• I am learning I may have chemo-induced peripheral neuropathy. Is there a specialist who can help me deal with this chemo side effect?

    Asked by Lafflady on Thursday, October 4, 2012

    I am learning I may have chemo-induced peripheral neuropathy. Is there a specialist who can help me deal with this chemo side effect?

    I am still struggling with having just figured out I have chemo-induced peripheral neuropathy. I complained of the light-headedness and tingling in my hands, which will go numb ...feels like they fell asleep. I also have coming-and-going pains in my feet. The light headed-ness has caused me to fall on ocassion... once requiring three stitches in my head. I got some help from this sight before and took it too my doctor. He did blood tests, and said my results were fine. Guess he's not the man. My oncologist had no idea what it was. My cardiologist just told me to keep my hands below my heart. My PC thought it might be a cyst on my wrists... which I have now had removed. Anyway.... is there is name of a specialty or a doctor who helps with living with the side effects of chemo.
    I also recommend making several appointments and get several opinions on the best route for you and your cancer. Chemo should be the last resort. So far it's been worse than the surgery and radiation, which may h

    22 Answers from the Community

    22 answers
    • ticklingcancer's Avatar

      Tingling, numbness, all signs of neuropathy. I get tingling in my fingers and the bottoms of both my feet are completely numb. Are you receiving a "platinum based" chemo? My neuropathy was caused by Cisplatin. I take Gabapentin and it works amazingly. I take 900 mg per day. You can also take alpha lipoic acid. Speak with your oncologist about both. Good Luck.

      almost 8 years ago
    • teddyfuzz's Avatar

      Hi Lafflady. I'm sorry that you are having to go through this. Chemo is the gift that just keeps on giving. I'm surprised that your oncologist wasn't more help. Are you able to talk to another oncologist? They are really the experts when it comes to chemo and its side effects. My neuropathy has gotten better over the months but I do notice it more when my arms are up, like when I'm driving (or like now when I'm typing on the keyboard). I also experience vertigo sometimes that comes out of nowhere. I'm not sure if you are still in chemotherapy or how far out you are but don't forget that you have poisoned your body. It is going to take time to calm things down. Not a very helpful thing to say, but true. Yes, chemo and the lingering side effects suck. But, it's better than the alternative, isn't it? I hope things improve for you and I wish you well my friend. *hugs* Jamie

      almost 8 years ago
    • FreeBird's Avatar

      My dad has some peripheral neuropathy in his feet from his chemotherapy. If it gets to the point where it's intolerable or interferes with mobility, I'm going to ask about the possibility of using the prescription drug Cymbalta. http://www.cancer.gov/clinicaltrials/results/summary/2012/neuropathy0612/print

      I don't believe a specialist is going to be any special help for it. Dad had it with his first major cancer also, and it went away after chemo. My understanding is that sometimes it goes away on its own, sometimes it does not.

      almost 8 years ago
    • nancyjac's Avatar

      The specialist that deals with neurological disorders is a neurologist.

      almost 8 years ago
    • Christiana3's Avatar

      My neighbor is a neurologist and I was going thru the same thing.She recommended I take sublingual B12 twice a day and it helps tremendously with the neuropathy and as chemo does suck the b12 out of your system this is a double good thing. Good luck. I have stage four and receive 3 cocktails every two weeks so if you need any support or help, please let me know. God bless

      almost 8 years ago
    • Mollie's Avatar

      Chemo was just horrible for my grandma too. Her hands would cramp and then tingle too. They said there was nothing they could do about it. Sorry :(((

      almost 8 years ago
    • eweneek's Avatar

      I experienced neuropathy during the Taxol phase of chemotherapy. It was difficult to hang on to objects and it felt as though I had paper cuts on the tips of all my fingers when I used a keyboard. My care team recommended I try a rebuilder. It consists of socks and gloves that I dampen with water and then connect them to a device that send electric currents through the fabric causing electrostimulation of the nerves. I experienced immediate relief that lasted for most of the day. I was also taking B complex. I tried accupuncture which did help but I prefer the rebuilder. The absolute best for symptoms in my feet was manual therapy with a skilled reflexologist. I finished chemo about 8 months ago. I still occasionally notice some neuropathy, but it is very mild.

