Neuropathy After Chemo

ChrisHB
ChrisHB Member Posts: 22
Hello, My brother has completed his second round of aggressive chemo after colon cancer recurred in his liver. He had surgery to remove two lessions on the liver three weeks ago and the surgeon feels the outlook is good. Right now he is dealing with neuropathy in his hands and feet. He feels like it has increased after the surgery and wonders if that may be due to reduced activity during recovery. His doctor told him that the neuropathy may go away in up to six months or posibly not at all. I am wondering if anyone has come across anything to help relieve the numbness and pain? His doctor told him to continue calcium and a vitamin. I have read in a couple posts about Glutamine and also one about Alpha Lipoic Acid. Any ideas would be appreciated. He will go back to chemo at the end of the month. Thanks.
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Comments

  • alharkabus
    alharkabus Member Posts: 9
    I have had some neuropathy in hands and feet-treatment was oxalaplatin at first, and that did the damage. That ended a year ago and some effects are still present, mostly a lack of feeling, increased sensation of cold. I am currently on 5FU and camptosar, but I don't think either of those causes neuropathy, though not sure. I have heard over and over that sometimes it goes away and sometimes it doesn't. Just what we want to hear, right, a lack of clarity? But I have found that a lot of cancer issues are less than clear. Good luck...
  • lfondots63
    lfondots63 Member Posts: 818 Member
    Hi Chris,

    I have just started folfox treatments for colon cancer. One of the drugs is oxalaplatin. One of the side effects are possible neuropathy. My chemo nurses said to take Vitamin b6 and folic acid to help cut down on this. You should also tell your oncologist. Mine said if this starts they can 1/2 the dose of oxalaplatin. I have heard from some it goes away and others that it still lingers. Good Luck and good vibes your way!

    Lisa
  • bugaboo24
    bugaboo24 Member Posts: 5
    Hi Chris, I myself suffer from severe neuropathy in my hands and feet as a result of chemo. The neuropathy started in March of 05 and I had my last chemo treatment in April of 05. I still have a lot of numbness and quite a bit of pain in both my hands and feet. My doctor told me to increase my B vitamins. I take B1, B2, B6 and B12. B vitamins are very good for the nerves but you need to make sure you take equal amounts of each because to much of one can wash out the benefits of the other. I do have to say since I increased my B vitamins, it has seemed to get a little better so far. We'll see what happens down the road. I have had this for over a year now and often get discouraged but I do have a friend that had the same thing and she keeps telling me that her's took a year and a half to go away and one day she woke up and it was gone! So I keep hoping!! There are also several medications for this but I personally don't take them because the side effects scare me. There is quite a bit of information on the web also. Tell your brother good luck and hang in there!!!

    Lisa:)
  • gdpawel
    gdpawel Member Posts: 523 Member
    Neuropathy is a problem that sometimes occurs with chemotherapy treatment. It's not all that rare, especially frequent in patients older than 65 years of age. It is damage to the nerves. It can occur from some chemotherapy drugs used in conventional cancer treatment.

    There are three major groups of nerves in the human body, the peripheral nerves that carry information to and from the limbs, the nerves that supply the bowels and other internal organs, and the nerves of the head which connect to the ears, eyes, taste buds, etc. Nerves in any or all of these major groups can be affected by certain chemotherapy drugs.

    Nerves are vulnerable to many kinds of damage. They can be damaged by certain cancers. This may be caused by the cancer cells producing a particular kind of biological agent that interferes with the function of the nerves. Sometimes, they can be damaged by drugs used in chemotherapy treatment. The chemotherapy drugs that most likely cause nerve damage are the vinca alkaloids(vincristine, vindesine and vinblastine), platinum drugs(cisplatinum, carboplatinum) and the taxanes(taxol, taxotere). These drugs have the potential of interfering with nerve function.

    You may notice symptoms in different areas of your body depending on which groups of nerves are affected. Symptoms in the hands and feet happen when peripheral nerve damage happens and are not rare with vinca alkaloids. The first sign of nerve damage is usually a feeling of tingling and numbness like what you experience when your foot goes to sleep after you've been sitting for a long time in an uncomfortable position. If the problem progresses further, it often produces weakness of the muscles, resulting in loss of strength at the wrist or the ankle. You will notice difficulty in doing up buttons and picking up coins. You may notice that you will tend to trip while walking up stairs or dragging your feet and tend to have a wide-based gait. In severe cases, the weakness may be so severe that you will need a wheelchair.

