Worsening Neuropathy

[mardrobe]

My wife developed Neuropathy during treatment with Oxaliplatin in 2003. Though she has been off treatment for years, the neuropathy got worse after treatment ended and has continued to increase in the years since. We haven't kept up with new information on treatments. Have there been any new studies concerning Neuropathy or its possible treatments. She has problems with numbness in her hands and feet and can not sense the temperature of hot food when eating.

[Nik Colon]

I sorry, I don't have any answers, but have you tried Gabapentin, that's the only one I know but I know others here have more info, best wishes

[Ron50]

Hi Mardrobe,
I did not have oxiplatin just 5fu and some other stuff called levamisole. I was advised early in my survival to get plenty of exercise. I followed orders and for nearly three years I walked close to 50 miles a week every week. I began to find it hard to keep in touch with my feet and it gradually spread up past my knees and into my left hand as well. I suffer badly and even worse when I was put on methotrexate for psoriatic arthritis and nephrotic syndrome of the kidneys. I tried methotrexate twice for a total of nearly three years. I have been diagnosed by a neurologist with severe motor sensory peripheral neuropathy of both feet and legs and left hand. He would not treat me as he did not know what the cause was . He does not believe that the chemo I was on causes neuropathy. Because of that he offered me no treatment. My rheumatologist and nephrologist were a little more humane and tried me on Neurontin , lyrica ,endep ,norspan and fentanyl patches. None of them helped and some were downright scary. I suffered badly from burning pain when I put my feet up at night (particularly in hot weather) and even the smallest pebbles felt like walking on boulders. I no longer take methotrexate but now take cyclosporine for my auto-immune problems . The only thing that has helped with the pain from neuropathy has been targin tablets . I am on a 40/20 dose twice a day. $0 mg oxycodone combined with 20 mg naloxone. It has helped the pain but it is a mixed blessing a I suffered severe opiate induced constipation with this drug and had to take two dulcolax and two coloxyl wit each dose. I have asked doctors and pharacists constantly if there is anything better and safer to reduce my pain . They all say no. I am very lucky I have no adverse side effects from cyclosporine which is a very powerful immuno suppressant and I am extremely tolerant of targin and suffer no effects other than constipation and if I miss a dose. The anti-epileptic drugs have some side effects and you have to wean off them as sudden cessation can rarely cause siesures. My best wishes I wish I could be of more help. I have survived colon cancer for nearly seventeen years and have suffered neuropathy for nearly fifteen of them. Ron.

[JDinNC]

I developed neuropathy 5 days after completing chemo that was a year and a half ago. I still have it and there are good days and bad. I'm on 400mg of gabapentin 4 times a day though I usually take it only 3 times a day. I can't say it's a cure but it does take the edge off my feet. During the day, I don't notice my feet but in bed I have the "wet sand" feeling , which I personally describe as "wet paint that has dried" feeling.
My doctor said that if it's not gone in 8 weeks, I'll most likely have it for life. I still have it so I guess I'm a lifer.. I'm still looking for the miracle cure for this but don't see it happening anytime soon.

[mardrobe]

Linda has used a description similar to the wet sand one. Her biggest concern is that it will become hard to walk if it continues to worsen and she sometimes has trouble holding on to things. It has now been 12 years since her treatment. Back then no one realized it could be permanent and she was told it would go away after treatment. One of the risks of trying new drugs, but it may be responsible for getting rid of the cancer so we can't complain to much.

[teacher49]

I have permanent neuropathy from FOLFOX6. It started at treatment 10 and got worse once I stopped all treatment. I'm now 3 years from end of chemo and still have neuropathy in my feet. None in my hands except I'm a little clumsier.

I take Lyrica 100 mg 3 times per day and it takes the edge off of the sensations in my feet of "wet sand". Much improved. The only downside is the cost.....I have insurance and I only pay $50. copay but the cost listed is $1400. for 3 mos. supply.

[Mister Wu]

Señora had her last Oxi infusion and Xeloda in June. Her neuropathy has increased since her reversal four weeks ago. She is visiting an acupuncture center this afternoon seeking relief.

She did teach this past week. She is happy otherwise.

[rmblack]

I am dealing with this also. And it seems to have gotten worse after chemo was completed.
Mine is also in my hips and buttocks. Anybody else?