Neuropathy in hands and feet

about the same
I was dx last November stage 4 and i'm not getting any relief from the neuropathy..
Doc say it takes time.
Jeff just happy to be here!!

My wife developed pretty bad
My wife developed pretty bad neuropathy after 12 cycles of Oxaliplatin. After a month of frustrating pain and tingling in her legs and fingers, as well as decreased manual dexterity with her fingers and hands, she started taking acetyl-l-carnitine which can be purchased on-line or in stores that carry nutritional supplements. (The particular brand she has been using is Jarrow Formulas.) Immediately after starting it, she noticed improvement; and the process of improvement has been slow and gradual over the last 10 months. There is no question in our mind that this has helped her.

We used acetyl-l-carnitine because it has been shown to be helpful with diabetic neurotpathy, and a few years ago it was also shown to be helpful in the treatment of cisplatin induced neuropathy. (Cisplatin is chemically similar to oxaliplatin. And, by the way, my wife is not diabetic.)

Symptomatic and neurophysiological responses of paclitaxel- or cisplatin-induced neuropathy to oral acetyl-l-carnitine:

http://www.journals.elsevierhealth.com/periodicals/ejc/article/PIIS0959804905004296/abstract

You can go to a web page at WebMD to get further information on acetyl-l-carnitine:

http://www.webmd.com/vitamins-supplements/ingredientmono-834-ACETYL-L-CARNITINE.aspx?activeIngredientId=834&activeIngredientName=ACETYL-L-CARNITINE&source=3

AceSFO said:

My partner (johnsfo) had his
My partner (johnsfo) had his neuropathy continue to get worse after the chemo ended as well. A little detail that nobody had mentioned was possible. It did eventually fade away (I can't remember how long - he could help you with that) but the hands came back first and then feet but the feet very very slow in coming back. I'll alert him to this post and feel free to PM him too if you want.
Adrian

my neuropathy is gone
I just love being able to type that into the subject heading!

I had severe neuropathy in my hands and feet beginning early in chemo with oxalyplatin. That included extreme sensitivity to cold as well as "pins-and-needles" and nearly complete lack of sensation at its worst. I finished chemo in May 2007, and the neuropathy continued to worsen after the end of chemo. I remember waking up every morning right after chemo and moving my feet under the sheets to find out whether I could feel anything. Nothing.

The feeling in my hands returned first -- I don't remember exactly when. In late summer of 08 I remember hiking in sandals and feeling the sun on the tops of my feet. By late spring of 09 the neuropathy was gone completely. Nothing I tried helped, although it's worth noting what has worked for some. For me, it just took time.

BTW, if you look at the picture of Adrian and me on his "expressions" page, we hiked up and down Mt. Katahdin with me unable to feel my feet. That made the hike all that much more thrilling!

John

Still Have Neuropathy
I am getting my last dose of Folfox next week and can't wait to be done and see what the CT
scan will show. I have had the neuropathy for about 3 months, progressively worse each chemo. One morning I woke up and my feet were on fire. My disabilty case manager recommended Neurontin, it's a prescription and it seems to have quieted down some of the burning. Symptoms are not gone but I have managed to continue dancing when it is an off chemo week. Hard to feel my toes when I dance, but I've learned to adjust. Have positve thoughts and try not to let it get you down.

pat