I had bi-lateral mast,chemo, advised to take Femara for 10yrs. Did not react to Femara well and after 2 months chose to stop. Concerned about recurrence since I am not currently taking anything. Positive for BRCA 2 gene, will have complete hysterectomy on Nov. 4th. What are my odds for recurrence??
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Q: looking for comments about taking Femara, what are my chances for recurrence.
Answers (4)
10/ 2/09 4:34am
Hi - Only your oncologist has all the data necessary to figure out the chances your cancer will come back, so best to ask him/her. An aromatase inhibitor, sich as Femara, definitely lowers your odds of recurrence; but it's up to you to decide if its benefit is worth its distressing side effects. So, speak to your doctor about this, OK? Good luck - PJH
10/ 2/09 7:11am
Hi Boobear, I have been taking Femara for three months and found the SE's hell if there is a SE..I've got it. The worst being the pain in the fingers, knees and feet.I have a very good Onc. I can speak to and explained how I feel.( I have left a question on this site also for help.) My Onc. has asked me to try Aromasil for 15 days and note each day its SE's. I also said I cannot take Femara and wanted to stop. I was Grade 4 cancer. Ask your Onc about Aromosil. Oncologists are raving about Femara and say it is the best chance we have for non recurrence. However, they are not the ones taking it , we are. It is only my opinion Boobear but find a way to stay on one of these drugs..Do not let all you have been through be for nothing. Fight. I am taking Omega 3. I have also been suggested some other treatments which I will try first before I say anymore. Exercise, I know its hard but if you can manage to walk and lift some light weights it helps a lot. I find gentle exercises in a pool also relieves the joint pain.Most of all do not let your joints get cold...keep them warm.Please keep in touch , we need each other at times like this.
10/ 5/09 6:43am
Boobear, statistics are open to interpretation - YOUR interpretation. Do you feel a 1 in 20 chance of a recurrence is too high? How about 1 in 10? Consider what you deem acceptable, and balance it against the side effects of Femara or another AI. If not taking an AI, and having a 15% risk of recurrence sounds good to you - then that's "acceptable," right? Your decision - however, I would call your doctor's office and let them know you've stopped the Femara, just so you don't blindside him in December. And ask about tamoxifen, OK? Good luck - PJH
10/ 6/09 11:38pm
PJ, thanks for your response, yes I think it would be by an individuals interpretation of risk. What I am struggling with is, why won't doctors say your risk is 5% and this is not very high so you can take the AI or not. Or you have a 35% risk, that is high and I really recommend that you take an AI. My doctor doesn't seem to want to really say. It is not the number 5%,10%,15%, that is at issue. I think doctors have seen many scenerios and they have a pretty good idea based on an individuals staging etc. what a 10% risk would mean to this individual. Does this make any sense. Since I have found out that I am BRCA positive, my oncologist came right out and said, you have a 25 - 40% risk for ovarian cancer and in my opinion, that is way to high to take any kind of chance. Those were her exact words. Now this makes it much easier for me to make a decision. She hasn't told me what to do, but she has really emphasized how she feels. Most likely because she has seen enough of these situations. So do doctors consider a 10% risk, high. I don't know and I don't think my doctor would say one way or the other. By the way, because of my high risk for ovarian cancer, I am having a complete hysterectomy in 4 weeks.
PJ, did your doctor express what he really thought you should do given your risk factor? It seems like standard protocal in all ER/PR post-menopausal breast cancer pt, is radiation & AI or tamoxifen. I don't want to be taking something just because.
Thank you for adding any other comments.
Boobear
10/ 7/09 4:37am
I think oncologists are wary of giving advice for fear of recriminations or lawsuits. I noticed, throughout treatment, that I was given many, many choices. For instance, instead of simply "You should have a mastectomy," it was "You can have either a mastectomy or lumpectomy, your choice." NO ONE would offer an opinion!! It was very frustrating. So while any doctor will quote facts, not many will interpret those facts and give you an answer - for whatever reason. Your experience isn't unusual here; I think you'll have to learn how to live with this peculiar aspect of treatment, since you'll encounter it over and over again. Is 10% high? The question is, does it feel high to YOU. And truly, that IS the important thing, since "high" is an interpretation of facts, an opinion; and your opinion is the one that matters most! PJH
10/22/09 5:39pm
I had done a lot of research on the side effects of Femara, and I was terrified of starting the drug. So many women have terrible side effects and have chosen to go off of the drug even knowing it would shorten their life.
