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  • Neuropathy

    Can anybody give any tips for helping cope with severe neuropathy !!!!!!! I am taking neurontin now.

    Stage IIIB Seminoma
    finished 4 x BEP in April 2006

  • #2
    Aloha! I've had some good results w/ a bone stimulator. Totally off-use use but it works. Got bone stimulator cuz broke 4 bones in foot while walking d/t ostoeporsis from high-dose chemo, so accidental side effect that I like! Note: Bone stimulator cost like $4,000 but have seen them on ebay for around $75. Bone stim's work by generating electro-magnetic waves, noninvasive & quite safe, taking 30" a day for several months. Good luck!
    dx:Jan/03 TC stage 4, bHCG 117,850 AFP 34,834
    s/p R orch, 3rds chemo, bleo tox, 1 rd chemo, MRSA sepsis, 4 rds chemo, RPLND (8 1/2 hrs) w/ L nephrectomy, remission 4 mos, repeat RPLND (2 hrs), 3 rds chemo. Total 11 rds chemo. remission 24 mos, GFR 39%, AFP 21, bHCG ,1.

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    • #3
      Eric,

      I have been dealing with severe neuropathy for 18+ months now.. I have treid Neurontin ,Keppra and Amitriptolyn with little to no affect.. Roughly 4 months ago my Dr prescribed me a drug called Lyrica. It took a little getting used to because the medication can make you dizzy(I had that pretty bad but it wore off after 2-3 weeks... My problem was in both feet ,8 out of 10 fingers, left thigh, left calf and right upper arm.. After only a few month taking Lyrica the pain and numbness is gone in all but 2 fingers(both index fingers),thigh is ok,upper arm and calf are 50% better.. The feet I would say are only 20%-25% better which was OK with me because I was stuck in a chair all day unable to do anything. I would definetly suggest it to your DR. I found keeping a real good, soft pair of socks on your feet really helps. Try to find Diabetic socks which look the same as regular socks but they don't have that aggrivating and sometimes painful seam right across your toes. My Godsend for my feet(besides a few shots of Jagermeister) is CROCS. They are the only shoes that I found I could walk in and they have a line called Crocs RX which just came out 1-2 months ago and are made specifically for people with diabetic or chemo realted Neuropathy... The crocs are not the nicest shoes you will own but will be the best $30-40 you have spent in a while. You should also take b-6 ,b-12, and magnesium suppliments.. Hope you feel better soon(you will as soon as you get a pair of CROCS)
      BE WELL!!!!!!! DON www.crocs.com
      Moffitt Cancer Institute
      CANCER SUCKS
      Diagnosed/Left I/O 9/18/2004--Non-Seminoma/Stage IIIC--3X B.E.P chemo--3X T.I.P. Salvage chemo---Abdominal [email protected] 34cmX 24.5cmX 17.5cm---4/19/2005 --RPLND/Left Kidney,8 1/2lb Abdominal tumor,42 nodes removed---7/16/2005 Remission/Surveillance---Severe Peripheral Neuropathy--

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      • #4
        I also tried capszacin on my feet. It gets pretty hot, so use it sparingly. I'm still trying to get used to the Lycira. The Neuropathy comes as waves with me. It definately puts a damper on activities. Don, nice shoes . I'll definately check'em out. I'll just get another tattoo if they're too distracting .
        I Love My Pack!

        sigpic

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        • #5
          To Everyone

          Thanks for the suggestions, all I wear now on my feet is flip flops and my wife hates it when I wear socks with them !!!!




          ___________________________
          Stage IIIB Seminoma
          4 x BEP Finished April 2006

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          • #6
            please get the crocs!!!! haha (just a little humor )
            diagnosed 01/15/2005 bi-lateral seminoma stage IIa,4cm lymph node, right I/O & partial left I/O mar/2005, 18 days of radiation, remaining left I/O- aug/2005, surveillance, Wife did IVF oct/2005, DAD OF BABY GIRL born 08-02-2006!!! testosterone implants May 2008

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            • #7
              Neuropathy info

