HSCT patients here?

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HSCT patients here?

Postby shucks » Fri Sep 16, 2011 10:50 am

I know I am always here with hthese types of questions/comments, but I think it would be helplful for folks around here who have had the treatment to post here as to whether they had the myeloblative or lympho ablative treatment and where it was done to help the folks who come here for research have more knowlege and input as to the treatment, where to get it, and maybe some personal experiences. I have gotten some great reccomendations from folks on other boards and they have been helpful in my journey to try to get this done through Dr. Burt's study. I am counting down the days until late december for my next chance to meet with them.
OT: I really wish stella the best in her fight and hope that her experience is the exception and not the rule.
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Re: HSCT patients here?

Postby HUD45 » Mon Sep 19, 2011 7:04 am

I guess i will be the first to dive in here shuks. I returned home from Tel Aviv 5 days ago. I received HSCT lymphoblative protocol from CTCI ( Dr. Slavin and staff). I have a very high opinion of my experience through the treatment and would do it again right now for a chance at stopping the progression of PPMS. Obviously it will be months from now mabye even years to say weather it was a succesful treatment for me but I am here to help others interested in Israel as an option. Good for you to try and organize some of these anecdotal individual stories. A big undertaking indeed....HUD45
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Re: HSCT patients here?

Postby georgegoss » Wed Sep 21, 2011 10:23 pm

Great idea, Shucks to start a running list of people doing HSCT for MS. I was also considering to start some form of MS-treated database. But I have also come to realize that there are a large percentage of people in the MS community that had HSCT and are also (understadably) very priviate people. So I think it unlikely that we can catch & record all people for posterity sake. Another good reason to have the findings of the clinical trials published (which is overwhelmingly positive).

Just FYI. . . . both the non-myeloablative (sometimes referred to as lymphoablative) and the myeloablative (which also ablates lymphocytes; the objective of the treatment) have so far shown substantially similar (statistically equal and both very good) clinical outcomes.

For me. . . I had the myeloablative treatment while I was SPMS. Now at 20 months post-transplantation I can definitively state without question that I continue to be 100% MS progression-free since my transplantation. And so far I have also experienced a 40% improvement (reduction) of my pre-transplantation EDSS score. I would bet that if I would have had the non-myeloablative procedure I likely would have had the same or similar result. Although they somewhat differ in administration, I have confidence in both protocols to be very effective in terms of clinical benefit.

As a side note. . . . I do keep an updated list of facilities that I am aware of around the world that will perform HSCT for MS'ers. The good news is that I will soon add another facility listing of (what appears to be an excellent) hospital facility in India that will perform HSCT for the extremely reasonable price of $40K (they just finished treating their first MS patient on top of other cancer patients receiving the same myeloablative HSCT protocol). I hope to post this info within the next several weeks so that this treatment option will quickly become available to others.

Treatment location info that I keep updated. . . .

http://themscure.blogspot.com/2011/06/g ... -have.html
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