[luvsbooks]

Hello I am a new poster, my name is PJ.

I have had Breast Cancer twice, the last time being 07. Since then I have graduated into very bad pain from the waist down. I am taking Neurontin 1800mgs which my internest just changed and changed to darvon, not working. I can hardly get around, my legs feel weak.

Does anyone here know what I am talking about and what are you doing for your PN? I'm beginning to be concerned about bone mets.

Thank you so much,

[mrsD]

Hello and welcome to our board.

Some doctors use acetyl carnitine for Chemo induced PN.

CNS Drugs. 2007;21 Suppl 1:39-43; discussion 45-6.Links
Acetyl-L-carnitine for the treatment of chemotherapy-induced peripheral neuropathy: a short review.
De Grandis D.

Divisione di Neurologia, Ospedale Civile di Rovigo, Rovigo, Italy. ddegrandis@iol.it

Peripheral neurotoxicity is a major complication associated with the use of chemotherapeutic agents such as platinum compounds, taxanes and vinca alkaloids. The neurotoxicity of chemotherapy depends not only on the anticancer agent(s) used, the cumulative dose and the delivery method, but also on the capacity of the nerve to cope with the nerve-damaging process. The sensory and motor symptoms and signs of neurotoxicity are disabling, and have a significant impact on the quality of life of cancer patients. Moreover, the risk of cumulative toxicity may limit the use of highly effective chemotherapeutic agents. Therefore, prophylaxis and treatment of peripheral neurotoxicity secondary to chemotherapy are major clinical issues. Acetyl-L-carnitine (ALC), the acetyl ester of L-carnitine, plays an essential role in intermediary metabolism. Some of the properties exhibited by ALC include neuroprotective and neurotrophic actions, antioxidant activity, positive actions on mitochondrial metabolism, and stabilisation of intracellular membranes. ALC has demonstrated efficacy and high tolerability in the treatment of neuropathies of various aetiologies, including chemotherapy-induced peripheral neuropathy (CIPN). In several experimental settings, the prophylactic administration of ALC prevented the occurrence of peripheral neurotoxicity commonly induced by chemotherapeutic agents. In animal models of CIPN, ALC administration promoted the recovery of nerve conduction velocity, restored the mechanical nociceptive threshold, and induced analgesia by up-regulating the expression of type-2 metabotropic glutamate receptors in dorsal root ganglia. These results, plus the favourable safety profile of ALC in neuropathies of other aetiologies, have led to the effects of ALC on CIPN being investigated in cancer patients. Preliminary results have confirmed the reasonably good tolerability profile and the efficacy of ALC on CIPN. The present studies support the use of ALC in cancer patients with persisting neurotoxicity induced by paclitaxel or cisplatin treatment.

PMID: 17696592 [PubMed - indexed for MEDLINE]

from http://www.ncbi.nlm.nih.gov/pubmed/17696592

There are many papers on the net like this one over the past decade.

I am not sure if after all this time it will work for you, but it is worth a try.

Carnitine is also used in patients who develop neuropathies from other drugs. The HIV community has been using it for years.

You'll probably need about 2 grams a day, in divided doses.
Perhaps more.
http://www.raysahelian.com/acetylcarnitine.html
near the bottom of the page is a study using 1 gram/day IV.
That would be about 2 grams orally, since not all carnitine is absorbed.
You don't have to buy his supplement, as this can be found in many places. Online stores have better prices than locally.
Acetyl carnitine can be expensive.
many of us use iherb.com
another good one that is affordable is vitacost.com

You can start with 500mg daily and work up to the 2 grams if needed.

[luvsbooks]

Hello. I want to thank you so much for all of your help. I will look int the carnitine.
Sincerely

[daniella]

Hi welcome and I am sorry for your suffering. This is a very warm and informative community. I have PN in my legs and they used to feel more weak then they do and the pain on top of that. Now I have the pain but from increasing what I do over the past 2 years they feel stronger so to speak. I am not saying for you to do this but just my experience. Also if your meds are not helping I would encourage you to call your doctor. There are many different ones that may help and some take a lot of time. Have you been to a pain doctor other then a internist? Hang in there and feel better

[Grizabella]

My daughter-in-law has malignant melanoma and after her first treatment of a year on Interferon, she developed a horrible problem with pain in her legs and hasn't been able to get any relief. Now the malignant melanoma has resurfaced and she's on a new course of chemo that she'll need to be on for five years. Again, she's suffering a lot with her legs. I'd think surely her cancer doctors must know about this carnitine, but maybe not. I'll tell her about it.