Help with Neuropathy

cubbybear

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.

marcy

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

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

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

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

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

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

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

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

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

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

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

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

lindachris said:

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

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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