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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I want to second the comment on trying different manufacturers. I was on a generic anastrozole and on the verge of giving it up because of the terrible side-effects; I refilled the prescription one more time and things got better. Over the month all my bad side-effects went away; my drug store had changed the supplier/manufacturer of the anastrozole they use. I was just lucky. I would not have known that the filler/so called non -active components could make the difference between my ability to take this AI drug I needed.

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Would recommend trying letrozole before stopping the AIs altogether depending on your risk tolerance. My onco was mid range and they told me to skip chemo but that the hormone therapy was a hard requirement, regardless of chemo. I cant take tamoxifen so I'm stuck with the nasty AI side effects for a long time. One onco old me Anastrozole has less side effects than Letrozole, but I know every woman is different and we all respond differently.

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Thanks for this. I've been on letrozole for two years without side effects. I gather about 50% of women can tolerate AIs although many cannot. I think is worth investigating to see where you are, as everyone is different. My very rare breast cancer (neuroendocrine tumor) is not well understood, nor is there specific treatment. I had lumpectomy, radiation, and no chemo. I've outlived my initial prognosis of 1-2 years. Both my oncologist and I think the AI is pretty much the only thing keeping the cancer at bay. I'm grateful for what for me has been an easy treatment so far.

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Would recommend trying letrozole before stopping the AIs altogether depending on your risk tolerance. My onco was mid range and they told me to skip chemo but that the hormone therapy was a hard requirement, regardless of chemo. I cant take tamoxifen so I'm stuck with the nasty AI side effects for a long time. One onco old me Anastrozole has less side effects than Letrozole, but I know every woman is different and we all respond differently.

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I switched to letrozole then switched manufacturers then did brand name. In the end, I did find a generic that I could tolerate. There are things you can try....switching meds, manufacturer or doing brand name.

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Thank you Laurie! I will check additional sites. I have talked with my oncologist and we are exploring other drug options. They all have such daunting side effects. I am turning 60 this year and a very active runner and weight lifter with no prior health issues so the medication struggles are a new journey for me and certainly not one for the faint of heart🥴

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@shebell,

You might want to check out the following similar discussion:
Stopping AI and Starting Tamoxifen
https://connect.mayoclinic.org/discussion/stopping-ai-and-starting-tamoxifen/
Stop the Madness (stopped taking my AIs)
https://connect.mayoclinic.org/discussion/stop-the-madness/
I tried AIs and Tamoxifen and after serious discussion with provider and my recurrence rate, I decided to take the risk. I also had chemo, which reduced the recurrence rate.

Have you discussed the side effects or not taking any medications with your oncologist?

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