• dealing with neuropathy and cold sensitivity

    Asked by banzaicat on Monday, July 29, 2013

    dealing with neuropathy and cold sensitivity

    I am wondering if anyone has found B complex vitamins help with the cold sensitivity and neuropathy. My doctor has not prescribed any vitamins. Is anyone taking anything that seems to lessen the effect. I don't mind it now, but really don't want to end up with long-term neuropathy. Also, the oncologist at the Mayo clinic suggested 8 treatments as a sort of insurance or preventative even though my path reports were good post surgery (had a lymph node that was questionable). I see that the typical number of rounds is 12. Anyone know anything about this? I am not at alllllll going to volunteer to have the extra 4 treatments. I WANT a drink with ICE in it!!!!

    16 Answers from the Community

    16 answers
    • LauraJo's Avatar
      LauraJo (Best Answer!)

      I have been taking a Super B Complex vitamin since my second (preventative) round of chemo. I had 8 rounds of Folfox post surgery since I had a couple of lymph nodes involved. Everything else was clean, and I am almost 2 years post all treatment with no problems. The thought was that we get the little cancer monsters while they are microscopic & never have to deal with it again. Post Folfox, I had both hand & foot neuropathy. It took the hands about a year to return to 100% normal; the feet we are still working on - they are probably about 90% now. I am still taking the B vitamins, figuring that it can't hurt.

      almost 7 years ago
    • geekling's Avatar
      geekling

      Also try eating more food which naturally contain B vitamins. If you like, add either Brewers yeast or nutritional yeast (Saccharomyces cerevisiae) to your daily intake. Check out:

      http://www.health-alternatives.com/vitamins-nutrition-chart.html

      for food sources of vitamins but don't forget, please, you need minerals too.

      almost 7 years ago
    • ticklingcancer's Avatar
      ticklingcancer

      For neuropathy, I take gabapentin. 900 mg every morning. I didn't have much luck with the B-Vitamins.

      almost 7 years ago
    • Joy535's Avatar
      Joy535

      I have the neuropathy and cold sensitivity also. I just put my glass of orange juice in the microwave for 30 seconds and stir it before drinking it and it works great. I drink a full 10 ounce glass of milk for lunch and put it in the microwave for 1 minute and stir before drinking it. When I go out to eat I ask for water without ice and "iced" tea without ice and it works fine. My Dr. told me that the cold sensitivity is reversible just by running my hands under warm or hot water; that works! I've just had my 7th. treatment of oxaliplatin, and am going for the 12 I'm supposed to have. I hope I can get there because I figure that if I'm going through these side effects I might as well get all of the benefit I can from the treatment.

      almost 7 years ago
    • Fusionera's Avatar
      Fusionera

      Hi Banzai,

      I wholly empathize with you. I have nerve pain and neuropathy in the left half of my body because of my last brain surgery. I am actually taking Effexor (Venlafaxine is the generic name), which keeps my nerve pain under control. I drink a ton of cold water everyday just because I am a water horse, and I wouldn't want to be deprived of a refreshing, ice cold drink either. ;-) Effexor is actually an antidepressant, but it has the effect of controlling nerve pain. Might your oncologist prescribe a nerve pain med like Venlafaxine or Gabapentin? Might be worth asking him/her. Best of luck!

      Johanna

      almost 7 years ago
    • banzaicat's Avatar
      banzaicat

      Did some research today. B12, 2 and 6 proven to help with chemo neuropathy. I wonder why my doctor isn't giving me this advice. I am glad to hear LauraJo had 8 treats for very similar diagnosis. 2 years! Yay! Gruelling is right and has great advice...follow her suggestion all ya` ll. I definitely already got the microwave and priceless tea thing down. Doesn't mean I like it.

      almost 7 years ago
    • icehockeygirl's Avatar
      icehockeygirl

      I know that feeling I remembering dreaming of a cold coca cola everynite, but when you are on that kind of chemo its a no go. It does go away, when you finish the chemo, but for me thats when the neuropathy kicked in, my hands and feet were pretty numb, i got the feeling back in my hands in about a year and it never came back in my feet it has been 6yrs now. They dont hurt, I just cant feel the bottom of them or my toes, so I have to be careful. Let me know if you have any questions about anything.
      donarae

      almost 7 years ago
    • abrub's Avatar
      abrub

      My onc had me on B6 for neuropathy - 50-100mg 3x/day. (One of my oncs said 50, the other 100). It didn't help me, but it has worked for many.

