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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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lifetraveler | @lifetraveler | Aug 8 6:59am
In reply to @tullynut "I have been lucky in that. I have had no significant side effects from using anastrozole..." + (show)
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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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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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tullynut | @tullynut | Aug 8 7:31am
In reply to @lifetraveler "Hi! @tullynut: Thank you so much for sharing this very valuable information regarding the impact of..." + (show)
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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tullynut | @tullynut | Aug 8 10:39am
In reply to @lifetraveler "Hi! @tullynut: Thank you so much for sharing this very valuable information regarding the impact of..." + (show)
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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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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lifetraveler | @lifetraveler | Aug 8 1:59pm
In reply to @tullynut "Article: hormone therapy for breast cancer linked with lower dementia risk UPMC july 16, 2024 Hormone..." + (show)
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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joyciek | @joyciek | Aug 8 2:10pm

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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msgee | @msgee | Aug 17 8:59pm
In reply to @dianetich "I am on Letrozole and at first I had a dull headache for about a week...." + (show)
Profile picture for dianetich @dianetich

I am on Letrozole and at first I had a dull headache for about a week. That went away but now I am having joint pain and sometimes when I eat, things taste like soap. I had to play around with when I took it as well as when I took it at night, I couldn't sleep. I take it now at noon.

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I have been on Anastrozole for 2.5 years. I was told to take it at bedtime. I had joint pain and could not sleep. I was told to take it every other day and after a meal. Now all I have is some pains in left breast that I had reduction surgery on after my right breast mastectomy.

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gsawatz66 | @gsawatz66 | Aug 30 7:48am

I’m in the exact same situation and I’m not sure what I’m going to do. There are days I feel confident in just being done and other days I feel like I need to fight through the side effects of the drugs. But, I’m not sure that it’s worth it with the way that I feel and does it really make that significant of a change in my fight against the cancer reoccurrence

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cherziggy | @cherziggy | Aug 30 9:12am
In reply to @gsawatz66 "I’m in the exact same situation and I’m not sure what I’m going to do. There..." + (show)
Profile picture for gsawatz66 @gsawatz66

I’m in the exact same situation and I’m not sure what I’m going to do. There are days I feel confident in just being done and other days I feel like I need to fight through the side effects of the drugs. But, I’m not sure that it’s worth it with the way that I feel and does it really make that significant of a change in my fight against the cancer reoccurrence

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That’s my question! Does it really make a difference in reoccurrence? I’ve suffered through some debilitating side effects, some requiring multiple surgeries. Are the chemicals in these big pharma medications doing more harm to my body? Wrecking havoc for sure! I think the answer is yes! I’ve experienced it.
Absolutely the million dollar question! 😘

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dea2xILC | @darack | Aug 31 12:02pm

I made the choice to stop Letrozole in 2020 after lumpectomy and radiation for ILC Stage 2. At the end of 2024 I was diagnosed with ILC Stage 2 in the other breast. Doc says it is a new Cancer and not related to the last one so don't feel bad about stopping the Letrozole. It wouldn't have changed the outcome. Now I am through the second lumpectomy and radiation and taking Exemstrane. It makes me nauseous and depressed. I am trying to allow my body time to adjust by taking 1/2 tablet with dinner. Now I wake up nauseous. This seems like a pretty powerful drug.

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