How long did your neuropathy last?

[crockpotgirl]

Its approaching a year for me, and while my hands are getting better, my feet are still rather numb. I'm wondering if you can share your neuropathy timelines with me, particularly if it took more than a year. I guess I'm looking for hope, but I fear that I may be in the minority of people who have a permanent neuropathy.

Thanks,
CPG

[Surroundedbylove]

Hi CPG,

Have missed hearing from you!

Mine started to get better a little earlier than one year. It very, very slowly improved and at about 14 months felt its best. Interestingly (and not so good) - in the last month the small amount lingering seems to have slightly worsened.

SBL

[nicola smith]

I am some 8 months post chemo (Folfox6) and the neuropathy is still profoundly uncomfortable but at least not disabling. I don't think there has been any lessening yet.

I had 11 rounds with full oxaliplatin; the last round was reduced by 20%

[CRguy]

I am 8 months out from last FOLFOX, progressively / slowly better since the start...but no leaps and bounds changes...only gradual. Have been told may take 2 years to resolve fully to best situation...have been told possibly permanent.

Recent changes involve : waxing / waning effect day to day, and very occasional mild flash of localized "pain" (though I hesitate to actually call it pain)...kind of like the shooting twinges you would get as dental freezing wears off or numbness recedes after your hand or foot has been "asleep".

On The Journey
CRguy

[Rick7]

I am 21 months out from my last TX (Folfox6). The Neuropathy is annoying, but not painful.
At the end of TX my Neuropathy was very severe, so it is slowly getting better for me.
I couldn't button shirt buttons or type on the computer and I was always stumbling.

Good luck,
Rick

[pollo65]

I was out of Folfox for 14 mos before resuming, and the neuropathy never went away. After having to resume chemo my onc took out oxi agter 6. Everyone is different.
pollo 65

[jjlist]

I am 8 months out , and hands and feet have only very very slightly improved. So little sometimes i am not ever sure if it has improved.
and it feels like the in the last couple of weeks, it has gotten worse. I thought I might have been mistaken, but now i see that the intenstity level of the symptoms for others here can fluctuate too. OXI is nasty stuff. Is the standard protocl still 12 treatmennts? I stopped at 10.

[chrissyrice]

From the onset of neuropathy ... it took almost 11 months.

[cashmere]

I am 3 years out and I went from severe to annoying. It improved to annoying about a year ago. I suspect that this is it for me since it has leveled off, so permanent neuropathy. I do take 75mg of Lyrica a day to take the edge off. Pearl

[patricia]

Chemo stopped mid February, 2011 for me. I can notice definite improvement in my feet and up my legs. One test I do is to curl my toes and rub them against each other. I can now feel something in my big toe and the one next to it. The neuropathy has never been bad in my hands, and they now feel normal in terms of nerve damage. The joints ache a lot, but that is probably arthritis. I do take B6 daily as recommended by oncologist who says it may help with the feet. Yesterday, my rheumatoid arthritis doctor said what I need is a "tincture of time" for the nerve damage to subside more. I wish you (and everyone) good luck!

[Jayna]

crockpotgirl,
My last FOLFOX tx of oxy was back in April. My nueropathy was becoming quite painful. We dropped the oxy on tx #9 and had the last 3 with 5FU/Lecov.
I have been taking 75mg of Lyrica at night before bed and it has improved my hands and feet. I wouldn't say they are prefect but I will say that I can type on my computer (I have a sit down at the computer job) and I have been walking long distances without trouble.

Praying that your hands and feet feel better with each passing day!
Jayna

[RickMurtagh]

I finished chemo August 2010. My hands are not too bad, no pain, just missing some feeling. My feet feel like I have wet sand in my socks all the time - very annoying, but tolerable. It is better than the pain and sensitivity to cold I started this journey with. It is still funny to me to look at my bare feet and still feel all tingly and like there is wet sand in my socks. I can't tell you how many times I pull off my shoes to check on my feet.

[Canadianmom]

Hi CPG,

My neuropathy has been very bad since my last oxi infusion. I am only six weeks out but my neurologist explained that the nerves that innervate the buttocks, legs, and feet originate in the low back. Nerves apparently regenerate approx 1mm per day.... so depending how far up you feel the numbness and tingling- you can calculate possible recovery outcomes. So if you have decreased sensation in your buttocks, (depending on your height) approximately 1 metre from butt to toes - so 1000mm - thats over 3 years recovery time.

Patience is a virtue ( i keep reminding myself).

Also, Patricia said that she is taking B6 - but my natropath said that B6 could make symptoms worse. But B1 and B12 are helpful (B12 helps regenerate the myelin sheath which covers the nerve and helps nerve impulses to travel much quicker.)

I am really frustrated with my neuropathy. So I was happy to see this thread. I still can't write or buckle up my pants. Trying to be patient with the process.

[Joy]

Still have neuropathy in my feet. Not painful just darned annoying

[sg101]

I am one year out post FOLFOX (last infusion 6/14/10). I didn't recognize my neuropathy until about 2 weeks after my last infusion but it rapidly became severe, interfering with ADLs, over the next few months. My hands are MUCH better - they still feel numb but I have reasonable fine motor control. The feet are another story - they feel like wooden blocks and when I walk it feels like my toes are curling. It makes it hard to walk very far and is very frustrating. I have found that physical therapy has helped a great deal with balance issues that I was having related to the neuropathy in my feet. My oncologist says that things can continue to improve for up to three years - I hope he's right!