Neuropothy pain getting worse! Does it get better?

[Alice]

I finished chemo 8/27/05 4 A/C 3 carbo/ taxol/ herceptin. I have been experiencing leg pain ever since starting the taxol.My onc up until now thought it was from the taxol as it is a common side effect.In the past 2 to 3 weeks it has gotten increasingly worse to the point of beeing unbearable and waking me up nightly. When I was at the point of getting only 2 to 4 hours sleep a night and the pain continuing to worsen with the max amount of vicodin I insisted there must be something else that could help.
My onc put me on a nerve med nurontin. It seems to be helping. This would indicate my neuropothy is getting worse.Has anyone had neuropothy worsen so long after ending chemo?I am wondering if I should go to a nurologist or just try to wait it out.Does anyone know how long it takes to get better if at all?
Any info or suggestions are appreciated.(sorry about the spelling)
Thanks a bunch, Alice

[Sandy H]

Alice, I am sorry to hear you are having so much pain. I have lots of burning in my legs and feet especially at night. Have not had to take any meds for it. I was taking glutamine powder and B-6 (only take 25 mgs more can cause neuropathy) while on chemo. Everyone is different but I suspect it is from the Taxol and Carboplatin. It depends on how much nerve damage you received. If the nerves have been killed then that would answer why you are having so much pain. I know my oncologist is very concern when I am on that combo of chemo saying that for some people neuropathy is real bad. He told me once that he could literally kill my hands and feet to the point that I could not walk or feed myself. I have seen patients in oncology who could not even hold their fingers up their spouses had to feed them!! They had no feeling in their hands their fingers just hung down. Really scared me to see that after what my oncologist told me. You can see a neurologist and see what he says. There are tests they can do to determine how much nerve damage you may have if any. Wishing you well. hugs, Sandy

http://www.jonsiegel.com/neuropathyregimen.html

This link has a good overview of what one Boston hospital recommends for its multiple myeloma patients with neuropathy--some of this might be helpful to you (I hope)!

Jeff

[Alice]

Sandy and Jeff,

Thank you for your responses. I will print out the regimen and consult with my onc. I do think a trip to a neurologist is a good idea.

Keep the faith, Alice

[Lolly]

Alice, one last suggestion: Have you had scans to rule out recurrence? Scary thought, I know, but a necessary one given the territory we navigate. Hope this is a redundant suggestion

<3 Lolly