    When the nerves in the bowel are affected, constipation is the earliest sign. In a few people, the abdomen becomes bloated with a distended bowel that is basically paralyzed. Some of the nerves in the head can also be affected. Platinum drugs can affect the auditory nerve and cause loss of hearing and tinnitus(ringing in the ears). Vision can very occasionally be affected.

    A lot depends on how quickly your cancer treatment can be stopped. Sometimes the need for treatment is more urgent then the residual nerve damage. Sometimes, the balance between benefit from the drug and the side effect of nerve damage is more finely balanced.

    Once treatment has been stopped, recovery is usually slow. It may take months to get even partial improvement and often there will be some residual impairment, either a motor weakness or a sensory numbness or both. Recovery is slower in the feet and legs than in the hands and arms.

    There is no specific treatment that enhances nerve recovery. There are no drugs that will directly stimulate nerve regeneration or recovery. If you have severe and prolonged pain, then the pain may require narcotics often combined with antidepressants. In some cases, certain types of anticonvulsants would be helpful. Treatment options are subjects that you should discuss with your doctor, so you have accurate expectations of potential benefits and side effects.

    Chemotherapy drugs that can cause neuropathy. NCI lists these as most likely to do so:
    Cisplatinum (Platinol)
    Carboplatin (Paraplatin)
    Vincristine (Oncovin)
    Vinblastine (Velban)
    Etoposide/VP-16 (VePesid)
    Cytarabine (Cytosar, Ara-C)
    Hexamethylmelamine (Hexalen)
    Suramin
    Paclitaxel (Taxol) and Docetaxel (Taxotere)
    Other medications reported to contribute to neuropathy include oxaliplatin (Eloxatin), gemcitibine (Gemzar) and thalidomide (Thalomid).
  • 8965
    8965 Member Posts: 34
    Hi Chris

    My dad complained of the numbness in the hands a constant tingle. His oncologist told him to start B-6 it took a while but the symtom did lesson over time even when he continued chemo. Best of luck.
    Christine
  • Clarion
    Clarion Member Posts: 1
    I had neuropathy because of chemo drugs, what helped me was a very weird contraption called a vibe machine. Go to the website and see if there is one in your brother's area www.vibemachine.com. The website isn't the greatest, but maybe there will be a practitioner close by. I know the ones in my area don't charge for cancer survivors and some only cost $5 per session. Of course, there are those out there who are in it for the money, but it just might be worth it! Good luck and my prayers are with you.
  • tasha_111
    tasha_111 Member Posts: 2,072
    gdpawel said:

    Neuropathy is a problem that sometimes occurs with chemotherapy treatment. It's not all that rare, especially frequent in patients older than 65 years of age. It is damage to the nerves. It can occur from some chemotherapy drugs used in conventional cancer treatment.

    There are three major groups of nerves in the human body, the peripheral nerves that carry information to and from the limbs, the nerves that supply the bowels and other internal organs, and the nerves of the head which connect to the ears, eyes, taste buds, etc. Nerves in any or all of these major groups can be affected by certain chemotherapy drugs.

    Nerves are vulnerable to many kinds of damage. They can be damaged by certain cancers. This may be caused by the cancer cells producing a particular kind of biological agent that interferes with the function of the nerves. Sometimes, they can be damaged by drugs used in chemotherapy treatment. The chemotherapy drugs that most likely cause nerve damage are the vinca alkaloids(vincristine, vindesine and vinblastine), platinum drugs(cisplatinum, carboplatinum) and the taxanes(taxol, taxotere). These drugs have the potential of interfering with nerve function.

    You may notice symptoms in different areas of your body depending on which groups of nerves are affected. Symptoms in the hands and feet happen when peripheral nerve damage happens and are not rare with vinca alkaloids. The first sign of nerve damage is usually a feeling of tingling and numbness like what you experience when your foot goes to sleep after you've been sitting for a long time in an uncomfortable position. If the problem progresses further, it often produces weakness of the muscles, resulting in loss of strength at the wrist or the ankle. You will notice difficulty in doing up buttons and picking up coins. You may notice that you will tend to trip while walking up stairs or dragging your feet and tend to have a wide-based gait. In severe cases, the weakness may be so severe that you will need a wheelchair.

    When the nerves in the bowel are affected, constipation is the earliest sign. In a few people, the abdomen becomes bloated with a distended bowel that is basically paralyzed. Some of the nerves in the head can also be affected. Platinum drugs can affect the auditory nerve and cause loss of hearing and tinnitus(ringing in the ears). Vision can very occasionally be affected.

