marta
03-27-2012, 09:09 AM
This gave me an aha moment today and I'll share it with you see where it goes.
As I was riding up the ski lift today for my one of two rides on the mountain, I sat beside a friend who has lymphoma and is being treated with pretty much what I've been on, less the heavy steroids, and he said something to me that made me wonder if all the knowledge we take for granted as being true might have the odd hole or two.
He told me that he was scheduled to have 8 cyclophosphamide infusions and he noticed that after 6 he started loosing the feeling in his feet and hands. He mentioned it to his oncologist and was immediately taken off it because it can cause that in some people and in some cases it never goes away.
Then I thought about how many people I've met on this forum alone with some degree of distal neuropathy, but I honestly recall very few with that being one of the early symptoms - forgive me if I'm wrong. Then I thought that CTX/cytoxin/cyclophosphamide/etc.... has been the big gun for this disease since the early days and only resently has RTX become the other big gun (of two) to fight off an acute case after which you go on the maintenance drugs, and maybe all of the cases of distal neuropathy might be a drug side effect rather than disease damage. Don't know that this would make any difference either way, unless maybe switching from CTX at the earliest onset of neuropathy and seeing if the damage can be halted, but I think it might be something to bring up to the docs???? Who knows. I'm just throwing it out there.
As I was riding up the ski lift today for my one of two rides on the mountain, I sat beside a friend who has lymphoma and is being treated with pretty much what I've been on, less the heavy steroids, and he said something to me that made me wonder if all the knowledge we take for granted as being true might have the odd hole or two.
He told me that he was scheduled to have 8 cyclophosphamide infusions and he noticed that after 6 he started loosing the feeling in his feet and hands. He mentioned it to his oncologist and was immediately taken off it because it can cause that in some people and in some cases it never goes away.
Then I thought about how many people I've met on this forum alone with some degree of distal neuropathy, but I honestly recall very few with that being one of the early symptoms - forgive me if I'm wrong. Then I thought that CTX/cytoxin/cyclophosphamide/etc.... has been the big gun for this disease since the early days and only resently has RTX become the other big gun (of two) to fight off an acute case after which you go on the maintenance drugs, and maybe all of the cases of distal neuropathy might be a drug side effect rather than disease damage. Don't know that this would make any difference either way, unless maybe switching from CTX at the earliest onset of neuropathy and seeing if the damage can be halted, but I think it might be something to bring up to the docs???? Who knows. I'm just throwing it out there.