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Kristy Cruise on 60 minutes

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    Kristy Cruise on 60 minutes

    She is a FB friend of mine and I spoke with her the whole time she was going through the treatment. I was so excited when the 60 minutes interview came out. http://sixtyminutes.ninemsn.com.au/v...=3316782556001
    Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

    #2
    very inspiring and hopeful

    I've been following her story on the HSCT Facebook page. It's extremely encouraging. Will meet with Dr. Burt in April and, while I'm scared, I do hope I qualify. The results with HSCT are more promising than anything else out there.

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      #3
      The CBS crew went to Russia for this story. Why are we, in America, being deprived of this treatment? If a patient isn't in a 'clinical trial', the patient can't have stem cell treatment in America. I am glad that Kristy was able to get the treatment and it seems to have turned out well.

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        #4
        We are able to have it in America, but you need to pay. Waiting to hear from Chicago on my appt time, but I was told I was on Dr. Burts list by Kim the clinic nurse. They just received my current MRI. I dragged my feet on this for a year but now I am ready. I am starting to feel tired and a bit of residual symptoms from my last relapse. it's time!!! Bonus is I can wear all kind of cute wigs afterwards and have a different hair color each day.
        Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

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          #5
          Originally posted by JerryD View Post
          The CBS crew went to Russia for this story. Why are we, in America, being deprived of this treatment? If a patient isn't in a 'clinical trial', the patient can't have stem cell treatment in America. I am glad that Kristy was able to get the treatment and it seems to have turned out well.

          If you ever saw the Dallas buyers club, this isn't much different. It's a crime how the chronically ill are treated.
          Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

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            #6
            When you first posted about your communications with Dr. Burt, I thought you were invited to participate in a 'clinical trial'. I didn't know that SCT could be performed in the US on a 'pay out of pocket' for service basis.

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              #7
              HSCT and insurance

              Jerry: the good, or at least promising, news is that many insurance companies will now cover HSCT for the first time ever (albeit only if it is part of a clinical trial). Our plan just added this as a covered benefit specifically for clinical trials for autoimmune conditions including MS in 2014, but this is a start. I'm hoping some of the media attention in Australia will spill over here and also that the insurance companies will start getting wise to the cost effectiveness of HSCT (a one time treatment) versus paying for patients' MS drugs to the tune of $50k/year or more for decades. I don't know if you're on Facebook, but there are two great groups on FB dedicated to HSCT, one which is specifically for Dr. Burt's group (actual transplantees and those interested).

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                #8
                Isn't the point of a clinical trial to show the efficacy and all possible risk factors?

                Obviously I'm only speaking for myself, but I'd rather it be all fleshed out with studies and reports from my own country (and approved by Health Canada) before I embark on such a risky procedure.

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                  #9
                  Originally posted by JerryD View Post
                  When you first posted about your communications with Dr. Burt, I thought you were invited to participate in a 'clinical trial'. I didn't know that SCT could be performed in the US on a 'pay out of pocket' for service basis.

                  I was invited, I chickened out. Now my left side is starting to get weak, something I NEVER had in 20 years. Time to act before anything gets worse.

                  You can pay out of pocket, it's about 250,000 which I would do if I have to.
                  Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

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                    #10
                    Thanks for the info, CaroleK. As it is, stem cell replacement is cutting edge medicine. I am interested in the development of any treatments for progressive MS, since I am dx'd PPMS.
                    Dr. Burt's clinic told me that they don't perform stem cell treatments on PPMS or SPMS patients. They haven't found it to be effective. It remains to be seen what happens in the trials at the Tisch Center in NYC. I can only hope for positive outcomes.

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                      #11
                      Thanks so much for sharing this story. I watched it twice, and it brought tears to my eyes. Unfortunately, I wouldn't qualify, but I am thrilled this is available for those who do!

                      My neurologist encouraged me to take Tysabri even though I hadn't "failed" two other drugs. I always felt this is the most ridiculous requirement I have ever heard of; fail on drugs that aren't as effective, and then once you've continued to progress and you've had MS for another few years, they'll "let" you take it. Give me a break!

                      For me, QOL is very important (hence my choice of Tysabri), but I am completely in awe of those willing to take the stem cell risk. With two young children, Kristy was willing to risk her life to have this treatment. I sincerely hope she continues to do as well as she is doing now.

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                        #12
                        Kristy Cruise looks fabulous. I'm so happy for her and her family.

                        katje, best of luck to you. Keep us posted on your progress through the 'process'.

                        I was surprised to see someone who's daily routine resembles my own, particularly the clip of Kristy 'napping' on the couch.

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                          #13
                          JerryD -

                          I'm PPMS too. Did they tell you anything regarding where an individual is in terms of progression being a deciding factor or was it just a flat out no PPMS patients period?

                          Thanks.

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                            #14
                            Zuzus11z,
                            The response from Dr. Burt's clinician was that they do not 'include' progressive forms of MS in their clinical trials. I didn't question them about the possibility of getting their stem cell replacement treatment. I was told that, in the past, Dr. Burt had done the stem cell treatment on PPMS and SPMS patients and found no positive results. Sorry
                            But on a positive note, the Tisch Center in NYC is doing a stem cell replacement trial that is only using PPMS and SPMS patients. It started last month. We should begin to hear some results in the near future. One can only hope. Good luck

                            Comment


                              #15
                              Tisch Center is not using chemo I don't believe but I could be wrong. I wish they didn't have to use chemo with RRMS.
                              Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

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