hormone therapy

Taxol Toes: Coping with Peripheral Neuropathy

Phyllis Johnson Health Guide March 09, 2009
  • When my hands and feet started hurting about a year after I finished chemo, my oncologist said I had, "Taxol toes." She went on to explain that a more accurate term is peripheral neuropathy, which means nerve damage in the extremities--hands and feet.   My hands and feet felt like they were as...

68 Comments
  • Mary Ann
    Mar. 24, 2012

    Not sure if this conversation is still active, but will try.  It's almost 2 1/2 years since chemo (taxol) ended and I am still really struggling with the pain of CIPN in both feet as well as my right leg.  I believe I have tried almost everything - mediations, supplements, vitamins, accupuncture, chiropractic, salves, counseling.  This is pain...

    RHMLucky777

    Read More

    Not sure if this conversation is still active, but will try.  It's almost 2 1/2 years since chemo (taxol) ended and I am still really struggling with the pain of CIPN in both feet as well as my right leg.  I believe I have tried almost everything - mediations, supplements, vitamins, accupuncture, chiropractic, salves, counseling.  This is pain that's difficult to ignore, day and night.  Please post if you know of any cutting edge treatments. 

    • PJ Hamel
      Health Guide
      Mar. 24, 2012

      There are no cutting edge treatments that I've heard of, Mary Ann, and I try to keep up. Your best bet would be to contact a Comprehensive Cancer Center, where the top researchers are putting research into practice, and see if someone there can help. Other than that - have you tried a pain management clinic? I'm sorry you'r ehaving to go through this... PJH...

      RHMLucky777

      Read More

      There are no cutting edge treatments that I've heard of, Mary Ann, and I try to keep up. Your best bet would be to contact a Comprehensive Cancer Center, where the top researchers are putting research into practice, and see if someone there can help. Other than that - have you tried a pain management clinic? I'm sorry you'r ehaving to go through this... PJH

    • Phyllis Johnson
      Health Guide
      Mar. 25, 2012

      Mary Ann, I saw a neurologist about this very issue this winter.  He did a bunch of tests to find out more about what kind of neuropathy I have.  He said long-term neuropathy like mine, which we assumed was from Taxol, can actually have other causes.  In the end though, he recommended that I continue with gabapentin (generic name of Neurontin). ...

      RHMLucky777

      Read More

      Mary Ann, I saw a neurologist about this very issue this winter.  He did a bunch of tests to find out more about what kind of neuropathy I have.  He said long-term neuropathy like mine, which we assumed was from Taxol, can actually have other causes.  In the end though, he recommended that I continue with gabapentin (generic name of Neurontin).  He said there are some newer medications like Lyrica, but they are more expensive, and he hasn't found them to be better for most patients.  He starts people on the gabapentin and then might try the newer drugs if they don't work.

      I can still feel the tingling on the medication, but it is worse when I stop it.  Its most important function is that it helps me sleep.  During the day I can distract myself by thinking about other things, but at night the pain is hard to ignore.

      It sounds like you have tried most of the things I might recommend.  A neurologist is probably the kind of doctor who is most likely to be able to help you although PJ's recommendation of a pain clinic is a good one too. 

  • Kimbers45368
    Sep. 03, 2011

    Just had my last Taxol treatment yesterday.  The 12 weeks of Taxol was supposed to be "a walk in the park" compared to the "big dogs" of chemo.  However, I found that was not the case.  About 3 weeks into Taxol I was blessed with shingles...and then about 9 weeks in I developed the tingling toes which then with each passing week became tingling...

    RHMLucky777

    Read More

    Just had my last Taxol treatment yesterday.  The 12 weeks of Taxol was supposed to be "a walk in the park" compared to the "big dogs" of chemo.  However, I found that was not the case.  About 3 weeks into Taxol I was blessed with shingles...and then about 9 weeks in I developed the tingling toes which then with each passing week became tingling half foot and not my entire foot.  I also feel like I have been hit by a bus.  However, after reading some of the other posts...I do not have anything to complain about.  I was happy to learn that I am not alone....a little concerned that this PN may last longer than I anticipated.

    • Phyllis Johnson
      Health Guide
      Sep. 03, 2011

      Everyone has different side effects from chemo.  Although most people find the taxanes easier than drugs like Adriamycin, for some people the aches of Taxol or Taxotere are worse.  You might ask the doctor if taking B vitamins now would interfere with any of your treatment drugs.  If your doctor gives approval, taking them might reduce your chances...

      RHMLucky777

      Read More

      Everyone has different side effects from chemo.  Although most people find the taxanes easier than drugs like Adriamycin, for some people the aches of Taxol or Taxotere are worse.  You might ask the doctor if taking B vitamins now would interfere with any of your treatment drugs.  If your doctor gives approval, taking them might reduce your chances of permanent neuropathy.  If your oncologist doesn't have ideas about treating it, you could ask for a referral to a neurologist.  Although neuropathy goes away when treatment ends for most patients on Taxol, it can be a permanent side effect.  As a person who still has mild neuropathy 13 years after treatment, I think it is important to start treating it as soon as possible.  I hope you are one of the many whose tingling toes gets better when treatment ends.

  • Betty
    Oct. 21, 2010

    I have the tingly/falling asleep hands and feet.  My neurologist suggested 250 mg of Niacin and 50 mb B6.  I'd love to say it solved the problem, but it didn't.  I've learned to live with it and be careful as described.

    • Phyllis Johnson
      Health Guide
      Oct. 21, 2010

      I had a similar experience with vitamin therapy, but I've heard other people say it helped them.  I'm glad you have found a way to live with the neuropathy, but stay in touch with your doctor.  Some newer drugs might come along that will help.

    • mercedes
      Nov. 17, 2010

      I was offered Taxol but after getting sick once I refused it. Now I just take Gabapinton. I have been taking vitamins everyday before the Cancer came so that is not anything new to me.

      I said I would just live with it, but found myself getting depressed. So I go to a Therapist for my feet and now go next week for my hands. Hopefully, it'll help me get back...

      RHMLucky777

      Read More

      I was offered Taxol but after getting sick once I refused it. Now I just take Gabapinton. I have been taking vitamins everyday before the Cancer came so that is not anything new to me.

      I said I would just live with it, but found myself getting depressed. So I go to a Therapist for my feet and now go next week for my hands. Hopefully, it'll help me get back to work because staying home isn't working for me.

    • Phyllis Johnson
      Health Guide
      Nov. 18, 2010

      I hope the therapist helps you.  Let us know if it does and what kind of therapy they do.  A lot of people will be interested.  Keep in mind that the Taxol is designed to kill cancer and the Gabapentin is designed to reduce nerve pain, so you might want to talk to the doctor about whether you have had enough chemo to reduce your chances of recurrence...

      RHMLucky777

      Read More

      I hope the therapist helps you.  Let us know if it does and what kind of therapy they do.  A lot of people will be interested.  Keep in mind that the Taxol is designed to kill cancer and the Gabapentin is designed to reduce nerve pain, so you might want to talk to the doctor about whether you have had enough chemo to reduce your chances of recurrence to an acceptable level.  I hope you can soon get back to work.  I found I was much less depressed when I was busy helping other people.  If your work requires fine motor skills, you might ask if there are some accommodations that could make it easier to do.  At first I dropped things and tripped pretty often, but gradually I learned to compensate for the lack of accurate information going from my fingers and feet to my brain.  Good luck with the therapy.

  • Anonymous
    Adouni
    Dec. 13, 2009

    It is depressing to hear that you still have Taxol feet (I like that term) after 11 years.  I am two years down the road and was hoping that it would soon disappear.  Alas!  In any case, I'd like to share my experience. After my treatment I participated in a study about whether Medical Qigong can help after cancer treatment. I find that it helps...

    RHMLucky777

    Read More

    It is depressing to hear that you still have Taxol feet (I like that term) after 11 years.  I am two years down the road and was hoping that it would soon disappear.  Alas!  In any case, I'd like to share my experience. After my treatment I participated in a study about whether Medical Qigong can help after cancer treatment. I find that it helps with everything, including the neuropathy, provided I do it every day. My theory is that it improves circulation in the feet and toes and helps with everything. I found a link to the international institute of medical qigong, maybe you would like to check it out. That, and acupuncture have helped me reduce the number of medications I take for my various ailments. They did not replace those, so don't get me wrong. I am not advocating switching. Just check it out and see if it works for you as well as it does for me. http://www.medicalqigong.org/ This site has an explanation of what it is. 

    • Phyllis Johnson
      Health Guide
      Dec. 13, 2009

      Thanks for the link.  I've heard of this medicine before but don't know much about it.  I know people who have had good results from acupuncture for other chronic pain conditions, so it seems like a good treatment to try for neuropathy.  In fact, I did have two sessions of acupuncture, but the acupuncturist was far from my house and my insurance...

      RHMLucky777

      Read More

      Thanks for the link.  I've heard of this medicine before but don't know much about it.  I know people who have had good results from acupuncture for other chronic pain conditions, so it seems like a good treatment to try for neuropathy.  In fact, I did have two sessions of acupuncture, but the acupuncturist was far from my house and my insurance didn't cover the treatments, so I probably didn't give it enough time to work.  Many people do get well from their neuropathy, so don't think my experience with it will be yours.  

    • Anonymous
      Adouni
      Dec. 13, 2009

      Thanks for this. I would say keep up with the acupuncture. But don't go to someone who had a six week or months course and is an MD. Go to a traditional Chinese medicine practitioner. They can do magic for chronic stuff western medicine can't touch.  Anyway, I kept a blog while I was in treatment.  I think I talk about this. Check it out. 


      http://lizboobblues.blogspot.com/...

