Supplements for neuropathy

KsGal · 01-23-2012, 01:04 AM

Hi everyone...Im currently doing taxotere/carboplatin/herceptin, and even after just one treatment Im having some numbness/tingling in my fingertips and toes. Being that everyone has told me the side effects are cumulative, I was wondering if you all had any suggestions for supplements or other things to help with this? Thanks so much

dsv · 01-23-2012, 11:31 AM

I am also doing Taxatere, Carboplatin and Herceptin. My oncologist told me to take B6, glutamine (powder in water). I did have to start taking Neurontin (300 mg x 3 times a day). I still have problems with neuropathy but I think it would be worse without the above. Hope this helps.

NanaJoni · 01-23-2012, 12:12 PM

I have only mild neuropathy but take 100 mg of B6 every day and it helps a lot. Be sure not to overdo or take high doses of B vitamins without an okay from a doctor.

KDR · 01-23-2012, 01:15 PM

Vitamin B6, 50 mg. daily pill. I notice a difference if I forget to take it.
Karen

BonnieR · 01-23-2012, 01:17 PM

My oncologist recommended Glutamine powder. It is an amino acid supplement. Ask your doc what they suggest.
Keep the faith.

CoolBreeze · 01-23-2012, 01:50 PM

I took l-glutamine powder dissolved in cold water, 3x a day the day before, the day of, and the day after chemo. I believe that it reversed the neuropathy I had. The dosage is on the package. They have done some soft studies at UCLA that seem to show this does help with neuropathy. As always, ask your doctor before taking any supplements.

Jackie07 · 01-23-2012, 04:59 PM

Below is a thread with research information on the subject of neuropathy :

http://her2support.org/vbulletin/sho...ght=neuropathy

karen z · 01-23-2012, 05:59 PM

All of your posts are very interesting- thanks.
kz

KsGal · 01-27-2012, 02:18 AM

Thank you all so much, I went and got the supplements today, although I accidentally got the glutamine in capsule form instead of powder form. I wonder if that matters? My next TCH is Wednesday, so Im really hoping this will keep those icky tingling/numb sensations at bay. *fingers crossed* Thank you, again. No clue what I would do if I didn't have you all to give me advice.

rhondalea · 01-27-2012, 04:28 AM

In addition to the other supplements I take (which include Vitamin B6), I added acetyl-l-carnitine 500 mg, 4x/day. I received 12 doses of taxol, but I have experienced no symptoms of neuropathy.

There are a number of studies using ALCAR, many of which are still ongoing. Everything I've read indicates ALCAR works for the majority, so if what you're using doesn't help you, you have another option.

jml · 01-27-2012, 07:29 AM

I took/take glutamine powder mixed with cold water (+Bragg's Apple Cider Vinegar is just my added touch) while I was on Halaven + Herceptin.
Just 1 tbsp on the day before/day of/day after my infusion, then up to 2 tbsp on the other days.
It doesn't go down very easily bc the powder never seems to completely dissolve in the water, but it seems to be helping.
While I was on Halaven, the neuropathy got to be a real nuisance, but now that I've been off for ~4wks, it seems to be resolving.
I'm able to type without looking at the key board, can distinguish what I'm feeling in my pockets/purse without having to look, and both my feet hands don't feel so tingly and cold all the time.
Good luck with your treatment &
Keep the Faith~

Jessica

Debbie L. · 01-27-2012, 11:13 PM

The glutamine dose is by Gms if I remember correctly and it's a LOT. 10 GMs?

I took capsules and there were so many to swallow (500mg each) that it was arduous. Sorry I can't find the reference, there were several studies in prostate cancer. But that was nearly 11 years ago. I didn't have much neuropathy on my 4 rounds of taxol, but who knows if l-glutamine made a difference.

For an n of 2, my chemo/clinical trial buddy took the same dose and had terrible neuropathy during her 4 doses of Taxol. Bad enough that she (and her onc) considered stopping by the 2nd dose. It persisted after treatment ended, with significant numbness and bouts of burning and pain.

There are scientists looking at the differences in usage of glutamine between some cancer cells and normal cells, at the cellular level. I don't how or even IF this would tie into to supplementing with it. But it does remind us that nothing is without the potential to both help and harm. I'm not sure, knowing what I know today, that I'd take those mega doses again. Not because we know it's harmful, but because we don't really know it's not. Nor is there much evidence on the helping side -- neither that it helps, nor that it doesn't. Doing a search nowadays brings up more links to its possible protective effects against mucositis, including possible protection of the gut during abdominal radiation.

If anyone finds some good studies, please share.

Debbie L.

rhondalea · 01-28-2012, 06:27 AM

Here's a review that you might find reassuring:

http://www.springerlink.com/content/8835405325687m84/

They define the risk: "Due to the early in vitro knowledge that cancer cells preferably consume glutamine, oncologists often refuse to supply glutamine to the tumor-bearing host to avoid any potential risk."

But they also conclude:

"In various clinical situations, appropriate exogenous glutamine supply is safe and can beneficially contribute to diminish risks of high-dose chemotherapy and radiation."

I can't say I find it thrilling to be described as a "tumor-bearing host."

There are tons of glutamine articles in PubMed, but searches are easier in Google Scholar. Better search engine.

Debbie L. · 01-29-2012, 08:00 AM

Thanks for the link, Rhondalea. It still sounds (without access to full text, at least) rather vague. They don't say how large the studies were, nor how far out the "tumor bearing hosts" were followed, for example.

I agree about the language! I thought they were talking about rats but when I read closely, they were talking about the human participants also.

Some of the scientists could benefit from more active advocate participation in study design.

Debbie Laxague

Debbie L. · 01-29-2012, 08:24 AM

I stumbled across this, rather timely for our discussion:
Cannabinoid 'Completely' Prevents Chemotherapy-Induced Neuropathy, Study Says

I didn't know what this was and still am a little vague about how it's administered. Obviously it's a component of marijuana but I've never heard of something "non-psychotropic", related to marijuana, for one example. Anyway, here's what wikipedia says:

http://en.wikipedia.org/wiki/Cannabidiol

And here's one link to information about "sativex", available in Canada and apparently in the process of obtaining (or at least seeking) FDA approval:

http://www.huffingtonpost.com/2012/0...n_1222055.html

KsGal · 02-01-2012, 02:12 PM

Thank you Rhondalea. I did find that reassuring. I was a little confused reading it at first when it referred to me as the host and the "tumor bearing host". LOL! I am going to take the glutamine and B6. I also found the study on cannabis/cannabidiol interesting, especially the sentence that mentioned the effect it could have on agressive cancer cells. Medical marijuana is up for a vote in the state where I live, but being in the middle of the bible belt I can't really see it happening. I would imagine that maybe the sativa would also be covered within a law like that. I'll keep you all updated. If I can avoid the neuropathy and the headaches, I will have most of my symptoms in check and tolerable.