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Ally500's avatar
Ally500
Member
3 years ago

Peripheral neuropathy after Taxol/Kadcyla

Hi, I was diagnosed late January/early February 2022 with early triple positive left breast cancer.  I haven’t posted here before because I generally bottle everything up and keep everything to myself rather than talk about things but I have decided to bite the bullet and try as I am not coping well currently.  I had chemo, followed by wide local excision and sentinel lymph node biopsy with a small amount of residual cancer cells left which is why I was then started on Kadcyla.  I also had radiotherapy. I had numbness in my fingers and toes after Taxol but nothing major.  I think I got away relatively easy with treatment and sailed through it.  However in late November I was admitted to hospital with gastritis and just after that the peripheral neuropathy in my fingers and toes got significantly worse to the point where I can not walk properly and have had a lot of pain.  I tried Lyrica, Zostrix, beefed up my magnesium and was on oxycodone to no avail and have now been started on gabapentin which has made a minor difference after a few days but still in a lot of discomfort and mobility is poor.  Kadcyla is being stopped and I am going onto Herceptin instead.  Quality of life is pretty much zero and I am struggling to cope.  I’m terrified this won’t go away and this will be my life from now on.  Has anyone else had this side effect and if so do they have any tips for coping?  I’m sorry, I know other people have worse things going on than me but I’m really struggling at the moment.  Just feeling very down and overwhelmed. Thanks for any tips.xx
  • Ally500's avatar
    Ally500
    Member
    3 years ago
    Thanks so much for your reply.  Yes after Taxol I only had mild numbness with a little pain and it was annoying but tolerable.  It was only after gastritis and I had my next Kadcyla infusion that it became so much worse.  I can definitely ask my docs to rest for PR.  Can’t hurt.  Xx
  • Keeping_positiv's avatar
    Keeping_positiv
    Member
    3 years ago
    It is very strange that at first you didn't have much ill effects and recovered well from the initial peripheral neuropathy.  I understand that peripheral neuropathy can worsen a bit after finishing chemo treatment, but not to the extent that you are in so much pain now.  I was monitored closely when I had taxol and I did get some peripheral neuropathy but it was manageable and I continued on to finish the recommended 12 sessions of paclitaxel, it worsened slightly after treatment finished but not to the extent of needing pain killers.  

    My understanding is that taxol can shrink the sheath around the muscles in the legs, but that is temporary, and I did have a couple of days here and there where I couldn't walk, but that came good.  Also like @Afraser I am left with some numbness in my toes and feel as if I am walking on sand if I dare to try to go barefoot even from the shower to getting dressed for the day.  

    My hunch is your pain is perhaps something else.  Can you ask for a test for polymyalgia rheumatica, as what you describe sounds like what those with polymyalgia rheumatica present with.  I may be completely wrong, but worth you asking for this test.  Wishing you the best and to find out the cause of this pain. 

    P.S. I also had AC chemo and herceptin.  Herceptin didn't cause any muscle pain, and was a breeze in comparison to chemo infusions.  
  • Ally500's avatar
    Ally500
    Member
    3 years ago
    Thanks so much for your advice.  I will check with my GP about it.  I have just been changed from Kadcyla to Herceptin now so hopefully things will improve.  I have just started back on tamoxifen which i had been on for a week before the gastritis in November as well.  Xx
  • Afraser's avatar
    Afraser
    Member
    3 years ago
    Always good to check even vitamins with your doctor but vitamin B is unlikely to do any harm. I still take it daily, like you I’ll do (almost) anything for improvement. My understanding is that nerves have a remarkable capacity for recovery, but that also means it can take a long time. I got the very tips of my toes back about two years ago! But since retiring about the same time (I
    am 77) I walk for an hour every day, again I am not sure how much it helps but I’m not risking stopping!  By the way, I had Herceptin for a year and had no side effects or worsened effects at all. Good luck! 
  • Ally500's avatar
    Ally500
    Member
    3 years ago
    Thanks Cath62.  Thanks for the words of encouragement.  I will keep plodding along and hopefully day by day it will get better or year by year if that is the way it goes.  Xx
  • Ally500's avatar
    Ally500
    Member
    3 years ago
    Thank you so much for your reply.  You have helped me feel a bit better about it.  I hope it goes away but I do understand it can take a while to clear up if we all.  I might try the vitamin B to see if it helps.  Anything to get rid of this as soon as I can. Xx
  • Afraser's avatar
    Afraser
    Member
    3 years ago
    Dear @Ally500

    My sympathies, peripheral neuropathy can be a real stinker. I got it in both my hands (very mildly) and my feet (quite badly) while still on Taxol. I nearly stopped but finding a lump
    under my ‘other’ arm made me feel I should continue! The lump was nothing of concern but like you, my feet got to the stage where I started worrying about not being able to walk. I used to sit on a tram to work with my feet so far under the seat I was nearly falling off, as anyone tramping on my toes would have elicited a shocking response. My oncologist’s nurse recommended Vitamin B - I must be honest and say I have no idea if it helped or if the improvement was entirely coincidental. The bad news is that my feet are still affected ten years on. The good news is that it impacts very little, I have no pain, just occasional discomfort. The main problem is that my screwed nerve ends send screwed messages - so I may feel I’m walking on foam rubber, sand, or mud, or gravel instead of the pavement. It only affects me (confusion can affect balance) if I move faster than I can think to just mentally override it, so no sprinting. Happily, I was never a runner. Pain is your first worry so I hope you find a solution soon. Chances are that the symptoms will lessen, most people do recover but it can take longer than you like and, by and large, is not something that patients are well prepared for. 
    Best wishes for some rapid improvement.
  • Cath62's avatar
    Cath62
    Member
    3 years ago
    Hi @Ally500, sorry you have gone though all you have been through. It is a difficult ride to have all that treatment. I had some peripheral neuropathy after taxol. Actually I had it during my taxol treatment and my dose was eventually reduced so I could finish my treatment. I was on other drugs post chemo but what I am taking is different to you.

    Having said that however the neuropathy I had in my toes settled, then increased and settled again. Not sure why but that's how it was for me. I had treatment in 2020 and my neuropathy continue to go up and down in severity for a couple of yrs. It was worse at night. This year I haven't noticed much so I am hoping finally that side effect has past.

    I hope changing tablets will help you. Keep in touch with your oncologist and let them know how you are progressing. It usually takes at least 1 month for one drug to get out of your system and it will take another month to 6 wks to see if there are other side effects from your new treatment. 

    It is ok to feel down sometimes and overwhelmed with all the treatment and issues. You are human and it is perfectly normal to get that way sometimes. Give yourself a pat on the back for getting through everything so far.  Keep an eye on your mood too with the medication. They can sometimes impact us. Give yourself permission to be a bit down and then puck yourself up and keep going. You have too as frustrating as it all is, there will be light at the end of it all. 

    Best wishes