Letrozole and Neuropathy

Posted by vtgal @vtgal, Apr 24, 2023

Has anyone experienced neuropathy after starting Letrazole? I was diagnosed with neuropathy soon after starting on Letrazole. It has moved from my feet to my hands now. It is disabling and painful. Thanks

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Profile picture for dlmdinia @dlmdinia

I was on Letrozole for 9 months before chemo. The only side effect I had was hot flashes. My neuropathy is chemo induced and improved somewhat after chemo finished. I'm off Letrozole in two months and looking forward to some (hopefully) real improvements in the next year. I'm also transitioning off Prolia which I think may be sharing the blame for a lot of my joint issues. I'm blaming Letrozole (or any AI, I've been on all 3) for insomnia, brain fog, elevated lipid levels, moodiness, inability to lose weight, and probably more. But after the initial improvement of my neuropathy after finishing chemo (about a year), my neuropathy has worsened only slightly in the last year. (I finished chemo 4 years ago).

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Hope you've kept records (journal) of your experiences. Hope it helps others down the road that truly have issues with the gold standard of treatment at the time it happens. Been there, done that and it's been since 1997.......
3 times thus far.

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Profile picture for Gini Pariseau @ginip

I find no matter what your status of dealing with breast Cancer is, there is always something in the wind that might give you some definition or clarity.
After currently being on a 3 week hiatus from Anestrozole because of side effects, I was so hopeful to find a reasonable alternative to offer in my upcoming phone conference with my nurse oncologist on this coming Monday.

My side effects were/are worthy of my challenge to continuing on this Anestrozole path. In another medical related visit this past week my mention of my side effects were each delicately suggested as a random result of everyday maladies.
It was as if part of the success of AI relied on making my brain simply absorb this dose of logic rather than simply consider it in my collection of information. I gratefully accepted this feedback but filed it in my brain as more of the - Bengay/Tylenol Approach to AI Side Effects - that carry as much weight as YOU deem them of value.

Below I am sharing a Clinical Study that might deserve a space in your consideration. I will certainly bring it up for discussion on my Monday call.
https://www.nature.com/articles/s41416-019-0435-4

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Gini - I am wondering if you ever found an AI that you could tolerate? I know this is an old post but I am so frustrated with my situation and your post resonated with me - especially the part about your side effects being suggested as a result of everyday maladies. It's as if the oncologist refuses to believe this drug could cause my problems. Hope you found some relief.

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Profile picture for gemjaynes @gemjaynes

I know my response is months late, but I had exactly the same experience. 3 days after starting Letrozole, my heretofore insignificant neuropathy, which was only in my toes and fading, significantly worsened to involve the bottoms of my entire foot, my hands, and my balance. My doc's nurse told me it is "unlikely" that it was the Letrozole after only 3 days. I wrote back and said, okay, assuming it's not the Letrozole, I've still got the problem and what could be causing it? I went through this with the steroid infusion, told for weeks that my 3 days of horrible symptoms, including 72 hours of night sweats, were depression. That is stupid on its face. I also was not warned about the ethanol in the docetaxel solution, and had to figure out on my own that I was drunk after being sober for 13 years. Fortunately, my husband always drove, but involuntary intoxication is a defense to drunk driving or, God forbid, killing someone with your car. Your oncologist or hospital will have no such defense. Oncologists are shocked -- shocked! -- by the breast cancer patient experience. Frankly, I'm disgusted that they're shocked. Did they listen to their patients at all during the 20-30 years they were practicing oncologists before breast cancer happened to them? The oncologists are also shocked when they are not listened to, either. Some of those oncologists try to monetize their experience by starting Youtube channels and writing books. They think, since they're oncologists, they're uniquely positioned to explain the things that happen to all of us.

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What did you end up doing with respect to Letrazole? I've been on for 2 years and just recently have gotten terribly neuropathy. The doctors are giving lots of scans to be sure it's not a recurrence but I think it's likely the letrazole. I don't know what to do though...

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Taking a break from Letrozole is not a bad idea according to one research. It potentially reverses drug resistance of cancer cells. I’ve been on Letrozole for only 3 months, but intend to take a break after one year.
https://pmc.ncbi.nlm.nih.gov/articles/PMC2491346/

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I experienced an increase in the severity of my neuropathy while in Letrozole. I took a break for 3 weeks and it did help. The neuropathy in my feet got better. I’ve been taking Letrozole again for a little over a month and my neuropathy is ok. My oncologist didn’t think there was a correlation but I believe there is.

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Profile picture for vtgal @vtgal

I believe neuropathy may be hereditary as well. My mom had it but later in life. I’m 59 and she didn’t have it til about 80. I was thinking the Letrazole May have triggered it. I came off of it and am currently not taking any meds. Thanks for your reply.

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@vtgal

Did you neuropathy go away after you stopped Letrozole? How long weee you on it?

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Profile picture for hillaryd @hillaryd

I experienced an increase in the severity of my neuropathy while in Letrozole. I took a break for 3 weeks and it did help. The neuropathy in my feet got better. I’ve been taking Letrozole again for a little over a month and my neuropathy is ok. My oncologist didn’t think there was a correlation but I believe there is.

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There absolutely is a link to peripheral neuropathy being caused by A.I.s !!!! I started getting pain and numbness in my toes and told my PCP. She immediately said I must have diabetes. The blood tests showed that I don't. My medication list was right in front of her! It is Tamoxifen. If you Google either Letrozole or Tamoxifen, causing peripheral neuropathy, there it is! Now it is in my fingers. I have only known for 3 weeks. I am now looking into data regarding long term effects. Anyone with information on this?

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