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DOES ANY ONE KNOW ANYTHING ABOUT;

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    DOES ANY ONE KNOW ANYTHING ABOUT;

    that Canadian stem cell trial that has completely stopped MS? there is a story floating around Facebook about this.
    hunterd/HuntOP/Dave
    volunteer
    MS World
    hunterd@msworld.org
    PPMS DX 2001

    "ADAPT AND OVERCOME" - MY COUSIN

    #2
    Theres an article on Gizmag.com that may help.

    Comment


      #3
      thank you!
      hunterd/HuntOP/Dave
      volunteer
      MS World
      hunterd@msworld.org
      PPMS DX 2001

      "ADAPT AND OVERCOME" - MY COUSIN

      Comment


        #4
        I read a study several months ago comparing the results of MS stem cell therapy at various centers.

        If I remember correctly the Canadian trial was by far the most 'successful', attributed to the combination of stem cell transplantation with Chemotherapy.

        Sorry but I can't find the report for the side by side comparison.

        Best if luck to you.

        Comment


          #5
          There are a couple of recent articles. I put one that points to the new scientist in my Profile under URLs.

          Here's the Lancet reference if you want that too:

          Journal reference: Lancet, DOI: 10.1016/s0140-6736(16)30169-6

          Hope that helps.

          Comment


            #6
            Fortunately, there's no need to rely on stories floating around Facebook. A good Google search brings up information about the Canadian study.

            While focusing on the good things in life is beneficial, focusing only on the good parts of medical studies can be very misleading and cause disillusionment later.

            In the Canadian study, the immune system wasn't just suppressed by chemotherapy before implantation of the stem cells, as is the practice in other stem cell procedures. It was totally wiped out, just as is done for a bone marrow transplant.

            The study was very small -- only 24 subjects. Of the 24, 1 person died as a result of toxic side effects of the chemotherapy. One in 24 is unacceptably high. People are terrified of getting PML -- which can be survivable -- from Tysabri when the odds of contraction are "only" 1:80. The results for the rest of the subjects are impressive, but an absolute death rate of 1:24 is too high for this method to go into regular use.

            Here's a link to the abstract/summary of the Lancet article: http://www.thelancet.com/journals/la...169-6/abstract.

            Here's a link to a well-balanced article from Multiple Sclerosis News Today: http://multiplesclerosisnewstoday.co...isks-are-high/.

            Comment


              #7
              I would be willing

              Let me start by saying, I am sorry if this post offends anyone, and isn't written while wearing my rose colored glasses. So please know that if you are a glass half full person, then you may want to skip this post.

              Regarding the research talked about in this thread, I am willing to take the risk. In either outcome, I wouldn't have MS anymore.

              I am not suicidal, not depressed. I am angry, tired, and running out of hope. I do PT and OT 3 days a week. I swim the days I don't have PT. I stretch every hour, every day. I take my meds, and follow my doctors advice. I do my research, I participate in my care. I eat right (most of the time). I try hard to keep my body moving.

              But every day, I wake up with the same disabilities and the same disease that continues daily to decimate my body, my mind, and my life. I believe in God and I believe in Heaven. How could dying be worse than existing in this nightmare?

              I have spent most of my adult life involved in medicine one way or another. I have worked at nursing homes, hospitals, and run on squad, etc. I have spent way too much time watching patients, family members, and several friends, suffer and struggle to maintain any dignity or quality of life. That's not the way to go.

              I have never asked 'why me'. But I do say every day, "Ok, I have MS. So now what?" I volunteer at church, at the local fire department as secretary, I build web pages for non-profit groups. I contribute, I make a difference. But not the way I want to and I can't get passed that.

              Maybe it's a flaw in my character, maybe I don't have 'the right stuff'. Maybe I am tired of 'hanging in there', maybe I just suck at having MS. I have always been a 'fixer', see a problem and fix it. But I can't fix this, so maybe it's ego. Who knows, and more importantly, who cares? It is what it is, and I'm tired of it.

              So for ME, yeah, it's worth the risk.
              Echo
              DX 2007 Started Ocrevus on 2/14/2018

              "Some where over the rainbow...."

              Comment


                #8
                I in 24 is completely unacceptable odds of course. In my own particular case I have developed CLL, or chronology lymphocytic leukaemia. Currently treated on a watch basis only. I believe CLL is not often treated with stem cell transplant, but is curative if works. Again the odds are too high when otherwise "well" from that point of view. If treatment for the CLL does become necessary, I will be looking into this study seriously!

                Comment


                  #9
                  I've always been interested in stem cell progress, too. What concerns me is ablating the immune system. We used to be able to rely on antibiotics to protect us but we are reaching a point where they may longer work.

                  As scary as climate change.

                  Comment


                    #10
                    Well said, Echo2099 ! I don't like the odds but I salute you and respect your reasoning! This misery that we face every day is a horrible existence ! Good luck

                    Comment


                      #11
                      Originally posted by Echo2099 View Post
                      Regarding the research talked about in this thread, I am willing to take the risk. In either outcome, I wouldn't have MS anymore.
                      That's not what happened with this study. And that's why I said earlier that looking at only part of the study can be misleading and disillusioning.

                      The 23 subjects of this study were NOT cured of MS, and all their disabilities went away. This is from the Multiple Sclerosis News Today article:
                      "The study’s main outcome — survival at three years without any signs of disease activity in the form of MS relapses, new brain lesions, and EDSS progression — was reached in 69.6% of the patients."

