Hello.
Curious about others experience with numbness in fingertips and toes - particularly if you have done TNT.
I went through FOLFOX chemo over the summer. I stopped Oxaly after Round 5 of 8 due to reaction of severe hand and leg cramping (which was not an issue when I wasn't on the drug). During my break in September between chemo and chemo/radiation, I had some neuropathy in lower left leg and top of my foot but it went away completely. A week into starting chemo/rad (with capecitabine - the generic of XELODA), I started feeling numbness in the very tips of my fingers and my toes, so I assumed this was from the Cape. (I also had the inflammation/redness/burning issue - which came on later - but that went away after I stopped Cape.)
My numbness *seems* to be triggered by friction, movement, and heat. Cold actually seems to help and I have had no problem standing out in the cold for an hour (even getting my sneakers soaked in slush puddles) while out with my dog or walking barefooted on the frigid concrete floor of my garage (feels nice, actually!).
I asked my Onc team if this info indicates that my numbness is more Cape related than Oxaly related (thinking that if it were the Cape, then it WILL go away vs. it being from Oxaly, which may or may not go away). The reply I received was that neuropathy is a funny thing and it can come and go, get better and then get worse, and only time will tell if it will ever go away. They said I can't assume anything about what it's from. (That said, my Onc MD did assure me when I went on the Cape that any skin affects/changes from the Cape - including numbness - goes away within weeks of treatment being over.) It's been nearly 4 weeks since I stopped the Cape and it does seem to get worse at times, so I'm thinking at this point that it's probably the Oxaly.
Also, I did not get any skin peeling issues or anything while on Cape (though I was religious about the urea cream) but now that I'm done, my skin on my fingers seems worse than usual (given it's cold and dry where I live).
I realize that time will tell but just curious if anyone who did TNT has any experience to share regarding the finger tip and toe numbness. ALSO - my apple products only recognize my finger like half the time! Thanks!