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Old 04-20-2008, 12:44 AM #1
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Default Hubby has neuropathy of feet due to chemo...

He has had it for almost a year. It is very numb and very painful. The oncologist said it will just take more time and that sometimes it never gets better. Any insite from anyone? Any therapies you know of that would help?

Thanks!
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Old 04-20-2008, 06:35 AM #2
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Lightbulb Chemo

Chemo damages the mitochondria (energy cells) of cells. Some doctors pretreat with the amino acid acetyl-l-carnitine and CoQ-10 during chemo.

If the cells have died, I don't think they will work now. If only damaged, they
may heal if you use both of these nutrients.
Both are over the counter.
Doses to start at would be 1 or 2 grams a day of the carnitine and at least
200-300mg of CoQ-10 (a enhanced absorption type).

Quote:
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]
Also this article:
http://www.find-health-articles.com/...peripheral.htm
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Old 04-20-2008, 09:03 AM #3
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Default MrsD

Would those doses be the standard for all types of PN? Or just as it relates to chemo-induced PN?
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Old 04-20-2008, 08:41 PM #4
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Default Your Ocon is right and not.....

Even neuro's hedge about the 'possibilities' of improvements with any type form of neuropathies.
That is because each one of us is uniquely different.
I speak from experience here and URGE you to at least try to follow Mrs D's advice. She has helped me immensely.
From my own experiences? I was pretty much given the impression by many medical professionals that there was no hope at all for nerve regeneration. After long term immune therapy and the good advice of folks such as Mrs D and Rose, I've tailored my own basic sensible vitamin/mineral regimen that has helped to some degree. I have seen minute improvements in nerve function. This has taken over five years, so it's a long haul. But, it can happen and the process of nerve regeneration is more mysterious than nerve death.
Chemo can and does do a number on the body in ways docs really don't understand or appreciate.
Friends I know who have been thru or are going thru chemo also see top-notch neuro's - they are the ones who KNOW how to deal best w/the PN pain and often work with the Ocons to find the meds that work best together...as some aren't too good together. Worth a look see, and maybe some relief?
As a person who's two years plus 'out' I hope this helps! {got the PN long before the 'c'} Even w/PN? Here is to being FREE! - you know what I mean - 's!! - j
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Old 04-20-2008, 10:55 PM #5
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Default Another question?

Would it work on even mild chemo like methotrexate?

Billye
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Old 04-21-2008, 06:33 AM #6
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Lightbulb methotrexate...

This drug does affect mito functions, so yes, I'd say try it.
Not inexpensive, but may help.
NOW brand at iherb is pretty reasonable.

Quote:
Cell Biochem Funct. 1989 Apr;7(2):129-34.Links
Methotrexate: studies on cellular metabolism. II--Effects on mitochondrial oxidative metabolism and ion transport.
Yamamoto N, Lopes LC, Campello AP, Klüppel ML.

Departamento de Bioquímica Universidade Federal do Paraná, Brasil.

Effects of methotrexate (MTX) on mitochondrial oxidative metabolism and ion transport were studied. MTX decreases the membrane potential (delta psi) upon energization of the mitochondrial membrane by NAD+-linked substrates and decreases the amplitude and velocity of swelling induced by glutamate and alpha-ketoglutarate. MTX also has an inhibitory effect on the activities of the oxidation enzymes of NAD+-linked substrates without interfering with the oxidation systems of FAD-linked substrates. The effects of MTX could be interpreted as a consequence of a decrease in the ionic conductivity of the mitochondrial inner membrane.

PMID: 2766470 [PubMed - indexed for MEDLINE]
Yes, the dose would similar. Some people take really high doses of carnitine.
Most people respond to 1-2 grams a day given in divided doses (there is limited absorption from the GI tract). I found one reference that said in doses over 4 grams a day there may be suppression of thyroid hormone, so that should be tested. I am not aware of thyroid problems with CoQ-10.
The HIV community typically uses very high doses of carnitine.
This is a pretty good monograph, giving details
http://www.catie.ca/supple-e.nsf/07d...3!OpenDocument

This monograph does not mention any thyroid issues:
http://lpi.oregonstate.edu/infocente...ine/index.html

The thyroid interaction seems to be related to the fact that carnitine is used in hyperthyroid people to prevent bone loss.
Some extrapolate this to effects on normal thyroid actions, but others say it doesn't work that way. So getting tested is a good
idea.
example:
http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum

and this which is the opposite:
http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum
(saying carnitine is low in hypothyroid patients)
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Old 04-21-2008, 05:37 PM #7
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Default I just now came across this

on the RLS site I'm still exploring:

http://www.rlshelp.org/rlscomp45.htm#Coenzyme%20Q-10

The tremors persisted following termination of the drug. Trying to help her with the tremors, I started her on coenzyme Q-10, 100 mg am & pm. To our surprise, it didn't seem to help the tremors, but it did two other things: It largely relieved the peripheral neuropathy and it greatly diminished the severity of RLS, frequency of severe sessions of RLS, and dependence on codeine, her drug of choice.
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Old 08-03-2013, 12:50 AM #8
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Default my experience with inflammatory tenosynovitis of the feet/hands following chemo

Quote:
Originally Posted by Friend2U View Post
He has had it for almost a year. It is very numb and very painful. The oncologist said it will just take more time and that sometimes it never gets better. Any insite from anyone? Any therapies you know of that would help?

Thanks!

following chemo had severe pain in feet and progressively clawed hands, both on waking but with feet progressively during the day too, esp from evening, then from afternoon on... not just pain but so bad it made me cry to walk some days and with the hands struggled to open a jar or turn a handle, and it was like they had grit in them, really stiff and immobile... got dx'd with inflammatory tenosynovitis, put on prednisolone 14 days, helped a lot, then NSAIDs (Meloxicam), also helped eventually, and 20,000mg omega 3s also helped a lot... and after over a year with it it is mostly gone!!! (hoo-ray! hope it stays gone). Did have severe stabbing pains in the toes at the start of it all too... was told it was probably 'peripheral neuropathy' and would go away... and that part did...the rest of it lasted around 1.5years and only stopped with the steroids/omega 3s/NSAIDs

but a few months after the feet/hands was dx'd with central apnea, a year later had severe polyuria (started 3-4L a day, then up to 5-8L a day), final conclusion was the latter was autonomic neuropathy as a result of chemo.... so essentially, part of chemo recovery.

what helped for the feet/hands... MASSAGE SANDALS beside the bed, ironic because who'd have dreamed that those painful bobbly sandals could help immensely painful rigid tissue in the feet... but it helped to at least walk and the pain went sooner... and all things anti-inflammatory... I'd suggest he gets to a rheumatologist, they MRI his feet and take it from there.

good luck with it.
on the bright side we're alive because of chemo
but living with chronic pain with no hope on the horizon was immensely despairing.
taking it as a buddhist challenge and viewing it in a Taoist framework helped me a lot too.

but it did take a lot of adapting too... mentally, emotionally and the fatigue it causes with pain just draining you daily.

hang in there
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