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Weird question re side effects from FOLFOX (5FU/Oxaliplatin)

abrub's picture
Posts: 2178
Joined: Mar 2010

I noticed both during treatment, and now that I am almost 2 years out, that neuropathy has been focused: 4th toe left foot; recently 4th toe rt ft and 4th finger left hand. With a chill, 4th finger rt hand was also "tingling" in that neuropathic manner.

This has not been the sole extent of my neuropathy, but this oddity of the tip of the 4th digit on each limb has left me curious. I find walking is sometimes painful because just the one toe is hurting enough.

Has anyone else noticed unusual distributions of the neuropathy?

(Yes, I had full, intense cold sensitivity to Oxali, and advanced Hand-foot syndrome to 5FU, which was only eased many months later by the addition of Alpha Lipoic Acid to my supplements.)


Mchapp's picture
Posts: 96
Joined: Jul 2009

I just finished chemo - 12 rounds - but only tolerated 8 rounds of oxiplatin...I have neuropathy in both feet - just the bottoms - but it is there 24/7 and when I run it is more intense....this did not occur until 2 months after stopping oxi..."delayed reaction" I was told...

maglets's picture
Posts: 2596
Joined: Jun 2006

I finished oxy and 5fu last June...the temperature here today has dropped to around 32 degrees....can't feel my right hand fingers from the knuckles down....sigh


abrub's picture
Posts: 2178
Joined: Mar 2010

Recommendations: lots of padding in your shoes. I had severe problems where the soles of my feet felt constantly like I had no padding between my bones and rocky pavement.

An Integrative Med specialist (MD) recommended 600-1200 mg Alpha Lipoic Acid daily, which gave me great relief. It's not something I would have done while on chemo, but may be worth looking into now. I went from shuffling along in severe pain, especially when just starting to walk after being off my feet for a while to some discomfort. The effect was rapid. I've been on it since last June (finished chemo April, 2008).

Congrats on getting through. I managed 6 rounds with Oxali (actually only 5 - they skipped the oxali at my 2nd round because a nurse had screwed up my records, and I received chemo for someone who weighed more than 85 pounds more than me in my first round.) I Stayed with the 5FU for an additional (7th) round, when I had to quit, due to side effects. However, my cancer is a very rare non-standard variety, and they don't know if FOLFOX would have any effect on it anyway. It was attempted as a "best guess" scenario.

Yes, I'm having "delayed reactions" to oxali 2 years later, too. O, the things to look forward to! (But at least we are looking forward!)

Good luck!

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