My name is Lars-Henrik Nilsson, 49 years old and living in Sweden. I had a mean tumour in year 2000, after operation and chemotherapy (2 types and thalidomide). After a while I started to feel num under one of my feet’s. Also I felt the sticky feeling. This became worse and after a couple of years it spread to my other foot. I got a referral to another doctor, were I got the diagnosis Polyneuropathy, and my ordinary doctor said that sadly there is no treatment for Polyneuropathy cased by chemotherapy. I went on-line to search for ways to treat the disease. I found something called CIDP, which I thought had the same scenario as my disease. But when I visited another doctor about this, she confirmed that there is no treatment for the disease, when it comes from using chemotherapy, we cannot stop it, only delay the progression.
My question is this really true? Is there anybody on this forum that has the same diagnosis as I have and have got a treatment who stopped the decease? What is polyneuropathy caused by chemotherapy called, (like CIDP above)?
I would very much appreciate anyones thoughts about this.

Welcome larshenriknilsson.

Polyneuropathy is damage to your peripheral nerves. The causes are many. Damage caused by some of the chemotherapy drugs. CIPN is the the term. (Not CIDP).

http://www.cancer.org/treatment/trea...y-what-is-cipn

http://www.mayoclinic.org/diseases-c...s/con-20019948

Hello Lars-Henrick,

Welcome to the NeuroTalk Support Groups.

I'll post the link to our Neuropathy forum below. You'll find information and support there.

You can also find posts here using specific keywords e.g. chemotherapy, in the forum search feature.
Searches can be forum wide or you can just check Peripheral Neuropathy Forum if you want.

Peripheral Neuropathy Forum

Forum Search Feature

Lars-Henrik Nilsson,

Hello and welcome, happy to see you have come to be with us, it a great place to be. As you can see we have a great number and caring fellow members here, where you have find a supportive and relaxing place. Have fun looking into the different forums. Our shoulders are here for support in many ways.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

I'm so sorry you are having to deal with this.

My name is Debi and I live in Georgia. I'm almost 53 and due to a rare uterine cancer had a chemo combo of taxol/carbo from Dec 2012 to March 2013. A month after chemo ended I could barely walk. My initial visit to my PCP shocked me to the bone. PN.....from diabetes/chemo.

At that time I had no experience with PN nor chemo. Much later I realized why my onco would ask questions about numbness prior to each chemo treatment and why he lowered my taxol on my 3rd treatment due to me advising I was having numbness in my feet and hands. Nothing serious I thought at the time.

Fast forward to now, I have been dx'd with severe small fiber neuropathy. I had no A and C fibers left in my feet at the time of biopsy. At the time of the biopsy I had only heard the words "small fiber neuropathy" a month prior.

I was unable to take Cymbalta or lyrica due to side effects. I am on 1800 mgs/day of gabapentin, a 15mcg/hr BuTrans pain patch and use up to 3 Percocet a day (10-325) and I still am unable to routinely cook, clean, drive or grocery shop. I finally saw a pain mgmt. dr last Sept and am now under their care. My nerves will not heal but yours may.

I do know damaged nerves can heal over time. I know that because of these wonderful people on NT. I am sure others will come along and give you helpful hints and ask for more details from you.

Please keep us posted.....we care

Debi from Georgia