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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Profile picture for cherziggy @cherziggy

I’ve tried Letrozole and anastrozole brand name. The Letrozole destroyed the ulner nerves in both arms after 3 weeks of taking it. The anastrozole made my joints hurt and the brain fog was unbearable. I’m really skeptical now about trying the 3rd one!
Did you find one to work for you?

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Hi there, I have ulnar nerve damage from radiation. Causing my right hand to be partially numb and weak. I also have lymphodeama in the same arm. I am now on Exemastane, generic, which is reducing my cancer load quite significantly. I have never heard of an AI causing Ulnar nerve damage. Is that common??

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Profile picture for lifetraveler @lifetraveler

Hi! Myoga, my friend:

Thank you so much for your kind words of encouragement! I truly feel that you are one of my old friends now, even though we "met" in spirit during this unexpected journey of fighting the disease of BC. Meeting you and other comrades sharing this forum becomes one of my blessings in disguise in my life. Thank you!

Back in November of 2023 when my PCP first identified this strange lump growing on me during my annual physical exam, suddenly I felt like a wayfaring stranger travelling through this world of woe; thus I gave myself this username to reflect my own mentality at that time. Just as they say, the rest is history:) So here we are, encouraging one another along this journey of life~~

Wishing you all a blessed journey ahead with better health, hope, peace in mind and love in heart to enjoy your loved ones!

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Dear Lifetraveler:
I feel the same way, my friend! Thank you again for being here! Sending with Love.

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Profile picture for myoga @myoga

I'm too grateful to have connected with you on this forum. It's a comfort to have true friends here to lean on while fighting this disease. Thank you for such a kind response. I love your user's name Lifetraveler. (I think I said it before) HUGS

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Hi! Myoga, my friend:

Thank you so much for your kind words of encouragement! I truly feel that you are one of my old friends now, even though we "met" in spirit during this unexpected journey of fighting the disease of BC. Meeting you and other comrades sharing this forum becomes one of my blessings in disguise in my life. Thank you!

Back in November of 2023 when my PCP first identified this strange lump growing on me during my annual physical exam, suddenly I felt like a wayfaring stranger travelling through this world of woe; thus I gave myself this username to reflect my own mentality at that time. Just as they say, the rest is history:) So here we are, encouraging one another along this journey of life~~

Wishing you all a blessed journey ahead with better health, hope, peace in mind and love in heart to enjoy your loved ones!

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Profile picture for lifetraveler @lifetraveler

Hi! @myoga:

Thank you so much for sharing this link and your insights!

I, too, read some articles regarding the possible correlation between taking AI medication and dementia, and concluded that the results are mixed or inclusive at this point. I am grateful to hear from you and knowing that you've been recovering steadily well comforts me:)

Better journey ahead, my friend!

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I'm too grateful to have connected with you on this forum. It's a comfort to have true friends here to lean on while fighting this disease. Thank you for such a kind response. I love your user's name Lifetraveler. (I think I said it before) HUGS

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Profile picture for myoga @myoga

I think this is the article she mentioned. As I search, there are quite a few articles pointing to opposite direction. Nothing is concrete about this finding, but we can always hope. The key is looking for credible websites, ethical statements, and conflict of interest statements.
https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2821165
https://pmc.ncbi.nlm.nih.gov/articles/PMC11803411/

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Hi! @myoga:

Thank you so much for sharing this link and your insights!

I, too, read some articles regarding the possible correlation between taking AI medication and dementia, and concluded that the results are mixed or inclusive at this point. I am grateful to hear from you and knowing that you've been recovering steadily well comforts me:)

Better journey ahead, my friend!

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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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I think this is the article she mentioned. As I search, there are quite a few articles pointing to opposite direction. Nothing is concrete about this finding, but we can always hope. The key is looking for credible websites, ethical statements, and conflict of interest statements.
https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2821165
https://pmc.ncbi.nlm.nih.gov/articles/PMC11803411/

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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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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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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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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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