[slippytoad]

Hi, I'm new here. I'm writing on behalf of my mother who is experiencing severe PN brought on by chemo drugs Paclitaxel and Carboplatin. She has small-cell ovarian cancer, diagnosed a few months ago.

The PN happened during the third cycle of chemo and has left her bed-bound and demotivated. She's on gabapentin and oromorph, as well as slow-acting morphine sulphate.

Wondering if anyone has had any experience with such severe PN following chemo? Any successful treatments?

Many thanks,

Nick.

[antonina]

Hi Nick,

I too am a member of the chemo induced PN club. I had 5 Taxol & 6 Carboplatin rounds about 10 years ago. After about the 5th treatment, I was only able to get around via wheelchair. I have progressed (?) over the years to using a walker and do so at the present time.

I learned, much to my dismay, that chemo PN is sometimes permanent. Back in '99 during my chemo there was an "experimental" drug called "amifostine" which, when given prior to chemo, was shown to protect against PN. Today it seems to have won acceptance. If your mom needs more treatments she should bring up amifostine as an adjunct rx. In addition, there are lots of studies that link the use of glutamine to help with PN.

To date I haven't found anything which has helped my drastically altered quality of life. But I haven't given up. I suggest that you read the stickies which offer lots of good info.

Good luck to you in helping your mother.

[slippytoad]

Thanks for the reply antonina. And you survived too, that's great! What kind of cancer did you have if you don't mind me asking?

[antonina]

Originally Posted by slippytoad

Thanks for the reply antonina. And you survived too, that's great! What kind of cancer did you have if you don't mind me asking?

Don't mind at all. I had Stage III(c) ovarian.

Another thought: I used to read an ovarian cancer monthly newsletter which was very helpful in getting me through the early stages of recovery. Here's the link: http://www.ovarian-news.org/
Each June issue covered only PN (medical news, survivors' stories & hints, etc.) I think it's worth a look.

[Martin_12]

Originally Posted by slippytoad

Hi, I'm new here. I'm writing on behalf of my mother who is experiencing severe PN brought on by chemo drugs Paclitaxel and Carboplatin. She has small-cell ovarian cancer, diagnosed a few months ago.

The PN happened during the third cycle of chemo and has left her bed-bound and demotivated. She's on gabapentin and oromorph, as well as slow-acting morphine sulphate.

Wondering if anyone has had any experience with such severe PN following chemo? Any successful treatments?

Many thanks,

Nick.

Hi Nick

The National Cancer Institute is currently running a trial in which Alpha Lipoic Acid is being given to prevent chemotherapy-related PN. I think platinum-containing drugs are thought to cause the PN. http://clinicaltrials.gov/ct2/show/NCT00112996

There must be fairly good preliminary evidence that ALA helps for the NIC to run a big trial.

I have PN which I am pretty sure was caused by B12 deficiency. I have taken ALA (R-L type) 2 x 300 mg per day since January 2006 without any adverse effects, apart from (I think) a bit of dyspepsia on a couple of occasions. I think it helped the healing of damaged nerves in my feet and hands.

Martin

[mrsD]

That is interesting, Martin.

You know the 3 main nutrients used for mitochondria support are:

acetyl-l-carnitine (studies exist for this for drug toxicity)
CoQ-10 (this is used to treat mito disorders)
lipoic acid (this is included in Dr. Ames product Juvenon)

Biotin is also suggested, as a support for the others.

Alpha lipoic is a racemic mixture and one half of it is not bioactive. There is one study on rats showing possible negative impact on the thyroid with alpha lipoic. There are no reliable studies yet on humans.

R-lipoic is a purified version, now affordable and easy to obtain.
Lower doses are therefore possible if you choose to use it.

For chemo induced damage, it is best to use the nutrients before and during the chemo. But since there are no other alternatives for after treatment, using the nutrients is all we have at this time. It is certainly worth the try. None of them have any serious tradeoffs, except for price. Using iherb.com can off set some of that too. They have many selections that are quality and affordable by good manufacturers.

[slippytoad]

Thanks for the all the info and help guys, I really appreciate it. It turns out that my Mum has Guiilame Barre Syndrome (GBS) although the neurologist doesn't know what brought that on. Possibly her reduced immune system as a result of chemo. Anyway, she's on day 4 of her IVIG course and we're hoping for a positive response.

[mrsD]

A neighbor of mine developed GBS after chemo from breast cancer. She had had a mastectomy too. It occurred about 4 months after the surgery and chemo.

This was a while ago, before IVIG was perfected. She was given
plasmapharesis which reversed it pretty quickly.

One can get GBS as a result of an intestinal infection from
the food borne Campylobacter (common in poorly cooked chicken).