Fighting Neuropathy

[Liz=)]

I'm on my last Folfox tx this week and so far the numbness pins/needles feeling is starting to go up my legs on the worst days and the bottom of the feet on my best days. I feel very unsteady on my feet and once couldn't feel the accelerator in my car. Of course, there's also my fingers and even my mouth/tongue/teeth but my feet bother me more!

The doc is only telling me that in some cases this can be permanent. No stats or other ideas? I've been using warm footbaths and/or warm ricebags on my feet, the heat seems to help temporarily, but what about drugs such as Lyrica (or is that only for diabetic neuropathy? or are the side effects of that even worse?)

Does anyone have some helpful advice on what I can do to help this "heal up"?

[Cb75]

My dad had numb fingers and toes. His natriopath recommended vitamin b 12 injections. He's now fine and believes that the injections helped.

[esk2poo]

Liz,
I tried cymbalta and lyrica and they did not appear to help and I was actually getting panic attacks while on them. Since got off of them and mentally feeling better. The neuropathy appears to be at its worst and was doing so 3 months post chemo. I just went last Friday for my first accupuncure treatment. He said it would take about 6 treatments to see if I get relief. I will let everyone know as all it is costing me is my co pay.
Good luck,
Allen

[lepperl]

I hope your neuropathy resolves. I don't know if this will help to make you feel better but I had horrible neuropathy from oxi. I had both kinds. Could not be near anything cold. Couldn't even look in the fridge for a second. Could not drink anything unless it was heated. Couldn't even turn pages of a book or button my own clothes.I also had trouble walking. It stuck around for about 2 and 1/2 weeks after last dose and it resolved. I hope yours does too.

[Liz=)]

I hope your neuropathy resolves. I don't know if this will help to make you feel better but I had horrible neuropathy from oxi. I had both kinds. Could not be near anything cold. Couldn't even look in the fridge for a second. Could not drink anything unless it was heated. Couldn't even turn pages of a book or button my own clothes.I also had trouble walking. It stuck around for about 2 and 1/2 weeks after last dose and it resolved. I hope yours does too.

Resolved is a very good word! I didn't want to do a roll call kinda thing because I'm thinking there are a lot of Stage II and IIIs out there who move on with their lives and don't look back... at least not on the CC board.

Well I did find out that the heat tx I'm doing is counterproductive to the hand/foot syndrome

[waw4]

From what I've read, time is your most likely best healer.

E.g., some stats from the 2005 paper "Management of oxaliplatin-induced peripheral neuropathy" (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1661634/)

"In the MOSAIC study evaluating FOLFOX in the adjuvant treatment of colon cancer, the main side effect of FOLFOX4 was also the anticipated sensory neuropathy (Andre et al 2004). The overall incidence of grade 3 neurotoxicity was 12.4% and 18% among patients who received the entire planned 1020 mg/m2 dose of oxaliplatin. However, the neurotoxicity proved reversible in the vast majority of patients so that at 12 and 18 months after discontinuation of therapy only 1.1% and 0.5% of patients, respectively, had residual grade 3 neurotoxicity (Andre et al 2004).

In another study conducted by the National Surgical Adjuvant Breast and Bowel Project (NSABP C-07) and reported at American Society of Clinical Oncology (ASCO) (2005) (Wolmark et al 2005), in which 2407 patients were randomized to either Roswell Park schedule 5FU-LV (500 mg/m2 of both given weekly for 6 weeks, followed by 2 weeks' rest for 3 cycles) versus the same 5FU-LV regimen and oxaliplatin (FLOX) (oxaliplatin at 85 mg/m2 every two weeks, but only on weeks 1, 3, and 5 of the 8-week cycle; cumulative dose 765 mg/m2). Seventy-three percent of patients received the planned oxaliplatin treatment. The regimen was tolerable as grade 3 and 4 toxicities were similar in the two arms (Grade 3/4–50%/10% FLOX vs 41%/9% 5FU-LV). Only 8% of patients experienced grade 3 neurotoxicity and this decreased to 0.5% of patients after 12 months (Wolmark et al 2005)."

I hope you're among the majority for whom the chronic neuropathy resolves itself!

[Rob in PA]

I have neuropathy to the point that it is very annoying but not yet painful. i am two years removed from oxi, and maybe JUST maybe, it has gotten a little better with time. I tried vitamin b shots and tablets, went to a neurologist and had an eeg (i think thats what it was called) I dont' recommend that eeg....very strange and kidnda painful. End result told me what I already knew, yup, I had neuropathy. Heard too many horror stories about lyrica and neurontin. Won't do that. Even got a prescription filled for neurontin but never took one!

