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Dr. Burt's HSCT study results reported in JAMA

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    Dr. Burt's HSCT study results reported in JAMA

    Hi everyone: I thought those of you who are interested in HSCT for MS might be interested in the most recent publication relating to Dr. Burt's 10 year study on the topic. The results of his study were published in the Journal of the American Medical Association (JAMA) yesterday and a link to these results can be found in the NMSS's link below.

    Please note: the results are not those of the clinical trial that Dr. Burt is currently running and of which I am a participant. This randomized trial is still ongoing.

    http://www.nationalmssociety.org/Abo...f-Stem-Cell-Tr

    #2
    Thanks, Carole!

    I'm sure other people will have other take-aways, but this clearly gives me an opportunity to bang my drum about treating MS early! Like with many other treatments, early treatment is the key to improved outcomes. Unfortunately, early in the disease is also when people are in denial, or try unproven treatments to treat their MS. MS disease modifying therapies simply work best during the earlier inflammation stages of the disease. If you are a new patient, please have a honest conversation with your neurologist about your best treatment options. Directly from the link you posted:
    In evaluating which type of individuals benefited from the therapy, the authors suggested that people with relapsing-remitting MS who had had MS for ten years or less showed improvements in their disability scores after transplantation. People with secondary-progressive MS or disease duration greater than ten years did not show improvements on their disability scores.

    Neurologists need to do a much better job at educating their patients about the importance and advantages of early treatment. This is when inflammation can best be controlled, minimizing damage and prolonging, or preventing, the onset of SPMS. Due to the unpredictable nature of the disease, there will always be people that could drink household cleanser, or eat 50 almonds and have no disease activity. The reality remains, on average there will be progression, and there will be disability. The best way to slow progression and fend off disability is by using a disease modifying therapy; the only scientifically proven therapy that can alter the course of the disease (especially early on).

    My soap box is starting to cave in under the weight, so I'll close here. I wish you all well ...

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      #3
      Thank you both for your vigilance on HSCT developments. Still nothing for PPMS, so I guess, here we are in 2015, me and ( and approx. 50,000 other PPMSer's) get a ton of 'hope'. It's like the joke 'what do I have in my pocket' ? God only knows ! It may be a million dollars or it may be nothing. With emphasis on NOTHING. Happy to hear from you both. Good luck

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        #4
        I know I post sounds snarky. But, in my defense, we who are dx'd with progressive forms have been relegated to the 'back burner'. And, generally, left to find our own way. MS is tough enough, already.
        Hey surprise, the 'higher powers ' have deemed that Dr. Burt's HSCT shows 'promise'. Wahoo!!
        Thanks for the official recognition. He's been at this for around 20 years.

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          #5
          Hi Jerry: I think it's absolutely shameful that more isn't being done to treat those with more progressive forms of MS. It really is. The meds out there don't help and, even with HSCT, progressive MSrs are on their own as they don't 'qualify' for treatment here for the ongoing clinical trials. It has been shown for several progressive patients to stop the progression of the disease but these are people who have had to spend their life savings traveling overseas to Russia or Germany or Israel to get it done. It's just crazy. I pray that in my life time we see more treatment aimed at those most affected by MS. You are in my thoughts and prayers Jerry.

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            #6
            Thanks for your courage and comments. Let's keep this 'secret' between us. The whole MS story (150years of it) is 'shameful' IMO. Why is it that there isn't an accounting of those successful HSCT patients from the earliest to the most I recent ? I don't expect to read names but it would be nice to read gender, age, MS type and other things of that sort. Oh well, How does it feel to want ?

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              #7
              Jerry - I believe Dr. Burt has learned "enough" to quickly rule out patients that are suboptimal candidates. Then they continue to filter the candidates until only optimal candidates remain. It is my opinion that the results are so skewed towards patients with minimal disease activity they are not actually valid. This doesn't mean stem cell doesn't work, but the patients do not represent a realistic cross-section of MS patients.

              I am thrilled the research is being done and believe stem-cell can be a valuable tool in the future, but not yet, not now. I am glad some people are benefiting from the therapy, but after 10 years there appears to be no major breakthrough. A 1 point shift in people with very low EDSS scores means virtually nothing. You can get a 1 point shift just by seeing a different neurologist. Now if you are taking a patient from a 9.0 to an 8.0, or a 7.5 to a 6.5 that is something to take note of. Let me cherry pick candidates and I can probably prove Alpo dog food is superior to placebo. If not Alpo, than an anti-inflammatory diet would probably do the trick.


              Why are you still looking for a large number of MS patients that have benefited from stem cell? Hmmm ...

              Comment


                #8
                Marco,
                I keep reading about Dr. Burt's stem cell clinical trials and they are usually filled with around 25 participants. So, I want to know about these participants. Yes, I too believe that 'cherry picking' the participants leads to a high degree of success. That seems to be 'par' for the course in the MS game. If you can't win outright, simply cheat.

