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Whyare people so uninterested in having SCT?

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    #31
    Katje, it is completely reasonable that you feel fear of this procedure. But, keep in mind that Dr. Burt's system is one of the most experienced in the world. I believe you are in real good hands. I am pulling for you. Now, if only Dr. Burt did the same for 'progressive' MSers Good luck

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      #32
      Originally posted by JerryD View Post
      Katje, it is completely reasonable that you feel fear of this procedure. But, keep in mind that Dr. Burt's system is one of the most experienced in the world. I believe you are in real good hands. I am pulling for you. Now, if only Dr. Burt did the same for 'progressive' MSers Good luck


      Wish I could talk him into it, then we could go together. We could shave our heads and everything.
      Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

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        #33
        There are so many areas to work on in MS… cause, prevention, halting progression, repairing damage, and more. Solutions may involve different meds and methods. SCT looks very promising for a certain subset.

        Thinkimjob asked, “And the other thing, if you have relapsing-remitting MS, how do they judge whether the treatment worked or you've got just into the usual remission part of the cycle, particularly if they want people who have not been diagnosed for too many years and who aren't too bad, all things considered?”

        Any trial wanting to succeed would improve their chances if relatively young and relatively healthy participants were chosen. With SCT those two factors seem especially important given the high mortality rates seen in the past. Perhaps, mortality rates are dropping because candidates selected better. But they could be dropping because methods are improving, too.

        Katje has the rare opportunity of having this procedure done in the US and at no cost since it would be part of a phase 3 trial, it appears. You have my support and best wishes, Katje. It could turn out to be a great decision. IMO, Russia would be a far riskier place based on a family member’s experience of being hospitalized there during a trip. Not nearly as hygienic as US hospitals.

        The Kristy Cruise video with 60 Minutes was very good. One question and answer…

        Reporter, “Kristy is convinced that this treatment will make her multiple sclerosis free, is that the case?”

        Russian doctor replied, “Kristy first early stage of MS so she has 80% probability it will halt MS.”

        The reporter also offered, “It is important to emphasize that this treatment does not work for everyone with MS. You need to be young, preferably under age 40 and in the early stages of the disease.” Whether the second sentence is correct is anybody’s guess. Maybe for the Russian procedure but not US?

        If Katje can provide a link to the trial perhaps we could all take a look at the qualifications for participation.

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          #34
          Seattle accepts people up to 70 years old.
          Chicago has a cut off the of 55 because of the trial. Not because of safety.

          I should say this. My Brother in law is a transplant surgeon at Beth Israel and a professor at Harvard med. Doctors do this for each other as a professional courtesy.
          Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

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            #35
            Originally posted by Katje View Post
            Seattle accepts people up to 70 years old.
            Chicago has a cut off the of 55 because of the trial. Not because of safety.

            I should say this. My Brother in law is a transplant surgeon at Beth Israel and a professor at Harvard med. Doctors do this for each other as a professional courtesy.

            Oops sorry, that didn't make much sense. My 2 girls kept interrupting me.

            Chicago has 55 as the cut off age, has nothing to do with the effectiveness of the treatment. For the treatment you need to be RRMS with active lesions. They don't care how long you had the disease.

            Seattle accepts people up to 70 and I think only really aggressive MS and some SPMS.
            Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

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              #36
              Copaxone works well for me, if my MS were more aggressive and if I had a lot of money I might be interested, but with the wide variety of treatments that work, there really isn't much of a need for it that I can see.
              Take care, Wiz
              RRMS Restarted Copaxone 12/09

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                #37
                Great that Copaxone is working well for you! Do you supplement with Vit D, follow a special diet, or take LDN as some others on Copaxone do?

                Katje, you said Chicago has a cut off the of age 55 because of the trial. Since it is a trial there should be a link to its listing on clinical trials.gov, however I cannot find a link for a Phase 3 HSCT MS trial in Chicago. Can you, or someone furnish that link? Also, what facility in Seattle is doing the treatment? Thanks so much for your help.

                I know the decision to get HSCT has been a battle for you, Katje. Have courage, you can do this and we all support you in whatever choice you make. Please keep us informed as things progress, it is fantastically interesting.

                Thinkimjob, as an Aussie, what did you make of Michael Pender’s success treating Gary Allen? Some great research going on down under. http://msqld.org.au/homepage/latest-...r-breakthrough

                A reminder about Job... In the end his health was magnificently restored. This is my hope for you, thinkimjob, and it is the goal of all my amateur efforts researching. I cannot urge strongly enough, especially those SPMS & PPMS having limited treatment options, to investigate LDN. Thousands of MSers are on it and a few have jaw-dropping testimonies about effectiveness. It is non-toxic and inexpensive.

                And for heaven’s sake get daily sunshine or take Vit D3, or both. Checking Vit D level can easily be added to any blood profile.