      RHMLucky777

      Read More

      Thanks for this. I would say keep up with the acupuncture. But don't go to someone who had a six week or months course and is an MD. Go to a traditional Chinese medicine practitioner. They can do magic for chronic stuff western medicine can't touch.  Anyway, I kept a blog while I was in treatment.  I think I talk about this. Check it out. 


      http://lizboobblues.blogspot.com/

    • PJ
      PJ
      May. 17, 2010

      I feel your pain as the pain in my feet is so bad at times I can hardly walk. The sad thing about it is that not once did my Dr's say anything about the chances of Neuropathy. I did not even know what the word meant or what it was. About half way through my treatments I began to notice my toes feeling numb and tingling, but you are taking Chemo, so you think...

      RHMLucky777

      Read More

      I feel your pain as the pain in my feet is so bad at times I can hardly walk. The sad thing about it is that not once did my Dr's say anything about the chances of Neuropathy. I did not even know what the word meant or what it was. About half way through my treatments I began to notice my toes feeling numb and tingling, but you are taking Chemo, so you think you are suppose to feel like crap. I mentioned it to the nurses and they say yea that happens sometimes but it will get better once you get finished with the treatments. Well, wrong my feet are in so much pain most of the time I can hardly walk and the sad thing is most of the people around me act like I am just making it all up, which gets me very depressed at times. Even my family just does not seem to get just how much pain I am in all the time. It is sooooo great to read and hear from others with some of the same symptoms, not that I am gald ya'll are having problems, but it does make it real to me, it's not all in my head. I am almost one year out from Chemo and have started going to Neuro Dr about 4 weeks ago. He has run several test emg/and some kind of muscle test were they stuck needles in my muscles from the bottom of my feet to the middle of my back, not a fun test at all. He has started me on Neurontin, up 600 mg a day right now, with maybe a little improvement, too soon to tell yet. Not sure I can live with the side effects and plan to ask him is this a fix or a band aide, don't really want to take this kind of medicine for the rest of my life, just to many possible side effects. It's kind of damn if you do and damn if you don't kind of thing. God bless you all and best of health to you all.

      PJ

    • Phyllis Johnson
      Health Guide
      May. 18, 2010

      I'm glad you found the neurologist.  That's really the doctor who is the expert in knowing how to help this problem.  There are people whose neuropathy does go away on its own after chemo; in fact, that's what happens most frequently.  The neurologist can help you find the acceptable balance between pain relief meds and side effects.  There...

      RHMLucky777

      Read More

      I'm glad you found the neurologist.  That's really the doctor who is the expert in knowing how to help this problem.  There are people whose neuropathy does go away on its own after chemo; in fact, that's what happens most frequently.  The neurologist can help you find the acceptable balance between pain relief meds and side effects.  There are several nerve pain meds.  The Neurontin comes in a generic version and it's been around longer, so it's a good one to start with.  Also ask about vitamin therapy.  Some people get good results with that.  It's important to have a doctor who understands what you are going through.  I'm sorry that you've had to cope with folks who "don't get it."

    • Mary Ann
      Jun. 28, 2010

      I am very happy to have found you all.  I hope this site is still active.  I need hope more than anything and reading the comments here today gives me some hope.  (7 months since last Taxol and feet and right leg pretty sore, burning, and tingling most days.)  Some days i don't feel like living this life.

    • Phyllis Johnson
      Health Guide
      Jun. 30, 2010

      Yes, we are definitely still an active site.  It sounds like you need help on two levels:  dealing with neuropathy pain and dealing with the long-term changes that cancer has brought to your life.  I wish I could tell you that your neuropathy will get better, but I cannot promise that.  Some people do get over neuropathy, and since yours...

      RHMLucky777

      Read More

      Yes, we are definitely still an active site.  It sounds like you need help on two levels:  dealing with neuropathy pain and dealing with the long-term changes that cancer has brought to your life.  I wish I could tell you that your neuropathy will get better, but I cannot promise that.  Some people do get over neuropathy, and since yours is still fairly new, there is a good chance that you will get better.  I stil have neuropathy pain 12 years out, but that is partly because I decided that I preferred to live with the neurpathy than the side effects I experienced from the medicines that helped the pain.  I know other people who have had very good pain management results with minimal side effects.  There are several drugs in the Neurontin/Lyrica family that have helped people as well as a host of anti-depressants that reduce nerve pain.  Some people have had good results from vitamin therapy.  I would recommend that you see a neurologist and/or pain mangagement doctor to deal with the pain in your hands and feet.  There may be other drugs that can give you better results than you have now.  Don't let anyone just brush it off.  

      I would also suggest that you talk with a counselor and/or a support group about your feelings surrounding your cancer experience.  The first year or so after treatment can be extremely difficult emotionally as you adjust to your "new normal". 

    • Mary Ann
      Jun. 30, 2010

      Thank you, Phyllis, for your responses. Getting used to the "new normal" is a good description of this process. I was very focused on weekly chemo and radiation goals and completely unprepared for the adjustment to post-treatment life, especially peripheral neuropathy.

       

      Pain and numbness was more extensive in right leg and foot so I did get referred to...

      RHMLucky777

      Read More

      Thank you, Phyllis, for your responses. Getting used to the "new normal" is a good description of this process. I was very focused on weekly chemo and radiation goals and completely unprepared for the adjustment to post-treatment life, especially peripheral neuropathy.

       

      Pain and numbness was more extensive in right leg and foot so I did get referred to a neurologist - saw 2 of them over 4 months - and got 2 conflicting opinions. Neither mentioned Lyrica or complementary treatments I've read about on this list.  I've been told things I would like to post here for comment:  "If chemo induced PN hasn't improved in 6 months, it won't improve." vs. "PN could continue to improve for 2 years but then wouldn't get any better after that."  And, "numbness and burning up to the thigh means the periperal nerve will have to grow all the way back down from the thigh" (which it cannot do in 2 years).  vs. "Burning in the thigh and calf means nerves are growing back independently of the peripheral nerve."  I am fairly confused and depressed by the conflicting opinions.

       

      I do recommend support groups and talk therapy.  Neither are available through my HMO but I am seeking them on my own.

    • Phyllis Johnson
      Health Guide
      Jun. 30, 2010

      Conflicting medical opinions can be very frustrating.  Perhaps one reason for conflicting opinions on the long-term effects of a drug like Taxol is that doctors haven't been using Taxol all that long (comparatively speaking--I'm in the first group of Stage III patients to get Taxol--before 1998 it was for Stage IV patients who usually didn't live long...

      RHMLucky777

      Read More

      Conflicting medical opinions can be very frustrating.  Perhaps one reason for conflicting opinions on the long-term effects of a drug like Taxol is that doctors haven't been using Taxol all that long (comparatively speaking--I'm in the first group of Stage III patients to get Taxol--before 1998 it was for Stage IV patients who usually didn't live long enough to have long-term side effects).  

      I'm guessing that a lot of what doctors know about peripheral neuropathy is based on their observations of it in diabetic patients, and the way cancer patients respond may be different than for diabetics.  Doctors are only now starting to have a large pool of long-term cancer survivors to study, and there aren't all that many scientific studies of long-term survivors yet.  So your doctors are probably basing their opinions at least partly on their experience with their own pool of patients who would be too small a group to provide statistically valid evidence.  We are in the pioneers who will provide information for the next generation.

    • Susann
      Jul. 26, 2010

      Reading about all the taxol neuropathy is so sad. I'm recovering from Guillain Barre Syndrome (Miller Fisher variant), which is a demyelinizing neuropathy with very fast onset. It's a drag, but the prognosis is good, though recovery takes months. One has to rebuild that myelin sheath around the nerves, which an autoimmune mistake destroyed in a matter of days....

      RHMLucky777

      Read More

      Reading about all the taxol neuropathy is so sad. I'm recovering from Guillain Barre Syndrome (Miller Fisher variant), which is a demyelinizing neuropathy with very fast onset. It's a drag, but the prognosis is good, though recovery takes months. One has to rebuild that myelin sheath around the nerves, which an autoimmune mistake destroyed in a matter of days. It takes time, it builds patience, but it is not only possible but necessary and so rewarding.

       

      In my struggles to get better, I checked out every nutrient which I could find that helps regrow myelin. I found a lot of things to try. I decided I was not a science experiment, and that getting better fast was more important than knowing exactly which thing I tried was the most effective. Even though I'm now eleven weeks out of the hospital, I keep finding new things which regrow or support myelin and thus enable the nerves to work right again. One would think I had already found everything, but yesterday I discovered calcium AEP. Google "calcium AEP and MS" I've found that anything which might affect MS will apply to my neuropathy, since MS is a disease involving myelin.

       

      The most effective thing I have found is called "Nerve Support Formula." I read the initial page explaining neuropathy, and then moved on to read the testimonials, a number of them from people suffering from chemo after effects (including Taxol). Here:

       

      http://www.mcvitamins.com/neuropathy.htm

       

      You can find the testimonials from that page.

       

      My fingers still have neuropathy, but it's receding slowly, seems like a millimeter at a time. However, the extreme tenderness and pain from it was gone a few days after I started their formula, just leaving the pins and needles and glove anesthesia  to ebb away with glacial speed. It contains improved types of Vitamin B1 and B12, both of which are hard to absorb or retain in their ordinary forms. Benfotiamine is a type of B1 which is easily absorbed and stays in the body a long time. I already knew about the Methyl form of Vitamin B12, which had improved my sleep for over a year, so that gave the company credibility with me. Besides the formula, which contains methyl B12, I still take methyl B12 in a sublingual tablet in the evening, since it absorbs better right into the blood stream instead of through the stomach and liver. B12 is so crucial for nerve function that one might as well get a ton of it. It has no side effects whatever the dosage.

