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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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sharon44r | @sharon44r | Jan 7, 2025
In reply to @kaykerz "I am 74 also with an Onco score of 11. I did have radiation with no..." + (show)
Profile picture for kaykerz @kaykerz

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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I also had score of 11. Had invasive lobular multi foci (2) next to each other , got lumpectomy , margins clear, and opted for radiation, since I heard those meds are hard to stay on, and I have enough issues without them.
They want me to take tamoxifen since I have osteoporosis. The pills are on my counter, but something is telling me not to take them.

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sharon44r | @sharon44r | Jan 7, 2025
In reply to @tullynut "I have been on Anastrazole for 5+ years now. ER+ breast cancer. 19 lymph nodes removed..." + (show)
Profile picture for tullynut @tullynut

I have been on Anastrazole for 5+ years now. ER+ breast cancer. 19 lymph nodes removed at age 68. The Anastrazole reduces my risk of recurrence of breast cancer by at least 50% my oncologist tells me. Now they are supporting continued use of AI meds if patient can tolerate and that is my plan. Other than being very difficult to lose weight (common with estrogen suppressant meds) I have had no other issues. I have worked with my pcp to take meds that are NOT hormone based ( the new wonder diet drugs are hormone based) and I Have lost 40 pounds since initial diagnosis. I want to lose another 20 pounds. The chemo And breast docs both agree that weight reduction and continued use of anastrazole will reduce my risk of recurrence. Pre versus post menopausal status may make a big difference so careful discussion with doctors is critical. JMHO!

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What are the wonder diet drugs, that a hormone based?

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Chris, Volunteer Mentor | @auntieoakley | Jan 6, 2025
In reply to @shirls45 "About 3 weeks. Get the occasional hot flash but that could be the central heating which..." + (show)
Profile picture for shirls45 @shirls45

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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Since you are only talking about three weeks on the medicine, it should be pretty straightforward to know if it is the medicine or not.
Did the muscle weakness and the brain fog and memory issues start in the last three weeks?

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cw2024 | @cw2024 | Jan 6, 2025
In reply to @shirls45 "So it's the letrozole that's giving me brain fog and wobbliness. I thought I was getting..." + (show)
Profile picture for shirls45 @shirls45

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

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Have a check up to ensure that it is not really dementia

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cherziggy | @cherziggy | Jan 6, 2025

I have made the choice to not take these. After 18 mos of trial and error.
Blessings to you ❤️

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shirls45 | @shirls45 | Jan 6, 2025
In reply to @sally484 "Do the AI Inhibitors cause brain fog and bad memory?? I, like you, thought dementia was..." + (show)
Profile picture for sally484 @sally484

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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Just had another fall. Not hurt but it's such a mission to get up again. Also get very anxious when I forget a word, even in my own head. It always comes back when I'm relaxed but it's humiliating in conversation. I'm going to ask the doctor if I can stop the letrozole for a while to see if that's what is causing these symptoms.

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sally484 | @sally484 | Jan 6, 2025
In reply to @shirls45 "So it's the letrozole that's giving me brain fog and wobbliness. I thought I was getting..." + (show)
Profile picture for shirls45 @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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shirls45 | @shirls45 | Jan 6, 2025
In reply to @auntieoakley "Please, please, see your doctor. If it is indeed the letrozole that will be fixed by..." + (show)
Profile picture for Chris, Volunteer Mentor @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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Mentor
Chris, Volunteer Mentor | @auntieoakley | Jan 6, 2025
In reply to @shirls45 "So it's the letrozole that's giving me brain fog and wobbliness. I thought I was getting..." + (show)
Profile picture for shirls45 @shirls45

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

Jump to this post

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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shirls45 | @shirls45 | Jan 6, 2025

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

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