Hello,
I would love some thoughts on this.
I have been diligently studying Neurotalk and every Mrs. D post possible and was just about to start Acetyl-L-Carnitine (ALCAR) to accompany my R-Lipoic Acid and Coenzyme Q10 to tackle my Chemo Neuroapthy (CIPN). (I finished Taxol and Carboplatinum last November).
I then came across this recent fairly well respected large study (409 patients across many treatment centers) saying that ALCAR did not improve and in fact slightly worsened CIPN neuropathy.
It is the first large study of ALCAR for CIPN. There are a handful of very small studies stating that ALCAR helps CIPN and is also safe / does not encourage cancer tumor growth.
Even the authors say that they were surprised by the results. Brings to mind the research joke, you know you are truly finding the truth when you don't like the results.
From other editorials, it appears that others in the medical community also find these findings discouraging. They seem to respect how this study was conducted and express their dismay that once again, when they think there might be something for CIPN, the evidence says otherwise.
Although this study was for preventing/curtailing CIPN by taking it during chemo, I now reluctantly feel like we just don't know enough about it and I should just stay away from it even though for me it is for repairing nerves post chemo.
Also, I am spooked about supplements in general. Perhaps we just don't know enough about how RLA and CoQ10 interact with Chemo Neuropathy and I should play it safe and not take those as well?
Also, as much as I adore all the Neurotalk contributors and have been so grateful for every post, please forgive me if I am starting to have doubt ... perhaps there just isn't many Neurotalk contributors with chemo neuropathy? Perhaps most are diabetics and other types of neuropathy, and the supplements that have been used for years with other types just don't cross over to chemo neuropathy?
So my questions are:
1) Do you agree that I should play it safe and stay away from ALCAR?
2) Do you have some reason why you think other supplements that haven't been well studied with Chemo Nueropathy, such as RLA and CoQ10, are safe and I should continue with them?
3) Do you think that Neurotalk is mostly diabetics and I have to be extra careful in assuming that many of the discussions here cross over to Chemo Neuropathy?
4) For non-CIPNer's, do you think these results cross over to other types of neuropathy?
Big thanks for any thoughts,
Natalie
P.S. Please forgive me if this study has already been discussed here .... I did a search and couldn't find it mentioned.
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