      almost 8 years ago
    • debco148's Avatar

      We all get some version of this with use of Taxol. Mine was so bad after the first dose that the onc stopped it. She prescribed 200 mgs of B6 every day. You really need to discuss this with your Oncologist they know more about this. I also find Reiki helps and others swear by acupuncture. The chemo is necessary to kill all quick growing cells, so it saves lives, but it is poison to us and we learn to deal with it somehow.. Best of luck.

      almost 8 years ago
    • attypatty's Avatar

      Dear Lafflady:
      Can you repeat that?! Your oncologist had no idea what this was?! My onc warned me of this side effect before I ever began treatment. It is a common side effect of Taxol, one of the breast cancer chemotherapy drugs. I am surpised your onc didn't know. Still, you are smart to educate yourself and not take all the "experts" say-so. When it comes to our cancers, we are our own best experts. Every individual will react differently to these powerful drugs (poisons, really). Six months since I finished Taxol and my feet are numb, my face and lips tingle and my fingertips lack sensitivity. Still, it's a price I am willing to pay to be cancer-free.
      In answer to your question about is there a specialty or a specialist that can deal with this SE, the answer, I fear sadly, is no. I doubt there is anyone anywhere in the entire field of oncology who has answers to all the questions. Every discovery leads only to more questions. The answers and the treatments that come from them change every year, every month, even every week. It is all aimed at improving overall survival and making or keeping us cancer-free, and that's a good thing.
      Fight On,

      almost 8 years ago
    • laurelgonzales' Avatar

      Acupuncture is working great for me for neuropathy. Most insurance plans allow 12 treatments per year. I am doing a lot more than that but it's worth it.

      almost 8 years ago
    • Teddy's Avatar

      I took B6 and it seemed to help.

      almost 8 years ago
    • JudyS's Avatar

      Hi Lafflady,
      My treatment ended 2-1/2 years ago and I still have neuropathy in my hands. I ignored the symptons when I was having chemo because I was in fear that the onc would change my treatment and that the taxotere I was receiving was 100% needed to kill any cancer cells that were still in my body - Her2 Positive is considered a very agressive type of cancer and chance of reoccurence is higher. Well . . . here I am today, but so far I don't have any reoccurence! My onc prescribed Gabapentin at the time, but the pain was so severe I could not sleep at night. My regular doctor referred me to a pain clinc and the doctor there increased the Gabapentin to 3,600mg/day and this stopped the pain and reduced the numbness. I've been on this for 2-1/2 years but was able to reduce it to 2,400mg/day. Every time I try to reduce my pills now, the pain comes back. I've heard that the numbness is damage to the nerves and it takes time for the nerves to regenerate and heal themselves and that sometimes, the nerve damage is permanent. I'm just happy to not be in pain and able to work and enjoy life. I really recommend seeing either a neurologist or to go to a pain clinic. Good luck, I hope you find the help that you need soon.

      almost 8 years ago
    • DOS's Avatar

      My husband has a congenital peripheral neuropathy. Different cause than yours, but same symptoms. He sees a neurologist.

      almost 8 years ago
    • Fusionera's Avatar

      I have nerve pain and neuropathy as a result of my brain surgery; I have been advised that this is likely a permanent condition so keeping it under control is the objective for my oncologist and me. I see others here recommending Gabapentin, which I understand works great. I am highly allergic to gabapentin and other drugs in the same family so I have to take something else. I have seen an Interventional Pain Specialist/Neurologist for help. Perhaps your oncologist can refer you toa neurologist in your medical plan. Wishing you the best of luck in fighting this. I know it's not fun at all.

      almost 8 years ago
    • Ryeman's Avatar

      You're best bet is to find a naturopath. Conventional doctors are good at what they do but have little or no training in nutrition, diet and supporting the body.

