Can anyone give me some resources for neuropathy? I am three years out of tx, and still have residual neuropathy in both hands and feet. Is the nerve damage permanent at this point, or can I expect to slowly gain more of it back? Is Taxol the offending drug for neuropathy? I think I had about 72 gallons of it.... Any info is appreciated. Anyone else have lingering neuropathy? Tom J

Hi Tom,

Yes, I have some of the Neuropathy. I am 11 months out from treatment. Sometimes I get that tingling feeling down my back side too. It is the strangest feeling!!

I do not know of anything that will help with it. I would be interested to learn if there is.

Take care,
Diane

Tom, I had Taxol in a lesser amount (grin) but the feeling I had of sand in my shoes gradually left over the course of about two years. Hang in there!

Tom, I also have the tingling in feet and arms when I look down. I also had Taxol, but I just saw my RO and he said mine was caused by the radiation. He said being radiated so close to the spinal cord, and I was radiated the whole way across my neck. He said it should go away in a year, but I have been reading otherwise.

Taxol is noted for causing peripheral neuropathy -- to some degree in a majority of those taking it -- why my husband Barry's medical oncologist did not give it to him as she was concerned it might exacerbate the benign essential tremor (a hereditary condition) which affects his hands. So he only had carboplatin (cis- can also cause some neuropathy).

Barry just had an appointment with a neurologist at Hopkins which was really to evaluate if the tremor condition had worsened with time or treatment. The Dr. didn't find any neuropathy in his hands or feet and felt the tremor was about the same as before treatment, that is, no worse.

If the problem continues you may wish to get a neurologist to look at it and give you some advice.

Gail

Tom,
I still have some neuropathy in my feet, and I'm also nearly three years out.
Joanna, that is probably the best description of the feeling/lack of feeling in my toes that I have heard! It doesn't seem to be going away though. I had Taxol and Carboplatin as pre-induction chemo.

The symptom that a couple of others have described, of a tingling sensation when looking down, is different from chemo-induced neuropathy. It is known as L'Hermittes Sign, or L'Hermittes syndrome, and is caused by Radiation to the cervical spine. I had it pretty bad, starting a few months after my last Rad treatment, but it gradually cleared up over about a six month period.

Good Health,

Chuck

Good posts gang....! I've been doing a bit of reading about the neuropathy issues. Some of it is pretty interesting. I couldn't figure out why I had such trouble walking around my house in the dark. The neuropathy can have strong effect on the kinesthetic abilities of the muscles.

Kinesthetics is the 'conversation' between muscles and central nervous system - letting the brain know where all of your parts are in relation to all the other parts of you (i.e., close your eyes and touch your nose, etc...) Without that kinesthetic information coming from the muscles of the feet, the brain can't tell if the body is vertical - and tipping over is pretty easy.

But, with even a tiny amount of light in the room, the eyes can provide that information to the brain and walking is no problem. When I was at the pinnacle of chemo, when standing, I could close my eyes and lose my balance almost instantly. Strange....

Thanks for the info about L'Hermittes syndrome, and all the other posts. Keep em coming. Be strong, TJ

After I posted about the tingling in my hands and feet, I thought I might of been talking about something different than what you had asked. Now I have a question. Since I had Taxol/Carbo, is this something I could develop (the neuropathy) ? Or do you get this during treatment or shortly afterwards? I am 4 mos. out of tx. Hope everyone is having a good day.

According to one study on Taxol, 60% of patients taking it as a single agent showed some degree of peripheral neuropathy, although only 5% of these reactions were considered "severe." However it definitely can cause the problem.

Carboplatin, on the other hand, rarely causes neuropathy.

Gail

Gail, Thanks so much for the reply. They never even told me that was a side effect of Taxol. I guess I should of researched it more on my own. Thanks again! Linda