3 grand children.
I don't think that acupuncture will help with bone loss, but at least I have energy to try to exercise on regular basis to help keep my bone density.
Hi, I am on Arimidex and feel like it is killing me. I had microscopic invasiion of dcis and underwent lumpectomy, mastectomy and 13 nodes removed (lymphedema started six months later). Was on Tamoxifen for 2 years, then changed hospitals and doctors, they said that the Tamoxifen wasnt right for me as I was resiliant to it, and because of myomas and ovarian cysts with estrodial sky high underwent hysterectomy and oopherectomy, was put onto Arimidex. Two weeks into the Arimidex I started with trigger finger, so went onto Fosavance. Two weeks later went to start my reconstruction process, so came off the Biosophonates which actually did help very quickly. During this time it was discovered that I have an atrophic kidney, and problems with the other one, gall bladder polyps and kidney cysts. Previous scans never showed all this. I kept trying to see my doctor to see if it is the Arimidex that has caused all this, but she wont see me until my scheduled appointment. I have been running round like a headless chicken trying to get help because I read that if you have kidney problems then we should stop taking the arimidex. I dont know what to do whether to stay on it until January when my appointment is scheduled or to come off it and try and help my kidney. I did come off it a few weeks ago for seven days as I physically couldnt walk, and when I tried I fell flat on my face three times. After four days off the drug I was running again. I came off it again for two days as I had my reconstruction and masoplexy three weeks ago (after 11 months with an implant in). So, now I am frightened that coming off it and going back on it is damaging me even more. What a frustrating, frightening, way to live a life and look after four young children - sorry, ranting, but I am scared to death with this drug and its side effects - yes, the cure rate for cancer might be up, but the side effects are killing us off with other causes!!
Wow, what a rough time you've had... If I understand it correctly, you had DCIS - but it was also IDC, or was it NON-invasive? I assume since they took out 13 lymph nodes, it was invasive. Were any of the lymph nodes affected? All of this would impact on your risk of recurrence, clearly. So if you had lymph node involvement and an invasive cancer beyond DCIS, then I can see why they want you on Arimidex.
HOWEVER - many doctors forget there's such a thing as quality of life. I'd suggest you ask your oncologist what your risk of recurrence would be if you stay on Arimidex; and what it would be if you stop taking it. Get the actual risk: like (I'm making this up), 10% risk of recurrence with Arimidex, 20% without (rather than hearing your oncologist say, "Your risk of recurrence is reduced by 50% if you take Arimidex." Same thing, different way of saying it.) Then, once you have the facts, decide - is being unable to walk worth the extra 5 or 10 percentage points off what may very well be an already low risk of recurrence?
Arimidex is also probably worsening your bone loss, and possibly significantly; so take that into account, too. As for Arimidex causing other issues, you really need to nail that down with your oncologist. And I'd suggest you demand an appointment ASAP - if your onco. won't see you until January, ask your family doctor to set you up for someone who'll see you sooner. You're having some serious isses and doubts about this drug - you don't need to wait another 2 months to get this situation resolved.
Best of luck to you - PJH
Hazel, I'm sorry you are having such a difficult time with the Arimidex. Your health issues are too complicated for me to comment on, and I don't know how many are related to the Arimidex. I do think it is unacceptable for a doctor to say she can't see you until January when you have so many complex problems. You might want to talk to your primary care doctor or any of the other specialists you have seen for the kidney issues or the reconstruction. One of them may be able to sort out what might be Arimidex related and what might have other causes. If they don't feel qualified to take you off Arimidex, they may be able to talk to your onocolgist or refer you to another one whose schedule will allow seeing patients between routine appointments.
Hi, just to fill in more about my cancer, it was stage 0 when I started this journey, the hospital lost my results so by the time I got to see the doctor the dcis had started to break out and was grade 3 and became stage 1 microscopic. There were no lymph nodes involved.
(this was at a different hospital to where I am now.)
I have spoken to my family doctor, I have been to the emergency at the hospital, and in two days I will see the nephrologist. I have been running around everywhere with ultrasounds and ct scan and no one seems to see it all as seriously as I do, apart from my gp. It feels like I am being left until I am on the brink.
I will do as you have suggested and find out what my recurrence perecentages are.
Thankyou for any replies.