However, much to my surprise after 1 year on Femara, I have been been blessed with only 1 side effect - hot flashes. I controll the hot flashes with 800 mg of Vitamin E, and it's decreased and some days even eliminated them.
I feel that taking MSM has eliminated any joint pain I might have had. I was on MSM prior to starting Femara. You can buy it in any drug store - but, I purchase mine from a pet store - it's works just as well, and you get a huge container that will last for several years. I mix it with my yogurt, and take yogurt with my pills (Vitamin C, E, D, etc.) - they go down easier.
If I were you, I would start MSM at least a month prior to starting Femara.
Good Luck,
Carolyn
4/24/10 12:57pm
I have been taking femara for about 9 months since july of 2009 and I have those joint pains numbness finger tips hot flashs. My question is, having had estrogen sensitve breast cancer, can we take Vitamin e and msm while taking femara?
4/24/10 2:24pm
Nina, it's always a good idea to check with your doctor when adding supplements to your diet, or taking new drugs. That said, my oncologist prescribed vitamin E to me - so that should be fine. Sorry, don't know what msm is, but check with your doctor on that, OK? Good luck - PJH
3/ 5/12 4:23pm
Hi. I've been taking femara since July 2010. The side effects haven't been worrying til now. I'm 61 so already well thru the menopause and have only minor joint pain and no problem with hot flushes (how can I tell, I live in the tropics). However, I've just realised that it is femara that is causing my vaginitis.
I went for a PAP smear. The nurse told me I had atrophic vaginitis. The skin is soo raw and cracked. The PAP smear was excrutiatingly painful. I'm wondering if there is anything at all I can do to improve this? I have been told that it's because the vagina needs Estrogen and femara reduces the estrogen in our bodies..
I will try using liberal ammounts of unprocessed coconut oil in the area. I am also considering stopping the femara and relying on aspirin. Researchers have discovered why taking daily aspirin reduces the risk of secondaries (metastasis) I just can't find out the dose.
3/ 5/12 5:16pm
This is definitely an issue for a lot of women taking aromatase inhibitors, like Femara. But please don't substitute aspirin for Femara; the risk reduction Femara offers is WAY beyond what aspirin can do.
I'd suggest asking your GP about Estring, topical Premarin, or another topical estrogen cream. Isn't it counterintuitive to use estrogen, while you're taking Femara to prevent your body from making estrogen? Yes, but apparently the dose is so low, and so little is absorbed into your system, that it's a viable option for women experiencing extreme vaginal pain, like you are. I hope your oncologist thinks this is worth trying - PJH
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By Boobear— Last Modified: 03/05/12, First Published: 10/01/09
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Hello Ironside,
Thank you so much for answering my question. Prior to cancer, I had never taken anything, I feel uneasy about taking drugs that they don't really know what the long term side effects are. The fact that I have experienced side effects makes it very difficult to stay on them. My doctor prescribed paxol for depression and I took this for two days and then stopped, again because of side effects. I don't see my onco. until December, so he is not aware that 'm not taking this either. I know I should be on something but I also think that my risk is not real high. I just can't seem to get a doctor to tell me what is considered high. 5%,10%,25% etc. If it was 50%, then I would consider this high. I am BRCA postive and know my risk for ovarian cancer is fairly high so I am having a complete hysterectomy on Nov. 4th. That should take care of this. I'm just so confused!!! How are you doing? I'm sure your road has been much longer than mine and you sound like you are a very strong person.
Did you have a mastectomy? The way I understand it is, with a mastecomy, your risk becomes much lower for a recurrence. So, I feel because I had bi-lateral breast cancer and bi-lateral mastectomy, my risk should be very low. I just wish that doctors would be more up front with us.
Thanks, Boobear