Letrazole and Neuropathy

Hi @vtgal, I already had a hereditary neuropathy when I started letrozole and kisqali at the same time. I get random fleeting pains most commonly in my feet and at night when in the recliner or bed, but I noticed after starting those two meds, the pains hit randomly in other parts of my legs and more frequently. It' really hurts, but it typically only lasts a few seconds to a couple minutes so it's tolerable and I don't take anything for it. I do not know which med is responsible or perhaps both. In my hands I mostly have numbness, but I had that already. I also felt my restless leg syndrome increased after starting those meds. I hope it subsides for you as your body gets more used to the med. Best of luck.

I stopped that drug. Got to where I could barely walk. Very painful. On tamofin mow and doing much better.

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.

I stopped taking it as well but didn’t go onto any other drug.

I knew my rare type of neuropathy (HNPP) was hereditary when it was confirmed by a very expensive genetic test my son took 20 years ago. It explained his issues and my neuropathy that was listed as unknown cause up to that point. Best of luck.

I too already had neuropathy of feet and hands. Started Letrozole and on 3rd day got TN - Trigeminal neuralgia - a form of neuropathy that feels have is an ice pick is stabbing your ear with pains in jaw and ears. I think it was caused by the fact that I was eating a lot of soy. Read it is not good to eat a lot of soy with letrozole. I've stopped letrozole and the pain is slowly residing. Doctor insisted can't get reaction from letrozole so fast. Seems lots of others too though. Good luck.

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.

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.

You are right! No provider I have seen really knows what my Physical and mental being has been going through. And I still have know answers. So, I have changed my thinking.

ACCEPT
MANAGE
ADAPT

Sorry
I responded in regular thread instead of replying to you