neuropathy questions

Faith88

Hello all,
I was reading another thread discussing neuropathy and wanted to post a couple questions. Quick history: My hubby is having such a terrible time with neuropathy and gone through the nerve tests which showed "profound neuropathy" according to his neurologist. His hands are affected the most but also his feet and anal area. The pain is sometimes so bad he can't sleep. He takes neurontin but it only keeps things bearable.
This has been going on since about November, he finished Folfox in December and it got worse since then.

OK so now my 3 questions: What is the realistic likelihood that he will get better? Is 5-6 months still too soon? Did you get better in stages or was it suddenly gone?

How does one work when under this kind of condition? He felt better on chemo! He can't work, can't even write with a pen!

Is there anything that anyone has found to help with the healing process that is natural? (His neurologist wants to put him on some trial treatment program that insurance won't cover and we can't afford.)

Thanks to all and God Bless you.
Faith88

pamness

I had some neuropthy but not nearly as bad as your husband's. The only thing I can offer is that mine, which was pretty minor but annoying, took about 4 months to go away. I will offer up my prayers, I wish I could tell you more. I hope things get better.

Pam

impactzone

Mine was worse at the end of chemo due to the cumulative effects of oxyliplatin. I never thought it would go away. Chemo started 10/06 ended 6 /07. I still have some in my feet but hands have gotten back to normal. I even went skiiing in Jan and Feb of 08 which I thought would NEVER happen. I did take B6 vitamins but you should talk to onc. It went away so slowly that like it crept up on me.
impactzone

shmurciakova

I am so sorry for what your husband is experiencing! Oxy can be really nasty stuff apparently. Anyway, I know I have seen something about a drug that works for neuropathy, I think I saw it on the C3 website....I highly suggest that you find a N.D. (naturopathic doctor) who deals with cancer patients to help you with this. You can also look on the other colon cancer sites and see what people have to say, such as the colonclub.org and the new CCA website. Best of luck,
Susan H.

LOUSWIFT

I was on Xeloda and thus bad hand and foot syndrome. The neuropathy was most severe in my right hand and left foot. I'm about 2 years out from treatment and three of my fingers are still effected. But not so painful now as numb. My left foot used to give me the pleasure of someone without warning shoving a knife through the bottom of my foot and twisting it for 2-4 minutes. It will wake you out of a sound sleep and well get your attention. It happened about 20-30 times a day. Now many months down the road it rarely happens maybe once every few months for about 10 seconds. So you can say over time there has been significant improvement.

Faith88

thank you all for your replies. I feel encouraged reading that no one has posted saying that they are still experiencing the effects YEARS later. I hope and pray this is not permanent and am happy that it wasn't for all of you.

pamness

shmurciakova said:

I am so sorry for what your husband is experiencing! Oxy can be really nasty stuff apparently. Anyway, I know I have seen something about a drug that works for neuropathy, I think I saw it on the C3 website....I highly suggest that you find a N.D. (naturopathic doctor) who deals with cancer patients to help you with this. You can also look on the other colon cancer sites and see what people have to say, such as the colonclub.org and the new CCA website. Best of luck,
Susan H.

what is CCA

hopefulone

Hopefully with the warmer weather coming, your husbands side effects will improve. The cold or dampness can increase the symptoms. My husband was fortunate , his lasted 3-5 days after treatment and then got better. Last treatment was in august and he had liver resection in october. The only symptom of neuropathy he had left was his feet would turn really really red after taking a bath or showeer and ache for the night. The cold also bothers him more now then it did pre chemo, but since it's warming up here he hardly notices it now. Good luck. Keeping you both in my prayers. Check with the doc about the B vitamin. I have heard it sometimes helps but usually when given prior to or concurring with the chemo.

Mickeyw

Hi Faith...
I finished my FOLFOX regimen in July of 2007. All during the 12 treatments the sensitivity to cold would last about 4 days then go away. I noticed the numbness in my hands and bottoms of my feet began to hang around after about 5 months, so the oncon stopped the oxaliplatin for the last two treatments. It is about 10 to 11 months out now and I still have the numbness in ends of my fingers and bottoms of feet. I have taken the B6 all along and it hasn't helped much, if any at all. I am trying Neuratin for a month to see if that helps. I have learned to live with it. Obviously your husnband is experiencing much more than I am. I still play the electric bass in our church choir. I like to go barefooted at home since the arches of my feet are not numb, and I like to feel the carpet. Our prayers are with you.