      almost 8 years ago
    • Maxine's Avatar

      I went through the same thing-- I even had carporal tunnel tests. The numbness is going away now-- my last chemo was at the end of July. Hang in there-- hopefully it will get better! I saw a neurologist. You don't want to go through the tests if you are still having chemo (like I did). Hopefully you are just having side effects!

      almost 8 years ago
    • twebster49's Avatar

      Definitely, chemo is the gift that keeps on giving...after 12 years, I still have the neuropathy. Metanx is the drug that I have found that helps me more than anything. I, too, took Cisplatin.

      almost 8 years ago
    • Shoeless' Avatar

      I have been told that L-Glutamine will help - it is an over the counter med I think. Never tried it myself. I am 11 years cancer free. My neuropathy came after my 2nd chemo treatment - I was given a cocktail of Taxol and Carboplatin, a common combination, plus another that I can't remember the name of. I take Gabapentin 1200 mg. along with Amitriptyline 25 mg. It helps a lot, although I still have some tingling in the soles of my feet and my left arm will go to sleep sometimes for no reason. As for the lightheaded feeling, that went away within a month for me. I know a lot of people have it longer. Chemo-brain is not imagined and it is not a joke, even though we do joke about it sometimes. My daughter had leukemia and is now 2 years cancer free. Her chemobrain lasted almost a year. And she has a T-shirt that says "I have chemobrain - what's your excuse?" I'm convinced that a sense of humor is absolutely necessary if you have cancer. Luckily, she had/has no neuropathy. I don't know what poisons they used on her, but it was some pretty nasty stuff, as are all chemo meds. Some things can be cured and some can be treated to reduce the symptoms, but in the end, we may have to endure certain side effects whether we like them or not. I just thank God that the doctors knew how to save my baby's life and had the meds to do it. She almost died - was in a coma for 9 days. Late diagnosis is not good. The doctors said 3 days later on the diagnosis and she would not have survived. But she's fine now and we are hopeful that the leukemia will not return.

      almost 8 years ago
    • jhale17's Avatar

      My chemo-induced peripheral neuropathy symptoms were in my hands and feet, were more severe in the later chemo treatments and for some months after. My hands got better first with almost no signs of damage. I notice there is still damage on the front bottom portion of my feet that feels like they are asleep.
      I attended a Tai Chi class once a week for three years. I also did twenty minutes at home most days.

      Tai Chi reduced my balance problems a great deal the first year. There was some unexpected improvement in later years. I still notice the nerve damage in the bottom of my feet. With Tai Chi learning to be careful and aware of what terrains gives trouble in walking I am no longer falling down.

      The class time is about one hour doing slow movements while standing up. If you want something fast you will not find it in Tai chi.

      I recommend going to an instructor first to learn the warm up positions correctly then getting a CD to watch and use at home. I did not do it that way an injured my knee by over doing moves while watching the CD first. There are many CDs out there; I would ask your instructor for one doing his/her style of Tai Chi.

      I am holding good thoughts for you.

      almost 8 years ago
    • SpunkyS's Avatar

      Ugh for your experience.
      I was blessed to have CranioSacralTherapy (CST) or myofascial release therapy - a specialized type of massage, while undergoing therapy. Seems to have helped me. If nothing else it helped reduce stress and the aches of chemo. http://www.cancer.org/Treatment/TreatmentsandSideEffects/ComplementaryandAlternativeMedicine/ManualHealingandPhysicalTouch/craniosacral-therapy

      almost 8 years ago
    • Sisser72's Avatar

      Another side effect of my chemo. is this Neuropathy... Both my hands and feet feel as though they are on fire. I take Gabapentin 3x a day. Only found out I had this 5 days ago. It's one of the top ten worst side effects I've had since starting chemo. Take care

      about 7 years ago
    • DaveWaz's Avatar

      Thank you for sharing your experience. I hope all is well and that you have found ways to cope with the neuropathy you mentioned.

      If you or others are still seeking information on neuropathy, perhaps you will find this article helpful.



      about 7 years ago

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