Help with Neuropathy

cubbybear
cubbybear Member Posts: 5
edited March 2014 in Ovarian Cancer #1
Hi. My name is Patti and was diagnosed with stage 111 Ovarian Cancer in May of 2007. I am now in remission but suffering from neuropathy that is so bad i am unable to drive. Any suggestions to help the neuropathy. I am currently taking neurotin. I cant stand the numbness in my feet and hands and I dont think alot of people realize how hard that is to cope with. Hope to hear from someone.

Comments

  • marcy
    marcy Member Posts: 58
    Hi Cubbybear
    My mom has neuropathy. She does not have Ovarian cancer..but has neuropathy. The doctor has ordered her Physical Therapy for her balance issues.
    I'm sorry I can't help you any more than that..but..I wish you well and hope you can get this under control. I know it can be very hard on you when you have this. God bless.
  • ladyjogger31
    ladyjogger31 Member Posts: 289
    Welcome
    Hi Patti, welcome to the board.Here you will find alot of support. The women hear are great!!
    I took B6 100mg for my neuropathy. That all. I'm sure someone hear can help you more. I really didn't have it too bad.
    Hugs and Prayers, Terry
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    Neuropathy
    Hi Patti, neuropathy is one of the things we do learn to live with. I took L-glutamine for a long time, it helped some. I think the thing that helped the most was self talk and of course talking to God.

    I would tell myself if someone with artificial legs can run I sure can walk and drive, and then ask God to help through it. It's funny how you just get use to the pressure on the pedals. Sometimes I stop kind of sudden and its like an opps didn't realize my foot was on the break already. :-) And you should hear my sewing machine take off when I dont' realize my foot is resting on the pedal. But one of the harder things for me is actually buttons ~ fingers can't feel them and then tiny little things that have to go in tiny holes.

    I never used the neurotin as I am too tired already, I know it is suppose to help with pain, but told my Dr I'd adjust. I think the nerve pain eventually gets better, except if you bump your toes or foot. That is a double ouch.

    I do take L-Lysine daily and extra when on chemo as it helps for mouth sores but believe it helps the neuropathy also.

    I am sure you will get a lot of good hints of what works for others, as well as lots of prayer support. Hugs N Prayers Bonnie
  • mopar
    mopar Member Posts: 1,972 Member
    HI, PATTY
    Sorry to hear of your neuropathy, but I can surely relate as can most of us here.

    I've also taken L-glutamine, B-6 and neurontin. The neurontin did not help me at all, but the two supplements did. So you'll have to try and find out what works for you. I will tell you that today I have no neuropathy symptoms to speak of. So, it will get better once your body has a chance to heal from the stress of chemo. In the meantime, I hope the info helps.

    Luv & Hugs!
    Monika
  • kris43
    kris43 Member Posts: 275
    Neuropathy
    Hi Patty -

    When I started with the neuropathy stuff in my hands it always felt like my hands were "buzzing" - took the B6 like the ladies suggested and that seemed to help. After going back to work after being gone for 6 months I developed such pain in my hands, arms and shoulders that the doctor put me on Neurontin and Amitryptiline. Started with the smallest doses and it helped immensely. I weaned myself off this about 6 months later and now 9 months later and okay. I've heard of too many people that have neuropathy, don't address it and then go to a doctor who tells them they have carpal tunnel syndrome and they end up having surgery again.

    I'd try anything before they put me through that! Hope our information helps somewhat. Best of luck!

    Hugs -
    Kris
  • deanna14
    deanna14 Member Posts: 732
    kris43 said:

    Neuropathy
    Hi Patty -

    When I started with the neuropathy stuff in my hands it always felt like my hands were "buzzing" - took the B6 like the ladies suggested and that seemed to help. After going back to work after being gone for 6 months I developed such pain in my hands, arms and shoulders that the doctor put me on Neurontin and Amitryptiline. Started with the smallest doses and it helped immensely. I weaned myself off this about 6 months later and now 9 months later and okay. I've heard of too many people that have neuropathy, don't address it and then go to a doctor who tells them they have carpal tunnel syndrome and they end up having surgery again.

