Worried about neuropathy

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Anonymous
Anonymous Member Posts: 1,376
edited June 2014 in Complementary and Holistic Medicine and Treatment

Dear all,

Need some reassurance about neuropathy. It sounds like that will keep me from being active more than anything (being active is my life--anti-depressant and overall good feeling), since I can fight through the fatigue.  I don't have it yet.

A colleague and friend of mine who went through tx about 6 years ago keeps telling me that she can "help" me with it, intimating that I'm for sure going to experience it in the future.  True or not?

Another forum member suggested B6 and I'm taking B complex with B 6 in it, as well as COQ 10, carnitine, and a bunch of other supplements (note: I am NOT taking them without my oncologist's okay, who signed off on my naturopath's recommendations, and I don't take them the day before chemo, the day of, and two days after).  

My question is: is neuropathy inevitable?   My tx is DD ACT: AC every other week x 4 and then 12 weekly Taxol.  Does this problem come with AC or later with the Taxol?  My second chemo is tomorrow...and my friend's continual reminder of this problem has me worried.

Thanks all for your suggestions and reassurance...

Claire

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  • Claire_in_Seattle
    Claire_in_Seattle Member Posts: 4,570
    edited November 2011

    Hi Claire,

    It comes with Taxol, not AC.  I was in a study looking at Acetyl-L-Carnitine to prevent.  I took the whole time, and for about three months afterwards.  No neuropathy.  Well, that's not quite true.  I get just enough on occasion to know what the symptoms are.  When I am really tired, and a couple of pulses in my hands.  Not my toes.

    I don't know which group I was in.  Anyway, this supplement is worth asking about. - Claire

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  • apple
    apple Member Posts: 7,799
    edited November 2011

    I've managed to avoid it and the drugs used to treat it which are way too kickass for my modus opererandi.  I do take B6 and care for my hands diligently.

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  • NatsFan
    NatsFan Member Posts: 3,745
    edited November 2011

    Claire - everyone is different on this. Some women are hardly affected, while others have a rough time with neuropathy.  I had some neuropathy, but not extensive.  I found I made more typos than usual because my fingers were affected, and I tended to stumble occasionally because my feet and toes were affected.  On a scale of 1 to 5, I was maybe a 1.  As Claire in Seattle said, I had it enough to know it was there, but QOL wasn't affected much at all.  I just had to give everything I wrote on a computer a good double-check for typos, and I wore sneakers and similar shoes that gave me secure footing.

    The effects persisted for about 6 months after treatment, but then gradually got better.  Now I'm three and a half years out and I have no neuropathy whatsoever.  I didn't take any special supplements during chemo to avoid it, but I tried to exercise as much as I felt able.  

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  • Terry71
    Terry71 Member Posts: 293
    edited November 2011

    If your going to have it or get it it comes with Taxol.... Im on Docitaxol now, LAST treatment is tomorrow Ive had 2 so far and the neuropahy is horrid with it...... Not everyone gets it though like you are being told.... So try not to stress or panic over it right now just get through treatment that is the number 1 priority...... Hugs

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  • Husband11
    Husband11 Member Posts: 2,264
    edited November 2011

    Ask your oncologist about melatonin.  There was some small scale research done on melatonin and neuropathy, which showed it lessened the grade of neuropathy from taxanes.

    http://www.la-press.com/melatonin-a-promising-role-in-taxane-related-neuropathy-article-a2019

    http://www.asco.org/ascov2/Meetings/Abstracts?&vmview=abst_detail_view&confID=47&abstractID=35668

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  • Omaz
    Omaz Member Posts: 5,497
    edited November 2011
    claireinaz - During taxol if you notice numbness, tingling or pain please talk to your onc - you could be switched to taxotere (another taxane like taxol) or the dose could be adjusted.  L-glutamine and L-carnitine have both been mentioned as possible preventatives.  
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2011

    Hey thanks all of you. (Claire I feel like I know you already since you've been so helpful in the past.) Interesting about the melatonin--I've been taking it to sleep at night (onc. okay'ed) so it's nice to know it might have other protective benefits. I've captured the L-glutamine info too, and my naturopath is up to date on this neurop. issue; she gave me a journal article when we determined what supplements I could take.  I welcome more suggestions and guidance too. 

    Claire

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  • thenewme
    thenewme Member Posts: 1,611
    edited November 2011

    Hi Claire,

    I had Taxotere and got progressive neuropathy to the point where my oncologist skipped my last dose (4th of 4).  I had it in both hands and feet.  Thankfully, it's nearly completely gone - resolved very quickly after stopping.  I know some people do have lingering neuropathy issues, but it definitely isn't an all-or-nothing thing either beginning or resolving.

    Best of luck!

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