                      What that means is that the 1:24 chance of death is only to have a 70% of not relapsing and progressing for 3 years. That's far different than "not having MS anymore."

                      Only 8 subjects showed improvement after the initial outcome measure of 3 years. So that becomes a 1:24 chance of death for an 8:23 -- or about 35% -- chance of improvement. Again, far different than "not having MS anymore."

                      In addition, virtually all of the surviving subjects did experience some level of toxic side effects from the chemotherapy. We don't know from the article or the Lancet abstract how sick or debilitated they were, or for how long.

                      While about 1/3 of the remaining 23 were able to get off disability and return to work, we don't know what their residual symptoms are. But it's clear from the Multiple Sclerosis News Today article that none of the 23 subjects "didn't have MS anymore."

                      As with all things MS, it isn't known yet why some people respond better and some respond poorly to medical intervention. So the best that can be said from the evidence of this small study is that there is a 1:24 chance of dying for only a 70% chance of halted progression for only 3 years.

                      This method of stem cell transplantation is currently nowhere near a cure. Medical ethics currently doesn't allow for such a high chance of death for a disease that, by itself, has such a low short-term chance of death.

                      Comment


                        #12
                        HSCT-learn about it, do your own research

                        This trial was an HSCT variant, which is ablative chemotherapy followed by your own harvested stem cells used to reboot your immune system, which is naive. You must get re-vaccinated against diseases, similar to a young child. Initially, HSCT was done with radiation and chemotherapy. The odds of dying were higher (there is a TED talk you can find with someone who says her MS was stopped, but the radiation made her see double). Next, radiation was eliminated. Different trials use different cocktails. Dr. Richard Burt of Northwestern University has 150 trial participants with zero mortality approaching ten years. They are still recruiting for this trial which is Phase III. He will also give it compassionately for very aggressive disease, with anecdotal cessation of activity. This type of HSCT is non-myeloablative, meaning that they do not completely ablate the immune system. The Barts of London blog has an entry on HSCT, where they explain that the rebooted immune system will show an excess of antibodies to CMV and other childhood illnesses. The link gets axed every time I post it even though this blog only deals with MS and is run by professors, doctors, and professors. Since HSCT is considered experimental, some people receive it through medical tourism in Russia. Again anecdotally there was an Australian woman who was claimed to be in a wheelchair who had it who now goes running on the beach-the AU version of Dateline ran the story and you can find it on-line. (Of course, there were liberation surgery YouTube vids of people tap dancing and that "cure" has been debunked.)

                        Here are my thoughts: I would do it. There is a very small chance of malignancy, but I think that risk is one that I am assuming by long-term immunosuppression by standard DMDs. The most innocuous DMD, Copaxone, has been linked to small increases in breast cancer. But what meds like Lemtrada and HSCT offer is: 1. Hope. NEDA (no evidence of disease activity-70% in the Burt trial meaning totally halted progression ten years and counting) is a real possibility 2. No maintenance therapies. Not feeling guilty for costing my insurance $60,000 a year for life, not being reminded I am sick twice a day! swallowing this pill. 3. Quality of life. If those ten years see me with previous energy, it was worth a brutal couple of months and even a diminished life span if it comes to that (but you knew MS shortens you life by a decade, just as if you smoked all your life, right??).

                        One more thing-HSCT trials are usually mixed, meaning that they take secondary and primary patients and run the trial. They mix in the SICKEST people and publish the data. Then, we have the DMD trials run by the drug companies. They will target RRMS at the beginning of the illness, in other words the HEALTHIEST people with MS. This Canadian study used people with very aggressive disease activity. This makes me wonder, if I have "mild" MS what are my odds possibly like? 90%?


                        https://www.msconnection.org/Blog/Au...ion-An-Intervi

                        Comment


                          #13
                          Jreagan70

                          Jreagan70,

                          Thanks for your clarification. I can understand why the medical community would find these odds to be unacceptable. I am sure my neuro would try to have me committed if I told him I wanted to participate in that trial.
                          Echo
                          DX 2007 Started Ocrevus on 2/14/2018

                          "Some where over the rainbow...."

                          Comment


                            #14
                            Dyin-myelin

                            I have researched HSCT, and if I had the money and an HSCT would take me, I would do it too.

                            So

                            These days, a lot of medical news is filled with 'might be', 'possibly', 'promsing', 'maybe-sorta-kinda', 'it works but then it will kill ya' or 'it works, oh wait! No it doesn't work'. I think I just need to stop reading all of it.

                            But I can't.


                            Everyday I am at war with this disease, and every day I grow more weary of the battles. Why fight a fight that I can not win? Why keep hoping for help, when none is coming? Why keep trusting when there is nothing left to trust, not even my own body.


                            ::::sigh::::




                            I don't know.


                            Perhaps I am just too stubborn or too stupid to give up.
                            Echo
                            DX 2007 Started Ocrevus on 2/14/2018

                            "Some where over the rainbow...."

                            Comment


                              #15
                              JerryD

                              Originally posted by JerryD View Post
                              Well said, Echo2099 ! I don't like the odds but I salute you and respect your reasoning! This misery that we face every day is a horrible existence ! Good luck
                              Thanks and how you doing these days? Staying out of the hospital I hope!?
                              Echo
                              DX 2007 Started Ocrevus on 2/14/2018

                              "Some where over the rainbow...."

                              Comment

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