neuropathy - what can i do?

[mordani]

Hi all,
I was diagnosed with Non Seminoma TC about 9 months ago.
Since then , I had: Orchiectomy, 3*BEP ChemoTherapy, RPLND, 4*TIP (Taxol, Ifosfomide, Cisplatinum) Chemoherapy.
At the 2 nd round of the TIP i began to loose the sense in both feet and in the edge of the hand fingers.
This was getting worse and worse and now walking is difficult any I get tired and ache very easily.
I'm taking Elatrolet (20 mg) and Folic acid (5 mg) for a few weeks without any results.
I know this neuropathy is caused by both Taxol and Cisplatin.
Does anybody knows what i'm talking about and can help with advise to relieve the pain or even treatment?
If someone has an experience in which, this phenomena has gone some time after treatment (or not!!!), i would very much be thankfull to hear.

Thanks,

mordani

[andrea2]

hi, mordani! sorry to hear you've got this annoying and painful side effect. my hubby has it, too, and as it seems you already know, it is fairly common with these treatments.

for some guys, it does seem to get better with time (time as in over some months or years after treatment ends).

we were told that some people seem to be helped by elavil, an anti-depressant that may help to soothe nerve endings, but not all people really feela difference. it didn't seem to help mike's neuropathy and he didn't like elavil's (admittedly mild but annoying) side effect of brain fuzziness.

i don't know anything about elatrolet, i'm sorry, but i wonder if it is in the same family of meds as elavil. has your sensitivity lessened at all?

we also made some lifestyle adjustments to make sure mike's feet are comfortable - little stuff like no tight shoes, untucking the sheets at the end of the bed, making sure furniture is moved around a bit so he has more room to navigate without banging into anything, and he tries to take some sit down breaks during the day b/c he finds that the neuropathy is worse when he is on his feet a lot.

that said, i will say again that it did get better over time for mike once he was done with chemo, but it was a light lessening over time and he still has residual neuropathy - we're now 8 months out of chemo. since each person reacts so individually to chemo, there's really no crystal ball that spells out how much or when this stuff will lesson for any given guy.

but take heart that it does seem to lessen for some guys, and try things to cope now that your doctors suggest.

good luck!