       

      Other things I like and am using: Ubiquinol (a more easily used form of CoQ10). It helps the cells use energy (Krebs Cycle.)

       

      Progesterone cream -- the Schwann cells surrounding nerve tissue which rebuild myelin actually synthesize their own progesterone! And when they are building myelin sheath, the progesterone receptors are firing like mad. Since post-menopausal women are usually very low in progesterone, I decided to get the background level higher. I started using some progesterone cream all around my eyes and hands. My double vision started to resolve a few days later, when I had been over five weeks out of the hospital and the doubling had not improved at all.

       

      Ashwagandha is an Ayurvedic herb which improves energy (like ginseng, but in a calm way.) Someone with a slow demyelinizing neuropathy said he reversed it and got well again with ashwagandha, and plans to use ashwagandha the rest of his life. I find that the tincture works best, in a little water. If I feel discouraged, ashwagandha seems to get me in a stronger frame of mind, without getting hyper.

       

      I also take niacinamide, B6, and folic acid. Plus the usual antioxidants -- alpha lipoic acid, vitamin E, selenium. I also take a lot of Vitamin D. Seems we all are needing more of that than people used to think.

       

      When I started using magnesium oil (really a brine), rubbing it into my skin and then rinsing it off later, my sleep improved a great deal. I can't take magnesium supplements by mouth -- irritates the gut.

       

      My neurologist means well, and I will never forget that he got the treatment for Guillain Barre to me with lightning speed. Time is of the essence for Guillain Barre, which can lead to total paralysis (on a ventilator) if allowed to run its course. However, when I couldn't sleep and the oxycodone was dragging me down, he prescribed neurontin. I couldn't hack more than four days of it due to the side effects. I had a very dreary week getting off it and the oxycodone at the same time. My pain gradually went down as my arms healed, but the insomnia only went away when I used the magnesium "oil." (Transdermal magnesium, very good for pain in general, not to mention anxiety.)

       

      The painkillers may help you get down the road, at least temporarily, but they are doing nothing to heal your nerves. Nutrient support needs time to work, but once anything is starting to get better from it, one understands and just keeps trying. It's not medication, working instantly (though methyl B12's effect on my sleep quality was instantaneous after the first sublingual tablet.) But usually it takes days or weeks, and as complete a set of nutrients and good food as you can manage, so all the puzzle pieces are there. And then your body does the rest. It will always try to heal, given the slightest opportunity.

       

      It's also important, I strongly believe, to realize what kinds of food you need to rebuild any part of your body, especially your nerves. I'm eating eggs every day (myelin contains cholesterol!! You NEED cholesterol!) and grassfed beef and lamb, with all the fat, and unsalted butter from mostly grassfed cows. (Tillamook brand.) To rebuild nerve tissue and myelin, you need the raw materials for steroids, since it depends on progesterone, protein, and good fats. "Good fats" are grassfed saturated fats, plus fish oils, not polyunsaturates, which oxidize too easily and can't rebuild cell membranes. Every cell membrane contains cholesterol, which is why some people on statins get neuropathy from them.

       

      Good luck -- I'll check in here now and then, and see how things are going. I plan to go on with the benfotiamine and methyl B12 the rest of my life. Some of the rest I may ease off of once I'm well.

       

       

    • Susann
      Jul. 26, 2010

      Reading about all the taxol neuropathy is so sad. I'm recovering from Guillain Barre Syndrome (Miller Fisher variant), which is a demyelinizing neuropathy with very fast onset. It's a drag, but the prognosis is good, though recovery takes months. One has to rebuild that myelin sheath around the nerves, which an autoimmune mistake destroyed in a matter of days....

      RHMLucky777

      Read More

      Reading about all the taxol neuropathy is so sad. I'm recovering from Guillain Barre Syndrome (Miller Fisher variant), which is a demyelinizing neuropathy with very fast onset. It's a drag, but the prognosis is good, though recovery takes months. One has to rebuild that myelin sheath around the nerves, which an autoimmune mistake destroyed in a matter of days. It takes time, it builds patience, but it is not only possible but necessary and so rewarding.

       

      In my struggles to get better, I checked out every nutrient which I could find that helps regrow myelin. I found a lot of things to try. I decided I was not a science experiment, and that getting better fast was more important than knowing exactly which thing I tried was the most effective. Even though I'm now eleven weeks out of the hospital, I keep finding new things which regrow or support myelin and thus enable the nerves to work right again. One would think I had already found everything, but yesterday I discovered calcium AEP. Google "calcium AEP and MS" I've found that anything which might affect MS will apply to my neuropathy, since MS is a disease involving myelin.

       

      The most effective thing I have found is called "Nerve Support Formula." I read the initial page explaining neuropathy, and then moved on to read the testimonials, a number of them from people suffering from chemo after effects (including Taxol). Here:

       

      http://www.mcvitamins.com/neuropathy.htm

       

      You can find the testimonials from that page.

       

      My fingers still have neuropathy, but it's receding slowly, seems like a millimeter at a time. However, the extreme tenderness and pain from it was gone a few days after I started their formula, just leaving the pins and needles and glove anesthesia  to ebb away with glacial speed. It contains improved types of Vitamin B1 and B12, both of which are hard to absorb or retain in their ordinary forms. Benfotiamine is a type of B1 which is easily absorbed and stays in the body a long time. I already knew about the Methyl form of Vitamin B12, which had improved my sleep for over a year, so that gave the company credibility with me. Besides the formula, which contains methyl B12, I still take methyl B12 in a sublingual tablet in the evening, since it absorbs better right into the blood stream instead of through the stomach and liver. B12 is so crucial for nerve function that one might as well get a ton of it. It has no side effects whatever the dosage.

       

      Other things I like and am using: Ubiquinol (a more easily used form of CoQ10). It helps the cells use energy (Krebs Cycle.)

       

      Progesterone cream -- the Schwann cells surrounding nerve tissue which rebuild myelin actually synthesize their own progesterone! And when they are building myelin sheath, the progesterone receptors are firing like mad. Since post-menopausal women are usually very low in progesterone, I decided to get the background level higher. I started using some progesterone cream all around my eyes and hands. My double vision started to resolve a few days later, when I had been over five weeks out of the hospital and the doubling had not improved at all.

       

      Ashwagandha is an Ayurvedic herb which improves energy (like ginseng, but in a calm way.) Someone with a slow demyelinizing neuropathy said he reversed it and got well again with ashwagandha, and plans to use ashwagandha the rest of his life. I find that the tincture works best, in a little water. If I feel discouraged, ashwagandha seems to get me in a stronger frame of mind, without getting hyper.

       

      I also take niacinamide, B6, and folic acid. Plus the usual antioxidants -- alpha lipoic acid, vitamin E, selenium. I also take a lot of Vitamin D. Seems we all are needing more of that than people used to think.

       

      When I started using magnesium oil (really a brine), rubbing it into my skin and then rinsing it off later, my sleep improved a great deal. I can't take magnesium supplements by mouth -- irritates the gut.

       

      My neurologist means well, and I will never forget that he got the treatment for Guillain Barre to me with lightning speed. Time is of the essence for Guillain Barre, which can lead to total paralysis (on a ventilator) if allowed to run its course. However, when I couldn't sleep and the oxycodone was dragging me down, he prescribed neurontin. I couldn't hack more than four days of it due to the side effects. I had a very dreary week getting off it and the oxycodone at the same time. My pain gradually went down as my arms healed, but the insomnia only went away when I used the magnesium "oil." (Transdermal magnesium, very good for pain in general, not to mention anxiety.)

       

      The painkillers may help you get down the road, at least temporarily, but they are doing nothing to heal your nerves. Nutrient support needs time to work, but once anything is starting to get better from it, one understands and just keeps trying. It's not medication, working instantly (though methyl B12's effect on my sleep quality was instantaneous after the first sublingual tablet.) But usually it takes days or weeks, and as complete a set of nutrients and good food as you can manage, so all the puzzle pieces are there. And then your body does the rest. It will always try to heal, given the slightest opportunity.

       

      It's also important, I strongly believe, to realize what kinds of food you need to rebuild any part of your body, especially your nerves. I'm eating eggs every day (myelin contains cholesterol!! You NEED cholesterol!) and grassfed beef and lamb, with all the fat, and unsalted butter from mostly grassfed cows. (Tillamook brand.) To rebuild nerve tissue and myelin, you need the raw materials for steroids, since it depends on progesterone, protein, and good fats. "Good fats" are grassfed saturated fats, plus fish oils, not polyunsaturates, which oxidize too easily and can't rebuild cell membranes. Every cell membrane contains cholesterol, which is why some people on statins get neuropathy from them.

       

      Good luck -- I'll check in here now and then, and see how things are going. I plan to go on with the benfotiamine and methyl B12 the rest of my life. Some of the rest I may ease off of once I'm well.

       

       

    • Susann
      Jul. 26, 2010

      Sorry about the doubling. I had trouble signing in for the first time.

    • Phyllis Johnson
      Health Guide
      Jul. 26, 2010

      Susann, thanks for sharing what has helped your neuropathy.  My neurologist also prescribed B vitamins and Vitamin E to help rebuild my nerves.  It is extremely important for breast cancer patients to check with their doctors about using supplements.  Some that are very useful for healthy people should not be used while taking chemo or some other...

