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?

Interested in more discussions like this? Go to the Breast Cancer Support Group.

Revent mastectomy and trying to decide about further treatment. What are my odds if I do nothing? I feel so good right now, I dont want to be sick.

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Profile picture for tullynut @tullynut

Article: hormone therapy for breast cancer linked with lower dementia risk UPMC july 16, 2024

Hormone modulating therapy used for the treatment of breast. Cancer was associated with a 7% lower risk of developing Alzheimer’s disease and related dementias later in life according to a new study published today in JAMA network open.

Authors include: MODUGNO, CAI.

18,808 patients fitted criteria.

Search “hormone therapy for breast cancer linked with lower dementia risk “and you should be linked to the article with that title

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Hi! @tullynut

Thank you so much for the detailed info!

Onward spring to the better journey ahead for us all:)

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Profile picture for lifetraveler @lifetraveler

Hi! @tullynut:

Thank you so much for sharing this very valuable information regarding the impact of taking AI medication on the illness of dementia!

Could you please also share the link to this article, please? I am wondering when they did this research of comparing those ladies that were taking AI medications vs the ladies that did not take any AI medications, did they - by any chance - specify any particular aromatase inhibitors? For I am curious about whether taking different aromatase inhibitors makes any difference in regard to the impact on dementia? For those AI medications have different structures in them - even though their main function is the same...

Thanks again for helping us, comrade! Best wishes to all on this journey!

Jump to this post

Article: hormone therapy for breast cancer linked with lower dementia risk UPMC july 16, 2024

Hormone modulating therapy used for the treatment of breast. Cancer was associated with a 7% lower risk of developing Alzheimer’s disease and related dementias later in life according to a new study published today in JAMA network open.

Authors include: MODUGNO, CAI.

18,808 patients fitted criteria.

Search “hormone therapy for breast cancer linked with lower dementia risk “and you should be linked to the article with that title

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Profile picture for lifetraveler @lifetraveler

Hi! @tullynut:

Thank you so much for sharing this very valuable information regarding the impact of taking AI medication on the illness of dementia!

Could you please also share the link to this article, please? I am wondering when they did this research of comparing those ladies that were taking AI medications vs the ladies that did not take any AI medications, did they - by any chance - specify any particular aromatase inhibitors? For I am curious about whether taking different aromatase inhibitors makes any difference in regard to the impact on dementia? For those AI medications have different structures in them - even though their main function is the same...

Thanks again for helping us, comrade! Best wishes to all on this journey!

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All I can tell you is that the article cited a study published in JAMA and was done by the University of Pittsburgh. I think it’s fairly recent and would suspect if you do a search on JAMA you may be able to find there. I have seen it cited a couple of times online. I used to live in Pittsburgh so I’m confident that studies done at the university of Pittsburgh are well run. Hope that helps.

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Profile picture for tullynut @tullynut

I have been lucky in that. I have had no significant side effects from using anastrozole for the past five years. Try to keep a close eye on studies on aromatase inhibitors, and other medications that I take. I have a strong family history of dementia. Much to my surprise in researching dementia I discovered a university of Pittsburgh Study entitled “potential protective effects of AI against dementia “published in JAMA. They’re findings that are very preliminary but statistically significant suggest that AI use was associated with a 7% lower risk of developing Alzheimer’s disease and related dimensions. They looked at 18,000 women 65 years and older and in that group 76.1% used AI’s. So the study seems legitimate. Not everyone can tolerate AI medications and I feel that I am particularly lucky in that respect. I think I can honestly say that other than having greater difficulty losing weight, that may be one side effect, I really can’t tell anything different that seems to be related to the AI use. It is a very individual thing and I am grateful that I am able to tolerate the medication.

When I last met with my oncologist, we discussed continue use of the AI medication. He was pleased that I was able to do so and fully recognize that many people are not. He did say at that meeting a couple of years back that current research was suggesting that longer-term use of AI medication seem to be helpful, but it was all very preliminary. And to that point all very individualized because if you can’t tolerate it you can’t tolerate it.

Jump to this post

Hi! @tullynut:

Thank you so much for sharing this very valuable information regarding the impact of taking AI medication on the illness of dementia!

