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    #1

    SCT needs promotion

    I don't understand what is holding up the acceptance of stem cell replacement therapy. This is not a new therapy. It has been in hospital clinics for at least 10 years.
    I have identified several people, on-line, who have successfully undergone the treatment.
    George Goss had his treatmentr in Heidelberg, Germany. Carmel Turner had her treatment in Austrailia.
    There are others that have undergone HSCT in several different respectable medical clinics around the US and the world. I just don't understand what is holding up this treatment.
    What is the difference if the treatment fails or a DMD fails to stop progression? I am sick of waiting for a clear solution when, I know there is another alternative to drugs that holds some hope for us MSers.
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    #2
    Have you had the treatment? I ask because you mention another man's results but not your own.

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      #3
      I have not had the treatment. I have PPMS and that is always on the 'exclusion' list for the clinical trials run here in the U.S. I can't say anything about the 'cash' pay options in foreign countries. I have never received any correspondence from them. And I don't think I could afford it if I were to be admitted for treatment.
      I just posted about this procedure because I am looking for people to 'open up' in these threads. I know that I have discovered a few people who have benefited from HSCT. I hear about a Facebook group that has some conversations and is a closed group. I just want to know all that I can about the pluses and minuses of all of the MS treatment options available.

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        #4
        I don't know what the hold up is, but the trial in Chicago is almost done and it's phase III. However they can gives results for another 5 years. What I read it will be 2022 before it could be mainstream.

        I am getting weakness on my left side again. Dr. Burt was waiting for another attack, well it's here. My husband is gathering my paperwork this week.
        Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

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          #5
          Katje,
          God bless you on your journey. I can't say this any better. If Dr. Burt thinks you are be a 'good' candidate for HSCT, I trust his 'expert' opinion. Please post, here, as much as you can. Before, during and after.

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            #6
            Are you part of the HSCT group on FB?
            Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

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              #7
              No I am not in the HSCT Facebook group.

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                #8
                I want to know too. Is Dr. Burt only doing SCT in the clinical trial setting? Does he treat private pay patients. Whenever I ask my UCSD neuro, she throws up her hands and says we're years away from having it in the US and discourages from going outside US. I can't afford to wait..

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                  #9
                  Originally posted by LilyClair View Post
                  I want to know too. Is Dr. Burt only doing SCT in the clinical trial setting? Does he treat private pay patients. Whenever I ask my UCSD neuro, she throws up her hands and says we're years away from having it in the US and discourages from going outside US. I can't afford to wait..


                  yes he does treat outside the trial. I hear it's betweem 150,000 to 200,000.
                  Doesn't hut to see if to call and see if you qualify for the trial.
                  Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

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                    #10
                    Outside of the US Treatment

                    Not sure I understand why the doctors would make a blanket statement about going outside of the country. I think it depends on where you go. I mean the center in Germany is like one of the top hospitals in all of Europe and affiliated with the top medical school. The center is Isreal is a Stanford trained doctor who worked at the Hutchinson Cancer Center in Seattle - which is a top us Cancer Center. Even Bangalore is affiliated with the university of Minnesota Bone Marrow program and people have reported excellent treatment there.

                    I myself am probably going to Isreal in the spring. Dr. Slavin is a pioneer in the treatement and worked directly with Dr. Burt who is currently doing the Northwester Trial.

                    I think many US doctors are just ego-maniacs that think there are not good doctors outside of this country...but that is just not true.

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                      #11
                      I agree with most of what you say, jersey. My cousin, the brain surgeon, is one the 'ego maniacs', you speak of. Yet, he is also the inventor and designer of a 'laser knife' for eye surgery. It is part and parcel of inventing the most 'forward' and 'ground breaking' procedures in their respective fields. Unfortunately, these doctors are not known for being 'Miss Congeniality'. They, obviously, think of themselves as very 'godlike'. And many of their underlings treat them as such.
                      I would say that Heidelberg and Tel Aviv are the 'top' medical centers for HSCT in Europe and the Middle East. There are, probably, a few others in Russia, India and China. I wish that this subject was in the forefront but the pharmaceutical industry has little to no interest in this battle. HSCT, as you know, uses the patient's own stem cells as replacements and a short course of chemotherapy. Good luck

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