    A lot depends on how quickly your cancer treatment can be stopped. Sometimes the need for treatment is more urgent then the residual nerve damage. Sometimes, the balance between benefit from the drug and the side effect of nerve damage is more finely balanced.

    Once treatment has been stopped, recovery is usually slow. It may take months to get even partial improvement and often there will be some residual impairment, either a motor weakness or a sensory numbness or both. Recovery is slower in the feet and legs than in the hands and arms.

    There is no specific treatment that enhances nerve recovery. There are no drugs that will directly stimulate nerve regeneration or recovery. If you have severe and prolonged pain, then the pain may require narcotics often combined with antidepressants. In some cases, certain types of anticonvulsants would be helpful. Treatment options are subjects that you should discuss with your doctor, so you have accurate expectations of potential benefits and side effects.

    Chemotherapy drugs that can cause neuropathy. NCI lists these as most likely to do so:
    Cisplatinum (Platinol)
    Carboplatin (Paraplatin)
    Vincristine (Oncovin)
    Vinblastine (Velban)
    Etoposide/VP-16 (VePesid)
    Cytarabine (Cytosar, Ara-C)
    Hexamethylmelamine (Hexalen)
    Suramin
    Paclitaxel (Taxol) and Docetaxel (Taxotere)
    Other medications reported to contribute to neuropathy include oxaliplatin (Eloxatin), gemcitibine (Gemzar) and thalidomide (Thalomid).

    gdpawel
    I sure wish my oncologist was half as knowledgeable and helpful as you. I have learned a heck of a lot more reading your posting than I have ever got out of him. Thank you
  • Craig S
    Craig S Member Posts: 11
    Neuropathy
    I finished Folfox about 1 year ago, and still have a good bit of numbness in my feet. Its not painful, but can be annoying. When I was on treatment, I'd have it in both my feet and fingers. My hands are pretty much good now, but my feet still bother me. I'm not sure if that'll ever go away, but some days are better than others. Like others have stated, my onc was a little vague about whether it will go away or not.
  • Clarion said:

    I had neuropathy because of chemo drugs, what helped me was a very weird contraption called a vibe machine. Go to the website and see if there is one in your brother's area www.vibemachine.com. The website isn't the greatest, but maybe there will be a practitioner close by. I know the ones in my area don't charge for cancer survivors and some only cost $5 per session. Of course, there are those out there who are in it for the money, but it just might be worth it! Good luck and my prayers are with you.

    This comment has been removed by the Moderator
  • Craig S said:

    Neuropathy
    I finished Folfox about 1 year ago, and still have a good bit of numbness in my feet. Its not painful, but can be annoying. When I was on treatment, I'd have it in both my feet and fingers. My hands are pretty much good now, but my feet still bother me. I'm not sure if that'll ever go away, but some days are better than others. Like others have stated, my onc was a little vague about whether it will go away or not.

    This comment has been removed by the Moderator
  • aykt36
    aykt36 Member Posts: 28
    thanks
    thanks
  • 24242
    24242 Member Posts: 1,398
    aykt36 said:

    thanks
    thanks

    Pain
    I am one that has suffered terribly for years after all treatments and doctors refused to address the problems feeding me mostly anti depressants. They gave me headaches and nausea no relief from all the pain.
    I was on methadone for almost 5 years as well as 3 others and finally got the pain controlled more than 6 years after my treatments. Now I have new lumps and they are causing me grief just like the first one's I had and everyone tells me that they can't hurt like that. They do and since he manipulated my arm the pain increased in lump areas and radiated from there. Nerves are the source of much pain and don't get why so hard to understand lumps affect things in surrounding area like nerves and muscle.
    I am glad I read this cause I am falling down the stairs and MRI shows deteriation in areas that MS patients show. So this might too contribute to that problem of mine and can only hope I don't scar this pretty face, lol
    Tara
  • Mick123
    Mick123 Member Posts: 18
    24242 said:

    Pain
    I am one that has suffered terribly for years after all treatments and doctors refused to address the problems feeding me mostly anti depressants. They gave me headaches and nausea no relief from all the pain.
    I was on methadone for almost 5 years as well as 3 others and finally got the pain controlled more than 6 years after my treatments. Now I have new lumps and they are causing me grief just like the first one's I had and everyone tells me that they can't hurt like that. They do and since he manipulated my arm the pain increased in lump areas and radiated from there. Nerves are the source of much pain and don't get why so hard to understand lumps affect things in surrounding area like nerves and muscle.
    I am glad I read this cause I am falling down the stairs and MRI shows deteriation in areas that MS patients show. So this might too contribute to that problem of mine and can only hope I don't scar this pretty face, lol
    Tara

    Neuropathy
    Like many I have had and still do have the tingling in feet and toes. I've learned much about it just from reading the posts here and I thank you all for it. As I understand it, it's the platin drugs that are the cause. In any case, a Doctor friend as well as a friendly pharmacist and nurse have all suggested B Complex vitamins. No results to report as yet as I just started taking it but I am hopeful and will keep you informed if there is progress. Thanks again.

