Letrazole and Neuropathy

No te preocupes -- no need to apologize. I listened to a lot of Youtubes put out by clueless oncologists who became breast cancer patients, because I was too brain fogged during chemo to read.

I know it's terrible to take 1 medication to hep you and then get another illness. I think that sometimes we are looking for reasons why, but maybe best to continue meds if needed and see if reaction disappears. I was on letrozole and couldn't stop crying. After 2 weeks my doctor changed my med. Then I heard os someone who had a reaction and was told to stay on med and reaction later went away. I think each case may be different because we all are also taking other medications and unfortunately have other coexisting problems...maybe not always causation by med

It's over a year later and the problem still has gone away. I'm on a new med now and bad side effects but nothing like the letrozole.

October 24...late, but experiencing the same. Debilitating pain in joints and muscles, but the worst is the neuropathy in my hands. Excruciating pain. Oncologist said take an aleve with the dose. Did nothing. Next he said to take cymbalta. It's been just a few days on cymbalta and no relief but I read it may take weeks for it to kick in. Now I understand why people give up on this drug. It is vicious and feels so toxic.

@jnorki, is the cymbalta helping? Have you discussed switching to a different aromatase inhibitor with your oncologist?

No help. I've read Cymbalta may take weeks. Not sure I'll endure for several weeks, but taking one day at a time. No pain relief whatsoever. My oncologist wanted to try this path before a new aromatase inhibitor.

I'm looking for more holistic remedies as well - I've read some info on Turkey Tail Mushrooms...still looking for alternatives.

Letrozole kicked my butt! Hip, lower back pain, mood swings, so we switched to Anastrozole. All pains above fairly contained with big doses of Motrin, but my THUMBS!! omg. Yesterday saw the Ortho Surgeon, who gave me shots in my thumbs, and said I’m a good candidate for “thumb joint replacement” surgery—recovery 9-12 months, very painful. I want to quit all the drugs. Anyone know statistically how likely a 71 yo is to get cancer again if I just DO NOTHING?!

On the 5th day of taking Letrozole, I felt an ice pick has pierced my ear. Most pain I had ever experienced. Immediate stopped and went onto Anastrozole which left me with trigger fingers. It's been 2 years and it is fading but not gone. Then my cancered metastisized to the lungs and I was put on tamoxifen. It wasn't bad but when I got a bioposy that could identify the type cancer I had, it was triple negative whose only medicine is chemo. Now that I'm on nothing, I'm feeling much better. I've also become a vegan which is difficult for me since I don't like tufu, etc. Also gave up wine, coke, etc. My inflamation has gone down, my digestion is great, sleeping and gut all OK. I'm also walking more and given that i'm 82, I'm not going to take any more medicines. The health book that has been valuable to me is "How Not to Die" by Michael Greger (he's a vegan so beware).

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).

Im going to be brave here and say Im troubled your oncologist is telling you to take aleve or cymbalta instead of ADDRESSING the issue. The issue is that some AIs are crippling women! And youre one of many as I was one, too.
The half life of Letrozole is 50 hours.
IMHO, this is whats causing these drastic effects.

Consider asking your oncologist to switch you to exemestane.
Even on exemestane, you might consider a 2 week break
After being on it for 3 months.
If your dr will not consider exemestane for you, say goodbye and find another one.

Frankly, if you switch from letrozole to exemestane, consider taking a week to 10 days break in between dropping letrozole and starting exemestane. Let your body get rid of the letrozole before starting exemestane.
You just might find yourself feeling better and take advantage of it! Get out and enjoy yourself.
If you do this, please let us know how it works out for you.
Remember, WE have choices.
Best to you!