              Hi from Russell's mom,
              I have downloaded a page from a book that I have found very helpful. The author has a doctorate in nutrition and advocates for nutrition as an adjunct to chemo. He is not claiming a cure-all, but is able to give statistics on improved outcomes from around the world. Both of the doctors that Russell saw said to be carefull not to "over do" on supplements. I have to agree. Who would ever want to rock the boat with a chemo treatment program that is working so well!! But I personally believe that our bodies get bombbarded in many ways and as well our diet does not contiuously get the basics and micronutrients needed to support it. In additon, I know that Essential Fatty Acids help our nervous system overall. Hope you find the info helpful. I have also heard (from one of the oncology nurses treating Russell) that massage has helped her patients. Here's to finding comfort!!! Take care, Sharon
              PS I just checked the download...pretty basic! Let me know if you have trouble printing and I will try again. thanks Sharon
              Attached Files
              Last edited by Russell's Mom; 10-11-06, 04:10 PM.
              Click here to support my LIVESTRONG Challenge with Team LOVEstrong.

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              • #8
                Sharon,
                Having some trouble with this one. Won't print the whole page and I don't think viewing my monitor this way is helping. Sorry, I couldn't resist
                Attached Files
                I Love My Pack!

                sigpic

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                • #9
                  Tcleft

                  The dog was smarter than me, I had the laptop all up in the air sideways trying to read it. Sharon, Thanks for the article !!


                  __________________________
                  Sick

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                  • #10
                    photo made me smile

                    I love dogs!!! Let me work on my computer skills!!! Maybe others will want to read and we don't need stiff necks. Will be back soon, Sharon
                    Click here to support my LIVESTRONG Challenge with Team LOVEstrong.

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                    • #11
                      Originally posted by Eric V.
                      Thanks for the suggestions, all I wear now on my feet is flip flops and my wife hates it when I wear socks with them !!!!

                      Eric in flip flops with socks and Don in CROCS...We need a TC fashion page!!!!

                      Seriously, from what I've read you guys post on neuopathy I can't imagine how uncomfortable it must be and how it alters what you can and can't do. Hope it gets better Eric!

                      Don,
                      Sounds like the Lyrica has come a long way for you in 4 months....hope you keep improving.
                      Retired moderator. Husband, left I/O 16Dec2005, stage I seminoma with elevated b-HCG, no LVI, RTx15 (25Gy). All clear ever since.

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                      • #12
                        Just as a point of reference, this is what neuropathy feels like to me. It's somewhere between getting pins and needles from having your limbs fall asleep and the feeling you get when your limbs get really cold, like on a winter day and then banging them against something hard, like working on you car with a socket wrench and having it slip. Does that cover it guys?
                        I Love My Pack!

                        sigpic

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                        • #13
                          Originally posted by TCLEFT
                          Just as a point of reference, this is what neuropathy feels like to me. It's somewhere between getting pins and needles from having your limbs fall asleep and the feeling you get when your limbs get really cold, like on a winter day and then banging them against something hard, like working on you car with a socket wrench and having it slip. Does that cover it guys?
                          Yep, that about sums it up.
                          TC diagnosed 4/3/06, [email protected]; Left I/O 4/10/06; Stage IIa Non-Seminoma, 100% Yolk Sac; Started 4xEP 5/22/06 with [email protected]; Finshed 4xEP 8/11, AFP normal, CT scans clear! Now on surveillance

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                          • #14
                            That's what it feels like to me !!!!

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                            • #15
                              Pretty Close!!!! I must just be lucky.. I have all those symptoms and have constant pain in my feet that I would compare to having squeezing down on my feet with a vise...sometimes the pain lasts for hours and it lays me up until it subsides.. this happens about 7-10 times a week.. when it's not a constant sqeezing pain I just have really sharp, shooting pains that last for a few seconds which I would compare to an electrical shock .. this happens a few times(at least) per hour .. My Dr. said the shooting pain is possibly from damaged nerves or from the nerves regenerating... I'[m hoping is regenerating ... Oh Well!!! We have all made it through the tough stuff... No reason to sweat the little stuff... Be Well!!!!!!! DON
                              Moffitt Cancer Institute
                              CANCER SUCKS
                              Diagnosed/Left I/O 9/18/2004--Non-Seminoma/Stage IIIC--3X B.E.P chemo--3X T.I.P. Salvage chemo---Abdominal [email protected] 34cmX 24.5cmX 17.5cm---4/19/2005 --RPLND/Left Kidney,8 1/2lb Abdominal tumor,42 nodes removed---7/16/2005 Remission/Surveillance---Severe Peripheral Neuropathy--

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