That was kind of what I was thinking George. Google fu was leading me to think direction already. Thanks again for all of the info. The new neuro I just saw says that I should pick a CRAB medicine and wait and see on hsct, due to the risks of later cancer, chemo side effects, and the fact that it is "not proven" yet. It is so much money that I am looking everywhere to see what options there are. I am looking really heavily into clinical trials, but they all seem to be closed in relation to hsct. There are a couple through the cleveland clinic that use these other types of stem cells, but I wasn't 100% sure of the difference, so I asked here.
Dr. Burt's HSCT phase III trial is open and they are currently recruiting patients. . . .
http://clinicaltrials.gov/ct2/show/NCT0 ... sis&rank=2
However I would like to add some additional comments regarding this. . .
1) Acceptance to this trial is exceedingly (extremely!) difficult because the inclusion/exclusion criteria is so absurdly narrow and will eliminate 99%+ of the people that would benefit from this treatment.
2) Even if someone were accepted to this (randomized) trial there is a 50% chance that the candidate would be assigned to the control arm of the study and not actually be able to have stem cell transplantation. In this case the patient would only have access to CRAB drugs that offer no hope of a cure. No need to be in a trial just for that. Your neurologist will be happy to prescribe them. That's pratically the only thing MS neurologists do anyway. Prescribe drugs. (You can probably detect my disaffected attitude about neurologists in general.)
3) For those fortunate few that are accepted to the study AND can receive actual HSCT treatment, I am unaware of any medical insurance companies in the US that will pay for the treatment. Therefore the patient ends up having to pay out of their own pocket, the cost being around $140,000. Another reason why I was very happy to get HSCT in Germany. It was less than half the cost. Plus I wasn't burdened with any additional follow-up study work that has nothing to do with getting healthier.
Just a couple other comments (sorry to bore you). . . .
- Your doctor is correct that there are some latent malignancies resulting from the treatment. However, because the treatment does not use ionizing radiation as part of the protocol, the danger & risk is substantially reduced with a mortality less than 1%. I wrote about this specific subject of latent cancers about half way down this page. . . .
http://themscure.blogspot.com/2010/02/l ... s-day.html
- Chemo side effects. . . . indeed HSCT is a serious procedure with uncomfortable and unpleasant side effects, not to be taken lightly. I felt rather ill for a week due to the chemo. But once past the procedure the patient recovers and it's all over and finished with, not having to repeat it again. For me, a more-than-equitable trade off for stopping (and reversing) my MS. Just anecdotal but so far all the other MS'ers I have communicated with that also had HSCT all say the same thing. No regrets from having the procedure.
- "Not proven?" Well, that depends upon who you ask and how to define what "proven" means. Certainly it's not yet FDA approved for MS. That will inevitably happen sometime around 2020 following completion of the phase III clinical trials currently in-progress (there are currently two in the US). HSCT itself is not an experimental procedure at all, having been completed on millions of people (for cancer) since the 1960's. So it's a very well understood procedure. And so far there have been nearly 600 people worldwide with MS that have had HSCT performed. So based on the population of phase II-and-later-treated-patients, it is a resounding successs with 100% of RRMS patients stopping their disease and 80% experiencing 'substantial' improvement of their existing symptoms. So its fine that the neurologist considers it experimental, but for me it is not since it cured me of the progression of MS. But maybe he just wants to maintain a steady paycheck by keeping you on CRAB drugs for the rest of your life? For me I'm glad to no longer take any drugs or medication for MS since my own HSCT procedure. My neurologist and the drug companies got the short end of the stick on that deal. He's a very nice fellow but I can't say that I'm unhappy with the situation.
Whatever you decide, more power (and good health) to you!