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

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

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@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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@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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@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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So many here have mentioned that the AIs reduce the recurrence rate by 50%. I have been told that as well, but isn't that just a general statement? I don’t know exactly how to say this in mathematical terms, but your personal type of cancer, lymph node involvement, etc all come into play and ultimately lower that number.

I’m saying this because so many on this site have a better understanding than I have, and can help me figure out- or better weigh my options with these drugs.

I had two tumors in my right breast, stage one and stage 2 triple positive ductal carcinoma. So chemo, lumpectomy, radiation and now 5 years of AIs. I am currently cancer free, and I’ve had some issues with the medication. I don’t really want to take it. I took anastrzole first, had some leg pain and switched to extremestan gained weight, and now back to anastrazole. After going through all this I don’t want to essentially waste those efforts by not completing the treatment, but if the recurrence rate is a much lower number I’d rather be comfortable at 73.

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@flatland

So many here have mentioned that the AIs reduce the recurrence rate by 50%. I have been told that as well, but isn't that just a general statement? I don’t know exactly how to say this in mathematical terms, but your personal type of cancer, lymph node involvement, etc all come into play and ultimately lower that number.

I’m saying this because so many on this site have a better understanding than I have, and can help me figure out- or better weigh my options with these drugs.

I had two tumors in my right breast, stage one and stage 2 triple positive ductal carcinoma. So chemo, lumpectomy, radiation and now 5 years of AIs. I am currently cancer free, and I’ve had some issues with the medication. I don’t really want to take it. I took anastrzole first, had some leg pain and switched to extremestan gained weight, and now back to anastrazole. After going through all this I don’t want to essentially waste those efforts by not completing the treatment, but if the recurrence rate is a much lower number I’d rather be comfortable at 73.

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All I can tell you is from my experiences. I’ve tried all three of the AI drugs and all three gave me debilitating side effects. My oncologist offered tamoxifen but left the decision up to me. I am currently not taking any blockers. My quality of life is better.
I’m 70 and my tumor her+ stage 1. Lumpectomy and radiation.
Good luck to you! ❤️

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@sharon44r

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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Thank you for saying this about tamoxifen! I have a bottle in my drawer but like you there is a little voice in my head telling me no.

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@sharon44r

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

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Wegovy is the only brand name that is coming to mind for me right now. GLP – one is the class of drugs, they are usually injectables and pricey. What I was told by chemotherapy doctor was that they are almost all hormone based and for me, a breast cancer patient with ER positive PR positive breast cancer prior to the mastectomy, I’m not to take any hormone based meds like that. I talked to my primary care doctor, who used to work in a cancer center, and he said there few weight loss medication’s that are not hormone based. Phentermine was one of the older medication‘s. That is not hormone based. He said the problem is it doesn’t work well for everyone, but fortunately it worked for me. It was part of the old Fen/Phen medication that was taken off the market many years ago. It was the part of that blend that was OK, but not as effective by itself as it was when added into that older cocktail.

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