Thank You Natalie!
 

Hi Natalie,

Thank you for this information. :D
The timing is amazing, as I am needing to consider low-dose chemo. treatment
for an autoimmune condition. In my case, it's proposed an attempt to control inflammation enough to eventually decrease daily prednisone intake. I already have significant PN. (This approach is endorsed by all of my doctors at this time.)

I, too, am enraged/disgusted/saddened to think the medical profession, as a whole, may not be interested in addressing/preventing/assisting with CIPN.:(

Thanks again, Natalie! :D

Warmly,
DejaVu

Sorry, Mrs. D .... didn't mean to get you worked up.

Although, it feels nice to have people out there who care enough to get angry.

I could tell you even more stuff like this but it will just send us all into a rant.

I have learned more from your comments and those on this board on pn than all the health care providers combined.

:)

The list of supplements suggested, are they useful for improving neuropathy? The site only talked about using these to prevent neuropathies.

sometimes for some people, maybe
 

This particular page above list supplements for people who already have pn as a side effect of chemo.

Most of them are even better tested for other types of pn.

Hopefully some of these help some people.

There is no big, obvious, well tested silver bullet.

look at bottom
 

Also, maybe you didn't scroll all the way to the bottom of the page.

The top two listed had been tried in the past during chemo infusion in hopes of prevention.

Then way down at the bottom they list the rest of supplements to later try. It would be better if they listed supplements at the top, all in one place.

BTW, they mention cold packs. I know many people who tried putting cold packs on feet, hands, scalp during infusions and still got strong pn and lost hair ... It's okay to try cold packs but I would tell people not to have great expectations of cold packs.

Another article about chemo damage:
 

I am editing my carnitine entry in the Subforum Supplements thread. And I found this:

http://www.sciencedirect.com/science...13231714000214

Lots of interesting graphics in this article... about toxicity to
neurons.

ALCAR makes CIPN worse ??
 

Big thanks for this. You have been pointing to "oxidative stress" long before I came across studies like this spelling it out.

I am very curious what your edits will say about your thoughts now on carnitine for cipn.

If you remember, in my thread below from last year, I was just about to start carnitine when the medical community was surprised by a large study saying it made cipn worse. Prior I had read a lot about how RLA and ALCAR worked well synergistically, but with this I got spooked and didn't start it.

During this time, I think you were on vacation. Others grumbled about the sponsors of this study and bias.

I've also been reading the new trend in studies is telling people NOT to try things ... apparently, this saves money for insurance companies and decreases competition for drug companies .... you would know more about this.

I still don't know what to make of it, and I still have the ALCAR and RLA unopened bottles calling to me ...

but more and more are referring to this study and ALCAR seems now to be taken up by the medical community as a legit "do not do" for cipn.

Any thoughts appreciated,

Natalie



My forum thread:

Pls Help Discouraged - Large Study says Acetyl-L-Carnitine WORSENS Neuropathy
http://neurotalk.psychcentral.com/thread208875.html


Here is the studies and related editorials:

"Conclusion There was no evidence that ALC affected CIPN at 12 weeks; however, ALC significantly increased CIPN by 24 weeks. This is the first study to our knowledge showing that a nutritional supplement increased CIPN. Patients should be discouraged from using supplements without proven efficacy. "

A Double-Blind, Randomized Phase II Study to Evaluate the Safety and Efficacy of Acetyl-L-Carnitine in the Prevention of Sagopilone-Induced Peripheral Neuropathy
The Oncologist 2013, 18:1190-1191.
full text of study available online:
http://theoncologist.alphamedpress.o...f-50887211d6e5



"Acetyl-L-Carnitine Increases The Risk and Severity Of Taxane Induced Neuropathy:

Contrary to promising results from earlier studies (preclinical and smaller human studies), a large randomized trial found that patients who received acetyl-L-carnitine (3,000 mg per day) during their taxane-based chemotherapy for breast cancer actually developed neuropathy more frequently and had more severe neuropathy compared with those who took a placebo.

