oxylplatin neuropathy

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oxylplatin neuropathy

by tdcbart on Sat Sep 19, 2009 12:00 AM

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I'm stage III rectal cancer with pre-surgery radiation/5FU, low rectal rescetion and temp illiostomy followed by illiostomy reversal and 8 rounds of Folfox/Oxyiplatin. I had minimal side effecgts during the Oxy, but develped neuropathy a couple of weeks after treatment ended. Tried neurontin but it had no effect on the neuropathy and made my chemo brain worse.

Threre were a couple of stage three trials going on, one for an ointment and one for alpha-lipoic acid. I signed up for the ointment but my blood sugar was slightly elevated so I wasn't accepted (wanted to insure participants didn't have neuropathy due to diabetes). I researched the alpha-lipoic acid test on-line and found I could buy it at health stores.

I took 1200 mg, three times a day and within 2 weeks I had some feeling in the bottom of my feet (I was again extremely ticklish as I always had been). I also was less wobbly getting out of bed, didn't fall forward in the shower when I shut my eyes to wash my hair, could tie my shoes in the dark and my fingers were less numb. I'm on the computer all and my typing is nearly back to normal. Since I try not to over medicate, I've since reduced my dosage to 600mg three times a day and still have good results. I drive a 5 speed and can now make out the pedals better than before.

I've stopped the pills a couple of times to see if my improvement was just due to time passing, and I would get worse within 12 hours each time. I still fell like I've shoveled snow in bare feet a bit, but it's bearable for me. I found one brand of alpha-lipoic that works best for me, but I'm not pushing buying a particular brand, so I won't name it here.

The stage three trial results aren't realeased yet, but as of the stage two trials there were no side effects known regarding alpha lipoic acid.

Just thought this was something one might try in lieu of narcotics, psychiactric drugs and other treatments that have their own side effects.

Good luck to all.

 Bart

 

 

RE: oxylplatin neuropathy

by 67chevelle on Wed Sep 30, 2009 12:00 AM

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That is interesting about the oxyplatin. I have been off chemo since Oct of 2008 and my feet are still numb. My oncologist said up to two years but maybe forever.

 I would like to try the health medicine you discussed. I have a question about how it treats your bowels. I still have problems from a colorectal surgery.

Thanks,

RE: oxylplatin neuropathy

by tdcbart on Wed Sep 30, 2009 12:00 AM

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On 9/30/2009 67chevelle wrote:

That is interesting about the oxyplatin. I have been off chemo since Oct of 2008 and my feet are still numb. My oncologist said up to two years but maybe forever.

 I would like to try the health medicine you discussed. I have a question about how it treats your bowels. I still have problems from a colorectal surgery.

Thanks,

I had an illiostomy reversal in August 2007 after a low rectal resection and finsihed chemo in April 2008, I had constant control problems since, but the alpha lipoic acid didn't have any affct on my control (NOW brand works best for me - I buy on-line at netrition.com to save money - there are other brands and other stores also. Originaly I bought 600 mg (every 8 hours) capsules at a health store). About one month ago I stated taking 1/2 tab of immodium (the enhanced version with simehticone) in the morning and night. The change has been dramatic - I have much firmer stools, and while I've still got occasional urgency I no longer have frequent emergency. I started with one tab in the morning and evening but tried 1/2 and it still worked for me. Before, I was living on bland food, beano and gas-x since any gas build-up would be disasterous, often in places like check-out lines (a little walking, a little standing, and bingo). I now eat most of the foods I ate before surgery without much problem.

After a period of time to adjust to the "new" body I think one has to take some matters into one's own hands. My oncologist knows about the alpha lipoic acid and has no problem, haven't seen him since the immodium regimen started.

I'd be interested in what works for others for cdontrol and neuropathy.

Good luck 

 

 

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