Aromatase Inhibitors: Did you decide to go on them or not?

Jeannie53, I too had many problems with Anastrozole! It was the first medication my doctor had me on following surgery and radiation. I had horrible memory problems from it. There is evidence that cognitive function can indeed be affected by lowering estrogen. This issue is still being researched and I don’t know if the studies are conclusive or not. Many women have trouble with scattered thinking during menopause when our estrogen levels naturally lower. Those of us who need to take drugs following breast cancer to lower our estrogen levels also can have that side effect. My doctor switched me to Tomoxifin from Anastrozole and my cognitive function was much better. Unfortunately I had some sort of allergic reaction to the Tomoxifin and broke out in itching hives all over my body! I was miserable, and needed to take cortisone for several days to clear up the hives. My oncologist gave me a break for about 8 weeks from meds. to restart over again with Exemestane. I’ve been on that for a little over a year and it seems to be much better for me. It’s far from perfect, but I can tolerate it.

@oilermama In my case I'm low risk without MBC so for me the decision is easier. I'm sure if my circumstances were different I may have gone another route. It's different for everyone so many variables good luck with whatever you choose.

jeannie, thanks for sharing this. I, too, am 66 and wonder what it would be like to forsake the Ibrance and anastrazole. However, with MBC, what are the risks?

@crazydaisy I was on Anastrozole for 6 months it was terrible for me and I had horrible body aches. My doctor had me take a break and switched to Tamoxifen after a while I felt aches again. I have opted to take nothing as I am considered low risk. The doctor told me taking Tamoxifen would cut my risk in half. I have a feeling a lot of women wrestle with this decision I know I do but also know at 66 years old my quality of life is important to me. I was diagnosed April 2018 so far so good.

@junec
Have you looked into Ibrance combined with your AI? Two of my breast cancer support friends have done well with this with their metastatic cancer to bone. One is going on 4 years and doing fine. The other was fine for several years and is now undergoing more treatment for disease progression. Here is a site where you can start looking: https://www.breastcancer.org/treatment/targeted_therapies/ibrance

Thank you

A second opinion is never a waste of time in my opinion. I read like 25% of women that take AI's, have such bad side effects that they quit before the 5 years. And the new standard is to take them for 10 years! There are 3 main drugs and then tamoxifen (which is usually for women under 50). So many factors go into deciding whether to go onto an AI, but just get as informed as you can. There is even a calculator to see if the drug will decrease the re-occurrence of you cancer. Since it is already metastatic - I have no idea if these drugs are effective. I have not suffered any bone loss & I take 4,000 units of D3 Oil daily and 1,000 of calcium. Every person is different with side effects and only you can make the decision with a doctor you can TRUST. Good luck.

I've scheduled a 2nd opinion and am considering an AI for my IV stage metastatic breast cancer, it gone to my bones so the posts regarding bone loss are helpful but frightening. I'm hoping the MD I'm trying to see will discuss options as the last one was take what she said or don't take anything.

CrazyDaisy, I think most oncologists suggest some sort of estrogen lowering medication following breast cancers that are estrogen positive—, those that are driven by estrogen. However many of us do not tolerate these medications very well, and have side effects that are hard to live with.

@crazydaisy @trixie1313
And like Trixie, I'm on AIs (first anastrozole and now exemestane) for seven years as I'm tripple positive for hormone receptors.