    Mick
  • 2hurt42
    2hurt42 Member Posts: 1
    24242 said:

    Pain
    I am one that has suffered terribly for years after all treatments and doctors refused to address the problems feeding me mostly anti depressants. They gave me headaches and nausea no relief from all the pain.
    I was on methadone for almost 5 years as well as 3 others and finally got the pain controlled more than 6 years after my treatments. Now I have new lumps and they are causing me grief just like the first one's I had and everyone tells me that they can't hurt like that. They do and since he manipulated my arm the pain increased in lump areas and radiated from there. Nerves are the source of much pain and don't get why so hard to understand lumps affect things in surrounding area like nerves and muscle.
    I am glad I read this cause I am falling down the stairs and MRI shows deteriation in areas that MS patients show. So this might too contribute to that problem of mine and can only hope I don't scar this pretty face, lol
    Tara

    pain is terrible,why is it so hard for people/ doc 2 understand
    going on 2 yr. bones/joints ache all the time , no one seems 2 think that u should hurt all the time from cancer / if in remission , they think you should be just fine . its unbelievable.
  • sue K
    sue K Member Posts: 18
    2hurt42 said:

    pain is terrible,why is it so hard for people/ doc 2 understand
    going on 2 yr. bones/joints ache all the time , no one seems 2 think that u should hurt all the time from cancer / if in remission , they think you should be just fine . its unbelievable.

    You have my sympathy - I
    You have my sympathy - I feel exactly the same, with constant aches and pains all over. I am free of my cancer just now, but it's hard to feel happy about it when the pain goes on.
    As you say, no-one seems to understand, except the good people on this forum.
    I don't know how long it goes on, but it would be good to get some relief.
    Good luck to you, and God bless
    Sue
  • B.Grinesworth
    B.Grinesworth Member Posts: 4
    2hurt42 said:

    pain is terrible,why is it so hard for people/ doc 2 understand
    going on 2 yr. bones/joints ache all the time , no one seems 2 think that u should hurt all the time from cancer / if in remission , they think you should be just fine . its unbelievable.

    a few ideas
    Here are a few ideas that may to help diminish the effects of neuropathy. Make sure you are aware of environmental factors that may worsen your symptoms, such as effects by hot/cold temps, humidity, etc. Avoid exposure as much as you can to conditions that worsen the neuropathy. Even shoes or other clothing may add to the discomfort. And refrain from alcohol! in addition to worsening your symptoms, alcohol may cause additional nerve damage. Sit down and rest when possible to avoid unnecessary stress on your legs and feet. For diabetics, make sure you tightly monitor and control your glucose levels, even more than normal. This may cause additional injury to your nerves like alcohol. just a few ideas I got from the Center for disease Control (CDC)

    Hope this helps!

    B. Grinesworth
  • todhunter
    todhunter Member Posts: 1
    Foot neuropathy and Teva Flip Flops!
    Cancer and its devastation create a great empathy for humanity. In the last chemo treatment I was told "Get another 10%" off the possibility of recurrence. That meant extra toxicity coursing through my veins (they get to use rubber gloves!). I quit half way through, it was horrible! 2.5 years after last chemo - CT last week - Clean bill of health! Have a colonoscopy!

    My main issue is the sole of my feet. Initially entire sole felt like slabs, now from arch forward. When in shoes it feels like walking on corn cobs or ball bearings - but only when on hard, cold floors or when wearing shoes. Hmmm.... Yea, that's it ... I don' walk on hard, cold floors without wearing my wonderful Teva flip flops (they are SOFT!). I don't wear shoes either. My Berkenstocks also cause NO discomfort. The good news is that I have always worn that foot gear, now I just have to explain myself when in formal meetings. Really loose shoes aren't too bad. Normal fit shoes, tennis shoes don't work without discomfort. I never walk around the house barefoot.

