Neuropathy after folfox

[ziggymonster]

I started folfox in Feb this year....dropped the oxi last week of May, continued w 5 FU until July 3rd (treatment #10) and then stopped.....the neuropathy in my hands and feet continues to get worse.....is this a normal situation ? It is quite bothersome....taking alpha lipoacic acid but it doesn't seem to help. Anything I can do to help ?

[kiwiinoz]

Hi Ziggy
I am on round #9 now and do 10# tomorrow and the neruopathy is really starting to be noticable now.
From what my once says, and what I have read on this board it can become worse for anything for up to 3 months from the end of treatment.
If you find any effective solutions please share
Kiwi

[mstults]

It has been discussed here before that 5-FU causes some hand and feet problems. I think it is me and the oxaliplatin is getting blamed for it. I still get the shooting pains from the neuropathy. But I also have a feeling in my feet that they are swelled. And they peel all the time with dead tissue that's like a callous. My fingernails still feel loose as well.

[brigita]

Not to be a buzzkill, but I've had my CIPN (chemo-induced neuropathy) for nearly five years. It gets better...unless it doesn't.

I would suggest trying acupuncture (the acupuncturist that works in our cancer clinic said that she mine is the most stubborn case she's ever seen and that she might have been able to help if I'd seen her during treatment) in the short run and Gabapentin to alleviate symptoms in the long run.

Hope it improves!!

[sbrainbolt]

I too had neuropathy that didn't go away in my hands and feet starting about round 8, reduced Oxi on round 10, 11 and dropped for the last treatment. I started seeing an integrative medicine Dr. at MDA in Houston (same place for surgery and chemo treatment) and he started me on Cymbalta. I took 30 mg once a day for about 8 months and it was extremely effective at reducing numbness, tingling and shooting pains in feet almost completely. Hands are completely well. I recently was weaned off of it because they said the neuropathy would have healed on its own by now anyway. Weaning off was a little painful, had some initial pain return to my feet for about 2 weeks, but now it is gone and feet feel pretty good. Not normal, but MUCH better than before. Anyway, that Cymbalta was giving me a double whammy because I have been much more, hmmm let's say cranky and emotional since going off.

Dr. Lee recommended acupuncture as well to treat the symptoms, but I chose to take the meds and see how it worked first.

Good luck - I hope it goes away completely!

[Debby]

It has been 1 1/2 years since my last chemo. Neuropathy didn't start till number 10 and finished 12. It got worse when finished. It did get better with time but am still dealing with it. Hands are 80% back to normal but my feet maybe 50% back to normal. Have tried the B vitamin route - didn't do anything. Just have to be careful when walking, can't go barefoot, etc. I look at it as I am alive, I can live with the irritation.

[David Losh]

Glutemine powder helps. I drink it daily in my smoothie, I buy at Sam's Club. It's a component of protein powder. Taken daily it can help heal the neuropathy.

Cymbalta, and that kind of medication also helps the healing process, but the commenter is right, you need to have it be a part of a program you will be weaned off of.

[MarkS.]

I've had neuropathy since I finished a couple of years ago. It's not debilitating so I deal with it. Primarily it's numbness in the tips of my fingers and most of my toes. No really lingering/consistent sharp pains, but every once in a while I get a "twinge".

[nkoske]

My last infusion of Oxali was almost exactly 2 months ago, and I feel it more in my hands than I did last week. From everything I've read it get worse before it gets better (if it gets better).

I thought about taking glutamine, but there seems to be some conflicting studies about the role of glutamine and tumor growth.

From the MSK site: http://www.mskcc.org/cancer-care/herb/glutamine

Oral glutamine was shown effective in preventing oxaliplatin-induced neuropathy in colorectal cancer patients (6);
...
Furthermore, recent findings suggest a role for glutamine in tumor cell growth and maintenance (17) (24).
More research is needed to resolve the ambiguity.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3641590/
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2917518/

I'd hate to be taking something that may be helping 'grow' a tumor. With that said the tumor may just use up all the stores of glutamine leaving none for the healthy cells. Supposedly glutamine is used by many immune system cells. If the Glutamine is used first by the cancer cells disproportionately to the healthy immune cells, maybe supplementing makes sense so your immune system can help fight, but I think the jury is still out on all this.

I'll take the neuropathy over cancer any day.

[ab123]

My last FOLFOX infusion was April 24 - treatment #8. (Do most people with Stage III have more than 8 rounds of adjuvant?) I had some neuropathy right after each treatment that lasted a couple days and then would go away - cold sensitivity, pins and needles, mild electric shock when touching cold stuff. Then in early to mid June (around the time I would have had infusion #10 if that had been prescribed) it started to feel like there was something in my shoe when there wasn't. It kind of seemed like my socks were bunched up - they weren't. I kept taking off my shoe and checking. Then it got progressively worse over a couple weeks until my left foot was mostly numb, and then my toes on my right foot, and then my fingertips.

At first I was missing shifts in my stick-shift car and I almost fell down once in the shower. Stairs required more attention. I had a very hard time running a 3.5 mile road race around that time - walked half of it. By now - mid-August - I'm not sure if it's gotten better or just stabilized and I've gotten used to it. My feet aren't actually numb - I can feel everything when I touch them - but there's just less feeling and it's pins-and-needles-ey. Getting up after a long period of lying down is a strange uncomfortable feeling in the feet that causes me to limp for the first few steps - helps to just sit up and let my feet touch the floor for a minute first. Control nerves are fine - I can flex my toes, jog, run to catch the bus (with difficulty), ride a bike - but sensory is a bit deadened. Fingers too are different - not actually numb. It kind of feels like they are burned or healing from some kind of injury - feels like they are a little swollen but they aren't. I can type and do buttons. Control is mostly fine.

I've been assured it will probably get better. Even if it doesn't I can live with it, but I don't like it. I've stopped telling my wife about how weird it is - I think I was annoying her.

I'm still very glad I took the Oxaliplatin.

[nkoske]

(Do most people with Stage III have more than 8 rounds of adjuvant?)

I believe so. 8 Cycles of Folfox = 6 Cycles of Xelox. Pretty standard for those of us with Rectal cancer that were treated with neo-adjuvant ChemoRT. I think those with pure colon cancer (can't do ChemoRT) do 12 cycles of Folfox or 10 cycles of Xelox.

The difference between Folfox and Xelox is because Folfox is a 2 week cycle, while Xelox is a 3 week cycle.

[Neilhoh]

I am at treatment 14 of 24, Folfox4, although, since treatment 8 the Oxy has been dropped out and will be reintroduced treatment 16. Like others, my fingers and toes neuropothy has got worse and doesn't go away toward then of each fortnight, like the sharp pain with cold stuff, presumably induced by the Oxy that I haven't had for some time. In fact cold tiles on the soles of my feet feels great.