      As to the number of cycles of Folfox, the US "standard" is 12; I believe that in Europe it is 6 or 8 cycles. My onc said that there was research showing that 8 was as good as 12 in many types of colon cancer. Mine was a rare variety; he wanted me to go for 12, but I quit after 7. I'm still clean 5 years later.

      almost 7 years ago
    • zubsha's Avatar
      zubsha

      The neuropathy is permanent in only 3% of patients and it isn't the cold part that stays The cold part goes away pretty quickly once you stop chemo. A year later I still have odd feelings in my hands and toes but it doesn't impact my life at all I was ok with frozen yogurt within a couple of weeks of finishing treatment (developed epiglottitis 3 weeks after finishing and had to live on froyo for a few days).
      Protecting against neuropathy is controversial There is no proven protocol and there is concern that if you protect the neurons you might also be protecting the cancer cells.
      I took 12 treatments because that was the protocol but my sister was cured with 6 and that was nine years ago. Her tumor was the size of a baseball and had eroded through the wall of her colon (so much worse than one questionable node). Dana Farber has a study underway to prove 6 treatments are enough Sounds like 8 would be ok if your oncologist is agreeable. Also, getting only 8 will limit your neuropathy! Good luck

      almost 7 years ago
    • fredreiss' Avatar
      fredreiss

      Fred Reiss NEUROPATHY! Very rarely do they tell you chemo goes after NERVES (including the ones in the ears for hearing) I love how the oncologists dismissively say "peripheral." They accept it. If there was insurance coverage to prevent this side effect they might look into it! Those are my HANDS and FEET. There's nothing peripheral about my hands and feet. I never knew the word until I had this problem after chemo. I read they can hydrate your chemo with minerals to POSSIBLY REDUCE its effects, so at least try it if it might help. But, I have to say reflexology does help. You have to get blood to those nerves--they heal slowly. Mine has lessened over the last year and a half. But I can't run anymore without a dragging heaviness. I'll keep trying. But I am surfing!

      almost 7 years ago
    • Angel_1's Avatar
      Angel_1

      I have been using Vit.D, but doc prescribed 50,000 unites 2x month. Still at times have problems with neuropathy but noticed the more caffeine I have, the worst it is. Hope that helps. Good Luck!

      almost 7 years ago
    • fredreiss' Avatar
      fredreiss

      A different kind of cold sensitivity. Cold sensitivity were the people who weren't there for me, but then said things like, "After what you've been through I'd think you'd be more tolerant." I'd think, "So, I'm the one who should have changed because you never changed so how would you know what I've been through when you weren't there." I'd think, oh, I changed. I changed the way I thought about you. Now you're--your problem not mine. Good luck with all of you.

      almost 7 years ago
    • dhall's Avatar
      dhall

      been through it = drink thing should not be a problem after awhile if it's platinum that's causing the neuropathy! Been taking B not sure if it's helped or not but I keep taking um!!

      almost 7 years ago
    • Vjp2012's Avatar
      Vjp2012

      I take Glutathione by IV through my Naturopath the day before each chemo. I also get B12 shots and take B complex, Vitamin D and Glutamine. Check with our Oncologist before you do anything. Best of luck!

      almost 7 years ago
    • stormy91649's Avatar
      stormy91649

      In my opinion and experience with the cold sensitivity PROTECT hands and feet with gloves and socks. I was a chef and wore knitted gloves with the throw away plastic gloves over them all the time when in kitchen. Result very little hand problem only one month after 12 treatments. Not as lucky with feet. Still have no feeling on bottom of right foot. Have all other feelings in them just can't know when sometimes discomfort is cause feet are hot or cold with out touching them. It was 60degrees out and I was wearing gloves for months but living in houston 60 degrees is chilly. KEEP EXTRA PAIR OF KNITTED GLOVES in kitchen because you will forget when reaching for something in fridge. Especially when someone says "while you are in there can you grab me a whatever".

      almost 7 years ago
    • TealRose8212's Avatar
      TealRose8212

      I was told to take vitamin B6, but when my skin started to become transparent and kind of black looking, like they were dirty, I was told to stop taking all B vitamins. I became cold sensitive and developed neuropathy during my first 3 months of treatment. My cycles were 2 weeks, one week on the next off. We then stopped all treatment in prep for my surgery, that is when the neuropathy got worse. My Dr never put me back on Folfox treatment. The cold sensitivity went away after the first week and I have been able to have drinks with ice in them again. As for the neuropathy, well that we are still working on. I have been given a drug (Gapapentin 100mg) to deal with the pain in my feet. There have been days when there is no tingling or numbness or pain. I was told it would take time and there is no guarantee the sensations and pain would be 100% gone. Usually after 9 months post treatment and you should know at what level it will settle, but like I've been told from day one......everyone is different and everyone has a different experience. Any drug ending in platin; ie oxiplatin, has theoretical to cause neuropathy. BTW my cousin is an Oncology nurse and she helps me in phrasing my questions so I get the answers I need to make the decisions in my treatment that are best for me. I know my body and my Dr knows my cancer. Together we decide on my treatment.

      almost 7 years ago

    Help the community by answering this question:

    Create an account to post your answer Already have an account? Sign in!

    By using WhatNext, you agree to our User Agreement, and Privacy Policy


    Read and answer more colorectal (colon) cancer questions.  Also, don't forget to check out our Colorectal (Colon) Cancer page.