As we are all in the same gang (PPMS) I thought Id ask people what they would do in my position? I was dx 3/11 and am already a full time wheelie. My Neuro, alarmed at the speed of progression, has twice before offered me the above. This was something they used to use years ago. It is a type of chemotherapy, administered once a month by IV and the course is for 2 years if indeed my body can tolerate it for that long. Comes with usual health warnings, loss of hair, blood in urine, collapsing bladder wall, sickness/nausea and the possibility of starting off cancer. Chances of success are 1 in 5 which to me are crap odds and one of the reasons I declined previously. This time the Neuro and 2 registrars were more pushy, (in the nicest possible way!) They basically said there was nothing they could do to stop or slow up progression and the 1 in 5 odds were good compared to any other chance I have (none). The point of the chemo is to completely wipe out my immune system, (which as you know creates other problems), therefore no immune system no attacks on CNS or myelin. (As I understand it.)
I really don’t think Im strong enough to cope with all this as I already suffer from constant chest infections and keep thinking no immune system means trouble!
Plus Im already in a wheelchair, how much worse can I get? To me personally losing the use of my legs and my independence is hell. This treatment isn’t a cure as we all know, if it works it may slow progression.
So friends, please God you never have to make this decision, but if you did would you go for it or decline? Thanks,