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PJH
After reading about the bone problems we may face. have any of you taking these drugs I'vwondered if they are right for you. I am having doubts. I have horible headaches and bone and joint pain. also I have mood changes,and remembering problems,also I must mention that I also have hair problems very thin and not growing.also very tired. I quit the arimidex for3 months{no insurance and no money to cover $350. per mo. I felt so much better, really enjoying life. Itold my oncologist. he immmediately told me to take the femara. I'v tried it, if anything its worse.! Are we going to look back on this and regrete it like taking the HRT. to control menopause symptoms. I would like to hear comments from some of you. Please. oh yes just so you know, I had a mastetomy, chemo, radiation. cancer was IIIa and 5 lymph nodes positive, of the23 they removed .. Thanks Trish
Hi Trish: Thanks for chiming in here. Bottom line is: we just never inow how much these drugs are helping. We DO know their side effects, for sure. But, even though statistically we know that they prevent recurrence: we are not statistics. We're women trying to walk a tough tightrope here: how much pain and suffering do we want to experience, for how much insurance against recurrence? And now, with osteoporosis thrown into the mixture as well... my oncologist is advising against it strongly, but I keep thinking, maybe I should just quit the Arimidex and take my chances. I'm not there yet; just thinking about it. Anybody else out there having second thoughts about these drugs? PJH
Thank you, It is nice to know others feel the same. please keep me posted as to your thoughts on this. I hope we get more feed back on this. Trish
Hi everybody,
I'm the 3-rd month of Arimidex. I have terrible joint pain. Starting from hands, arms, then back. It's very hard to grip or stand up after some time of sitting or lying. I did hope that it would lessen when my body gets used with the drug. But, it does not.
I'm thinking of adding calcium and vitamin D. Not sure if that can help.
Any of you have experience of reducing joint pain?
Calcium and vitamin D3 are very good for you, Lana, whether or not they reduce joint pain. I don't know of anything that's been shown to reduce the incidence of pain; it can be treatable with Ibuprofen or another over-the-counter type painkiller. For me, it does help somewhat to exercise first thing in the morning, get everything up and running. Good luck - PJH
HI I quittaking thefemara, so then my dr put me on aromtase. {might be wrong spelling} I still feel like hell. it makes me hurt all over pertikerrally in the pelvis and back. I'm tympted to just keep going back for the blood teste and see what is said if I dont't mention it. I hate the way it makes me forget things and be ing unable to think clear. the Dr wants me to have a MRI in July. WHY he dosent say. just to see whats going on. how much radiation is TOO much. please respond. Trish
Hi Trish - I'm sorry you're having such pain issues with the aromatase inhibitors; they can, indeed, be very difficult. They do work well, however, so it's a balancing act - how much pain, how much gain? As for the forgetfulness, that would be chemo-induced, if you had chemo? And the MRI, and blood tests... these would be questions to ask your doctor. I hope you get to a less painful place soon - PJH
Yes, I do exercise in morning and play table tennis every day. During playing and hour after that, I felt much better. Almost no pain. But just a short sleep or sitting pain comes back. My fingers swelled a bit. I had to remove the rings. I'm afraid I have to live with this pain until finish of this 5-year-arimidex. Hope it won't get worse, so that I can finish this treatment. (I had to stop Chemo after the 4-th rounds cause of low WBC).
I still work 8 hours a day, and do house works.
I note that when we are cheered up, we feel much better.
So let keep up and be cheerful! We will all go through this successfully!
Let get as much as possible from the time we have.
Lana, that swelling you describe could be a sign of lymphedema - have you discussed this with your doctor? If not, you should, at the earliest opportunity. The sooner it's treated, the easier it is to treat.
And I know what you mean - getting up is always the most painful time, whether from a chair, or from a night's sleep. Just something we have to keep plowing through, eh? You sound like you have a good attitude - it's hard, but stay positive. And yes, let's enjoy our time here—happiness is a better feeling than anger or sadness, for sure. PJH
Hello,
I took Femara for 5 months and I have hot flashes, spine pain, bilateral hand forearm pain, GI problems.
What is causing all this as I haven't taken it for over 1 year now?
Is there a scientist who is a specialist for Femara?
pls help
Hi - PLEASE talk to your doctor about these symptoms. It doesn't seem they couldbe related to Femara this far out... Hope you feel better soon. PJH
hello, my doctor does not know if it could be permanent damages.
Ms. Harris, have you heard of other women having these symptoms for such a long time after they have stopped?
I was reading another forum on Femora and the women there said that even after stopping femora they still experienced a lot of the bone and muscle pain and hot flashes.
thanks
I personally haven't heard about these long-term side effects - but that doesn't mean they don't exist. I just wouldn't want you to assume they're from the Femara, when they could be from some other cause. Have you and your doctor discussed this thoroughly? PJH