Aromatase Inhibitors: How to choose and manage side effects?

Posted by shebell @shebell, Sep 11, 2024

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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Hello
I was diagnosed in May 2023 with stage 1 her+.
I had a lumpectomy and radiation. I had my first post treatment MRI in march of 2024. Also the required mammogram and ultrasound. The mammogram I had 8 months before being diagnosed missed my tumor so I have no faith in mammograms! I was clear with all 3!
As for the AI’s… I have tried all 3. The asnastrozole triggered carpal/cubital tunnel so I’ve had bilateral surgeries for that. The letrozole gave me such terrible brain fog and vertigo that I was on the point of being housebound. Tried exemestane it affected my optic nerves and made my hands so stiff they were claw like.
I’ve discussed tamoxifen with my oncologist and my general practitioner. They have left the decision up to me. Surveillance only or drugs with surveillance. My GP had advised me not to take the tamoxifen based on my history of side effects. The possibility of blood clots with tamoxifen has made me decide not to take that one as well.
I am due for my annual MRI in March 10 2025. I am counting the days for peace of mind! Praying and positive energy!
Blessings to all of you during our struggles mental and physical.
We have no idea what the chemicals in these drugs are doing inside our bodies. Let me add, I am very mindful of my environment including diet and exercise. I am using every cell of my body and spirit to fight this battle and winning! 💪
All my love to you. Peace my friends ❤️

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Hi
I was diagnosed Oct 2023 er/pr + her 2 neg
Had a lumpectomy and radiation. Finished treatment apr 2 2024.
I did 2 wks of tamoxifen then had a discussion with my drs . Decided to not take anything. I am cancer free as of my 1st mammo post surgery. See my drs every 6 mths. The side effects from those ai drugs are debilitating. It's a personal decision. Do what your gut says. Good luck

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I am 74 also with an Onco score of 11. I did have radiation with no problems but refuse anything else based on your last sentence.
Good luck to us for 20 more years of living!

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Profile picture for katrii @katrii

One thing I have learned, that I didn’t anticipate…was that I can make changes as I go into different stages of healing. I’m on my 3rd type of AI medicine, and after talking quite openly about the emotional/psychological changes in the first two on me, he and I came up with a plan to take a pause for a week, then try Exemestane every other day. What a difference! I know I can pause, I can propose, as I go along. I listen to my back pain, and odd feet/heel pain, and take more time resting. In other words, worrying ahead hasn’t helped me as much as noticing as I go along, and communicating it. I hope that eases those who get anxious (as I do!)…looking forward or reading too much.

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After Anastrozole did not agree with me, I too, am on Exemestane every other day. So far, so good. 9 months and counting. Hair thinning and occasional joint aches. But not like Anastrozole where I had no energy, and joint pain.

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One thing I have learned, that I didn’t anticipate…was that I can make changes as I go into different stages of healing. I’m on my 3rd type of AI medicine, and after talking quite openly about the emotional/psychological changes in the first two on me, he and I came up with a plan to take a pause for a week, then try Exemestane every other day. What a difference! I know I can pause, I can propose, as I go along. I listen to my back pain, and odd feet/heel pain, and take more time resting. In other words, worrying ahead hasn’t helped me as much as noticing as I go along, and communicating it. I hope that eases those who get anxious (as I do!)…looking forward or reading too much.

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I think that you are being very proactive in determining your best future. I am 72 and just had a lumpectomy a week ago. While my lesion was much larger than yours, the margins are clean with 3mm clear. I found the PREDICT algorithm posted elsewhere on this site and using it, I have also decided that further treatment would be more detrimental than I can tolerate.

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Profile picture for cherziggy @cherziggy

I’m glad the letrozole is working for you! I am able to walk and do so every morning at twilight. I look forward to it even though it’s difficult sometimes.
Can I ask if you take the meds at night or in the morning? I heard someone else say that when she changed to taking it before bed was a game changer for her.
Have a good day!

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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.

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Profile picture for cherziggy @cherziggy

I’m on the fence about trying a 3rd AI. First two weren’t tolerable. Please share good or bad experiences. Thank you!

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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.

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Profile picture for celestebradham @celestebradham

I tried anastrozole- did not work. I am on exestamine- joint aches and sleep issue, went off for a bit but back on with less side effects… I also added seeing an acupuncturist ( she’s also a oncologist) which has helped the side effects - she also recommended some supplements. I also walk, healthy yoga and a breathing yoga which has really work! I am not joint ache free, but everything has helped. I’m 61 . I’m okay with my “new” normal.

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Is the Exemestane causing you any weight gain?

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Profile picture for dlmdinia @dlmdinia

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.

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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.

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