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

@brinacarmen
I was started on anastrozole, then letrozole, and finally exemestane. Everyone reacts differently so what was a problem for me may not be a problem for you.

Yes I made the change last week from the AI's to natural AI's which my naturopathic MD prescribed. It's a long list of supplements that all block aromatase, but my side effects to all three AI's made it intolerable for me.

Also, Turkey Tail mushroom (PSK is the active agent which is prescribed in Japan and the Japanese have a 4% lower mortality rate from cancer than we do in the US...Chrysin, DIM, Zinc, Grape Seed Extract etc. are all natural AI's.

That's exactly right! About 56% of women can tolerate them, the remainder are lost to followup. Which is unfortunate as we can't accurately know if they did or did not have a recurrence of their cancer.

I am trying to reach Mayo Clinic in Phoenix to get a second opinion as I'm just flabbergasted that the AI's, for those with bad side effects, didn't continue finding new molecules that could have less side effects! The bone and joint pain alone is frighteningly bad (for me)...

Did it cause weight gain ? I put 7 lbs on tamoxifen in just 9 mos my body and skin changed drastically
Dr is trying something else in Jan

I didn't gain weight. My attitude was I would rather have pain or even disability (bones) than be dead. But again, joint pain improved with exercise longer than 20 minutes .

Tamoxifen and AI's have entirely different mechanisms of course so gaining weight on Tamoxifen wouldn't be relevant to your experience with an AI.

I would first say I was in my 30s when I took it, and I had a surgical oopherectomy at the same time. Although I did not gain weight on tamoxifen. I did have a lot of changes starting at that time. My skin started to age, my hair started to change texture. Essentially I started the normal aging process of a post menopausal woman. I just noticed it more because it happened earlier, and frankly faster. I started gaining weight when I had an accident and got pretty de-conditioned as a result. It has been a stubborn problem every since.
Have you felt that the pandemic has affected your activity levels over the last year? Have you seen a skin care specialist about your skin?

Well In the past two years I went thu 24 rounds of chemo, 30 radiations and two major surgeries I bought great bands and maintained a lean body ( i refused the steroids & Benadryl they give you with chemo ) I fasted on chemo days ate lite day before and day after and did great, the first 12 rounds cause hair loss but I used the cold cap system and didn’t loose any. Thank God , the last 14 rounds didn’t cause hair loss but I started to feel majorly tired then towards the end I noticed I was feeling depressed , achy ,no energy gaining weight and I assumed the treatments had caught up with me and I would feel better when it was over but no I felt WORSE Tamoxifen starter in March. Chemo ended 6/16. So after months of severe fatigue , achy body everywhere, weight gain, depression , I looked pregnant. Dr finally took me
Off 10/13. I still feel awful and waiting for it to reverse itself. We are going to try Arimidex in January (just had my final reconstruction surgery yesterday YAY!!!!!!). Sorry about the long story but it’s to confirm it was tamoxifen that caused All
This

Hi Kate, here’s the contact information for Mayo Clinic Phoenix and information about how to request a second opinion http://mayocl.in/1mtmR63