Neuropathy

DD3
DD3 Member Posts: 136 Member
in Colorectal Cancer #1

My wife requested I ask a question for her... She like many of folks on her went through adjuvent chemo (FolFox).  Tolerated it pretty well. The doc did stop the oxy the last two treatments due to her neuropathy getting bad.  Well, after the treatment the neuropathy really kicked in, especially on her feet and hands.  She is currently taking Gabapentin (sp?).  Seems to help a little.  Anyways, she was wondering if anyone with neuropathy has had success with other traditional or non-traditional treatments? Anyones ever go away?  Any information would be appreciated.  Thanks.

Comments

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    #2
    I am 10 months out of FOLFOX

    I am 10 months out of FOLFOX and 9 months out of 5FU and still have neuropathy, thuogh it has improved emmensly this past month. 

    Even though my hands and feet were totally numb, my feet feeling like a block of cement, I was not in any pain, so did not take medication. 

    I know there are people who have posted that still have neuropathy years later, and those who say it took a few years to go away. I hope your wife is one of the lucky ones whose neuropathy disappears, and soon. 

    I have found that cutting down on my salt intake makes a difference. Other than that, I have little to offer in advice but good wishes for a full recovery. 

  • karguy
    karguy Member Posts: 1,020 Member
    #3
    I'm sorry

    I'm sorry your wife has to go through that.I put on cetephil lotion,and wrapped my finger joints with band aids,that helped.The skin around my joints split from the chemo.I also did avastin with the folfox,and 5 fu.Cold objects were painful also.My neuropathy went away after about 5 months or so.I still have minor problems,but no big deal,that was 2 years ago.Good luck,and I hope it gets better soon.

  • ron50
    ron50 Member Posts: 1,723 Member
    #4
    Unfortunately

       It does not even have to be the platinum drugs that cause it. I am over 15 years out from treatment. Last year I was sent to a neurologist. His dx was moderate to very severe motor-sensori peripheral neuropathy of both legs and left hand. Told me he did not know what caused it and cannot help me with it. I have tried neurontin,lyrica and endep. All caused more problems than they solved.Now I inspect the numb bits to make sure they are not damaged and just get on with life. It is amazing how much you can ignore when you put your mind to it.. Ron.

  • marbleotis
    marbleotis Member Posts: 720 Member
    #5
    I am over 18 months out

    I had 6 months of Oxi and 5fu.  I had neuropathy in hands/feet/face/teeth/tongue.  Calcium drip was added before/after each infusion at about #5.

    After all this time, I still have in hands and feet.  What REALLY helped is using my hands alot.  I did embroidery like a maniac.  I also tried to stay active.  I am working full time again and go to the gym 3x week. 

    I never took any "meds" for the neuropathy because I felt personally the chemo was enough.

    Good luck to your wife - it will improve, but it will take time.

  • sdp
    sdp Member Posts: 181
    #6
    Neuropathy and supplements

    I had a full course of Folfox and erbitux - approx 8 cycles prior to my resection and balance later - on two occasions the oncologist reduced oxaliplatin dosage because of my neuropathy and cold tolrance symptoms - 

    i had read that taking r-alpha lipoic acid and L glutamine helps . I did take it but I came to know about it after 3 cycles.

    well, the symptoms disappeared after I stopped the chemo and I hardly feel them now - once In a while I take r alpha  lipoic acid and rarely the L glutamine now a days.

    i would suggest u read up on this by doing a search in the various help sites and forums and talk to ur oncologist and see whether he suggestsbu can take it and what dosage.

    i am sure this helps and has helped several people in the past. The search would bring it up. So, pl,try this at the earliest as it is most effective when u r on the chemo which may be causing it.

    all the best

  • Matta
    Matta Member Posts: 39
    #7
    Qutenza

    I´m almost 3 years out of chemo and for 2 years I suffered of a very bad neuropathy, then I got to know Qutenza patches and now I have that treatment at the hospital every 12 weeks. The patches are put under the sole of my feet,  I feel much better, I have a life today.  I´m thankful for Qutenza, I´m not over the pain but the pain is not as much as it was before after I got these patches. 

     

    Matta

  • SilentRenegade
    SilentRenegade Member Posts: 123
    #8
    My dad just ended his chemo

    My dad just ended his chemo treatments about three weeks ago. He is on a medication, but I cannot, for the life of me remember what it is! He's not sure if it is helping, but he says moving around a lot helps with the numbness. His feet do feel like blocks of cement, but he's been working out in the yard a lot the last two weeks since it's been a bit warmer out. He built a grill the other day and says it was much harder than it used to be, but he was determined to finish. He actually felt pain in his finger tips this morning and thought that was good considering they are usually completely numb. 

    His doctor is estimating about 6 months before he really feels a difference, which he says he can tolerate. Obviously that is an estimate, as he is "fresh" off of the chemo train, but his life is pretty normal for now. 

  • abrub
    abrub Member Posts: 2,174 Member
    #9
    I started Alpha Lipoic Acid;

    I started Alpha Lipoic Acid; 600 mg twice a day, at over a year out from chemo, and it helped tremendously.  I've also heard great things about glutamine, tho I never pursued that.  My hands and feet, while not perfect, are substantially better than they were.

  • DD3
    DD3 Member Posts: 136 Member
    #10
    abrub said:

    I started Alpha Lipoic Acid;

    I started Alpha Lipoic Acid; 600 mg twice a day, at over a year out from chemo, and it helped tremendously.  I've also heard great things about glutamine, tho I never pursued that.  My hands and feet, while not perfect, are substantially better than they were.

    Thanks everyone

    Passing all this onto my wife.  You guys and gals are awesome!!!!!

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