Breast Cancer and Neuropathy

I feel you. I had a double lumpectomy with radiation. I managed 6 months, off and on. That was 2 years ago. I gained weight and swelled terribly, couldnt walk, couldnt use my hands at all, depression, I had it all. I stopped, and went to diet. I am 69 now, 60 pounds lighter, and living my dream. The damage to my hands has not improved. I cant bend my fingers, but I manage. I walk 2 miles a day now, and am doing so so so much better. Are the side effects worth the small percentage of help? I dont believe so... My onco told me all I can do now is pray. So that is what I do, and live my life looking after my body thru clean eating and exercise... Best wishes to you on your journey.

I was on Letrozole for only 3 days and now have neuropathy of ears, pain around chin, eye ridge, mouth and numbness of the throat. I already had neuropathy of feet and was taking 120mg of Alpha Lipoic Acid (ALA) from Pure Encapsulations (brand makes big difference). I've increased it to 240 which is max and am getting relief but I think the damage is permanent. I will not try any other AI since they and Tamaxifin can cause neuropathy, especially if you're over 60.

I will not take any other cancer med and like others, walking, weights, etc. help but not completely. Good luck.

How can medications such as Letrozole which cause so many side effects get approved?

Because you are only hearing from those suffering the side effects. I was on Letrozole for 9 months with only the occasional hot flash. After surgery, chemo and radiation my oncologist put me on Anastrozole. My neuropathy started midway through chemo, but the joint pain started with Anastrozole and got so bad I was darn near crippled by it. I'm back on Letrozole and taking collagen supplements and have only arthritis related issues in my back. Everyone is different and everyone reacts to various drugs differently. Many people have little to no issues with these drugs. The quest is to find the right one for you.

I've been on Anastrozole for 7 months. I started having numbness on my right ring finger about a month ago. It's not terrible but I feel it. It's worst in the mornings: when I close my fingers around a bar of soap for example it hurts. It becomes gradually fine during the day. Last week I went to see an occupational therapist. She placed a splint on it and told me to wear it all the time (except showers etc.) It's been a week and I don't think it's quite working.
What do collagen supplements do to help?

On a separate note, sometimes I think when people read a side effect before they have it, they kind of start to expect to have those and it becomes a self fulfilled prophecy. I didn't have this, and somehow I ended up reading a number of posts where people complained about trigger finger. Lo and behold, after a week or so the numbness started!

So, perhaps look at the title and if it mentions some side effect you don't have, don't click on it to read it :))

Yes I was on this medication & I also had the same similar experience. I also never read the side effects of this medication until a couple months after the fact. It started with my right thumb which it became quite swollen as if it was fractured or broken and I too then got a stabilizer brace for it which did seem to help however didn't and hasn't still provided any kind of real change other than giving it support, swelling never has gone away and then I also started feeling it in my 4th toe on my left foot and my right ankle & right knee as well and left wrist and yes before I knew it, I looked like I had been in one bad accident with all the braces I was wearing daily. My ankle, my heel, knee, wrists, thumb, and that's when I read the side effects and read not to take this med if you have osteoarthritis which I do and I immediately quite taking it and have requested a replacement and still waiting for the replacement for 3 wks and counting...just in the last week I have been able to actually go without wearing any of the braces even though i still have some of the swelling and little pain it has certainly gotten much much better and easier to walk along with being able to actually open up jars and use my hands now. I did a yr of chemo for brest cancer and it's been 4 months since the last treatment and have just been informed this week of my liver now being very sick and now have an abdominal ultrasound scheduled to see what's going on, which is very worrisome for me.
Hope you can learn of something for helping you with the similar discomfort and we both can keep positive and have only good days ahead!

I had been on Anastrozole for about a year with gradually worsening knee issues - getting up and down stairs, in and out of chairs. I couldn't kneel, and getting down on the floor was just about impossible. Some days I could go for a walk, and other days I couldn't make it down the block. Last November was the worst. It was painful just dragging myself up the stairs, and I thought I'd have to put bars alongside the toilet as the pain was so extreme getting up and down. In December I switched from Anastrozole back to Letrozole and noticed a real improvement. Then I started collagen supplements (started with the gummies), and within a few months I was almost entirely pain free. I've been working on knee flexibility and am no longer reluctant to look for the lost cat toy under the sofa. I'm almost to the point that I can get up from the floor without holding onto something. (I'll be 68 next month). I've read several posts here about joint pain due to the covid shot and the prolia shot. Since my knees improved I've had both shots with no ill effects which is why the finger points to Anastrazole. Looking back I remember within a week of starting it, I had one day I got out of bed and couldn't put any weight on my left leg for an hour. Then off and on knee pain. I blamed the gabapentin I started at the same time, but I stopped that in a few weeks, but no improvement. I also had to take painkillers before bed or extreme knee pain would wake me up in the middle of the night. There's no way it was anything but the Anastrozole.

I tried anastrozole, twice, at my oncologists recommendation. In both attempts at tolerating it, I developed a serious pain in my right hip that caused me to limp. This happened within a week of taking anastrozole. I discontinued the drug and that problem took a month or so to finally go away. I have a low risk of recurrence according to the OncotypeDX test result and conferred with two oncologists who feel that I can skip the anti-hormone therapy without significant change in recurrence risk. I had other concerns about the AIs and estrogen depletion's effects aside from breast cancer impact but the bad limp was the deal-breaker for me when it happened the second time within such a short period of time.

I've been on Letrozole for 13 months and have gone through a wide variety of side effects: joint & muscle pain - PT for a year helped (almost completely) relieve that symptom - continuing to do weight training and yoga to maintain being pain free; hair loss - less so today; hot flashes - hardly at all these days; depression and thoughts of suicide - going to a counselor - under control.

After a life-time of being hypoglycemic (low blood sugar), I now test at pre-diabetic. That has me seriously troubled. Doing some online research this morning led me to this branch of Mayo Clinic Connect. For the past 2-3 months, I've been having increasing numbness and tingling in my finger tips and toes. That's getting more pronounced and now has me quite concerned. Until today's online research I didn't understand what in the world was going on.

Thanks for this group and for the shares. We help each other, even if it's "only" knowing that we're not alone.

My next appointment with my medical oncologist is in March. Fearful of waiting that long to talk to him. Perhaps my FNP can assist; will make an appointment with her.

Seems we're between that "rock and a hard place" in dealing with our breast cancer and AI meds to prevent reoccurrences.

My first recurrence was in my sternum (35 years after initial breast cancer diagnosis and mastectomy at age 26). I started with Arimidex and almost immediately had severe neuropathy in hands and feet. (I’m an artist, and could hardly hold a pencil or paintbrush!) so I was switched to Letrozole after radiation, carpal tunnel surgery and physical therapy. I was on the Letrozole for ten years with mild foot and leg neuropathy that was gradually getting worse (my hands were ok though) I asked my Dana Farber oncologist if I could take a break. I did, and scans 3 months later showed new lesions in liver, spine and ribs.
Soooo, I am now on infusion shots once a month and an Ibrance pill every day for 3 weeks on 1 week off. The neuropathy in my feet started getting bothersome again, so my oncologist prescribed Gabapentin.