The bottom line: Don’t take acetyl-L-carnitine to reduce the risk of taxane-induced neuropathy…it doesn’t work.

This is yet another study that makes the same point as I made above, that we need to be cautious in our adoption of new therapies before they have been proven safe."

http://www.integrativeoncology-essen...mo-neuropathy/




"Acetyl-L-carnitine and prevention of chemotherapy-induced peripheral neuropathy: can anything work?

The current study describes a well-executed, prospective, placebo-controlled, double-blind, randomized trial. ....
Preclinical data with ALC examined the prevention of axonal damage and mitochondrial dysfunction and appeared promising [2], However, together with other studies (Table 1), the current report indicates ALC will not be an effective therapy forchemotherapy-induced PN, and other strategies will need to be pursued. "

The Oncologist (Impact Factor: 4.1). 01/2013; 18(11):1151-2.
free full text available online:
http://theoncologist.alphamedpress.o...5-190ea69fdf06
or also:
https://onchd.alpha.intstrux.com/art...y-can-anything



Other summary of study:
"Chemotherapy: Supplements—for better or worse?"
Nature Reviews Clinical Oncology 10, 426 (2013); published online 18 June 2013; doi:10.1038/nrclinonc.2013.106
Full text available:
http://www.readcube.com/articles/10....inonc.2013.106

go see carnitine expert ??
 

Interesting side note to the carnitine for cipn debate ...

Since I am an American living in Switzerland, turns out that one of the more known research experts on carnitine for nerves, happens to be a reasonable drive away from me in Northern Italy.

He conducted the study listed below, along with others, that most other papers cite when discussing carnitine for cipn.

A year ago, I emailed him, he personally responded and was willing to give me an appointment (a couple of months away) to discuss this topic, to my surprise. (Top opinion leaders will often respond to emails from general public in Europe, which is wonderful). I then got caught up in other health issues.

His research is fairly pro-carnitine and I'm curious what he would now say that the tide is tipping in the opposite direction of his studies.

I believe he would still meet with me, I am not entirely sure all that I would ask him.

Currently, this is not at the top of my list of priorities but if any of you could ask him / discuss anything ... what would you be curious about?

Natalie



... also a search of Bianchi G in pubmed shows all his work with carnitine with different nerve problems.



"Symptomatic and neurophysiological responses of paclitaxel- or cisplatin-induced neuropathy to oral acetyl-L-carnitine.
Bianchi G, Vitali G, Caraceni A, Ravaglia S, Capri G, Cundari S, Zanna C, Gianni L.
Eur J Cancer. 2005 Aug;41(12):1746-50."

The research on nutrients in medical areas, tends to vacillate.

for example the recent alarming news item about carnitine supplements causing heart attacks, was interpreted in a way that was not entirely accurate.

Here is an explanation and rebuttal from Linus Pauling institute:

http://lpi.oregonstate.edu/files/pdf...s13.pdf#page=2

My impression is that the carnitine used in the chemo studies may have been the wrong dose. And selection of the study patients may have somehow skewed the results...this is common with nutrient studies.

Some studies used up to 3 grams a day...and perhaps that is just too much?

So I am on the fence with this for chemo patients. I know carnitine really helps with recovery of muscle after working out, as I used it when I was more active and it worked to prevent stiffness and soreness for me.

Carnitine has been used in the medical community for a long time. For AIDs patients, heart failure, and hyperthyroidism.

I just don't think there is a definitive answer yet.

hippocrates number one rule - do no harm
 

Thanks for your thoughts.

Yes, I feel the same.

I was surprised that despite the years of studies, recent discussions now seem to completely drop ALCAR for cipn and cite last year's study as the new fact without questioning it much.

I find it hard to experiment on my body with things that I will be taking daily for a long time, especially when the threat has been made that the treatment could make things even worse.

I think of Hippocrates "Do no harm" (i.e whatever you do, don't start screwing things up even more).

At the same time, I did have a good feeling about ALCAR w RLA.

Natalie