Managing AI Side Effects

Posted by kissmekate48 @kissmekate48, Jun 9 12:21pm

Hi all, and moderators, please move this if it's more appropriate to be part of an existing discussion. Apologies -- it's a bit long.

Just wanted to share something positive about AIs, which I realize is a data point of 1, me. I'm on Anastrozole/Arimidex since Feb. 2024 and I wanted to wait a bit before I posted about how I'm dealing with it (realizing everyone is different) that's been helpful. (I'm 59, stage 0+, double mastectomy, ATM gene.)

1. Return of hot flashes. I'm taking 5mg of melatonin at bedtime and it really seems to help, esp. with nighttime hot flashes. They're still there, but less disruptive. It took a few weeks to notice.

2. Joint pain. I was really alarmed by the arthritis-like feeling I was getting in my hands and feet. As soon as it starts, I start moving. Someone told me "motion is the lotion". I'm pretty active anyway, but this is a good excuse to keep up hobbies that use your hands a lot.

3. Bone loss. I got some ankle weights and a weighted vest. I like the vest better. I try to use a standing desk as much as possible, and luckily, I love weight-bearing activities like hiking.

4. Vaginal dryness/discomfort. Since hyaluronic acid (HA) "personal lubrication" isn't covered by insurance and is a bit spendy, I got thin, cylindrical ice cube trays, add melted coconut oil and a couple of drops of HA. I slice them into chunks and insert every few days at bedtime. (I cleared this with my dr, who I'm sure thinks I'm a nut.)

5. Anxiety. I definitely felt it and periodically still do -- mild panic. But I told myself I would give it time and just see what tomorrow brings while reassuring myself that I was basically OK and could deal with it. I've been able to. We are resilient creatures.

I hope this might help someone. Reading about recurrences keeps me taking my little pill. I feel lucky to have a literal life preserver, and I appreciate this community and the knowledge sharing.

Sincerely,
Kate

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How I feel in an image-

I am being consumed by flames and I’m being offered mist from a spray bottle to help.

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@srussell

I’m at the end of my rope so this was good to read this morning. 42yo, ER positive, Letrozole and Zoladex since Feb 25. The pain is WILD.

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I just wanted to say that I had a terrible time on Letrozole after only a few months in 2023. I had such awful pain in my back and buttocks that I could hardly walk and ended up using a cane. I switched to anastrozole that spring and have been on it ever since. I still have some back pain but so far I have been able to tolerate it. So consider ditching letrozole and getting another AI.

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@nora305

I just wanted to say that I had a terrible time on Letrozole after only a few months in 2023. I had such awful pain in my back and buttocks that I could hardly walk and ended up using a cane. I switched to anastrozole that spring and have been on it ever since. I still have some back pain but so far I have been able to tolerate it. So consider ditching letrozole and getting another AI.

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I SO appreciate your feedback. That is the level of pain I'm having!!! I can hardly walk in the mornings. You are the second person to recommend anastrozole. I meet with my onc in two weeks. I'll ask.

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