First Steps: Confessions of an HSCT Survivor
Confessions? Survivor? Oh puh-leeze. So melodramatic, Dave. I know, right? But when I was preparing to get an autologous hematopoietic stem cell transplant (
HSCT) in 2010 for my aggressive multiple sclerosis, I really could have used an insider’s look as to what I was getting myself into. I was part of the
HALT-MS clinical trial sponsored in part by the National Institutes of Health, and I’ll say straight away that it saved my life. But it was so new that I had few resources and experiences to lean on. Here are just a few
lessons learned, and some personal confessions, after going through a stem cell transplant– complete with high-dose chemotherapy and a lengthy hospital stay– for my ornery MS. Part one of this series is about the first steps to consider before undergoing HSCT.
Researching HSCT is, well, complicated
Before you pursue this path of treatment for your multiple sclerosis, a little
research is in order. Okay, a lot of research. Today you can find fan sites galore with all sorts of advice on HSCT. And like most fan sites, they are predictably rah-rah with little balance for the “maybe-don’t-do-that” side. The
information can be helpful, but take it with a grain of NaCl, as people don’t tend to boast about failed treatments. I recommend reviewing past research (I’ve posted all HSCT abstracts from the past 15 years on the
forum at ActiveMSers) and sticking to reputable, unbiased websites. One last thing: HSCT is not “stem cell therapy,” which typically does not use chemo or involve a hospital stay and has little research to back up its effectiveness.
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