This Is MS Multiple Sclerosis Community: Knowledge & Support

[bromley]

Like many I want to halt this curse until some better treatments come along. I share the views of this guy who posted on the BCP site:


HSCT

This procedure is very efficious on early RRMS patients, when inflammation dominates. As the spectrum shifts from inflammatory in nature to progressive, it becomes less effective. It is not at all effective for primary progressive MS. Data suggest inflammation is held in check for at least 5-6 years, about as long as the procedure has been performed in meaningful numbers of people. I underwent HSCT at Northwestern Memorial (Chicago) in Dec 2003 under Dr Richard Burt, a widely respected immunotherapist and arguably the best at performing HSCT in the world, based on number of patients successfully treated, no procedure related mortalities, # of peer reviewed articles, etc. Consistent with these recent observations mentioned here, Northwestern requires that you show active inflammation and an EDSS of less than 6 to be considered for this procedure. I was diagnosed with MS in 2001, and started Avonex immediately but still kept having relapses, primarily optic neuritis but also a lot of pain and mild weakness in my legs. I did not accept the status quo and my philosophy on treating any disease is to hit it early and hard. I was also in the Antegren trials, (but later found out I was a placebo). I researched HSCT extensively during this time and contacted Northwestern in July 2003. My insurance would not pay due to the experimental nature, so I withdrew from my 401K to come up with $75,000 they wanted up front for the procedure. My research at the time led me to believe (and I still do) that RRMS is inflammation-driven initially, and stopping the inflammation early in the disease course (I was a 1.5 - 2.0 EDSS) would halt progression for at least as long as the inflammation remission held - convinced enough I was willing to bet $75,000 on this. There are several protocols, some more potent than others, some involving whole body radiation, rabbit AGT, and other very potent and toxic immuno-ablating agents. Dr Burt and his staff believe that immune cell counts can be reduced by several logs, but not only is complete immune system eradication impossible, it is not required. The immune system can be effectively rebooted with less drastic measures. As such, his protocol is less toxic with fewer side affects, involving a combination of cyclophosphomide and Campath over a 5-6 day period, with no radiation (this is important as there is a ceiling on how much radiation one can get in his lifetime and I wanted to hold that in reserve for some future potential cancer treatment need that might arise). Further, they do attempt to “purge” the t-cells from the harvested stem cells as this add tremendous cost and has resulted in side affects. Instead, the Campath is used to eliminate the “bad actors” upon stem cell re-infusion. I went to Chicago in November 2003, underwent a lot of testing, then underwent the actual procedure in Dec (day 0-the day they infuse your stem cells was Dec 22). I spent Christmas, birthday, and New Years in isolation waiting for my cell count to rise. 11 days after the infusion, I checked out and went home. I can honestly say the worst thing about the hospital experience was the terrible food and boredom. (Upon checking out of the hospital my #1 priority was to order a deep dish pizza Chicago is famous for). I stayed home for 2 weeks, went back to work part time after the 3rd week and full time after 4 weeks. I took my kids skiing 3 weeks after checking out of the hospital and starting working out at the gym after 4 weeks. Side affects included some fatigue initially, a few colds, but nothing more. I was on several antibiotics for the first year following the procedure. It has been 2 years now, and 4 MRI's later, still no changes in the MRI from baseline and new new lesions. No exacerbations, no drugs, and some minor improvements in EDSS (I didn't have far to go so my improvements were not dramatic). So, I went from 4-5 attacks/year on Avonex to 0 attacks in 2 years with no drugs. Another patient, a retired law enforcement officer who was wheelchair bound I met while in the hospital; he was there on his 6 month follow up. His improvement was very dramatic. He went from a wheelchair to walking unassisted with a mild limp. His picture is featured in a recent National Geographic issue on stem cells, on a page near the front with the editors letter, standing defiantly in a field with his abandoned wheel chair in the background. Was it worth it? Absolutely. Not a cure, but if it delays my progression by a few years until better treatments come along, then I will declare success. I believe it has done this. If anyone wants to find out more, I can provide contacts at Northwestern to call and or e-mail.