Could you please also share the link to this article, please? I am wondering when they did this research of comparing those ladies that were taking AI medications vs the ladies that did not take any AI medications, did they - by any chance - specify any particular aromatase inhibitors? For I am curious about whether taking different aromatase inhibitors makes any difference in regard to the impact on dementia? For those AI medications have different structures in them - even though their main function is the same...

Thanks again for helping us, comrade! Best wishes to all on this journey!

REPLY

I have been lucky in that. I have had no significant side effects from using anastrozole for the past five years. Try to keep a close eye on studies on aromatase inhibitors, and other medications that I take. I have a strong family history of dementia. Much to my surprise in researching dementia I discovered a university of Pittsburgh Study entitled “potential protective effects of AI against dementia “published in JAMA. They’re findings that are very preliminary but statistically significant suggest that AI use was associated with a 7% lower risk of developing Alzheimer’s disease and related dimensions. They looked at 18,000 women 65 years and older and in that group 76.1% used AI’s. So the study seems legitimate. Not everyone can tolerate AI medications and I feel that I am particularly lucky in that respect. I think I can honestly say that other than having greater difficulty losing weight, that may be one side effect, I really can’t tell anything different that seems to be related to the AI use. It is a very individual thing and I am grateful that I am able to tolerate the medication.

When I last met with my oncologist, we discussed continue use of the AI medication. He was pleased that I was able to do so and fully recognize that many people are not. He did say at that meeting a couple of years back that current research was suggesting that longer-term use of AI medication seem to be helpful, but it was all very preliminary. And to that point all very individualized because if you can’t tolerate it you can’t tolerate it.

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Profile picture for maryk206 @maryk206

Yes - the side effects of some of our best cancer medications are really no fun. I'm taking anastrozole and have found walking for 30min+ each day really helps for joint pain (motion is lotion!) as well as my overall fitness and mental health. I also do acupuncture which helps with joint pain and hot flashes. I began drinking a basic bagged melatonin tea that you can buy at the grocery store at night to help me fall sleep and then learned from my physician that it's actually the catnip in the tea that is helping with sleep. I swear by it. I trust my oncology team's expertise and I also look at medical studies on my own and bring questions when I have them. While our diagnoses can be similar, each patient is unique in how their body reacts to the medication, tolerance to side effects and varied quality/length-of-life perspectives. I wish you the best in finding what works best for you.

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If we are allowed to mention brands on this loop, I would appreciate knowing the brand of the melatonin tea. Thank you!

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Profile picture for peggydobbs @peggydobbs

I started AIs in Dec 2024. First was Letrozole--gave me terrible tinnitus, then Exemestane, again terrible tinnitus. Med. Onco. suggested taking Exemestane every other day, but that didn't help much. Switched to Anastrozole in March 2025. No problems at all. I never tried Taxomifen. I have no idea why I got along with Anastrozle, but not with the other two. Also there's Fulvestrant, but it's injectable (not a pill)--never tried it.

Also, Anastrozole seems to disturb my sleep, so I take it in the morning. I also take Kisqali (ribociclib--not an AI, but a CDK4/6 inhibitor because I have a fairly aggressive cancer) which seems to make me tired, so I take it at night.

My advice: don't give up on AIs until you've tried them all. Also see if morning dosing or night works better for you.

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Did the tinnitus go away on when you took the Exemestane?

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Profile picture for maryk206 @maryk206

Yes - the side effects of some of our best cancer medications are really no fun. I'm taking anastrozole and have found walking for 30min+ each day really helps for joint pain (motion is lotion!) as well as my overall fitness and mental health. I also do acupuncture which helps with joint pain and hot flashes. I began drinking a basic bagged melatonin tea that you can buy at the grocery store at night to help me fall sleep and then learned from my physician that it's actually the catnip in the tea that is helping with sleep. I swear by it. I trust my oncology team's expertise and I also look at medical studies on my own and bring questions when I have them. While our diagnoses can be similar, each patient is unique in how their body reacts to the medication, tolerance to side effects and varied quality/length-of-life perspectives. I wish you the best in finding what works best for you.

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Thank You wishing you continued great outcomes.

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