      RHMLucky777

      Read More

      Susann, thanks for sharing what has helped your neuropathy.  My neurologist also prescribed B vitamins and Vitamin E to help rebuild my nerves.  It is extremely important for breast cancer patients to check with their doctors about using supplements.  Some that are very useful for healthy people should not be used while taking chemo or some other cancer treatments.  The progesterone you mention might also be inappropriate for a breast cancer survivor depending on the type of tumor.  Like you, I decided that Neurontin wasn't worth the side effects I had; however, I know other people who have had good results.  I'm sure many of our readers will want to print out your suggestions and talk to their doctors about them.  I'm so glad that you are seeing an improvement.

    • Susann
      Jul. 26, 2010

      Phyllis, glad you're watching the site and answering so fast.

      I understand the anxiety over medication and nutrient interaction.

       

      There is one really helpful thing I found out --- ashwagandha is very helpful for cancer.

       

      Here's a link to Sloan Kettering. You'll have to accept their legal disclaimer notice to get to the real page.

       

      http://www.mskcc.org/mskcc/html/69127.cfm...

      RHMLucky777

      Read More

      Phyllis, glad you're watching the site and answering so fast.

      I understand the anxiety over medication and nutrient interaction.

       

      There is one really helpful thing I found out --- ashwagandha is very helpful for cancer.

       

      Here's a link to Sloan Kettering. You'll have to accept their legal disclaimer notice to get to the real page.

       

      http://www.mskcc.org/mskcc/html/69127.cfm

       

      <<Ashwagandha reduced growth of breast, central nervous system, colon, and lung cancer cells (6) without inducing cell death in normal cells in vitro (7). In addition, animal studies suggest ashwagandha has antitumor, immunomodulatory, antioxidant, and anti-stress properties. Other studies have shown cytotoxic, chemopreventative, immunomodulating (8), and radiosensitizing effects (1) (9) (10) in addition to enhancement in chromosomal stability (11). The herb may also help prevent chemotherapy-induced neutropenia (12). However, the effects of ashwagandha in cancer patients have yet to be determined.>>

       

      No doubt a careful web search will show a lot more information about it. There are many other hits. I don't pay attention to the kind of semi-mystical sites which talk about chanting "om", but instead look at medical and scientific research. A lot has been done on ashwagandha. Pharma has found sixteen active compounds in it, and there seems to be something of a race on to isolate and test them so they can be patented. Ashwagandha has also been used by millions of people for 4000 years on the Indian subcontinent, with no side effects mentioned, except that it is "heating" for people who already feel hot.

       

      I could understand that women after breast cancer would feel extremely anxious about hormones. Just as I don't feel like eating chicken anytime soon, however wholesomely raised and perfectly cooked it might be. (My Guillain Barre was a reaction to a campylobacter infection, almost certainly from undercooked chicken. I call it "my $50,000 lunch.") In my investigations I read some very interesting things about hormones and cancer in a book called "Mastering Leptin", by Byron Richards. Very new, lots and lots of detailed biochemical information. What he said was that there are three forms of estrogen normally present, estradiol, estrone, and estriol. Estradiol is the kind usually given as a supplement, which causes too many cancers. Estriol was considered a "weak" estrogen because it didn't cause as strong a response in estrogen-sensitive cells, but he points out that it is very much safer than estradiol, and that it actually protects against breast cancer by filling the estrogen receptors so the more stimulating estradiol and estrone can't get at them.

       

      page 308: "In a groundbreaking study, estriol was found to work by down regulating NF-kappa-B. Researchers, in this case, were actually looking into why estriol helps multiple sclerosis. This unexpected discovery is of major importance, as NF-kappa-B is the prime cause of virtually all types of cancer, including female cancers, as we explain in chapter 47. The bottom line is that adequate estriol may be a key component of any woman's cancer risk-reduction plan.

       

      Estrone and estradiol produce estrogen sulfates that in excess cause cancer. This effect of estrogen sulfates can be blocked by progesterone, which is one reason why natural progesterone is also helpful to women. Not only is this therapy effective, it is safe, as demonstrated in a large trial with over nine hundred women."

       

      I heartily recommend this book, for many reasons. By the way, his mention of natural progesterone brings up a pet peeve of mine: estrogen occurs in nature and in humans in several forms, but there's only one form of progesterone anywhere. So, human-identical progesterone should always be used. Instead, doctors (like a damned gynecologist who messed me up years ago) prescribe synthetic "progestins", which have some very nasty side effects (like when I woke up every night at 3 a.m. and cried for three hours, till I stopped taking the prescription). And the ONLY reason to make synthetic progestins is to make money because they can be patented. When I found out that they make this ersatz miserable stuff by using the real progesterone as a feedstock, then altering it, I got furious. Those researchers couldn't have helped but know what they were doing to women, as they had to put their new products through trials for the FDA. They couldn't have helped but know that the side effect profile was much worse than the natural product, which couldn't be patented. And they did it anyway.

       

      Good luck to all of you here. What we need, in my opinion, is knowledge. Then we can know what to do. When I read that estriol was being tested because it helps MS, that got me excited. MS is a nerve disease. A good talk (and lending the book) to my primary care physician might get me some estriol, if the neuropathy remains stubborn, or if I have any unexpected returns of the symptoms. They say that many people get over Guillain Barre completely, but that some elderly people "have residual deficits." I don't want to go there! 

       

       

    • Susann
      Jul. 26, 2010

      Glucosamine and l-glutamine are two different substances.

       

      Glucosamine is good for arthritis. L-glutamine is good for healing gut and intestinal damage, and for curing carbohydrate cravings. Both good ... Take l-glutamine on an empty stomach, so it doesn't have to compete with other amino acids.People with Crohn's Disease or ulcerative colitis can get...

      RHMLucky777

      Read More

      Glucosamine and l-glutamine are two different substances.

       

      Glucosamine is good for arthritis. L-glutamine is good for healing gut and intestinal damage, and for curing carbohydrate cravings. Both good ... Take l-glutamine on an empty stomach, so it doesn't have to compete with other amino acids.People with Crohn's Disease or ulcerative colitis can get improvement with l-glutamine, along with omitting starches and disaccharides (sucrose, lactose) from their diets till their guts heal. There's a good book called "Breaking the Vicious Cycle" by Elaine Gottschall. I followed her plan for a year and got rid of the hay fever which had plagued me each spring since I was a kid. Now two years without a sneeze in the spring. So I'm a believer.

       

      L-Glutamine is taken up eagerly by the cells lining the intestine, which helps cure "leaky gut" (and hence hay fever.) The Wikipedia article talks about reducing hospital stays by supplementing with L-Glutamine to speed healing, and about using it after cancer treatments. So it seems that the person who talked about taking a lot for neuropathy is right, it might help a lot of people.

       

      It's supposedly a "non-essential" amino acid, but when people are hurt and stressed out they may not be able to make enough of it, so a supplement might be called for.

  • Anonymous
    MONIQUE C LOVET
    Dec. 05, 2009

    For a few years I have been trying to find out exactly what my problem has been. I read your article and I think I can finally relate to others. I was diagnosed in 2004 and on Sept 20,2004, I had a Taxol treatment. I remember feeling "funny" but just thought it was "normal", so I initially didn't say anything. Then I got a terribly piercing headache and my...

    RHMLucky777

    Read More

    For a few years I have been trying to find out exactly what my problem has been. I read your article and I think I can finally relate to others. I was diagnosed in 2004 and on Sept 20,2004, I had a Taxol treatment. I remember feeling "funny" but just thought it was "normal", so I initially didn't say anything. Then I got a terribly piercing headache and my left eye went blurred. The worst pain I have ever had shot through my head down into my left eye. It left my eye, literally red. Long story short, my oncologist immediately removed the tube from my port. I was having something like a stroke. They rushed me to ER, (downstairs), gave me Benadryl, to no avail. Immediately put me in hospital. They ran all types of test,assuming I had meningitis. I still don't know for sure.Undecided Anyway, I ended up with extreme pain. I couldn't walk, I was in extreme pain. Couldn't get out of the bed on my own. After 3 weeks, it took me 30 minutes to get to my bathroom, sometimes not even making it. The onc told my sister & husband that I may end up in a wheelchair. I fought this, as I was very active in my ministry and a Flight Attendant. I wanted my life back, and I got it back. Now though, ever since then, I have had extreme pain. The bottom of my feet hurt so badly that sometimes my husband has had to beat my feet. The worse is this "surge" that starts in the bottom of my feet and "pulls" through my body, all the way up to my neck. It never reaches my head, interestingly. I have visited a great Neurologist, however, no medicine, has helped me.

    I am now on Trileptal, an anti-seizure drug. But as of yet, it is not helping me. If you have any suggestions, PLEASE post it onto your site or email me. Thank you  kindly in advance. I hope you are still well.

    • Phyllis Johnson
      Health Guide
      Dec. 06, 2009

      Monique, I'm sorry you had such a severe reaction to just one Taxol treatment.  The speed with which it came on and the doctor's attempt to treat it with Benedryl sounds more like some sort of allergic reaction than typical neuropathy.  Of course, the details of what went wrong don't matter to you now as much as what to do.  

       

      The two main...

      RHMLucky777

      Read More

      Monique, I'm sorry you had such a severe reaction to just one Taxol treatment.  The speed with which it came on and the doctor's attempt to treat it with Benedryl sounds more like some sort of allergic reaction than typical neuropathy.  Of course, the details of what went wrong don't matter to you now as much as what to do.  

