NeuroTalk Support Groups - neuropathy from chemo

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- - neuropathy from chemo (https://www.neurotalk.org/peripheral-neuropathy/190941-neuropathy-chemo.html)

neuropathy from chemo

New to site. Found this forum out of frustration. Had chemo for breast cancer. The lump was right on the size line between chemo or no chemo needed. I was scared and confused at the time and I feel the doctors pushed me right into it. Half way thru I started getting numbness in hands and feet. Was told not to worry, that was normal and it would all go away after treatment To make a long and painful story shorter, it is now 5 months after chemo and not much improvement. The doc is still saying "don't worry, be happy - it will all go away in 6 months after treatment"

This is all going away in another month ? I don't think so !!! My face, head & back all feel like I am wearing a latex glove (can feel most things but not the light surface touch). Fingers are slightly numb (the only part of my body that has improved a bit). Feet are lumpy and legs from ankle to above the knees are surface numb.

Take b vitamins but I don't know how much it is helping - afraid to stop to see if it gets worse. I can handle lumpy feet & fingers that don't feel quite right - I just want all the surface numbness to go away.

There are studies showing that acetyl carnitine may be helpful during and after chemo treatments.

Some doctors know this and others not, or don't believe it and
don't offer it. I also know two women which breast cancer who used flax oil mixed with cottage cheese (to provide amino acids with sulfur), to make the chemo less damaging, and one of them used this to prevent a metastasis.

Here is one post from ~Pansy~
http://neurotalk.psychcentral.com/sh...967#post238967

The dose of acetyl carnitine (which is over the counter) is often 2 grams a day. Take in divided doses. This helps with the DNA damage from the chemo which occurs in your good cells, including nerves, so that the mitochondria can work better.
This is just one of many articles about it:

Quote:

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

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

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

You can Google acetyl carnitine chemotherapy induced neuropathy and read more.

Thanks, I have never heard of that one. I do eat a lot of cottage cheese. Never thought to add flax. Will pick up others at drug store tomorrow. I am ready to try anything !!!

Flax oil (not capsules) typically is not in drug stores.

Mostly health food stores, in the frig. Capsules are more expensive, since you are going to use about 2 tablespoonfuls at a time. You can also make salad dressings with the oil, and also
smoothies.

Acetyl Carnitine will be much less expensive online (sometimes more than 1/2 the cost online compared to local stores). NOW makes a
good affordable type. This tends to be pricey however, so expect that. The most expensive you will probably find locally is at GNC...so you want to avoid that if possible.

You can check iherb.com or Amazon for some savings.

I had hand foot syndrome ALL over my body. Numbness, clumsy, lost every nail, peeled like a bad sunburn ALL over. The numbness is pretty much gone, last treatment was Oct 16. Good luck!!!!

Barb - Thank you, thank you, thank you - No one else at the clinic had numbness as bad mine. Doctors act like I am faking it. They are (or pretend to be) totally clueless about how bad they fried me. My last chemo was Feb. 15th.

Did the worst go away gradually or all at once? The docs keep telling me it will ALL be gone in in another month or two. There has been very little improvement in the first 4 1/2 months. Did yours continue to improve after the 6 month window for most improvement? I seem to take 2 steps forward and one (sometimes 2) steps back. I never know what I will feel like when I get up in the morning.

Any information or stories you could tell me would be greatly appreciated. I really need someone to talk to that understands.

lol - I forgot to mention the fingernails. Walked around with band aids taped around mine so they wouldn't come off before the new growth got a good start.

People vary in the status of their essential fatty intake.

Some people are very low in these essential nutrients and those people I'd expect to have more chemo damage. Those who eat
whole foods and include Omega-3s in the diet on a regular basis, may be less impacted.

There are people coming to NeuroTalk 5 + yr and further with chemo damage that did not resolve for them. So it is important that you do something now, and not wait. Many doctors are clueless about chemo damage, still today.

We typically eat a lot of fish in our house but not much olive oil. I will pick up some of the acetyl carnitine. Seems to have mixed reviews, mostly for moderating effects but not curing, worth a try.

At first I was very optimistic about recovery, but I get more depressed every day. I am so mad at myself for letting the docs push me into chemo that was probably not necessary. They said 20% chance of returning & spreading if no chemo. I should have waited to see if I was one of the 20% and dealt with it then. They made it seem like chemo was going to be easy - feel bad for 3 months and eliminate the risk. No one EVER mentioned permanent side effects.

Lumpy feet I can deal with - a pair of good tennis shoes and some gel inserts - I can walk for miles. It's all the surface numbness that is driving me crazy. I just want to feel a light breeze on my face again.