For Trent-CI Peripheral Neuropathy? (Read 733 times)

I think I saw somewhere that you were a Doc, or at least play one on TV. I've been done with treatments for nearly a year (mid Oct) and still have some effect in my feet and fingers. Nothing particulary painful, just numb or tingly, with the feet being more noticable than the hands. There seems to be some variation from day to day, but over all, its about the same since it started. One of my docs says it will most likely go away eventually, but might take "awhile", the other says probably not. Any information I can find on the internet seems to be equally as conflicting and vague. I've tried Lyrica and Alpha Lipoic Acid with B6, neither seemed to have an effect. It doesn't really keep me from doing anything I want to do, but it does affect my balance a bit on uneven surfaces and I'm a little funky on treadmills. Its more annoying than anything else, but it would be nice if I could look farward to it going away. Any experience or info you could share to point me to would be appreciated. Post here or email csahms@hotmail.com, whichever you prefer.

CI = Chemotherapy induced.

Public is fine, thanks. I just can't seem to find any real decisive information on it. I know that they always say speak with your doctor, but I even get conflicting information from them. Just looking for additional input.

Oh, hey, thanks. Got busy at work and this dropped off my radar. I'm sorry. I would also ask what has been tried so far for the CI PN.

Did they talk about any tricyclics (like amitryptilline), antiepileptics (like valproic acid) or steroids? Different folks can get relief from those, although I am not sure about the specifics of CI PN with them.

Oxaliplatin is relatively new and the potential for long-term peripheral neuropathy had been until recently underappreciated. The good news is that if you are a year out, I think there is definitely a chance this will continue to improve. Some of my patients report ongoing improvement for up to 3 years. The bad news is that it will probably not completely normalize. CI induced neuropathy is particularly difficult to treat, more so for some reason than diabetic neuropathy for example. Most of the medications that can help other types of neuropathy, such as Lyrica and Neurontin, have not been shown to be better than placebo in most studies. For oxaliplatin specifically, using calcium and magnesium during the infusion appears to reduce the incidence and severity of neuropathy but this was pretty controversial at the time you were being treated so would guess you may not have received that. One year out I think it would be unlikely to help but I suppose you could try it (a couple Rolaids per day would do the trick). Most of the treatments are directed at the painful component of the neuropathy. I don't know of anything besides time that helps the loss of sensation. We are conducting a study with the Mayo Clinic looking at a topical compound that may help with the painful neuropathy, we should have results in about 6 months so if that turns out to work I'll definitely give you a heads up. On another note, if you live in a cold environment and run outside in the winter, the cold will probably bother it a lot more. Oxaliplatin induced neuropathy seems to be more temperature sensitive than other types of neuropathy which I'm sure you already experienced during the treatments if you tried to drink anything with ice. Good luck, hopefully this will be a lot better a year from now!