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 sharon44r @sharon44r

Now the doctors are telling you to stay on it 10 years, meaning forever

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I have been on them for 5 years.................that's long enough!

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After 24 years “cancer free”, I developed a rather large lump that was ignored for well over a year but was finally acknowledged after seeing Ob/Gyn for endometriosis (at age 78 following MRI when hospitalized w/pneumonia). I was sent through a battery of tests/scans/biopsy and found great oncologist/surgeon. I am taking letrozole also without any problems thus far (2mos.) Important to get doctor/oncoligist/surgeon you are comfortable with. I was initially told I would need mastectomy but am now going to have lumpectomy once tumor shrinks from taking letrozole, in 6-9 months. Wishing you a healthy outcome and proper guidance for treatment!

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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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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 just had lumpectomy last week 1.2 cm stage 1 no lymph nodes no margins!
E&P positive - her2-neg I have decided on 5 day radiation with No hormone receptor pills
2025!!! Should have much better options with less side effects.

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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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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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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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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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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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