1. Posted by shej95032 on Tue, Apr 29, 2008, 7:09 pm PDT

Aromatase Inhibitors have brutal side effects for approximately 50% of the women who take them. Not just inconvenient or uncomfortable or annoying, but brutal side effects like hideous depression, crippling pain, and equally crippling swelling of legs, feet, and hands. According to statistics last year, nearly a quarter of that 50% quit the drug. I ask everyone I encounter with breast cancer expertise about what to do about these side effects. I have heard from every person I have asked, without exception, that everyone knows about these side effects, but no one knows what to do about them. Finally, the head of clinical research from one well respected breast cancer center said that some oncologists are telling their ladies to take the AI every other day because they have a long half life - mine has a 27 hour half life - and they don't they don't want their ladies to quit the drug completely. My oncologist won't sign off on that because there are no studies testing effectiveness, but he was very careful to say that I should do what I think is best for me. So, I am "undertreating" myself and it has made a WORLD of difference. After a year and several months of nightmare, far worse than the chemo, by the way, I have my life back and am feeling for the first time that I may actually live. I may be living in a fool's paradise, but at least, for the time I have, I will feel alive and reasonably well. The side effects are not gone, but they are manageable with an anti-inflammatory and a muscle relaxant and my spirits are much improved. Fortunately, my cancer did not include node involvement, and my margins were clean. Yes, I did overtreat regarding double mastectomy (I had had breast scares for 40 years, in one breast or the other, when I was diagnosed and wanted to be done with that) and a course of chemo, and then reconstruction, and it was all hard, but not as hard as the side effects of the AI. If these side effects can be addressed by some discovery in the future, I would be willing to try the daily dose again. The drug companies know there is a problem, I am told. I certainly hope they are also looking for a solution.

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2. Posted by Nan on Thu, May 01, 2008, 6:24 am PDT

While I agree to make sure you are treating yourself as best as possible, we have to keep in mind that sometimes the cancer has a mind of its own and comes back anyway. I'm in my 40's and have several friends with metastatic disease who have done everything possible to avoid a re-occurance. I faithfully take my estrogen blocking drugs and struggle with the side affects. But if my cancer comes back, do I blame it on that extra 10 pounds I couldn't get to come off? True thought that following a proven treatment plan lowers your odds of re-occurance much better than anything else. - but I just wanted to point out the "guilt" many of us have is that we somehow brought this cancer on ourselves.

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3. Posted by bevacquip on Fri, May 02, 2008, 10:39 am PDT

I wanted to get information about long term affects post bilateral mastectomy. My arms feel as though they have rubber bands around them from above the elbow down to my hands. Is this a common side affect? I did not have this issue before my surgery, so I was wondering if anyone else has had the same experience. Also, pain in the elbows down the forearms. I am over 1 year post mactectomy. I have had issues with typing and doing daily activities, even driving a car can become very painful due to the numbness so I was just wonder if anyone else has had the same experience as me.

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4. Posted by shej95032 on Sat, May 03, 2008, 11:03 am PDT

I also had a bi-lateral mastectomy with only sentinal node removal on the left side in November of 2006. I sometimes experience mild and short-term lymphodema on the left side, Did you have nodes removed beyond the sentinal nodes? Are you taking an aromatase inibitor? One of the side effects can be swelling and stiffness and even numbness in lower arms and legs and hands and feet. Did you have radiation which affected the flexibility of tissue? Have you been to a physical therapist? Physical therapy has helped me. Some physical therapists are specialists in post breast cancer issues. Is there a breast cancer center where you live? I found just such a physical therapist through a breast cancer center which is located in the hospital where I had my mastectomy. A breast cancer center might also have other ideas and other referrals which could help you. I have to believe there is some help out there for you. Maybe there are ideas you could pursue at the American Cancer Society, even if only to help you form questions about your issue for your physician. One place to contact via the net might be Dr. Susan Love's Research Foundation. Dr. Love also wrote a book which my oncologist recommended I get. Medical staff there will answer questions you submit via the website, and I think you can even phone and get help. All the best to you.

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5. Posted by ACE on Wed, May 07, 2008, 9:26 am PDT

Lillie, I have a question for you then. I had a lumpectomy in June of 2007, had radiation treatments for about 6 weeks. I then had a complete hysterectomy because it was a hormone based cancer. My oncology doctor wants me to take Tamoxifen, Arimidex and others. Problem is, is that I have had a blood clot and would have to also take Coumadin and that isn't something that I want to mess with. She had me take Femera and had to stop that one because it was causing chest pain and pain down my left arm, almost like having a heart attack. I then went on Aromasin and broke out with a rash, joint pain so bad, I couldn't move and took myself off the medication. She wanted me to go back on it, so I did, and after only the 2nd day, I then had the symptoms of joint pain and not being able to move. My Dr is concerned and told me that I needed to take this medication so that I won't get breast cancer again. I told her that I would rather not take the medication and would rather get breast cancer again. How should or how can my Doctor and I resolve this matter?

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