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                  #38
                  I can't find the study that's in Chicago which is odd because I saw it online 2 weeks ago and it said recruiting. I did find the link for Seattle. http://clinicaltrials.gov/ct2/show/NCT00288626

                  Someone said if you call they will accept people up to 70.
                  Fred Hutchinson Cancer Research Center will do it if you pay out of pocket but they do the myeloblative and Dr. Burt does the Non-myeloblative. The risks and mortality rate are higher with the myeloblative.
                  Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

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                    #39
                    Interesting article

                    This is based on a Swedish study, but it also mentions Dr. Burt's trial: http://www.msdiscovery.org/news/new_...rrms-mechanism

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                      #40
                      Thanks Katje. The link mentions that the study is ongoing but not recruiting patients. The 3 sites are Seattle, Houston, and Columbus, Oh. It mentions the age of eligibility as 18-60 but I don’t doubt the possibility of someone older being accepted.

                      CaroleK, the link you provided has a bunch of good information. They briefly mentioned Dr.Burt’s phase 1&2 trials but nothing about phase 3. I understood Burt’s current one was a phase 3 study but could be wrong. Just surprised I can’t find a trial link anywhere, yet.

                      Makes me wonder if the study in Chicago study was terminated for some reason; remembering a similar study terminated in Australia. Let’s hope Burt goes forward. It seems like there would be plenty of prospective participants.

                      The linked article about stem cell transplant was very interesting and helpful. Thank you, Carole.

                      Comment


                        #41
                        Originally posted by Myoak View Post
                        Since it is a trial there should be a link to its listing on clinical trials.gov, however I cannot find a link for a Phase 3 HSCT MS trial in Chicago. Can you, or someone furnish that link?
                        This one?

                        http://clinicaltrials.gov/ct2/show/NCT00273364

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                          #42
                          In general, I agree with Marco's views. But also:
                          I am too old for any of the trials.
                          My EDSS is 6.5 and I am on the point of moving (or being regraded) to SPMS.
                          As with some other unverified treatments - why should I take a chance and lose the few years I have left?

                          The decision to try such a treatment is never a simple one, and it can mean trading Quality of Life against the chance of a better QoL, with a worse QoL as a possibility. The answer will depend on a lot of factors: age, bank balance, have the children left home, is the house paid for, and so on.

                          Get into it this deep and everyone will have a different take. If anyone has thought through all the factors, and then goes ahead, then they deserve all our best wishes.

                          G.

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                            #43
                            How I see it. If you don't have your health, you have nothing. My kids want me to be healthy, they don't want to see me go downhill and I don't want them telling stories when they are older about their mother who had MS.

                            Right now I walk 6 miles a day walking my kids back and forth to school. each way is a mile and I walk that 3 times a day. They need me to do this for many years. They love having me take them out shopping, lunches, mani pedi's etc.. I have friends who like going out. Whats 2 months out of my life??

                            As for cost it costs nothing except the hotel or apartment for 2 months and food. Time away form home is not an issue, my husband already told his work and they said he can work from Chicago. He said he would quit if he had to so I could have this done.

                            I do not want to get worse. I am already starting to feel fatigue and other symptoms. They come and go. But I get up at 5am and go to bed at 12. I am non stop, I dont have time to have MS.

                            I dont see how age is a factor for anyone. My friend is in her 60's and having it done, she had MS over 30 years, still RRMS but has difficulty walking and she said she could live with that but her MS is active again. I just don't understand why anyone would choose to live with this if they didnt have to. Money is no object when if comes to your health. I don't see how a worse qol would happen. Hasn't happened to anyone else, it's all been good.
                            Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

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                              #44
                              Originally posted by Katje View Post
                              I don't see how a worse qol would happen. Hasn't happened to anyone else, it's all been good.
                              Are you saying no one has had adverse reactions to HSCT?
                              If it's all been "good" and it hasn't happened to anyone else why would you be afraid?
                              Have you lost your objectivity about this procedure?

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                                #45
                                Thank you Misslux for providing the link.

                                And thanks to Katje who provokes so much thinking on the stem cell issue. The trial does say that results have not been posted. Maybe nothing detrimental has happened, but we can be certain only after results are published.

                                Often there early signals including anecdotal reports such as patients speaking up about good personal results, and that’s great. But negatives may not see the light of day until trial results are published. Nor is it unusual after trials and FDA approval and a treatment is given to a wider-ranging patient population than those selected for the trial, additional problems show up.

                                Katje is on the right track believing the positives significantly outweigh the negatives, IMO. But each individual is unique and will rate positives and negatives on a personal scale. Everyone makes personal choices suited to their own life. Most will agree that treatment options are terribly difficult in MS.

                                Many of us would love to follow your progress through this procedure, Katje. Your logic makes a great deal of sense to me. I’m pulling for you. You can do this, I believe in you and I believe you will succeed. Be strong and of good courage!

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