stop the madness

@jkh I had almost exactly your same experience. Anastrozole for a year and a half with identical reactions to it as yours, including a trigger thumb. I tried a couple of other estrogen blockers and have now been on Tamoxifen for a long time. I have very few symptoms now.

Terrible reactions from anastrozole. My dr now has me on a low dose of testerone plus taking DIM. It helps with the side effects of the evil drug. No one ever told me how bad the anastrozole is with side effects. Also I have done desire for sex with my husband. The DIM helps to metabolize estrogen as well.

I try really hard to make friends with anastrozole. I’ve even thanked it for trying to block the cancer cells 😏 The big question always is is the medication worse than the disease? That is so unknown so we have to depend on the health professionals to give us the research and their knowledge to make the decision which is best for our life. And YES, all of this, cancer, estrogen blockers, age, is a killer on the sex drive. We are strong, we are resilient, we have grit, we can do this. We all want to live with joy in our hearts. That is my prayer for all of us on this journey!

I had pain with anastrozole too. So bad I could hardly walk. It took a third med, exemestane, and now I can go for walks and the hot flashes are even better.

@marannolson
I found the same results. Yikes, with anastrozole I could barely stand up as my feet and ankles were so bad as well as hands and every other joint in my body. Letrozole wasn't much better. Finally, with exemestane I have a life again - don't have all that cloudy brain either. As long as I walk daily, do my after-breast surgery exercises twice weekly, and knit to exercise my hands then life is livable. After a year now, even the "heat bombs" are not as bad.

It has now been 10 weeks off and I go for my mammo on Tuesday. I pray I am still clear, because I feel so much better. I sleep really well, I walk way better, I am knitting now to loosen up my hands that are still very stiff, but I have no swelling in hands and very little in feet. I am starting to lose the weight I gained on AIs, I eat better. I think walking away from them was the best thing I ever did.

Good for you!! I am in remission after only lumpectomy in Oct. 2016. Did nothing else. Tried all three e aromatase inhibitors.... For a few days..side effects too bad!! Also skipped radiation. Hope I my god luck will last.....those treatments seemed worse than the disease!!!

I'm in total agreement. keep a watchful eye and do your mammos, It's taken me 4 months to find a proper oncologist (see him on Friday,) but had long discussions with my surgeon, partial mastectomy and lymph nodes clear. Radiation, meds therapy make me feel this is all worse than the disease. Pray for true cure, but many dr don't want to put "us in charge" It's journey for sure, and thankful for this platform.

I don't know about the blood draw frequency but there are multiple studies addressing the breast cancer 'non-compliance' issue. Because approximately 50% of the women who begin taking aromatase inhibitors quit taking them with 5 years. The estimate is that 75% or so of that 50% actually quit taking them with the first two years. These numbers don't include the woman who are prescribed them but never start taking them. [I've posted links to articles elsewhere here. And anyone can search on Google Scholar for more.]

Also these numbers don't include the women who fill the prescriptions but don't take the drug but don't want their doctors to know.

My point is that there are a lot of women who suffer side effects that just are too difficult to add to their lives for any number of reasons. I hope that everyone who can benefit from them tries them, seriously and for a fair period of time. But I also hope that those who do and find the drugs intolerable know that they are not alone in that place.

None of the women I know personally had significant side effects, and I found that walking more than 40 minutes greatly reduced joint pain. This is not to dismiss the experience of those who do have problems with the meds.

I think we need to keep in mind that risk of cancer recurrence may justify enduring a certain level of side effects. I fear that online forums tend toward the negative and may even contribute to the non-compliance statistics. I am 7 years out and grateful for Femara.