Time is best remedy.

RM

[lepperl]

I hope your neuropathy resolves. I don't know if this will help to make you feel better but I had horrible neuropathy from oxi. I had both kinds. Could not be near anything cold. Couldn't even look in the fridge for a second. Could not drink anything unless it was heated. Couldn't even turn pages of a book or button my own clothes.I also had trouble walking. It stuck around for about 2 and 1/2 weeks after last dose and it resolved. I hope yours does too.

Resolved is a very good word! I didn't want to do a roll call kinda thing because I'm thinking there are a lot of Stage II and IIIs out there who move on with their lives and don't look back... at least not on the CC board.

Well I did find out that the heat tx I'm doing is counterproductive to the hand/foot syndrome

This is not medical advise--just going to tell you what I do--- Aquaphor cream on hands and feet everyday and lots of lotion everywhere else. Maybe this will help so you can continue with what you are doing. I do not get hand and foot syndrome and this is what I do

[soccermom]

I justinished my 12 treatments at the end of June. I made it through 9 treatments with the oxaliplatin but the neuropathy was just starting and the onc pulled it very quick. Well it has gotten so much worse that my fingers and feet are always numb and tingling. I too am hoping it will get better. My onc says it gets worse before it gets better. I can't stand the feeling!!

[brigita]

I've had Oxi neuropathy for nearly four years (fingertips but mostly feet & legs). I've tried just about everything under the sun to no avail, so the best advice I can give is what my onc told me: I'll get better...unless it doesn't.

[Joanne 814]

I am just about 4 yrs out from treatment and I must fall into the small percentile. Although much improved from 2008, still a problem. Hands way better, only totally numb on tips. Cannot feel anything. No pain. Feet, totally numb still (cannot walk barefoot, or wear flip flops) and now some heel pain due to a broken foot and walking in a boot for 6 weeks a few months ago. The heel is pain, but feels very neuropathy like, as it is not a consistent pain, but a tingly pain. Depending on how I sleep, the pressure of the mattress against it, is so much pressure that I can get out of bed and put no weight on it for the first step, and then by the 2nd and 3rd it is a little better. It is painful. I go in Aug for my 4 month BW and have to talk about it with Onc. A little nervous, as I had an elevated CEA in April Blood work, but had just broken the foot 3 days prior and was on lots of pain meds. Also had a bad mamo within that time, that resulted in a month of stress consisting of ultrasound, surgeon visit, and stereo biopsy in the hospital (while in the broken foot boot), and it seemed to be ok, but just some funky stuff happening with me lately. I do not take anything for neuropathy, but with this pain, might ask about some relief!!

ONWARD!!!

Joanne

[beth568]

I think this is a highly variable thing among individuals. The cold sensitivity that comes with FOLFOX disappears relatively quickly for most people. Peripheral neuropathy in hands and feet can linger for a while, and there's really no way to "cure" it. It's the result of nerve damage, and sometimes those nerves will regenerate, sometimes they won't.

Time does help in most cases. I'm about 9 months from my last chemo infusion, and my feet are still quite numb, but my hands have improved (my onc says that this is a typical pattern, and that for some reason feet seem to be slower to change, if they change at all).

Some people do get relief from neuropathic *pain* with neurontin, Lyrica, or other drugs. But those meds can't address the tingling/numbness that most of us feel. It's just a waiting game. And in the meantime, you learn to function with the weird feeling.

Good luck finishing up chemo! It's a nice milestone.

[kimmercans]

There is a new medical food (by prescription only) called Metanx. It is specifically for neuropathy. It is a combination of l-methyl-folate and vitamin B6. I have prescribed it to a few of my patients with neuropathy and it seems to provide significant relief.

Best of life:),
Kim

[Coppercent]

I used Metanx through treatment and it worked really well for the neuropathy from the Oxi. I never had symptoms for Neuropathy and now that I have finished treatment I am still free from any symptoms. Good luck!

[SMR]

A question for those who mentioned metanx. I was under the impression that it could not be taken with FOLFOX or FOLFIRI because it has folic acid in it. Any thoughts/advice on that? DH didn't get it for that reason, but my dad uses it for diabetic neuropathy and says it works well. Also, if onc would ok it any idea if it may help reverse the symptoms or whether it needs to be taken from the start to avoid symptoms in the first place?

THANKS!!

Edited for misspelling!