Peripheral neuropathy

Hi anyone else got peripheral neuropathy post surgery or due to chemotherapy.

Mine started 21 years ago with BC immediately after auxiliary clearance & lumpectomy in left hand with numbness & pins & needles sensation - back then no help offered. Had follow up chemo and radiation all causing nerve damage.

It's progressed slowly so all fingers numb I have lost two wedding rings down the years as no sensation.

My second BC on left side again in 2022 with surgeries & recieved 3 out of 4 cycles of chemotherapy to date has exacerbated hand numbness & now experiencing hand paralysis lasting minutes is getting more frequent. Anyone else got this disabling side effect. I think the only meds are anti epilepsy drugs to try & conteract the nerve damage but come with their own side effects...any alternatives known I'd welcome some back up support.

It's bad enough facing breast cancer for the second time in a lifetime sometimes feel like I'm in a terrible re run nightmare.

  • Neuropathy is very difficult and I am sorry to hear how it has progressed on chemo. It may well recover somewhat over the year after chemo.

    The only thing I can suggest for now to stop it getting worse is to try buying ice mitts and socks. They have ice packs you can insert and buy spares for. I would buy one pack of ice packs per hour of chemo and make sure that you have some standard ice blocks and a cool bag to keep your spares frozen. Put the mitts and gloves on about 5 mins before chemo starts and keep them on until it finishes. 

    my neuropathy from EC is recovering now, and I hadn't realised it was one of the side effects. I have neuropathy from paclitaxel too but that was milder as I had the ice gloves and mitts. The neuropathy is definitely getting better. I do have some damage to the nerves in my arm from radiotherapy too, but it is early days and I am not sure how that will pan out yet. I hope maybe the ice trick will help you xx

  • Mine started in my feet last year when I was on Paclitaxel. Patchy numbness but no pain. This year I've had 4 rounds of Eribulin and the numbness has spread up the front of my legs to the knees. I feel unsteady on my feet and my legs are weak so I can only get upstairs by pulling myself with the bannister. Hard to even get out of a chair. My treatment has been stopped to see if things improve, with a review in August. In the meantime I'm worried my tumours will grow unchecked. I'm between the devil and the deep blue sea!

  • your advice is  Interesting, I wish I had it 10 months! I had chemo and radiotherapy last year and since, suffer peripheral neuropathy in my toes... I was told it might disappear, but it is not the case. No sign of improvement. I have to live with it . 

    good luck to all of you! Heart

  • Update - the feeling in my legs is returning since stopping chemo. Such a relief! No improvement in my feet from last year's chemo but at least I can climb stairs again. Scan booked for end of July to see what's happened since treatment stopped.  fingers crossed Fingers crossed 

  • Hi twice bitten

    sorry you find yourself with this twice. Do you mind me asking if your first bc experience was node positive as you have written that you had auxiliary clearance? Only ask as it’s a bit reassuring to hear someone had 21 years with that diagnoses I guess. I am so sorry it’s happened to you again though.

    Xx

  • Hi Hel39 

    Thanks for empathy, sorry delayed reply had 3 hospital appointments this week anyway yes I had sentinel node and then few positive nodes cleared 21 years ago. This BC recurrence in same breast, meant node clearance impossible as none left in area examined. So yes I've had 21 years cancer free, time enough for my three young children to grow up which has been wonderful and I'm very lucky for that. My sister sadly died of second BC aged only 42. I'm still processing BC recurrence & repeating treatments etc in same hospital I've more surgery due and awaiting BRAC testing, referred 4 months ago to Dublin for it, so far heard zilch, would this be quicker in the UK I wonder, as here in Ireland everything different ? Best of luck with your treatment too hope things going well. 

  • Thank you for replying and I’m so sorry about your sister and that you are having chemo again.  I wish you all the best with treatment! 
    xx

  • Hi Twice bitten

    Sorry to hear that that your cancer is back and so sorry to hear about your sister.

    Wishing you the best of luck with your treatment.

    Best wishes

    Daisy53

    Community Champion Badge

  • Hi to everyone for your support. I've finished chemo now, told 6 months before more surgery - corrective for dog earred scar, and likely prophylactic mastectomy for other breast. So time to recover. Peripheral neuropathy continues, unfortunately couldn't find those ice mitts to help...fingers locking intermittently now, constant pins & needles, only drugs offered are anti epileptic & I'm not keen to take them. Enough coping with Letrozole & calcium!

    Think I've just got to live with this enduring side effect at least its my left hand! I kept journal's throughout both my BC experiences & I noted Peripheral neuropathy started the day after wide excision & lymph clearance 21 years ago but presumably radiation & chemotherapy twice has exacerbated it.

    Good luck to all of you on your recovery. 

  • Hi All, I have some peripheral neuropathy, balls of feet and tips of fingers. I have been prescribed neurobion (specific b vitamins) and I am also having my feet massages and I think this is helping, might be worth a try, my feet feel terrible when massages, all pins and needles and really a pretty uncomfortable sensation but after this they feel much better.