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

Posted by nanato6 @nanato6, Oct 12, 2018

Nanaloves: I’m about to start arimidex and just feel that the contraindications , bone issues etc. are overwhelming. I’m 70 years old, dodged a bullet I feel with zero stage DCIS but the follow up is pretty much no different then if it was more aggressive. I’ve just done 33 treatments of radiation and now they advise arimidex as a preventative. I’m not sure with the beginnings of arthritis and lower back. sensitivity already that I should take it. Anyone not take it and not have a recurrence within the 5 years.

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Profile picture for katehanni @katehanni

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.

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Can you list them please?

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Profile picture for Chris, Volunteer Mentor @auntieoakley

I have no doubt that you were having side effects from Tamoxifen. I just pray that AI goes better for you. There will be changes but hopeful not misery.

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Yes ! Me too ! Thank You so much for the support ! I so appreciate it

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Profile picture for brinacarmen @brinacarmen

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

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I have no doubt that you were having side effects from Tamoxifen. I just pray that AI goes better for you. There will be changes but hopeful not misery.

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Thanks so much! Every time I call there I get a voicemail that's full or overwhelmed and no connection is made.

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Profile picture for katehanni @katehanni

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)...

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

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Profile picture for Chris, Volunteer Mentor @auntieoakley

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?

Jump to this post

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

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Profile picture for brinacarmen @brinacarmen

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

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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?

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Profile picture for brinacarmen @brinacarmen

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

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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.

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Profile picture for windyshores @windyshores

Reading the side effects of any medicine can be overwhelming. Many of us did fine on AI's. My only tip is to walk longer than 20 minutes. My doc said she heard that from many people. Pain at first and then it gets better if you walk longer. I finished my time on an AI and almost feel I felt better while on it! But honestly it just means I am that much older 🙂

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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

REPLY

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)...

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