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Joey's avatar
Joey
Member
14 years ago

Neuropathy - Nobody told me

I am really struggling at the moment.  Had chemo # 3 last Friday, and started experiencing numbness and tingling in my fingertips and toes and huge pain in my legs.  My ears are also hurting (have been since my 1st chemo) and my jaw as well. 
I am starting to feel really upset because I didn't realise that neuropathy could be permanent.  I play the piano and would be devastated if I couldn't play any more.  I'm angry because nobody told me about the neuropathy and even though I read a little about it, there was not much information and I didn't really understand the implications of it.
I know there's nothing that can be done about this.  I could be stuck this way.  Seriously I did NOT expect the chemo to have such a severe impact.  My boss went through BC last year, and she has bad pain in her legs from the chemo and I don't know why I didn't make the connection, so I feel kind of stupid (hey if cancer can happen to me, then surely any kind of side effect from chemo can too!) but I think I thought this would be a detour for this year and then I'll get over it and learn and grow from it and get back on with life.  I can't believe how naive I've been!

6 Replies

  • Joey's avatar
    Joey
    Member
    14 years ago

    Hi all.  I just thought I'd say that now most of the neuropathy seems to have gone.  The feeling is coming back in my fingers and toes and the other things are improving as well.  I didn't end up having my final (4th) TC as the side effects were getting worse and worse, so maybe that's helped it all to clear up. 

    Yay I can feel things again!!!

  • Joey's avatar
    Joey
    Member
    14 years ago

    Hi all.  I just thought I'd say that now most of the neuropathy seems to have gone.  The feeling is coming back in my fingers and toes and the other things are improving as well.  I didn't end up having my final (4th) TC as the side effects were getting worse and worse, so maybe that's helped it all to clear up. 

    Yay I can feel things again!!!

  • Anonymous's avatar
    Anonymous
    14 years ago

    I had tingling in my hands and feet from my first lot of chemo, but it disappeared not long after I finished chemo. Yes, the ice mittens are designed to stop the tingles and they worked really well for me on my second lot of chemo....no tingles at all! I am starting to get tingles again on this new and different chemo I'm having, so have requested the ice mittens back again! lol!Take care, Celeste?

  • Joey's avatar
    Joey
    Member
    14 years ago

    Hi Maria.  I started with the ice mitts but it was too painful so didn't use them after that.  My understanding was that they were to help save my nails, not about the feeling in my fingers. 
    I can not sleep!  Night time is the worst time for pain and nothing is helping the pain.  I was given Endone but it has done nothing so I'm not going to try with it any more.  Right now I need a good night sleep!

  • Joy_K's avatar
    Joy_K
    Member
    14 years ago

    There are some treatments for peripheral neuropathy. I'm sure one of the moderators will point you in the right direction to access this info.

    When I had chemo the advice given to me was to stimulate toes and fingers by rubbing them on carpet etc. Worked for me and I had FEC X 3 and Taxotere X 3. I sometimes have a vague tingling in my toes but no pain in my legs, fingers are fine.

    With love

    Joy K

  • Maria333's avatar
    Maria333
    Member
    14 years ago

    Joey I had ice mitts whilst i was having the chemo. It is suppose to stop the chemical going all the way to your finger tips. I absolutely hate the cold. Could not stand having my whole hands in thefreezing ice cold mitt. So i just put my finger tips in. Talk to your nurse or oncologist about this. My finger tips are slightly sensitive to heat but no where newar as bad as they would have been if i hadnt used the ice mitts. I believe this is used for only some of the drugs given in breast cancer chemotherapy.

    All the best.

    Maria333