       

      The two main drug families used to treat neuropathy are anti-seizure drugs and certain anti-depressants.  Both can work to reduce nerve pain, but they can take time.  My only suggestion is to keep working with the neurologist.  If one drug doesn't work, sometimes a similar one will get better results.  If you haven't tried vitamins yet, ask your neurologist about the best dosages of vitamins to help nerves.  I wouldn't feel comfortable suggesting specifics because everyone's medical history is different, and sometimes vitamins are not appropriate.  Some people find exercise is helpful.

      I found the side effects of the medicines I tried worse than the neuropathy, so right now I just put up with it and try to keep my mind on other things, which works just fine during the day when I'm busy.  However, I realize that that approach doesn't necessarily work for people whose neuropathy is more severe than mine.

       

  • Anonymous
    J.R.
    Sep. 08, 2009

    I read through all of the posts about "Taxol toes" with great empathy for each person who spoke out since I, too, have problems lingering from Taxol treatment.  The drug not only gifted me with the peripheral neuropathy, it also damaged my lungs and I'm now on 24/7 oxygen.  

    I was amazed that not one of the posts mentioned the dietary supplement...

    RHMLucky777

    Read More

    I read through all of the posts about "Taxol toes" with great empathy for each person who spoke out since I, too, have problems lingering from Taxol treatment.  The drug not only gifted me with the peripheral neuropathy, it also damaged my lungs and I'm now on 24/7 oxygen.  

    I was amazed that not one of the posts mentioned the dietary supplement L-Glutamine.  My oncologist told me to take 10 grams 3 times a day as soon as neuropathy started showed up which was just after the 2nd treatment. 

    After 2-1/2 years, I still take it because it helps the neuropathy without any of the unpleasant side issues.   It's readily available at the stores that body builders frequent and even comes in chewable (very pleasant flavor) form.  Of course, taking it should be cleared with your oncologist first.  I'm really glad mine knew about it. 

    • Phyllis Johnson
      Health Guide
      Sep. 08, 2009

      Thanks for the information.  I wonder if that is similar to the glucosamine that Jan's doctor recommended.  The neurologist I saw put me on a blend of B and E vitamins.  I echo your reminder not to take any supplement without clearing it with the doctor first.  Some supplements can interfere with other medications.  I'll be seeing my...

      RHMLucky777

      Read More

      Thanks for the information.  I wonder if that is similar to the glucosamine that Jan's doctor recommended.  The neurologist I saw put me on a blend of B and E vitamins.  I echo your reminder not to take any supplement without clearing it with the doctor first.  Some supplements can interfere with other medications.  I'll be seeing my oncologist next month for the my annual check-up.  I'll ask about the supplement you mention.  

  • Anonymous
    Robin H
    Apr. 28, 2009

    I am wondering if anyone has found a topical product to help with the results of Taxol. Specifically my feet feel dry and crackly, hot and irritated. Cold water helps, but I can only get up at night just so many times to soak them in the 6 inches of cold water I keep in the bathtub. Any other ideas on a topical. I just don't want to take any more oral systemic...

    RHMLucky777

    Read More

    I am wondering if anyone has found a topical product to help with the results of Taxol. Specifically my feet feel dry and crackly, hot and irritated. Cold water helps, but I can only get up at night just so many times to soak them in the 6 inches of cold water I keep in the bathtub. Any other ideas on a topical. I just don't want to take any more oral systemic meds, my body has had enough. Thanks, Robin

    • Phyllis Johnson
      Health Guide
      Apr. 28, 2009

      Robin, I never found anything topical that helped for very long, but everyone is different.  I can get some temporary relief just from massaging with a mild lotion.  I think the relief is probably related as much to getting the blood circulating with the massage as from the cream itself.

       I have heard people praise Udder Cream and similar products...

      RHMLucky777

      Read More

      Robin, I never found anything topical that helped for very long, but everyone is different.  I can get some temporary relief just from massaging with a mild lotion.  I think the relief is probably related as much to getting the blood circulating with the massage as from the cream itself.

       I have heard people praise Udder Cream and similar products for problems with hands and feet during chemo.  You might look at some of the topicals designed for sore muscles, but I don't know if you would want to apply those if your skin is already irritated.  My Taxol pain is nerve pain, more than skin pain.  This is worth taking up with your doctor to make sure that anything you use won't create new problems.  Let us know if you find anything that helps.

    • Anonymous
      Robin H
      Apr. 30, 2009

      Thanks for the reply! So far only cold water gives me any relief. I have tried so many topicals and they seem to generally make my feet and skin feel like they are sufficating. It is really wierd as it has almost the opposite effect. They are worse at night and really keep me awake. The dry crispy hot skin is the issue, but I may well be confusing that with...

      RHMLucky777

      Read More

      Thanks for the reply! So far only cold water gives me any relief. I have tried so many topicals and they seem to generally make my feet and skin feel like they are sufficating. It is really wierd as it has almost the opposite effect. They are worse at night and really keep me awake. The dry crispy hot skin is the issue, but I may well be confusing that with just the real neural issues and just keep trying to fix the topical skin. Warm weather is worse. Winter time I can only wear slip on shoes, fairly loose with light or no socks. In the spring and summer I wear sandals all the time, and only slip ons, nothing complicated and certaintly nothing between the toes, etc. My feet want alot of texture, like rubbing on uneven or rough surfaces. I will try some more extensive massaging and see if that actually helps by getting a better blood supply. Thank you, Robin

    • Phyllis Johnson
      Health Guide
      Apr. 30, 2009

      Robin, I think you may have two things going on.  Taxol can irritate the skin and nails.  I thought that most people started to heal from that once chemo was over.  Have you talked to a dermatologist?  You may have some kind of secondary skin infection that got started when your immunity was low while on chemo.  Peripheral neuropathy...

      RHMLucky777

      Read More

      Robin, I think you may have two things going on.  Taxol can irritate the skin and nails.  I thought that most people started to heal from that once chemo was over.  Have you talked to a dermatologist?  You may have some kind of secondary skin infection that got started when your immunity was low while on chemo.  Peripheral neuropathy is damage to the nerves in the hands and/or feet that makes them tingle or burn like they are asleep.  Peripheral neuropathy sometimes gets better after chemo, and sometimes is permanent.  I found that my oncologists were so focused on saving my life that they didn't have the expertise to spend a lot of time working with me on the chemo side effects.  Medicine is so specialized these days that no one can be up on the research and best treatments for everything.  If your current doctors haven't been able to help you find solutions to your pain, then try to find another doctor who has an interest in skin issues or pain management.  Of course, hang on to the oncologist too.  

  • Anonymous
    Dianne
    Mar. 27, 2009

     I am suffering greatly from this. I need help! My hands and feet tingle so bad, its like being in an ant bed. It stings repeatedly. I called my doctor for an appt. Does anyone know anything that will help until I get there ??????

    • Phyllis Johnson
      Health Guide
      Mar. 27, 2009

      Dianne, I don't know anything over the counter that would have a quick effect.  I assume you have tried Tylenol and other pain relievers.  When I tried them, I didn't notice any difference at all.  Some people find relief from vitamin B, but that doesn't work immediately, and you would need to discuss any vitamin supplements with your doctor...

      RHMLucky777

      Read More

      Dianne, I don't know anything over the counter that would have a quick effect.  I assume you have tried Tylenol and other pain relievers.  When I tried them, I didn't notice any difference at all.  Some people find relief from vitamin B, but that doesn't work immediately, and you would need to discuss any vitamin supplements with your doctor anyway to make sure they won't interfere with any other medications you take.  I have found that my neuropathy is worse if my hands and feet get cold, so you might want to make sure that you are wearing warm socks and maybe even gloves.  Some people get a little temporary relief from rubbing the affected areas, so you might try massaging your hands and feet with some lotion.  Once you see the doctor, you may find immediate relief with some of the medications usually prescribed for neuropathy, but if the first treatment you try doesn't work after a reasonable period of time, be persistent in trying other tactics.  People vary in their response to drugs.

    • Anonymous
      Dianne
      Mar. 27, 2009

      Thank you so much for responding. I have contacted my doctor and will see her Monday. I will be trying everything until I find something that works. I already take a vitamin but I may need some extra B vitamin. I will keep in touch, Dianne

  • jomo1960
    Mar. 20, 2009

    I too, like Ginny, have had severe side affects from Taxol.  My Oncologist said after AC that Taxol did not have the bad side affects but did say that Neurapathy was a side affect. My Taxol was every 2 weeks and was high dose. I have Inflammatory Breast Cancer so the doctors were being very aggressive. Well I had my 1st Taxol the day before Thanksgiving...

