Hi guys, I was wondering if someone could answer my query regarding the death-rate of HSCT. Perhaps George, if you would be so kind!?
I have read that it's a little under 1% of people, so what accounts for this? Is that one percent comprised of those who were unusually weak when undertaking the procedure, too old or too young, had a negative allergic reaction to the treatment? Or is it just random? Could a relatively strong man just die as easily as someone who was much weaker? I guess I'm trying to understand that 1% and the "truth" behind the statistic.
Sorry for my tardy comments. Just a few. . . .
Although there were some early deaths during the long-ago HSCT phase I clinical trials in which they needlessly used risky total body irradiation (TBI), today's HSCT procedures do not use TBI, nor is it required to stop MS. So far (from phase II clinical trial work, onward) not a single MS patient has died as a result of HSCT treatment.
This is actually a better safety profile than what CCSVI and/or stem cell "infusion" therapy can offer (people have died as a direct result of these other ineffective procedures) So from a global-treatment perspective, HSCT for MS is stacking up as a pretty safe procedure (although admittedly it is rather uncomfortable to go through).
With that said I will add the most important issue in recieving HSCT. . . . the "facility" location turns out to be more important than the "protocol" of the procedure as for the safety profile. HSCT could be a very dangerous procedure done at the wrong facility. So long as the (hospital) facility is experienced in administering the protocol and knows what they are doing, HSCT is not a wildly dangerous procedure. Asher is correct in his numbers that the death rate where we were treated (Heidelberg) with the myeloablative (BEAM) protocol is around 1%, or less. But this also includes many elderly and sick people with serious comorbidity issues (mainly cancer). So if a person with MS is otherwise healthy (even if disabled), the risk is even less compared to the whole treatment population. Probably a big metric relative to this topic is how many patients does the specific facility treat? Heidelberg, for example, does several hundred HSCT procedures every year. So they know what they're doing. I would be more concerned with a facility that performs only a few transplantations a year where the staff isn't as experienced.
For the non-myeloablative HSCT protocols (such as with Prof. Slavin in Israel and Dr. Burt in Chicago), the mortality risk is even less (probably less than half of the myeloablative protocol). But again, these are very good & experienced facilities.
It's interesting that there are a lot of people (and even most neurologists) that say HSCT for MS is a "last resort" option. The people saying this are ignorant of the facts and clinical data. Especially neurologists because they have no education, training, background or treatment experience in stem cell transplantation. For me, the last doctor to ask about HSCT for MS is a neurologist. And in fact, exactly the "opposite" is true. HSCT works better when performed ealier in the MS disease course, not later when it gets so bad that it responds less favorably to the treatment. I created an interpolated graph from the clinical trial data that clearly shows the benefit to performing HSCT earlier, instead of later.
http://2.bp.blogspot.com/-PvejGH-NIG4/T ... al%2B2.jpg