Seeking Relief from Neuropathy While on Exemestine

Same protocol with me. I am suffering too. I also have type 2 diabetes.

We need help!

I am on Exemestane also due to side effects of anastrozole... some improvement overall but what I believe has helped tremendously with "how well" all my docs feel I am doing, looking, etc is the New Zealand Manuka honey that I have been taking since first diagnosed in mid 2023- it's anti-inflammatory properties are well known- and I believe it has contributed, from the beginning, significantly to reducing intensity of many associated side effects- and some very early trials in Europe are showing it negatively affecting breast cancer cell growth in mice- regardless, I love it and that along with tumeric, ginger, I am living with these AIs as long as I have to...

I'm on Anastrozole. The side effects were tolerable until the joint pain, especially at night. I have to unbend my fingers in the morning.

I tried all 3 Aromatase inhibitors and had terrible side effects! I quit taking them because my doctor prescribed 6 other meds to try to manage the side effects. I agree, they need to find a better way. I am still around 11 years later. Do your research, do what is best for you, not statistics! after trying all 3, i am now having to replace those hormones with estradiol cream every other day (applied topically to the vagina. It does not absorb into the bloodstream) and testerone ointment every day. Small amount of both, but the energy is coming back along with my health

First time 25 years ago I took Tamoxifen. I couldn’t tolerate it nor the others I tried. 15 years later breast cancer again then on Anastrozole for 5 years. Last year on it I developed Carpal Tunnel in both hands. Once I got off of it problems subsided. Breast cancer came back this year and I’m on Exemestane now. After 6 months I’ve already developed trigger finger in my thumb and other joint pain. I can’t imagine 5 years more on this stuff. Theres got to be a better way.

I have taken all of those meds you mention. Duloxetene has been the best for me. I am 12 yrs post mastectomy stage 3C. I receive acupuncture once a week for over 5 years. The neuropathy is gone everywhere but my feet but I don’t think about it when I incorporate these treatments.

I also took aromatase inhibitors for 10 yrs. When you stop body aches subside. I worked out through all of these treatments.

Hi Ladies, I have been taking Anastrozole for about 3 years and before that Tamoxifen for two years. I'm in the gym with a trainer 5 to 6 days a week to combat the side effects. I'm also a retired 100% disabled veteran, so, I am dealing with pain on an additional level. I had DCIS in 2016 and Breast Cancer Stage in 2019. I had lumpectomies and radiation both times. All I can contribute to the conversation, you will feel so much better when you workout.

Same. I started taking Anastrozole the end of March and was nauseous for 6 straight months. I’m afraid to try anything else for the very reason some of you have stated. I don’t want to go back to being sick again. Once the nausea went away, the joint pain kicked in. They prescribed Duloxetine but it doesn’t help. At this point, the only thing my medical oncologist has to offer me is a cane.

I am taking gabapentin, with supplements B6 and L-glutamine. I have neuropathy in both hands and both my feet. The pain is awful at night in my feet. I go to physical therapy twice a week and continue therapy at home. It does help me for a while, but pain does come back.

@Sandra M, how much honey, tumeric and ginger do you mix together?

As a physician who is now a patient it is truly heartbreaking to read the stories here- seriously, staying alive without quality of life? I am baffled that this is the best that medical science can offer as treatment options in 2024- I had to stop my AI- severe trigger thumb and neuropathy- trying supplements, exercise and whatever- in the end medicine thinks " inside the lines" but surviving with quality of life requires going outside the lines"... stay hopeful, vigilant and keep sharing- it all helps❤️

PS- forgot to share my juice recipe- will do a little later with ingredients and amounts...

Saundra, please do! I also want to know how much honey do you take daily. Thanks, Mayra

Hello, does anyone take letrozole and hows it wowrking for you?

I was prescribed Anastrozole 18 months ago. The joint pain has become intolerable for me as well. I stopped it. I had my 1st accupuncture orientation/ treatment last week. I had no pain 3 hours later and now 3 days later no pain still. I will be going back this week. I am making changes in my diet. While it's not covered by insurance, I got relief. I have had 3 good nights of sleep as well.

Me too side affects beyond tolerable

Any doing fenbenazole 222mg per day!

Saundra, I also had trigger thumb. I didn’t think it was connected to my letrozole and Zometa. But it probably was. My doctor referred me to another doctor ad he gave me a steroid injection directly into the thumb joint. It has disappeared. So thankful. I was adding up the different procedures I’ve had done since my diagnosis. I’m at about 9 different procedures.

Please, a lady, come and take a picture.

I am scrolling through the comments since my last update- so many of the side effects experienced by so many are NOT shared with us by MDs before initiating treatment so when they appear you wonder what's happening to you??? As I have said in my years of practice, if pharmaceuticals would pay a little more attention to handling the side effects along with the benefits maybe there would be more compliance AND gratitude... for now I am stopping all meds as the side effects are worse than the " possible" benefits ...late edit- in answer to a previous request, I use a heaping teaspoon of Manuka honey every morning in either tea or coffee and the same amount any time I sweeten a hot beverage...it's been my replacement for any added sweetener so I don't have a daily amount....

Also, latest suggestion being offered is soursop supplements... I haven't started it yet but it the most recent suggestion...file:///var/mobile/Library/SMS/Attachments/7b/11/96437557-51DD-4C75-BB55-0255A9328856/IMG_0518.jpg

I'm on extamestine as well im 4 years no sign of disease some days are worse than others sometimes I have to take opioids and Tylenol but the best thing that helps me is to reset 2 weeks of the meds is a beautiful thing that was what my oncologist had suggested it works temporarily but it helps also yoga stretching and Aquatic therapy or water aerobics I swear by it all are temporary but gives great comfort

I would talk to a Naturopath to see if there are any suggestions. I exercised all through the treatment & had weekly acupuncture treatments which I still do 12 years out. I do still have neuropathy in my feet but it’s not unbearable. None in my hands now. I’m sorry you’re having such a difficult experience. I always say it’s not for the faint of heart.