Anyone's neuropathy gotten worse?

[kcherub]

Good morning!

It might just be that my brain has taken a little vacation from worrying about other things, but it seems like the neuropathy in my legs is getting worse. When I am up and around, it doesn't bother me, but when I sit or lie down, it drives me nuts!

I have the "sock" neuropathy--like those sweat socks from the late 70's. It goes from my big toe up to just below my knee. I did start my Tamoxifen (finally) about two weeks ago--I know the clot risk, but what about neuropathy? Could it be a circulation issue?

I go to my ONC. on Monday for my third or second to last Herceptin. I like to go in with a little input from others. It's like the nail issue--I never had problems while on Taxotere, but have had them while on Herceptin!

Thanks,

[juanita]

It's not gotten worse, but it has gotten better. I do still have it though. I've never thought about it being a circulation thing, just thought it would be something I'd always have to live with.

[Becky]

Even at its worst, during treatment, it was better to move around than sit still. It is pretty much gone but I get the "electric" feeling of it when I am the most tired and just lying around. Especially in the toes.

[Alice]

I don't know if I would consider mine worse, but it has changed since stopping chemo. Mine started when I was on A/C which my onc said was unusual. After chemo was done and surgery was done I had rads, that is when it started to change. From skin peeling, tingling sensations, and nails turning black and falling off, to severe burning senations in my arms and legs, along with the tingling. At that time I started taking neurontin and it does seem to help. I just saw a neurologist for the first time 2 weeks ago. He confirmed that I have the classic stocking and glove effect, starting at my elbows down to finger tips and starting mid thigh to tips of toes. He said at this point, being off chemo since 10/05, that it would not get better, but there are some new medications on the horizon that seem to help much more. The thing that bothers me most is the fact that it interferes with me getting the right type of exercise to stave off recurrance! And I am not a couch potatoe or a whimp when it comes to physical exertion. Anyway, acording to the neurologist it is not a matter of circulation. I don't know if this helped or not. good luck.
Alice

[Sheila]

Krista
I too am hoping in time it will get better...in my short break from Taxol, my legs are not near as achey, but I am still struggling with the feet and toes...have been since Xeloda...I didn't go to a wedding last night because all I could comfortably wear was flip flops, and it was 32 degrees!
I do avoid extreme cold and hot to try to calm it. I also walk every day, get comfy tennis shoes and Walk walk walk!!!!!

[tdonnelly]

Hi,
I noticed the neuropathy to be at its worst during Taxol treatments. At one period I was having tingling/numbness attacks all over. That has since subsided. The chemo has definitely left nerve damage.
This was my first winter dealing with neuropathy; it was difficult. My finger tips and toes are very sensitive to the cold now. I felt an instant frostbite effect on fingers and toes. When I came in from the cold the pain lasted over an hour until my body returned to normal. I need to wear gloves when I go outside still and in the snow I need to wear double socks to protect my feet. I finished chemo. Sept. 07, still hoping this is temporary. When inside I still feel numbness on the pads of my feet and toes; I still walk funny (like a duck) and keeping my balance is still tricky. My Internist suggested neurotin but I declined; I didn't like the side effects that were posted for that drug.
I also wondered if this was all a circulation problem as I have bruises on my legs from a year ago that never healed ? The chemo treatments have caused inflammation in both knees and has enhanced the pain from the degenerative arthritis (pain was dorminant prior to treatment) Take Care.
Tamara
Invasive Ductal Carcinoma 10/2006 HER2+

[R.B.]

I know nothing about neuropathy. I have no idea if the pathways are the same in chemo and diabetes.

This may or may not be of interest.

RB

Diabetes. 2003 Oct;52(10):2578-85.Click here to read Links
Neuroprotective effect of docosahexaenoic acid-enriched phospholipids in experimental diabetic neuropathy.
Coste TC, Gerbi A, Vague P, Pieroni G, Raccah D.

UPRES EA 2193, Faculte de Medecine Timone, Marseille, France. Thierry.Coste@medecine.univ-mrs.fr

A deficiency in essential fatty acid metabolism has been widely reported in both human and animal diabetes. Fish oil supplementations (n-3 fatty acids), containing docosahexaenoic acid (DHA) and eicosapentaenoic acid (EPA), were less effective on diabetic neuropathy than (n-6) fatty acids. This partial effect of (n-3) fatty acids might be attributed to the presence of EPA, a competitor of arachidonic acid, which enhanced the diabetes-induced decrease of this fatty acid in serum and tissues. For determining whether a supplementation with DHA alone could prevent neuropathy in streptozotocin-induced diabetes, diabetic rats were given daily, by gavage, liposomes containing DHA phospholipids, at a dose of 60 mg/kg. Eight weeks of diabetes induced significant decreases in nerve conduction velocity (NCV), nerve blood flow (NBF), and sciatic nerve and erythrocyte (red blood cells [RBCs]) Na,K-ATPase activities. DHA phospholipids totally prevented the decrease in NCV and NBF observed during diabetes when compared with the nonsupplemented diabetic group. DHA phospholipids also prevented the Na,K-ATPase activity decrease in RBC but not in sciatic nerve. Moreover, DHA level in sciatic nerve membranes was correlated with NCV. These results demonstrate a protective effect of daily doses of DHA on experimental diabetic neuropathy. Thus, treatment with DHA phospholipids could be suitable for evaluation in clinical trials.

[Sherryg683]

The neuropathy in my legs and feet had gotten pretty bad, usually in the morning and while I was laying down trying to sleep. I had to keep rubbing my feet together to get any relief. Then all of a sudden...gone. I haven't had problems in like 8 months. Haven't changed any meds either. It will probably hit me again, now that I've noticed that it has not bothered me..lol. ..sherryg683

[TSund]

I think I remember reading that Vitamin B might help with neuropathy issues? Or am I mistaken?

[Hazel Joyce]

Yes! B6 is helpful! I took 50 mg 3 times a day. (Onc nurse's recommendation.) I am now taking 100 mg 2 times a day. (Convenience and cost effectiveness.)