Aromatase Inhibitors: How to choose and manage side effects?

Posted by shebell @shebell, Sep 11 11:33am

I was diagnosed in April 2024 stage 1 invasive ductal carcinoma - estrogen positive. I had lumpectomy and radiation my onco score was 12 so was able to skip chemo therapy. I have tried Anastrozole and had terrible side effects I have not tried Tamoxifen yet and am seriously thinking about forgoing any AI long term treatment has anyone else made that choice?

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jaynep | @jaynep | Sep 19 8:57am

In reply to @cherziggy "I’m on the fence about trying a 3rd AI. First two weren’t tolerable. Please share good..." + (show)

My oncology nurse (after much cajoling on her part) got me to try osteo bi flex for the horrible joint pain I was experiencing. Much to my surprise, after about two months, the pain was so much better. You may want to give it a try 🌹

alibee | @alibee | Sep 19 10:59am

In reply to @cherziggy "I’ve tried Letrozole and anastrozole brand name. The Letrozole destroyed the ulner nerves in both arms..." + (show)

Sorry to hear about your challenges. So many different experiences! I’ve gone from a Anastrozole to Letrozole, which works well for me. A girlfriend was in your situation, and her oncologist switched her to Tamoxifen. Not the ideal, but she could tolerate it. In October she’ll hit her 5 years and will go off it.

cherziggy | @cherziggy | Sep 19 12:59pm

In reply to @cherziggy "I’m on the fence about trying a 3rd AI. First two weren’t tolerable. Please share good..." + (show)

I started exemestane again today after taking a two week break. I’m keeping my fingers crossed!
Congrats to you friend!
Thank you for the feedback! 🤗

sally484 | @sally484 | Sep 20 10:04am

In reply to @cherziggy "I’m on the fence about trying a 3rd AI. First two weren’t tolerable. Please share good..." + (show)

I've been on Xeloda, Anastrozole and am now taking Exemestane I find they are pretty much all the same. I do not get alot of the aches and pains that women have problems with, but it definitely affects your moods. ALL of them. And they make you very tired. I am also having some weight gain issues with the Exemestane. Best of luck to you.

dlmdinia | @dlmdinia | Sep 20 10:48am

In reply to @cherziggy "I’m on the fence about trying a 3rd AI. First two weren’t tolerable. Please share good..." + (show)

I believe there is a lot to be said about trying different types of AI's including different manufacturers who may also use different fillers.
But something to keep in mind is the drug is meant to suppress estrogen production. If you research how estrogen works in your body, you'll get a better idea of what to expect simply because the drug is working. Weight gain, for one, is possible because of the lowered estrogen level, not the drug per say. There's also elevated lipid levels, moodiness, insomnia, and more. It's the loss of the estrogen that may be to blame. As to joint pain, I was almost literally crippled by knee pain, but adding collagen supplements had huge results. I also found that when I tried a lower dosage that I had serious jaw pain (from Prolia?) that improved with a higher dosage. Everyone is different and will react differently so you just keep experimenting. This forum is such a great place to get those ideas.

sally484 | @sally484 | Sep 21 8:29am

In reply to @cherziggy "I’ve tried Letrozole and anastrozole brand name. The Letrozole destroyed the ulner nerves in both arms..." + (show)

I am on Exemestane right now. I was on Anastrozole and it really made me VERY moody. I am still on the fence as I think they ALL affect your hormones and that makes everything go wonky. I just don't think there's a way to get around the side affects.

sally484 | @sally484 | Sep 21 8:55am

In reply to @dlmdinia "I believe there is a lot to be said about trying different types of AI's including..." + (show)

I can deal pretty much with everything BUT the weight gain. It all settles right in my stomach, which is where I always gain. It really makes me uncomfortable.

sally484 | @sally484 | Sep 21 9:01am

In reply to @celestebradham "I tried anastrozole- did not work. I am on exestamine- joint aches and sleep issue, went..." + (show)

Is the Exemestane causing you any weight gain?

celestebradham | @celestebradham | Sep 21 10:29am

In reply to @cherziggy "I’m on the fence about trying a 3rd AI. First two weren’t tolerable. Please share good..." + (show)

I have always had weight issues… just chubby - I would have to say possibly- if that makes sense. I gained about 5-10 pounds during treatments. And currently stay there or 5 lbs more. Hope that helps. I honestly haven’t worked on losing weight. I am currently eating very healthy.

chickenmom10 | @chickenmom10 | Sep 21 12:47pm

In reply to @cherziggy "I’m glad the letrozole is working for you! I am able to walk and do so..." + (show)

Hello
I am on anastrozole. Started Aug of 2022. With little side effects. I do take my medication right after dinner so it helps with hot flashes, and helps me sleep. A little stiff in the morning but not too bad.