    RHMLucky777

    Read More

    I too, like Ginny, have had severe side affects from Taxol.  My Oncologist said after AC that Taxol did not have the bad side affects but did say that Neurapathy was a side affect. My Taxol was every 2 weeks and was high dose. I have Inflammatory Breast Cancer so the doctors were being very aggressive. Well I had my 1st Taxol the day before Thanksgiving 2008. By Thanksgiving night I was starting to feel pain (I had a Neulasta shot that day). By Friday I could barely walk because of the pain and by Saturday I was in excrutiating pain. I did not want to move. I called the dr office and was told to double my pain meds (1000 mg Loretab). That only took the edge off. After 4 days it finally subsided. I had weekly blood work done and told the nurse about it. She said that sometimes that happens with the Taxol and Neulasta combination. Then I started feeling the numbness and tingling in my hands and feet by the time I went for the 2nd treatment. After the 2nd treatment I was again in excrutiating pain and was told to double the pain med. They did lower the dosage of the Neulasta by half. By the 3rd treatment, it was Christmas Eve. Because my hands and feet were getting worse, the doctor elected to reduce the Taxol by 20%. I again had to have the Neulasta on Christmas day and again by Christmas night I was getting pain and again for 4 days was in excrutiating pain. My hands and feet got so bad that by jan 7th, which was suppose to be my last treatment, the doctor said she didn't want me to get so bad to be in a wheelchair so she elected not to give me the last dosage. Because of the Inflammatory Breast Cancer she was hesitant but because of my hands and feet in pain, not just tingling and numbness, she opted not to give it to me. My bi-lateral mastectomy was jan 28th. There were still cancer cells in the breast tissue and 4 out of 15 lymph nodes. I am now on a chemo pill called Zeloda as well as radiation. The Zeloda can cause hand and foot syndrome, which is redness and skin peeling in the hands and feel, as well as pain. But since I still have pain in my hands and feet from the Neurapathy, I can' tell if the pain is from Zeloda. I don't have the redness yet. I now am being referred to a Neurologist as well as physical therapy. I am taking Neurontin 3 times a day. I'm told some have to take it 4 times a day but before she increases the dosage of that she wanted me to see the Neurologist.

     

    Like Ginny, I am 48. I noticed that those that get the Taxol weekly, in smaller doses do not see the problems that I have experienced. But with Inflammatory Breast Cancer being so aggressive, the doctor feels that the dose dense is more affective. I know of other women from the chemo room that have had trouble with Taxol. But I also hear it is very effective in killing cancer. I am just glad to be alive.

     

    Johanna

    • Phyllis Johnson
      Health Guide
      Mar. 21, 2009

      Johanna, as an IBC survivor, I understand why your doctors wanted to go with the dose dense scheduling.  They weren't doing that back in 1998, when I was in treatment.  In fact, because of my IBC, I was in the first batch of breast cancer patients getting Taxol for Stage IIIB treatment.  It's a good drug that works differently than the ones in...

      RHMLucky777

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      Johanna, as an IBC survivor, I understand why your doctors wanted to go with the dose dense scheduling.  They weren't doing that back in 1998, when I was in treatment.  In fact, because of my IBC, I was in the first batch of breast cancer patients getting Taxol for Stage IIIB treatment.  It's a good drug that works differently than the ones in the Cytoxan/Adriamycin families, so it's an important part of treatment.  Did your doctors mention trying Abraxane?  I hear that it has the benefits of Taxol and Taxotere without some of the side effects?  IBC patients tend to go with the "big hammer" theory--hit it as hard as possible and hope to live long enough to complain about your sore thumb later!  The quality of life issues are important too, especially now that more of us are actually living past the two or three years that was a typical prognosis in the 1990's.

    • jomo1960
      Mar. 21, 2009

      Hi Phyllis,

       

      Yes, I am just thankful to be alive and my doctor is doing the best she can to avoid a recurrance. I'm thankful that the IBC survival rate has increased as well. When I was first diagnosed, all I heard about IBC was that it was aggressive and the survival rate is lower than just breast cancer.

       

      There was another drug the doctor mentioned...

      RHMLucky777

      Read More

      Hi Phyllis,

       

      Yes, I am just thankful to be alive and my doctor is doing the best she can to avoid a recurrance. I'm thankful that the IBC survival rate has increased as well. When I was first diagnosed, all I heard about IBC was that it was aggressive and the survival rate is lower than just breast cancer.

       

      There was another drug the doctor mentioned that she could give me and I can't remember the name. It could have been the one you mentioned. She did say that it can cause Neurapathy also but not as severe. After my surgery, she consulted with her collegues and they all agreed  that I could benefit from Zeloda, even though it is usually used for stage 4 breast cancer. She was afraid the insurance wouldn't cover it, but they did. Hopefully it will do the trick, along with radiation, and kill any remaining cancer cells.

       

      thanks, Johanna

  • ginny
    Mar. 20, 2009

    I hesitated about writing this because everyone is always so upbeat and hopeful here, which is a survival tool, but my decision ultimately fell to the side of honesty.

     

    Taxol hit me worse than any of the other drugs I had to take.  I was shocked because I had been told that I may feel some bone/joint pain in a week or so.  The day after the...

    RHMLucky777

    Read More

    I hesitated about writing this because everyone is always so upbeat and hopeful here, which is a survival tool, but my decision ultimately fell to the side of honesty.

     

    Taxol hit me worse than any of the other drugs I had to take.  I was shocked because I had been told that I may feel some bone/joint pain in a week or so.  The day after the first injection I could not get out of bed by myself - couldn't even roll myself out of bed - because of the bone/joint pain.  It was excruciating.  I could barely make it down the hallway to the bathroom.  I had to use 2 hands to hold a glass.  My onc handled my nausea very well and it was minimal, but the bone/joint pain was unbearable.  The onc called the maker of Taxol.  They told her that they were aware of at least 2 other cases where the side effects were so severe. 

     

    I don't know what was different about me than all these other folks.  I was 48 at the time, a  Army vet (6 years service) in pretty good condition - definitely not a wuss when it comes to handling pain or difficult times.  I had micromets in my sentinal nodes.  History of Hep B contracted in Panama in '77 with no further flareups or problems.  Married, mother of 3.  Bone scan showed mild arthritis in 4 regions.  After treatment, bone scan was lit up like fireworks.

     

    Taxol brought me to tears more than once.  Just when the pain would begin to subside it was time for another treatment.  I only had 2 more treatments (3 weeks apart) before I decided that my quality of life was more important to me and I stopped the treatments.  I still have daily bouts of bone/joint pain now.  Blood tests for RA are negative.

     

    I'm not advising anyone not to take Taxol - I seem to be the exception rather than the rule.  But if your side effects are as bad as mine were, I urge you to ask your onc to talk to the Taxol folks.  Maybe they know more about this now than they did in 2002.

     

    And if anyone else has suffered these horrific extreme side effects, please let me know at ginnyunder@yahoo.com.  I often wonder how many of us are there like this.

     

    Thank you.

    • Phyllis Johnson
      Health Guide
      Mar. 21, 2009

      Thanks for your honesty.  This site is useless if people don't share the bad as well as the good.  I also had aching bones like the flu for a couple of days after the administration of the Taxol.  I think some aching is extremely common.  We had planned my treatments for Fridays, so that I could feel bad on the weekend and be back at work...

      RHMLucky777

      Read More

      Thanks for your honesty.  This site is useless if people don't share the bad as well as the good.  I also had aching bones like the flu for a couple of days after the administration of the Taxol.  I think some aching is extremely common.  We had planned my treatments for Fridays, so that I could feel bad on the weekend and be back at work on Monday.  Unfortunately, the aching started about 48 hours after the treatment on Sunday, and I still felt bad when I went to work on Monday and Tuesday.  But clearly my level of pain wasn't as severe as yours.  Tylenol helped, but didn't work entirely.

       

      The neuropathy developed after I finished Taxol, and pain killers don't touch it, don't help a bit.

       

      I have heard that a newer cousin of Taxol, Abraxane, is much better about not causing side effects.  I don't know if that would have been an option for you, but it is worth asking about if your doctor ever thinks you need more chemo in that family.

    • Anonymous
      Jamie
      Nov. 09, 2009

      I just finished my Taxol at the end of Sept.  My treatment was to get it one a week 3 weeks in a row and then a week off.  I was told to expect it to take about 48 hrs to hit, so I planned my treatment on Weds and then had my down time on the weekend.  That way, I was able to continue to work full time.

      My downtime initially consisted of feeling...

      RHMLucky777

      Read More

      I just finished my Taxol at the end of Sept.  My treatment was to get it one a week 3 weeks in a row and then a week off.  I was told to expect it to take about 48 hrs to hit, so I planned my treatment on Weds and then had my down time on the weekend.  That way, I was able to continue to work full time.

      My downtime initially consisted of feeling kinda fluish and achy joints.   The aches improved some what but by the time I had my 11th treatment, there really weren't any good days.  There were just less bad days. 

      About 4 weeks post the last chemo, I am feeling much better.  Unfortunately I do have the neuropathy which started after my 10th treatment.   For several weeks after the last chemo, it seemed to be the same, but for the past few days, I have noticed it seems to be getting worse...  Not what I expected.    I thought that once I finished treatment, that things would steadily improve.

      Apparently chemo is the gift that keeps on giving.... finger nails are getting lose too.  Insult to injury!  

      But of course, as many have said, if this buys me time, then it is worth it.  When I was originally dignosed 4.5 yrs ago, I was already stage 4 with bone mets.   I am interested in both quantity and quality, so next time they come around with the chemo bag, going to have to take a long hard look at whether the time lost on chemo is worth the time gained....

    • Phyllis Johnson
      Health Guide
      Nov. 09, 2009

      Four and half years after a Stage IV diagnosis seems like a worthwhile trade for treatment side effects.  I hope this round of Taxol gives you twice that!  I would suggest that you talk to your doctor about the worsening neuropathy.  I think quick intervention on it is more likely to be successful.  If your oncologist doesn't have ideas...

