Exacerbation of Peripheral Neuropathy while on Exemestane

  • 14 replies
  • 498 subscribers
  • 525 views

Hello I am HER2+ and ER+ IDC diagnosed 14/8/23. I had to stop all chemotherapy in May with another 8 treatments to go due to chemo induced Peripheral Neuropathy ( grade 3) It had reduced to a grade 1 until a couple of weeks ago around the time I started Exemestane an aromatase inhibitor. I’m back to grade 3 which is frustrating and worrying. I’ve already been taken off Letrazole to go onto Exemestane. I am on Exemestane for 7-10 years 

Has anyone else found the aromatase inhibitors made their PN worse? I know it can cause Carpel Tunnel but this is in my hands and feet . Awake with the pain and discomfort . 
Thanks 

  • Hi there, I just noticed your post hasn't had any responses yet and, as the site is quite busy, you've dropped down the pages. My answer will bump you back to the top and hopefully someone with the right experience will be along soon.  Best wishes 

    Community Champion badge

  • That’s kind, thank you. 

  • Hi I'm on the same tablets and yes it's really bad in my right foot, the numbness is unbearable especially at night, I was on letrozole then changed to this exemestine! 

  • Hi thanks for your reply. I’m sorry you are having problems too. How long have you been on Exemestane ?  I have found that wearing bamboo socks, don’t laugh, particularly calf length , has helped at night. I resorted to putting a pair on my hands during one bad night. Not great with the current night temperatures but needs must. I can’t remember where I read about bamboo socks, possibly a Maggies Centre blog . From what I’ve read the pain etc is worse at night. I was told not to drive when my feet were bad which is right but tough. 
    I hope things settle for you soon. All the best x

  • I had breast and lymph nodes removed back in 2021… have tried 3 different aromatase inhibitors…last one has been Exemestane, which has caused me so much joint pain, i stopped taking it 3 weeks ago and find once im up and moving around the joints work.  Especially hard hit was my knees.  Im 78…so will now just take my chances for whatever time i will remain on this earth.  For ME, quality is better.  Hope you find answers to your problem. 

  • Hi sorry you are in such pain.  

    I have neuropathy mostly in my feet, day and night, but particularly at night.  I am not on any drugs, but this was since my chemo treatment between October and March this year. I found that the support socks provided for surgery in May helped the neuropathy a little.

    Hope it is resolved for you soon 

  • Hi , I also had a hard time last summer on chemo and had neuropathy caused by it , i didn’t start exemestine until I had surgery in December and I have found it has not caused worse np but exhaustion and some stomach pain , but I’m also on zolidex so it’s hard to tell what’s causing what ! I wish it improves for you xx

  • It’s blooming hard isn’t it. I’m 73, I will be 83 by the time I finish the medication, you do wonder what to do for the best at times. At the moment I very much want to carry on but I’ve only been taking it for a month . I am waiting for the results of a CT scan to check for bone mets . I am reasonably confident it will be ok but… I hope you find that life is more enjoyable and long without Exemestane , all the very best to you.

  • Thank you. It is hard to untangle the various side effects as you say. Radiotherapy side effects kicked in for me yesterday, feel far worse than I expected but it could be the Exemestane too. I was diagnosed this time last year. I still have 14 Herceptin injections to go and Bisphosphonate infusions. Am I right in thinking the Zolidex is by injection too? I hope everything goes as well as possible for you. All the best .

  • OlivaGA know what you mean.  I was 70 in June, just had my surgery a week before my birthday and five months of chemo before that.  I was diagnosed a year ago.  Two years ago I was back packing in the Greek islands.  This was not on my bucket list!  I have a month of daily radiotherapy now.  Am told that it could return within 10 years, if thats the case, not sure I would bother at 80