• anyone here has worsen peripheral neuropathy after completion of chemo?

    Asked by cranburymom on Thursday, June 19, 2014

    anyone here has worsen peripheral neuropathy after completion of chemo?

    my treatment was completed over a year ago, but my symptoms got worsen. My Onc told me that this won't go away and ask me if I want to take a med. Anyone here would like to share your story??? thanks!

    26 Answers from the Community

    26 answers
    • GregP_WN's Avatar
      GregP_WN

      Hi Cranburymom, good to see you here again. I had chemo completed 27 years ago, I still have burning in the feet at night. Some Doctors say it's from chemo, others won't say or say it's something else, just can't say what. It feels the same to me, just like it did 27 years ago. It's not every night, just after I've had a hard day. Others will have some better more recent information for you I'm sure. Thanks for asking your question, I hope you find a remedy!

      over 5 years ago
    • IKickedIt's Avatar
      IKickedIt

      Oxaliplatin is the gift that keeps on giving. If you received the standard FOLFOX, you had Oxaliplatin. It worsens before it improves and the damage it causes can be permanent. My neuropathy in my hands has improved tremendously over the past 2 1/2 years (probably have about 90% of the feeling back), but my feet still feel weird, a bit like clown feet although not nearly as bad as a few years ago. I had heard that if it doesn't improve in a year, it won't get any better, but I didn't find that to be true. My feet are still improving, albeit at a much slower rate, but just a few months ago I realized I could feel the cool floor. Still can't feel heat so I have to be careful when I walk outside barefoot or on the beach. My oncologist has me taking B12 and monitors that level when I have bloodwork done.

      over 5 years ago
    • IKickedIt's Avatar
      IKickedIt

      Sorry, I don't know why I assumed you had FOLFOX, but many platinum-based drugs, like Oxaliplatin, cause the neuropathy that keeps on giving.

      over 5 years ago
    • Cole's Avatar
      Cole

      Mine didn't kick in until two weeks after my last chemo treatment. I thought I had gotten away without it, but then it surprised me. It steadily worsened for about a month and a half. Numb fingers and feet, pains shooting up my arms. But then it has been very slowly getting better. I am three months post chemo now. I still have it but like I said it's starting to decrease. My onc said that for those of us who get it after chemo, it tends to resolve itself and isn't permanent. Here's to hoping :). Good luck.

      over 5 years ago
    • Cole's Avatar
      Cole

      Don't you just love how all onc have differing opinions? Makes it more exciting for us to sort through...

      over 5 years ago
    • Mikilog's Avatar
      Mikilog

      Hi I finished chemo last August and was experiencing some neuropathy ,enough that I did some research to see if there was anyway I could relieve it. I came across a Dana-farber article that recommended 1800 mg of Glutamine/day. I have been taking approx. that amt. for some time and I haven't noticed the neuropathy acting up . MMMMM, now if I could only get some memory back........

      over 5 years ago
    • amontoya's Avatar
      amontoya

      Go to a neurologist for the neuropathy symptoms. That's what my boyfriend did and he finally has SOME relief. Oncologists prescribe chemo for fighting cancer they don't necessarily know how to treat the symptoms of chemo.

      over 5 years ago
    • jojo2's Avatar
      jojo2

      Hi, I am a breast cancer survivor. There is a newer drug for diabetic neuropathy that is producing good results for many with chemo induced neuropathy. It is called Metanx and basically super charged Vitamin B varieties. I am asking to try it on my next check in as 4 years out I still have numbness. My symptoms are much improved from the end of chemo. I was helped immensely by acupuncture. I went from no sensation in my left foot to feeling like I was walking on a hockey puck. Annoying, but still an improvement from no feeling. THE REBUILDER also helped. I called a chiropractor nearby who used it and was told it was effective and worth a try. I bought it myself online because at that time it would have been a fight with insurance and get denied anyway. I used it 2x a day for over a year, then gradually decreased how often to not using it 3 years later. I still have some numbness but don't think of my feet with each step. If I overdo and it feels worse, I get out THE REBUILDER again. I see there are a lot of specialized clinics beginning to offer different methods to improve the condition including cold laser treatments to stimulate the peripheral nerves. You can try one to see which method/s help you and go from there. Best wishes. jojo2