    I'd try anything before they put me through that! Hope our information helps somewhat. Best of luck!

    Hugs -
    Kris

    Neuropathy
    Patty,
    My doctor told me to take over the counter B6 and drink tonic water. The tonic water has (?sp) quinine in it that helps some people with the neuropathy. I have only been taking it a couple of days... so the jury is still out. Also, my discomfort does not sound a severe as yours.
  • green50
    green50 Member Posts: 312
    deanna14 said:

    Neuropathy
    Patty,
    My doctor told me to take over the counter B6 and drink tonic water. The tonic water has (?sp) quinine in it that helps some people with the neuropathy. I have only been taking it a couple of days... so the jury is still out. Also, my discomfort does not sound a severe as yours.

    Here too
    I have it but not as bad as you it sounds like. My feet feel like I am on sand or something and my left leg is partially numb. I take vitamins which have B6 in them and maybe its helping me. I hope you find something.
    Prayers and Hugs
    Sandy
  • lindachris
    lindachris Member Posts: 173
    Neuropathy
    It's interesting this issue isn't getting more attention in the medical community. I know my wife is very frustrated by how numb her feet are. It has in some ways hindered her walking program. It was particularly difficult for her balance when we were walking in the dark this winter. I had to really watch out for her with lumps and ice and other such.

    Recently she had a little burst where feeling seemed to be coming back in her feet. But she describes the general feeling like her feet are asleep. I am guessing the medical community is at a loss as to what to do about all this. But what strikes me is the possibility some day of applying stem cells to regenerate nerve growth. Someone told me the nerves from from the core outward. That's why you don't know right away how bad neuropathy will be after a year?

    It's tricky business. I would recommend getting to a physical therapist if that is available in your medical plan. They can really help you with a lot of things like this, if nothing else, to teach you balance again even with the problem.
  • aandj
    aandj Member Posts: 33
    It was suggested to us
    Alpha-lipoic acid
    Serves as a coenzyme in the Krebs cycle and in the production of cellular energy---possibly the "perfect and ideal" antioxidant. In Germany it is an approved treatment for peripheral neuropathy.

    Acetyl-L-carnitine
    Modulates cellular functions, including the transfer of fatty acids for energy production---restores nerve growth factor function studies have shown neuropathies respond to ALC. Daily administration of ALC during Taxol treatment completely prevents occurrence of neuropathy and myelosuppression it is associated with increased nerve conduction velocity; in a trial it prevented 73% of nerve conduction defects and promoted/accelerated nerve-fiber regeneration.

    Vitamin B12
    This the neurologically active coenzyme form of vitamin B12, which supports the healthy structure and functioning of the brain and nervous system. Studies have shown that methylcoblamin provides protection from neurotoxicity and is neurotrophic (promotes growth of nerve cells), which may help regenerate peripheral nerve.
  • Lauracec
    Lauracec Member Posts: 101
    aandj said:

    It was suggested to us
    Alpha-lipoic acid
    Serves as a coenzyme in the Krebs cycle and in the production of cellular energy---possibly the "perfect and ideal" antioxidant. In Germany it is an approved treatment for peripheral neuropathy.

    Acetyl-L-carnitine
    Modulates cellular functions, including the transfer of fatty acids for energy production---restores nerve growth factor function studies have shown neuropathies respond to ALC. Daily administration of ALC during Taxol treatment completely prevents occurrence of neuropathy and myelosuppression it is associated with increased nerve conduction velocity; in a trial it prevented 73% of nerve conduction defects and promoted/accelerated nerve-fiber regeneration.

