Stopped Letrozole this week, how long before side effects go away?

Posted by lsouth56 @lsouth56, May 25, 2025

With support from my oncologist, I stopped Letrozole this week after 2 1/2 years. I literally could feel my vitality being sucked out of my body and the pain in my joints and bones are no joke. I have had two knee injuries in the last 6 months that feel caused by weak muscles/tendons/ligaments.

I know there are similar stories, my question is if you experienced this type of side effect and stopped taking Letrozole, how long did it take (if ever!) for them to stop? Did you regain strength afterwards?

Thanks for feedback, folks. Hang in there!

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Profile picture for cat168 @cat168

@luckbme
I don’t know much about it, but I’m running out of aromatase inhibitors I can take so I’m trying to find options. It’s a non-traditional medicine supplement. I think it’s naturopathic. It’s called diindolylmethane, DIM for short.
There are discussion groups on the web about it.
My oncologist told me not to give up on AIs, and said he didn’t know about DIM but that I could take it.

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@cat168
I’ve run out of AIs and Tamoxifen side effects are just as bad. I will try a reduced dosage of Tamoxifen before totally giving up. My oncologist said 50% of women Refuse to take AIs. He forgot to mention they can’t take them due to the side effects.
I asked him about DIM and I got the feeling he only supports medications created and tested by large drug companies. I guess that’s his job. He couldn’t tell me about DIM even though I’m sure he’s heard of it.
I haven’t seen sites that discuss DIM, can you send a link please?

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Profile picture for jesussister @jesussister

Hi. That's what concerned me. The never checked my estrogen. I sometime had hot flashes. My new oncologist for this second journey are checking my cancer antigens. This may be the estrogen check. Follow up with your oncologist to confirm and insure they check the antigens. Wishing you the best and healing.

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@jesussister
You raise a question I've also wondered about, namely, what are my estrogen levels on letrozole. When I asked my oncology PA about testing my estrogen levels, she said they didn't do this, especially for post-menopausal women like me. I don't remember her exact explanation, but think it included something about the testing of estrogen levels being unreliable.

If anyone has actually worked with their oncologist or another doctor to test estrogen while on letrozole or another aromatase inhibitor, that would be helpful to hear. I think women who are using hormone replacement therapy may have their hormones tested for treatment recommendations, but many of us who have estrogen-positive breast cancer have been discouraged from using natural hormone replacement therapy.

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Profile picture for cat168 @cat168

@cat168
I’ve run out of AIs and Tamoxifen side effects are just as bad. I will try a reduced dosage of Tamoxifen before totally giving up. My oncologist said 50% of women Refuse to take AIs. He forgot to mention they can’t take them due to the side effects.
I asked him about DIM and I got the feeling he only supports medications created and tested by large drug companies. I guess that’s his job. He couldn’t tell me about DIM even though I’m sure he’s heard of it.
I haven’t seen sites that discuss DIM, can you send a link please?

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@cat168
I took DIM intermittently before my breast cancer diagnosis and wish I'd been more disciplined about taking it. Regardless, though, it didn't prevent my breast cancer. Still, it's a supplement I'd like to look into more but have so many other issues to research before that one!

I think most oncologists will not be very knowledgeable about DIM or if they are, they will be cautious about recommending it. I found a study that did look at DIM and breast cancer and tamoxifen:
https://aacrjournals.org/cebp/article/26/3/435/71367/Effect-of-Diindolylmethane-on-Estrogen-related

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Lumpectomy, then letrozole, then radiation in December 2025. Fatigue was major side effect so I thought I had dodged a bullet. Then trigger fingers on both hands erupted the same day about a month ago. Then all fingers hurt. Then left thigh felt like it would collapse under me a few times a day. Oncologist changed me to Anastrozole yesterday. Should I expect 4-6 weeks before improvement?

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Profile picture for joannebt @joannebt

Lumpectomy, then letrozole, then radiation in December 2025. Fatigue was major side effect so I thought I had dodged a bullet. Then trigger fingers on both hands erupted the same day about a month ago. Then all fingers hurt. Then left thigh felt like it would collapse under me a few times a day. Oncologist changed me to Anastrozole yesterday. Should I expect 4-6 weeks before improvement?

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@joannebt, welcome. Have you noticed any changes in the couple weeks since you've switched medications?

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Profile picture for keywestsj @keywestsj

I'll be 80 in 2 months and supposed to start taking Letrozole after radiation. I'm thinking about refusing to take it. I have other issues(Afib for one) from what I've been reading about side effects I thinking I'll just take my chances and pray. Does anyone here wishes they had never taken this drug? Any imput or advice would be deeply appreciated.

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@keywestsj
I'm 81 years old I had surgery in June they put me on letrozole within the first 6 weeks I was walking slowly for the very first time and there was a big pop and explosion in my knee of pain that I never had before in my life. Now, my shoulders are affected. Can't move my arms without excutiating pain. I called my doctor. I got off the letrozole. I don't see the need to be on any of those drugs as it was a mastectomy.noyca lumpectomy. I had a onco DX score of 17!!
I was told it is a slow growing cancer I have less than 10% of having the cancer return and it has really taken away quality of life being on this drug. I couldn't walk for literally one full week and the pain subsided, but it took almost another 4 weeks to be able to walk normally, so I cannot foresee ever taking one of these drugs again and I think it's an intelligent quality of life decision not to take any of them. I called my oncologist about it & spoke to her nurse. That was 2 weeks ago and I haven't heard back yet.

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Profile picture for bebrinkman302 @bebrinkman302

@keywestsj
I'm 81 years old I had surgery in June they put me on letrozole within the first 6 weeks I was walking slowly for the very first time and there was a big pop and explosion in my knee of pain that I never had before in my life. Now, my shoulders are affected. Can't move my arms without excutiating pain. I called my doctor. I got off the letrozole. I don't see the need to be on any of those drugs as it was a mastectomy.noyca lumpectomy. I had a onco DX score of 17!!
I was told it is a slow growing cancer I have less than 10% of having the cancer return and it has really taken away quality of life being on this drug. I couldn't walk for literally one full week and the pain subsided, but it took almost another 4 weeks to be able to walk normally, so I cannot foresee ever taking one of these drugs again and I think it's an intelligent quality of life decision not to take any of them. I called my oncologist about it & spoke to her nurse. That was 2 weeks ago and I haven't heard back yet.

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@bebrinkman302
I'm so happy you made that decision, I wish that they had discussed the option to not take the medication in the first place. I pray that your health continues to improve.

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