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    Success with SCT?

    Has anyone on this board had any success with stem cell replacement ? I would like to hear from anyone who had a successful stem cell replacement treatment. Dr. Burt at Northwestern Univ. has been performing this procedure for around 10 years. Who were the recipients ? I can't seem to track anyone down. One would suspect that SCT patients would want to tell their story. What goes ?

    #2
    Dr Burt does HSCT not SCT. SCT is done at other facilities. I just got offered to have HSCT here in Denver at the cancer center. It's approx 150k - 200k. Going in to talk to some doctors on Thursday.

    As for finding others who had this done, I know of over 20 who are fine now except for one man who had a more aggressive form of MS and he is the same. They are healthy now and probably don't come to the MS boards anymore, I know I wouldn't.
    Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

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      #3
      Thanks for responding, Katje. I was beginning to feel like a leper. It is very difficult to learn about stem cell therapies if those who went through it don't explain their experiences and share their knowledge. Again, thanks.

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        #4
        Jerry go to ms - uk dot org and then search for diaries. You will be able to find a number of people that have shared their stories.

        I agree that is nice to hear from someone that has undertaken the journey.

        Katje, best wishes for your journey. It sounds to me that you are a good candidate, you are young and still have a lower EDSS score. Hope your meeting goes well on Thursday. We will be thinking of you. Keep us posted.

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          #5
          Facebook pages for HSCT

          Hi Jerry: I've been following the experiences of many people who've gone through HSCT (both with Dr. Burt in Chicago and elsewhere) through two really great Facebook pages. The first is called Hematopioetic Stem Cell Transplant - MS & Autoimmune Diseases and the other is a page set up for patients of Dr. Burt. It is called Dr. Richard K Burt Stem Cell Study (HSCT)-Chicago. There are 1800 members in the first group and over 700 in the second group.

          Not everyone has gone through the transplant (and not all are MS patients) but there is a wealth of information in both for those interested.

          I have an appointment with Dr. Burt in April to see if I am eligible for his study. I have aggressive RRMS and, while I'm scared stiff, I think it the results have been promising for many of us with MS.

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            #6
            How long before you think they will be recruiting? It looks like they don't use Chemo.

            http://clinicaltrials.gov/ct2/show/N...ocn=USA&rank=9
            Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

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              #7
              I was in the Cleveland Clinic Trial

              Katie, I was patient #17 in that stem cell trial you reference in your reply above. We only had 24 patients in the study and the last one finished recently, so no formal papers have been published on the results yet.

              My experience was a good one. I got my vision back as my optic nerves had been pretty damaged from 6 ON episodes. I do attribute that to the stem cells. Did I get cured? No, unfortunately. Would I be worse now if I didn't get the stem cells? I don't know. I do think that if I was able to get more infusions that I might see more improvements. I would do it all over again if I could.
              Optic Neuritis: 12/2009 leading to MS Dx: 01/2010
              Copaxone, Avonex, Gilenya, presently on Tysabri
              CCSVI x2, LDN, Autologous MSC trial

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                #8
                annawisept, thanks for posting about your experience with the Cleveland Clinics trial. I am glad to hear that you have achieved some positive results. I have been posting and replying to Katje for some time through this site. I believe that she is going to Northwestern to receive Dr. Burt's stem cell therapy. I hope that she has positive results. Good luck

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