Postby Soccermom2boys » Sat Aug 06, 2016 2:03 am
I am living with post-chemo neuropathy hell as I write--ugh! So I did all eight of my FOLFOX treatments with the regular dose of Oxi. I had the cold sensitivity for about a week after each round, but that was always it and it was only in my hands and I could easily shoo it away by warming them back up. So the very last round, I was just ever so slightly feeling the numbness and tingling of neuropathy in my feet. I am now two months post chemo treatments and my feet and hands drive me crazy from the neuropathy. I walk several miles a day which is not to say it doesn't hurt to an extent, but it hurts anyway just sitting around so might as well get my exercise in regardless.
It is a most bizarre feeling that I could never adequately explain except to say it is annoying and most uncomfortable--would give it a level six on the ten point pain scale. Never a sharp shooting pain, but an always present discomfort. Every time I put on my socks and shoes I have to check to make sure my socks aren't all bunched up because that is how it feels to my feet, but they never are, just an annoying constant feeling. I would say it took at least six to eight weeks post chemo for my feet to get that bad. They seem to have plateaued with the level of discomfort, but have not gotten any better either, just in a holding pattern. For now it has stuck to my feet only, have not noticed it creep up to my legs, but perhaps that fun is just around the corner???
The hands were initially not an issue at all post treatments--silly me, I thought perhaps I was getting off easy with not having to deal with any neuropathy in them. Around six to seven weeks post treatments, I started to feel small twinges of numbness in my fingertips (not all of my fingertips, and truly, just at the very tips). Well, several weeks later and two months post treatments, they too are most uncomfortable. Again, no sharp shooting pains, but for sure hurting in their own unique way I could never adequately describe. When I wake up in the morning, I can barely move my fingers--it takes some effort to get my hands going in the mornings, that is probably when they are their most painful. For now anyway, the neuropathy seems to be in about the top third of the fingers--I would love to say that is as far as it will go, but I know better than to think I could be so lucky!
While I have been able to maintain my usual lifestyle, I do so in silent pain/discomfort and have to get help sometimes for the basics like screwing a lid off or on. Touching the bristles on my hairbrush hurts so it is tough to brush my hair back in to a ponytail, but as I am the only female in my house, I just suck it up, won't be getting any help with that one. LOL Not a day goes by where I don't think about it incessantly and try to see if there has been any change for the better, but unfortunately I am only noticing it getting worse in my hands/fingers and no relief with my feet. It can take a toll on you mentally for sure, I have moments where I just want to scream and cry from it. Walking barefoot outside of my house is a huge NO--tried it once walking on grass to the pool and was so agonizing and torturous, won't be doing that ever again until/if the neuropathy actually is gone. I have read enough posts on here to know that I may be stuck with neuropathy, to some degree, for the rest of my life, I just pray if that is the case it is a much less painful version than what I am living with now.
My onc's office said to take vitamin b6 daily immediately after I felt it starting up. So I have taken a 100 mg tablet of it daily for past two months and can't say it's making a difference so far, but I will continue with it for a few more months to see. If by six months I feel no noticeable difference then I will look in to medication for it. I have heard mixed results regarding the efficacy of the various medications to combat neuropathy so who knows.
I wish I could paint a rosier picture for you, but I would be lying if I did. Here's to hoping your neuropathy experience is as mild as is possible given your number of treatments with Oxi!
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox