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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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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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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@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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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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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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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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So it's the letrozole that's giving me brain fog and wobbliness. I thought I was getting dementia.

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@shirls45

So it's the letrozole that's giving me brain fog and wobbliness. I thought I was getting dementia.

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Please, please, see your doctor. If it is indeed the letrozole that will be fixed by changing, discontinuing, or reducing the drug.
How long have you been taking letrozole?

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@auntieoakley

Please, please, see your doctor. If it is indeed the letrozole that will be fixed by changing, discontinuing, or reducing the drug.
How long have you been taking letrozole?

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About 3 weeks. Get the occasional hot flash but that could be the central heating which we haven't found the sweet spot for yet. But I had a fall yesterday unhooking my dressing gown from the door and getting up was a big problem and took an hour as I have no muscle strength. But is it the letrozole or old age? I'm 79. Had a lumpectomy a month ago and about to have radiation.

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@shirls45

So it's the letrozole that's giving me brain fog and wobbliness. I thought I was getting dementia.

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Do the AI Inhibitors cause brain fog and bad memory?? I, like you, thought dementia was setting in!! It's very scary and embarrassing, to say the least!!

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