      RHMLucky777

      Read More

      Four and half years after a Stage IV diagnosis seems like a worthwhile trade for treatment side effects.  I hope this round of Taxol gives you twice that!  I would suggest that you talk to your doctor about the worsening neuropathy.  I think quick intervention on it is more likely to be successful.  If your oncologist doesn't have ideas about interventions like vitamins, anti-depressants, or anti-seizure medicines, consider talking to a neurologist whose specialty is nerve issues.  (Anti-depressants for neuropathy aren't to keep you from being depressed over your condition.  Some of them can actually help ease the pain.)  I hope that you soon find some relief for this problem.  The loose nails thing is a different issue, and that should get better, but let your doctor know about it.

    • Anonymous
      donna
      Nov. 17, 2009

      Ginny.

       

      I too, have terrible bone pain since taking taxol for breast cancer.  I cried day after day but fortunately found a neurologist that understood my pain.  I now take serious medication 3 times a day to ease the pain and it has brought some quality of life back to me.  My neuropathy is in elbows to fingers and knees to toes, almost...

      RHMLucky777

      Read More

      Ginny.

       

      I too, have terrible bone pain since taking taxol for breast cancer.  I cried day after day but fortunately found a neurologist that understood my pain.  I now take serious medication 3 times a day to ease the pain and it has brought some quality of life back to me.  My neuropathy is in elbows to fingers and knees to toes, almost any use of the limbs increases the pain.  My cognitive function has been greatly affected also.  I knew at my 2nd chemo session that something was seriously wrong but my oncologist never mentiond that taxol could be the problem until an MRI of the brain showed the damage.  I did not take any more taxol after that but only had 2 treatments remaining,to late!  I have been led to believe that this has only happened to me, which I found very hard to believe.  Do you have to deal with the medical profession acting as if you are exagerating or making it up?  I am unhappy to hear that you are going through this but to know that Taxol does cause these problems and that I was correct in my suspisions.

       

       

    • Phyllis Johnson
      Health Guide
      Nov. 17, 2009

      Your pain sounds more extensive than most people's.  I think it is usually more in the toes and fingers.  Mine does spread into my hands, feet, and ankles sometimes, so I'm sure that people's experience varies.  You say you have bone pain.  That is different from neuropathy, which is nerve pain.  If you also have nerve pain, I don't...

      RHMLucky777

      Read More

      Your pain sounds more extensive than most people's.  I think it is usually more in the toes and fingers.  Mine does spread into my hands, feet, and ankles sometimes, so I'm sure that people's experience varies.  You say you have bone pain.  That is different from neuropathy, which is nerve pain.  If you also have nerve pain, I don't understand why the doctors are acting like they haven't heard of this.  Neuropathy is a well-known side effect Taxol.  Of course, not everyone gets it, and some people only have it for a short while.  There has also been quite a bit of research done on the cognitive effects of chemotherapy.  Keep in mind that the medication that is relieving your pain could also be part of the cognitive problem.  In fact, I stopped taking one pain medication because the mental side effects were so extreme.  I'm glad you found a neurologist who can help you with the pain.

    • Anonymous
      donna
      Nov. 18, 2009

      Thank you for responding.  I am almost at the 5 year mark and am thankful for that.  My neurologist did test and confirmed that the problem with my legs and arms is neuropathy. I experience the numbness, tingling, burning and a throbbing pain that feels like it is radiating from my bones but nothing has been found to be wrong with the bones. ...

      RHMLucky777

      Read More

      Thank you for responding.  I am almost at the 5 year mark and am thankful for that.  My neurologist did test and confirmed that the problem with my legs and arms is neuropathy. I experience the numbness, tingling, burning and a throbbing pain that feels like it is radiating from my bones but nothing has been found to be wrong with the bones.  Anyone else out there experienced problems with limbs from the Taxol treatment?  My neurologist has recently increased the pain medication and if I do OK with that he is going to prescribe Lyrica.  I am hopeful that will help and decrease the need for some pain medication.

    • Phyllis Johnson
      Health Guide
      Nov. 18, 2009

      I know some people who have tried Lyrica and found it useful.  It's a newer drug in the same family as Neurontin, which is an old standby for neuropathy pain.  I hope your doctor can find something to get your pain under control.

  • csurvivor06
    Mar. 20, 2009

    I am 2 years past my chemo and I have Peripheral Neuropathy in both my hands and feet.  My Dr. has had me on Lyrica for about 6 months and it works ok.  I am up to taking 200 mgs in the morning and again at night.  I do notice if I forget because I get alot of pain going up and down my legs and arms, so I try to remember to take them at the right...

    RHMLucky777

    Read More

    I am 2 years past my chemo and I have Peripheral Neuropathy in both my hands and feet.  My Dr. has had me on Lyrica for about 6 months and it works ok.  I am up to taking 200 mgs in the morning and again at night.  I do notice if I forget because I get alot of pain going up and down my legs and arms, so I try to remember to take them at the right time each day.  I suffer from memory loss due to damaged brain cells during chemo so I have problems remembering things.  But the Lyrica works for me so I hope that it might work for you also.  Good luck and God bless you.

    • Phyllis Johnson
      Health Guide
      Mar. 21, 2009

      Thanks for sharing your experience about Lyrica.  I think it will be helpful for some people who didn't get relief from Neurontin or who had too many side effects.  It's funny how differently people react to drugs, so having another option is wonderful.  I'm glad it's working well for you.

    • Sharon D
      Jul. 29, 2011

      Dear csurvivor06, I had "chemo brain" quite fully, then learned that some of that was also brought on by the antidepressant I was reluctantly taking, celexa.  After I stopped the celexa, went through the withdrawal, and my endocrinologist put me on Deplin 15 mg, my foggy fuzzy can't-remember-anything-or-recall-a-word brain condition reversed itself in...

      RHMLucky777

      Read More

      Dear csurvivor06, I had "chemo brain" quite fully, then learned that some of that was also brought on by the antidepressant I was reluctantly taking, celexa.  After I stopped the celexa, went through the withdrawal, and my endocrinologist put me on Deplin 15 mg, my foggy fuzzy can't-remember-anything-or-recall-a-word brain condition reversed itself in a mere 3 months.  Deplin is a form of folic acid or folate, and I was not absorbing efficiently prior to taking Deplin.  So ask your doctor if it is okay to seek alternate therapy through an endocrinologist or naturopath.  Some of the drugs that are being prescribed these days are not leaving our systems as they should.

    • PJ Hamel
      Health Guide
      Jul. 29, 2011

      Thanks for the information, Sharon. I'm glad your chemo-brain has abated. It's such a challenge, as we never know if it's caused by chemo, chemical menopause, the stress of cancer, aging... or all of the above! I hope your head stays clear from here on out. Take care - PJH

    • Phyllis Johnson
      Health Guide
      Jul. 29, 2011

      Thanks for your comments.  One of the drugs I tried for my neuropathy caused me major cognitive problems, so I had to stop it.  I have known other people who had problems from drug interactions.  It is always a good idea to discuss possible medication side effects with your doctor if you are having problems.  I'm glad you are doing better....

      RHMLucky777

      Read More

      Thanks for your comments.  One of the drugs I tried for my neuropathy caused me major cognitive problems, so I had to stop it.  I have known other people who had problems from drug interactions.  It is always a good idea to discuss possible medication side effects with your doctor if you are having problems.  I'm glad you are doing better.

  • Jan
    Jan
    Mar. 19, 2009

    It has been 5 1/2 years since I had Taxol weekly for my breast cancer.  I did take Vitamin B supplements and glucosamine, which the oncology nurses recommended to prevent the peripheral neuropathy.  But neither of them worked to prevent it.  I still feel tingling in my fingers and toes.  However, I don't notice it unless I think about it. ...

    RHMLucky777

    Read More

    It has been 5 1/2 years since I had Taxol weekly for my breast cancer.  I did take Vitamin B supplements and glucosamine, which the oncology nurses recommended to prevent the peripheral neuropathy.  But neither of them worked to prevent it.  I still feel tingling in my fingers and toes.  However, I don't notice it unless I think about it.  I did not take Neurontin or any of the anti-depressants, although I read on breastcancer.org that they might help.  I didn't want to take any more prescription drugs that might cause yet more side effects.  I also have lymphedema that I have learned to live with.  Like Phyllis, I am just happy to be alive.  Jan

    • Ash26
      Mar. 20, 2009

      I have been out of treatment for 2 yrs & took Taxol (after 4 treatments or AC)for 4 wks until I got severe diarhea and nausea causing severe dehydration & changed to Taxotere for 7wks along with wkly doses of herceptin until my lungs got damaged and blood oxygen dropped to 75% then just did herceptin e/3 wks. Anyway I got servere neuropathy after 2nd...

      RHMLucky777

      Read More

      I have been out of treatment for 2 yrs & took Taxol (after 4 treatments or AC)for 4 wks until I got severe diarhea and nausea causing severe dehydration & changed to Taxotere for 7wks along with wkly doses of herceptin until my lungs got damaged and blood oxygen dropped to 75% then just did herceptin e/3 wks. Anyway I got servere neuropathy after 2nd Taxol treatment in both feet and hands I tried Cymbalta but no supplements excent multi vitamin and nothing helped I still have it and still no better along with breathing difficulties and other chemo side effects.  The neuropathy is the worst as I trip easily (no feeling)and am currently recovering from knee arthoscopy & torn tendon/badly sprained wrist.  Which unfortunately I feel all to well.  Sometimes I wonder if I took too agreesive treatments as margins were clear and only micro cells in one sentinel node.  Oh well it's best not to look back and just be happy we are still here to continue the fight and celebrate with family and friends.  God Bless.Kiss

    • Phyllis Johnson
      Health Guide
      Mar. 20, 2009

      Ash26, I'm sure it is harder to accept a side effect like neuropathy if it might have been a stronger treatment than you needed.  I didn't have that issue because my cancer was so aggressive.  Taxol was added to my treatment plan after we learned that I had 16 positive lymph nodes, so I tend to think that without every drop of chemo I had and every...