    I also find that my tpyign has issues. Like my fingers move at fidfernt speeds. I guess that the neuropathy, in my fingertips or my brain have been permanently affected my coordination. I was always a good spealer, but that seems to have gone by the waysde. Buck up, put on your flip flops, grow long hair and live life to its fullest. Best wishes to you! Viva Teva (no I don't own stock).
  • PJ Sermons
    PJ Sermons Member Posts: 2
    2hurt42 said:

    pain is terrible,why is it so hard for people/ doc 2 understand
    going on 2 yr. bones/joints ache all the time , no one seems 2 think that u should hurt all the time from cancer / if in remission , they think you should be just fine . its unbelievable.

    In the same boat
    Been cancer free for a year now, but not free of the after effects. I too have server pain in my joints/bones and feet. My job requires me to be on my feet a lot and after about 2 hours of standing I am in so much pain some days I am in tears. They feel like I am walking on a bed of broken glass after someone has smashed them with a large hammer. And yes, I also get the look of disbelief from people around, they just don't have a clue. It is 12:30 in the morning and I can not sleep because of the stabbing pain in my joints and muscles, it feels like someone is standing over me stabbing me with an icepic, horrible pain.
    Been to a Neuro Dr. and he has me taking B12 shots (my husband gives them to me) There are reports that low levels of vitiam B12 makes neuropathy worse, well I will give a shot (excuse the pun), as of yet have not seen much change, if any.
  • gdpawel
    gdpawel Member Posts: 523 Member

    In the same boat
    Been cancer free for a year now, but not free of the after effects. I too have server pain in my joints/bones and feet. My job requires me to be on my feet a lot and after about 2 hours of standing I am in so much pain some days I am in tears. They feel like I am walking on a bed of broken glass after someone has smashed them with a large hammer. And yes, I also get the look of disbelief from people around, they just don't have a clue. It is 12:30 in the morning and I can not sleep because of the stabbing pain in my joints and muscles, it feels like someone is standing over me stabbing me with an icepic, horrible pain.
    Been to a Neuro Dr. and he has me taking B12 shots (my husband gives them to me) There are reports that low levels of vitiam B12 makes neuropathy worse, well I will give a shot (excuse the pun), as of yet have not seen much change, if any.

    Numbness and Pain
    Researchers at Yale School of Medicine reported in a study published in the Proceeding of the National Academy of Sciences, a molecular basis for the peripheral pain or numbness caused by Taxol. It appears to be caused when the drug binds to a protein (neuronal calcium sensor or NCS-1) and initiates improper "calcium" signaling.

    When Taxol binds to NCS-1, it makes the cell more sensitive to normal signals and increases the magnitude and frequency of changes in calcium. Over time, increased calcium levels activate an enzyme called calpain (no pun intended) that degrades proteins, especially NCS-1.

    Calcium signals are needed for nerves to be stimulated and to respond and the loss of NCS-1 makes it more difficult to generate any calcium signals. While the loss of NCS-1 stops the protein interaction that is causing the inappropriate calcium signals, it also decreases the ability to have normal responses (PNAS 104: 11103-11108 June 20, 2007).

    My thought is, ask your doctor about checking your calcium levels and possibly receiving IV or oral calcium supplements.
  • todhunter said:

    Foot neuropathy and Teva Flip Flops!
    Cancer and its devastation create a great empathy for humanity. In the last chemo treatment I was told "Get another 10%" off the possibility of recurrence. That meant extra toxicity coursing through my veins (they get to use rubber gloves!). I quit half way through, it was horrible! 2.5 years after last chemo - CT last week - Clean bill of health! Have a colonoscopy!

    My main issue is the sole of my feet. Initially entire sole felt like slabs, now from arch forward. When in shoes it feels like walking on corn cobs or ball bearings - but only when on hard, cold floors or when wearing shoes. Hmmm.... Yea, that's it ... I don' walk on hard, cold floors without wearing my wonderful Teva flip flops (they are SOFT!). I don't wear shoes either. My Berkenstocks also cause NO discomfort. The good news is that I have always worn that foot gear, now I just have to explain myself when in formal meetings. Really loose shoes aren't too bad. Normal fit shoes, tennis shoes don't work without discomfort. I never walk around the house barefoot.

    I also find that my tpyign has issues. Like my fingers move at fidfernt speeds. I guess that the neuropathy, in my fingertips or my brain have been permanently affected my coordination. I was always a good spealer, but that seems to have gone by the waysde. Buck up, put on your flip flops, grow long hair and live life to its fullest. Best wishes to you! Viva Teva (no I don't own stock).

    This comment has been removed by the Moderator