I've wished there were more anecdotal information out there about neuropathy improvement over time, because it seems like such a mystery to me. If you are experiencing neuropathy improvement, please post here with your details. I think it would be helpful to others who are concerned about this side effect.
It's now been about 5 months since my last Oxaliplatin dose, which had already been cut down to 75% strength. At its worst, about 1 month after my last dose, I had trouble keeping my balance with my eyes closed (especially noticed this in the shower), had trouble buttoning buttons, and had trouble writing without having to focus all my attention on the mechanics of writing. If I straightened my arms completely I had a weird electric sensation that ran the length of my arms and was very uncomfortable, but not painful. Washing my hair in the shower felt completely weird on my hands. I quit using my fingernails for anything I normally do (basic things like getting dirt out from underneath other fingernails) because I couldn't tell how much pressure I was applying, and I was worried I might hurt myself. I had to look at my hands to tell where to put them on the keyboard (I am a touch typist). My feet were mostly numb, and were pretty numb to touch almost up to the knee.
My neuropathy has been improving in fits and starts. I may go 3 or more weeks without improvement, and then suddenly I realize that things are different. Or I might have a week where things seem a bit better every few days.
My trouble with handwriting only lasted a few weeks, and I have no trouble with buttons now. Washing my hair feels nearly normal. My fingertips feel weird but I have enough sensation to do everything I would normally do. All the really awful side effects above have resolved, although my lower legs below the knee and my feet still are pretty numb to touch. I still can't walk barefoot comfortably. But my feet do have a bit more feeling than they did 5 months ago.
I'm a hobbyist weaver and I'm now working on putting a warp on my loom, after worrying that I might not get to weave again. The threads are fine but I think at this point I can probably handle fine threads.
At its worst, I was really worried that I should have stopped the Oxali sooner. (We stopped it when I started having trouble keeping my balance in the shower with my eyes closed.) I wasn't sure that I wanted to have neuropathy that bad for the rest of my life. But at this point I'm pretty sure my hands will keep improving, and I am hopeful that my feet will eventually improve too. Even if it stopped where it is now, I no longer feel that it is having a negative impact on my quality of life.
I have been taking 600mg of Alpha Lipoic Acid daily, and recently started taking 5,000 IU of Vitamin D3. I have no idea if the ALA has helped, obviously.
I'm hoping this offers some useful information to those who have concerns about neuropathy from Oxaliplatin. Things vary a lot, so this is just my experience. If anyone else wants to share their experiences in this thread, please do!
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid resection (24 cm removed); no stoma.
7.5cm adenocarcinoma -- mod. diff.
1 noncontiguous tumor deposit removed; 0/31 lymph nodes
T3 pN1c M0
5/18 before surgery, CEA 11.2
6/18 began FOLFOX
7/18: CEA 1.9; added neulasta post infusion
9/18: CEA 2.8
10/18: 25% chemo reduction
11/18: CEA 1.8
7/19 CT scan clear