    Vitamin B12
    This the neurologically active coenzyme form of vitamin B12, which supports the healthy structure and functioning of the brain and nervous system. Studies have shown that methylcoblamin provides protection from neurotoxicity and is neurotrophic (promotes growth of nerve cells), which may help regenerate peripheral nerve.

    thankyou Jeramy
    thats a beautiful picture of you two. can see a lot of Love in your faces. How are you holding up? I know it must be pretty rough sometimes. thankyou so much for the ideas. I know Iam going to try some and pass these on to my mother-in-law she is on chemo for uterine cancer and is having a real hard time with the neuropathy. God bless you and thankyou. big giant Hugs!! Laura
  • Cindy54
    Cindy54 Member Posts: 452
    Lauracec said:

    thankyou Jeramy
    thats a beautiful picture of you two. can see a lot of Love in your faces. How are you holding up? I know it must be pretty rough sometimes. thankyou so much for the ideas. I know Iam going to try some and pass these on to my mother-in-law she is on chemo for uterine cancer and is having a real hard time with the neuropathy. God bless you and thankyou. big giant Hugs!! Laura

    Nueropathy
    Count me in the numb feet crew. Although mine is not from chemo. When I had the spinal cord tumor three years ago, one of the lasting things is the numbness of my feet, toes, coldness. I also have a weak left leg. That buzzing finally went away just a few months ago. Neurontin did not help me at all, just incredible fatigue. The B-6 helps some, but nothing will ever take this numbness away. Some days I feel like I am walking on borrowed legs. They walk and I follow..and I also feel at times that they are asleep. If you do stomp on my foot I will feel it, I just cannot "feel" with my feet. If that makes sense. Nerves sometimes take a while to heal. I really don't know of anything to help them along except the B vitamins. Cindy
  • hward2007
    hward2007 Member Posts: 62
    Neurophty i got it bad
    I've been told a hot bath works 4 the pain, i take lyrcia but it makes me sleepy. Mine is Taxol related, as 4 the feet i ware 3 pairs of socks, a tight pair, warm fuzzy and another, it does get beter. Take B-complex vitams, pray with each step, i do it's like electricity when my feet hit the floor, i still have weakness in my extreaties and sometimes i just stay on my bed warmer! I have no sense of touch just pressure, i put my hand on hot stove and almost lost a finger cutn grapes 4 my 2yr old. So be carefull.
  • cubbybear
    cubbybear Member Posts: 5

    Neuropathy
    It's interesting this issue isn't getting more attention in the medical community. I know my wife is very frustrated by how numb her feet are. It has in some ways hindered her walking program. It was particularly difficult for her balance when we were walking in the dark this winter. I had to really watch out for her with lumps and ice and other such.

    Recently she had a little burst where feeling seemed to be coming back in her feet. But she describes the general feeling like her feet are asleep. I am guessing the medical community is at a loss as to what to do about all this. But what strikes me is the possibility some day of applying stem cells to regenerate nerve growth. Someone told me the nerves from from the core outward. That's why you don't know right away how bad neuropathy will be after a year?

    It's tricky business. I would recommend getting to a physical therapist if that is available in your medical plan. They can really help you with a lot of things like this, if nothing else, to teach you balance again even with the problem.

    neuropathy
    Thanks for the advise. I also lose my balance all the time...I had physical therapy but it didnt help.. I hope your wife is doing good..



    Patti
  • Susan523
    Susan523 Member Posts: 231 Member
    Neuropathy
    Hi, Patti,

    I had terrible neuropathy after a session of Taxol chemo,
    and the following year IP Cisplatin chemo. I couldn't stand
    the neuropathy; it even kept me from sleeping at times!

    I had 3 sessions of acupuncture, and I must say, it has
    helped tremendously. Those sessions were in December.

    I have now started chemo for the 3rd time; this time Gemzar,
    and so far (after 3 treatments) no neuropathy. If it does
    come back, I'll try acupuncture again.

    Good luck to you~
    ~Susan xoxo
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