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  • Neuropathy

    I finished 4xBEP in December 2005 and still have fairly severe neuropathy in both feet. It does not seem to be getting any worse, but is showing no signs of subsiding. For those of you who have had neuropathy but have recovered, I was wondering how long it took.

    Thanks for your input and all the best.

  • #2
    Originally posted by tcx2
    For those of you who have had neuropathy but have recovered, I was wondering how long it took.
    That depends on what your definition of "recovered" is. My initial symptoms presented while I was recovering from the RPLND, about 2 or 3 months post 4XBEP. It mostly went away and was replaced by Raynaud's during the winter, then I had some mild flareups in my fingers earlier this year, but nothing as bad as the original outbreak, which was hands and feet.

    As I type this, I'm having some "cold flashes" in my wrist and plams with a bit of tingliness/deadness in my fingers, so I'm not sure if you would call that neuropathy, Raynaud's, or both. Unfortunately, until there's a treatment for the symptoms that doesn't involve antiepileptic drugs like Neurontin or Lyrica, my options are limited (the FAA sez pilots can't take AEDs if they want to continue flying).

    I have read that Mexitil (an antiarrthymic) has been used to relieve PN burn. I also found this article from U. Michigan that talks about using an altered form of the herpes simplex virus to treat PN-associated pain.
    Vinny (aka Frank)

    left I/O 1/5/05; 95%EC / 5% mature teratoma; stage IIIC
    4x BEP 1/24/05 - 4/11/05; RPLND (left side) 5/31/05
    VATS resection of teratoma from left lung 4/26/06
    Presently surveilling


    • #3

      Thanks for the reply and information, Vinny. I also ditched the palliative meds. They provided a marginal benefit if any. I also get the cold, white finger syndrome, even during the summer. It's very reliable--every day at around 2pm. Kind of funny, but very annoying.

      I've read that these lingering side effects may be permanent. I guess it's a small price to pay...


      • #4

        my husband has sever neuropathy below the knees, he had stme cell transplants the last one was the end of may '06 , he says it is getting slightly better. He has some problems balancing. He has never been on any medication for it though. He is taking so many pills post transplant that we haven't gone that far to look into it. Right now he is having radiation so I don;t know if that will help or make the neuropathy worse. I guess will see.
        Husband dx May 2005
        Non seminoma germ cell tumor AFP 25.2, Ldh normal, HCG 800
        Stage II
        Right orchiectomy 06/05
        9/05 chemo 3xBEP
        12/05 Salvage Chemo 3x VP
        03/06High dose chemo
        Tandem Stem cell tansplant
        07/06 Radiation 5 weeks
        Passed away 09/17/06 HCG 650,000


        • #5
          2 months after my last BEP treatment (3 cycles), i started to have neuropathy on my feet (mostly on the left, don't know why...). in the begininning it was really tough: couldn't walk properly, had to buy comfortable shoes, thought i'd had to live forever with this handicap (no skiing, no tennins, no jogging...).
          then, slowly, VEEEERY slowly, it gone away. finally, after two years (first one was very tough) i can say i'm neuropathy-free.
          docs told me that nerves have the capability to regenerate themselves. from my experience, wait and be patient.