      over 5 years ago
    • debco148's Avatar
      debco148

      B vitamins are the key! My onc prescribed B6 and I asked if B complex was ok and it also helped my energy levels. But, make sure you don't stop exercising..atrophy is the worst! I had a severe reaction to Taxol (part 2 or last 4 of 8 chemo treatments for a lot of breast cancers). Actually made the bottoms of my feet blister and then I couldn't feel my fingers. Very scary. I did try a drug I think Garbantin?? but it made me feel so tired. Good nutrition and exercise first, always. Most Onc's are starting to see how important that is. We've had so many drugs in us that taking more for side effects is awful. Also, find a physical therapist who is trained in this, most insurances will cover up to 12 visits. This helped so much. Also, one of the drugs and 7 hr surgery for reconstruction caused a tendon to tear in my shoulder... therapy helped with that as well. Best of luck!

      over 5 years ago
    • BuckeyeShelby's Avatar
      BuckeyeShelby

      I'm over a year out. Still have issues w/my feet, but my hands are better. I'm on Gabepentin (Neurontin). Problem is that causes swelling, so I'm not sure if my issues are the neuropathy or the meds, but it REALLY hurts if I try to wean off the meds. Darned if I do, darned if I don't.

      over 5 years ago
    • fiddler's Avatar
      fiddler

      Neuropathy is a part of my life. It started more than a year ago after AC ended and T started. It has gotten a little worse in my feet and thumbs - the intensity comes and goes. Sometimes the tip of my tongue reminds me I have it there, too.

      I had my fiddle bows rehaired. The violin maker told me a good friend of his still has neuropathy years after chemo. She lives with it.

      The onco doc offered meds to help me sleep, but it doesn't keep me awake, and the discomfort during the day is do-able. Besides, I gotta wonder, what are the side effects? I listen to the t.v. ads and, jeez, why would anyone take medicine!!!!

      over 5 years ago
    • fiddler's Avatar
      fiddler

      BTW, glutamine (I did the powder) and B worked enough for me to notice the symptoms lessened. Like chemo, what works for one body may not for another. Thanks for the reminder; I forgot about them ... Hmmm ... I wonder where I put them ...

      over 5 years ago
    • glam's Avatar
      glam

      Yes....in my case I started waking up at night with pain on hands and foot after finishing chemo.....my doctors recommended me to go to a peripheral neurologist......I also do some physiotherapy and exercises with rubber balls and with water in a Jacuzzi......vitamins also are helpful.....talk with your doctors to see what they recommend to you....wishing you all the best....God bless you and continue blessing all of us

      over 5 years ago
    • Kathy1's Avatar
      Kathy1

      I have neuropathy in my feet and they bother me every night. The right is worse than the left. Exercise has helped some. I tried lyrica but I do not like the side effects. I don't think mine has gotten worse but it hasn't gotten better. I don't think there is anything that they can do based on my neurologist and oncologist.

      over 5 years ago
    • Marge_D's Avatar
      Marge_D

      I had terrible neuropathy in my hands from Taxol. It was so bad at first I could not drive or touch things (my hands were extremely sensitive -- not numb). I regularly took (and still take) alpha lipoic acid, acetyl carnitine, Vitamin B6, and Vitamin B12. I also used Vitamin E lotion which was the only thing that soothed them. For almost one year I was on gabapentin to lessen the symptoms. Finally, one year after surgery I can say that I am free of neuropathy! It can get better. Read up on line about things to try to help improve it.

      over 5 years ago
    • Carol1286's Avatar
      Carol1286

      Taxol brought on my neuropathy. My last chemo was seven months ago. Still have neuropathy. Lyrica helps a bit. The nerve damage may never go away. I've just learned to deal with it. I watch water temps, don't use stairs, etc. I hope yours doesn't last. Good luck.

      over 5 years ago
    • alohadeb's Avatar
      alohadeb

      Hi! Im just 1 1/2 months out of chemo. From day one of fulfox treatment- 2 of my fingers went numb on my left hand (pinky and 1/2 of my ring finger!) -kinda think that will be arnd forever... the rest of my fingertips only went numb on #12 and hv remained. Not overly bad but it's there. My feet started after chemo stopped. I've only heard from the great people here about how long it might last. Haven't met w my oncol yet since... appt is in July. So... seeing how we're all different... not sure if we've helped or not... but at least you know your not alone!! Good luck and prayers your way!!