      RHMLucky777

      Read More

      Ash26, I'm sure it is harder to accept a side effect like neuropathy if it might have been a stronger treatment than you needed.  I didn't have that issue because my cancer was so aggressive.  Taxol was added to my treatment plan after we learned that I had 16 positive lymph nodes, so I tend to think that without every drop of chemo I had and every blast from that radiation machine, I would be dead.  But who can know for sure?  You're right that it's better not to second guess.  You made the best treatment decisions you could at the time with the information you had, and now you need to keep looking forward.  If you are interested in exploring other possible treatments, I'd suggest consulting a neurologist.  That's the kind of doctor who will be most up to date on the best treatments for you.

    • Jan
      Jan
      Mar. 20, 2009

      It's really hard not to second-guess yourself.  I did that for quite some time, but now am on to hobbies and activities that take the focus off my treatment decisions.  Every day I am thankful to be alive, and look at the neuropathy and lymphedema as scars from a battle that made me all the stronger and more compassionate.

    • Phyllis Johnson
      Health Guide
      Mar. 20, 2009

      Jan, it may be that the vitamins and glucosamine helped reduce the severity of your neuropathy.  That's one of the questions that no one can know for sure.  It is amazing what we can learn to "tune out."  The main time I notice my tingling is at night when I'm falling asleep and don't have other things happening to distract me.   

    • Jan
      Jan
      Mar. 20, 2009

      Phyllis, you may be right about the vitamins and glucosamine reducing the severity.  I like to think that is what happened, and maybe it did.  It is truly amazing what our brains can tune out, what becomes background noise in our new normal state.

  • Anonymous
    bernadette wolff
    Mar. 19, 2009

    I could not access the rest of this post.  2nd page was empty

    • Phyllis Johnson
      Health Guide
      Mar. 20, 2009

      Bernadette, I don't know if what people see on each page varies depending on the size of their computer screen.  On my computer, the "page 2" link is working and contains a short paragraph with my conclusion that even with the neuropathy, I'm grateful to Taxol because I believe it saved my life.

    • Anonymous
      Sarah
      Mar. 23, 2009

      Bernadette, thanks for reporting the formatting error. I think we've fixed the glitch. Let us know if it's not better.

       

      Sarah

  • Anonymous
    amystic1
    Mar. 10, 2009

    I had only been given Taxol 4 weeks and I had Taxol toes and fingers.   I was getting Taxol every week for 12 weeks.   I had terrible memor lapses as well.   The Oncologist told me to take Vit. B.   After a few more weeks it was getting worse...and finally after 10 weeks of Taxol...she gave me Taxotere...and I took HERceptin...

    RHMLucky777

    Read More

    I had only been given Taxol 4 weeks and I had Taxol toes and fingers.   I was getting Taxol every week for 12 weeks.   I had terrible memor lapses as well.   The Oncologist told me to take Vit. B.   After a few more weeks it was getting worse...and finally after 10 weeks of Taxol...she gave me Taxotere...and I took HERceptin too till my MUGA showed injection fraction of 43%.     

     

    It has been 2 years since Taxol and I still have numb feet and hands and memory loss.  

     

    Hang in there...and Thank you so much for bringing this subject up.   It seems to be such a "hush-hush" subject - since they believe Taxol does more good than harm.

     

    I did just get approved for Disability.  Thanks to my Neuro/Psyche Dr. for doing the complete work-up and proving that I was not making it all up.

     

    Jolie

     

    • Phyllis Johnson
      Health Guide
      Mar. 11, 2009

      Jolie, although my neuropathy has never improved significantly, my chemo brain has gotten better.  For a while I couldn't dial a phone number without referring to the phone book three times, even for numbers I used frequently.  I think playing solitaire and similar games helped me learn to focus and sequence again.  Or maybe I would have gotten...

      RHMLucky777

      Read More

      Jolie, although my neuropathy has never improved significantly, my chemo brain has gotten better.  For a while I couldn't dial a phone number without referring to the phone book three times, even for numbers I used frequently.  I think playing solitaire and similar games helped me learn to focus and sequence again.  Or maybe I would have gotten better anyway; it's hard to say for sure.  I'm to the point now where I can't tell if my memory lapses are from old age or chemo!

       

      So I hope you gradually see some improvement.  It took about five years for me.

    • Mary Ann
      Jun. 28, 2010

      Jolie and Phyllis, thanks for your comments.  Yes, I think it's hush hush with oncologists about side effects of Taxol.  Oncologists are bound to try and save your life, though some days I feel that the pain from peripheral neuropathy makes for a life that isn't so worth living.  I have been taking 40-60 mg amitryptaline for the pain.  It's...

      RHMLucky777

      Read More

      Jolie and Phyllis, thanks for your comments.  Yes, I think it's hush hush with oncologists about side effects of Taxol.  Oncologists are bound to try and save your life, though some days I feel that the pain from peripheral neuropathy makes for a life that isn't so worth living.  I have been taking 40-60 mg amitryptaline for the pain.  It's moderately effective on some days and not so much on others.  I am looking everywhere for other means of controlling pain.  It's been 7 months since finishing 12 weeks of Taxol. I am also looking for hope that it will get better.  I need hope more than pain control.

       

    • Phyllis Johnson
      Health Guide
      Jun. 30, 2010

      Some people do get better with time.  I found that a neurologist was really interested helping to find remedies for neuropathy.  Oncologists are specialists who are dedicated to saving our lives by killing cancer cells, and it's only natural that they might not be as up to date on nerve issues as neurologists.  I hope you soon find some relief....

      RHMLucky777

      Read More

      Some people do get better with time.  I found that a neurologist was really interested helping to find remedies for neuropathy.  Oncologists are specialists who are dedicated to saving our lives by killing cancer cells, and it's only natural that they might not be as up to date on nerve issues as neurologists.  I hope you soon find some relief.

    • Mary Ann
      Jun. 28, 2010

      Jolie and Phyllis, thanks for your comments.  Yes, I think it's hush hush with oncologists about side effects of Taxol.  Oncologists are bound to try and save your life, though some days I feel that the pain from peripheral neuropathy makes for a life that isn't so worth living.  I have been taking 40-60 mg amitryptaline for the pain.  It's...

      RHMLucky777

      Read More

      Jolie and Phyllis, thanks for your comments.  Yes, I think it's hush hush with oncologists about side effects of Taxol.  Oncologists are bound to try and save your life, though some days I feel that the pain from peripheral neuropathy makes for a life that isn't so worth living.  I have been taking 40-60 mg amitryptaline for the pain.  It's moderately effective on some days and not so much on others.  I am looking everywhere for other means of controlling pain.  It's been 7 months since finishing 12 weeks of Taxol. I am also looking for hope that it will get better.  I need hope more than pain control.

       

  • sue dyer
    Mar. 09, 2009

    Hi Phyllis and thank you for this most timely (for me) post on the side effects of the taxanes. Did you do your Taxol in weekly doses or every three weeks? I'm about to reach the midway point this Thursday of my weekly Taxol and have had no ill-effects so far, although the doctor did say that if it happens it will be towards the end of this treatment. It does...

    RHMLucky777

    Read More

    Hi Phyllis and thank you for this most timely (for me) post on the side effects of the taxanes. Did you do your Taxol in weekly doses or every three weeks? I'm about to reach the midway point this Thursday of my weekly Taxol and have had no ill-effects so far, although the doctor did say that if it happens it will be towards the end of this treatment. It does seem from what I've read that the side effects of weekly Taxol are less severe. I suppose it is a case of expect the best and cope with the worst if it happens.

     

    If it does happen, then I'll be able to refer to your post and ask some informed questions about treatment, so thanks again for the information. Cancer can be such a nuisance with some of the legacies it leaves, but, as you say, better to be alive with something to complain about.

     

    Best wishes

     

    Sue

    • Phyllis Johnson
      Health Guide
      Mar. 09, 2009

      I had Taxol every three weeks, which was the standard method of treatment eleven years ago when I was in treatment.  I am one of the few people I know whose neuropathy started well after treatment was over.  As your doctor points out, it usually shows up earlier, and in many cases goes away on its own in a couple of months.  I think it would...

      RHMLucky777

      Read More

      I had Taxol every three weeks, which was the standard method of treatment eleven years ago when I was in treatment.  I am one of the few people I know whose neuropathy started well after treatment was over.  As your doctor points out, it usually shows up earlier, and in many cases goes away on its own in a couple of months.  I think it would be worth asking the doctor if B vitamins would be OK with the treatment you are on.  They might help prevent the problem.

    • sue dyer
      Mar. 10, 2009

      I've already asked the doctor about Vitamin B and he doesn't think it will do any good. I'm taking them anyway since many women report that it helps. It's abit of a Catch-22 really, isn't it? If they work, it means I won't get any neuropathy (or only in a minor way) and we won't know if it was the vitamins or not.... Since they won't do any harm, it's worth...

      RHMLucky777

      Read More

      I've already asked the doctor about Vitamin B and he doesn't think it will do any good. I'm taking them anyway since many women report that it helps. It's abit of a Catch-22 really, isn't it? If they work, it means I won't get any neuropathy (or only in a minor way) and we won't know if it was the vitamins or not.... Since they won't do any harm, it's worth a try.

       

      Best wishes

       

      Sue