      over 5 years ago
    • Roses4ever's Avatar
      Roses4ever

      I also got neuropathy from Taxol. My last chemo was only 4 months ago, but the pain has overwhelmingly been unbearable. I had to go get a second opinion cause my onc was like it will go away and seems to not even care. She did have me try neurontin but even at the highest dose it did absolutely nothing. My pain is so severe that my wrists feel broken, bones in my fingers feel broken, and I can hardly walk due to leg and foot pain. It's been so debilitating. Finally I went to a new onc who also specializes in pain management. He was awesome! He said mine is a mixture of neuropathy, depression, and no estrogen. He put me on methadone. Yes I know it sounds scary but it's a very low dose. Within 2 days I'm feeling almost like a normal person. It's been a week now and I even exercised for 30 min. today. My hands are still numb and I still have some pain in one wrist but nothing like I was before. I know it sounds pretty extreme but mine was definitely an extreme case. It's nice to have someone actually listen to me and know how to treat it. Thank God!!!!

      over 5 years ago
    • barbdee's Avatar
      barbdee

      [phone number redacted]mg of Gabbapentin keeps mine to a decent level. I keep typing, writing & doing crafts, so I won't loose more sensation. When overly tired & stressed seems to make it worse. I'm a year post chemo of carboplatin, taxotere & Herceptin for a year. I heard any of the medications that are metal based are the worst. My team took me off all vitamin supplements during treatment, but we are gradually adding all the "B's" back. Good luck & hugs, Barb

      over 5 years ago
    • gsbasset's Avatar
      gsbasset

      Mine was very bad for a while. I could not even write my name legibly and if I went to an event I had to take a wheelchair. It is now two years after my last Chemo. I still have it but it is not as severe. I take Lyrica and that helps. I can write well now and only use my cane on bad days.

      over 5 years ago
    • Marisol's Avatar
      Marisol

      Because of peripheral neuropathy ("glove" and "sock" numbness and prickling) I could only get 7 weekly and 2 every other week Taxol sessions out of 12 ended in spring 2013. Onc said pain could last forever if unattended or try an opioid and see what happens, which I did not. Then came Letrozol for 5 years, just 1 completed, with joint pain and moody episodes. Numbness and burning persist and are more tolerable. I have started vitamin B and it is helping a bit. No more medications. Enough is enough. We shall overcome some day!

      over 5 years ago
    • TXHills' Avatar
      TXHills

      Vitamin B-12 was what a neurologist recommended for me. Plus B complex for several weeks. It does seem to help. I also had neuropathy from undiagnosed hypothyroid. Getting that back in balance made a difference, too.

      over 5 years ago
    • Kathy1's Avatar
      Kathy1

      TXhills was your B12 levels low before you started taking it? I had heard about B12 but my hemotologist tested my blood and said my levels were good and do not take more. Only asking because so many have mentioned B12 and maybe it would help me.

      over 5 years ago
    • tkantor's Avatar
      tkantor

      Neuropathy is literally a pain. My chemo was 6.5 years ago and I am still experiencing excruciating pain in my feet. My doctor had me on Gabapentin (with no relief) and put me on Lyrica 3x a day. The pain has lessened but I still wake up in the middle of the night because of my feet. I have just learned to live with it and thank God I am alive, rather have the side effects than not feel anything. Good luck to you and hoping you can find relief.

      over 5 years ago
    • Kathy1's Avatar
      Kathy1

      Yes...neuropathy in my feet. Initially it was bad - woke me up thru the nite. Felt like I was walking on needles. My doctor did prescribe lyrics. I did not like the side effects. I tried it for about a month but I got to the point I couldn't remember things...not good. I have found thru physical therapy and exercise it has gotten better. Not gone but better. Good luck it is irritating.

      over 5 years ago
    • Donnafunk's Avatar
      Donnafunk

      Mine was invasive lobular carcinoma and the taxol part of my chemo caused neuropathy. It was troublesome for a few months then lessened up especially in my hands. Now I'm 17 months out and it's back! I didn't expect that, along with headaches returning. My hands are once again tingling and sensitive to even warm water and my feet feel like they're being electrocuted. Hmmmm

      about 1 year ago

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