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                  #9
                  Hi Jerry/Marco

                  I understand your frustration with Dr. Burt's study and his demographic realizing fully that I fell into that demographic and, therefore, was eligible for transplant. And, while I understand this, I think to dismiss outright the benefits of this study purely based on what you may see as skewed towards the minimally disabled is not the way to go. Unfortunately, for any treatment to move forward with the FDA, those engaging in clinical trials have to show good outcomes. This, I like to think, is Dr. Burt's end goal: to provide more treatment options for those of us living with MS and to move further study, hopefully for an expanded MS population, forward.

                  Additionally, this study was much larger than 25 people (151 total) and did include some SPMSrs, although the results were, a bit predictably, better for the RRMSrs.

                  Jerry, I pm'd you on FB with the whole report (not the abstract that is available on the web) which gives you the specifics you were seeking: gender/age/race/type of MS. If I knew how to post the whole report here, I would. Alternately, those interested can join the Facebook group dedicated to Dr. Burt's HSCT as the report, in full, is there.

                  The verdict is still out on HSCT and its long term benefits but, heck, if it'll buy me a couple of good years, I'll take it any day over drugs that don't work for me and a guaranteed more rapid decline.

                  Comment


                    #10
                    Thanks again, CaroleK. Your posts are loaded with information that is invaluable. That there were some SPMS patients in Dr. Burt's study is great. The number, gender, age and all of the other particulars, as well as the outcomes, would be nice to know. I guess I want to know information that could give me some hope as to when I may have a shot at a curative treatment.
                    And I don't dismiss any of the results from Dr. Burt's studies.
                    The fact that he has given more than 1 MSer a chance at normalcy again, is a LEAP forward in this fight. I hope that another 300,000 MSer's fit into Dr. Burt's demographic and his protocol becomes the standard in MS treatment. I wish you well in your recovery. Let's hope that all MSer's get the same chance, some day soon.

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                      #11
                      Carole,
                      It looks like I just regurgitated on the screen. I'm sorry, that was not my intent, but I wanted to express my thoughts. There's no need for you to respond - many of my questions have no answers, and these are still the ramblings of a man with too many holes in his head (and the MRIs to prove it).


                      I am not frustrated. I am enthusiastic about the potential of stem cell; but do not want to lose sight of reality. Every time a new therapy has "promise," some MSers lose their minds, followed by their wallets. Look at the people who traveled overseas to do CCSVI at their own expense. The "cure" had been found. You have people getting stung by bees. Others have been misguided into following "fad" diets.
                      Someone spent $70k to get Lemtrada a few months early.
                      Now, people want to believe that stem cell is the MS panacea. Again, well-intentioned, misguided, and desperate MS patients will find a "stem cell" clinic to take their money in exchange for what? A procedure with almost no chance of improvement, or even a fake procedure (scam).


                      I am concerned when the term "cure" is loosely bandied about by medical professionals (not accusing Dr. Burt of anything).
                      Does the therapy:
                      • stop the disease?
                      • prevent the disease?
                      • repair prior damage done by the disease?
                      • do a combination of things?

                      At minimum, it appears that HSCT can put select patients in a LONG period of remission. Do they reach NEDA? Do they still have the underlying disease? Have all symptoms gone away? Does this prevent brain atrophy? Where is the EDSS cutoff for benefit? I do like statistics, but these are the type of questions that I want answered.


                      I am a proponent of any therapy that can help MS patients. I greatly benefited from a Baclofen pump, but only a percentage of our community can do so. If HSCT can help 1% of our patients I am all for it. I just don't want to see another 9% get injured in the process. I hope that makes sense. We need to know where HSCT fits in the realm of therapies. What patient group can benefit? What patient group would be wasting their time, energy, hope and money.

                      I've been here for years, and seen the cycle of patients from the fear of the unknown, to the fear of the known and everyone in between. For now, I will take a hopeful "wait and see" approach and hope others will do the same. I am thankful for the work Dr. Burt is doing, but even more so for the volunteers that risk their well-being for the rest of our community. You are a pioneer and we owe you a debt of gratitude. I pray HSCT is a good answer for many in our community, but ....

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                        #12
                        Wow, Marco, you have posted my sentiments exactly. Thanks for expressing your POV because, even though I am verbose, I couldn't have stated my feelings better than you have done, here. Carole, as always, I wish you well . Good luck, all.

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                          #13
                          I hear you both, Jerry and Marco. Please note, I have never personally used the word 'cure' and refuse to do so for the very reasons you articulate, Marco. I do not know what the long term future holds with HSCT and am, really, just hoping for the best. Even a short term respite from progression is enough for me as nothing else was working. I do have to say from personal experience that it - all of it - really wasn't that bad to go through. My fear of the unknown - going through chemo mostly - was much worse than the reality of it all, and I have no regrets having done it. You are right: time will tell. One can only have hope.

                          The reason I post here and will continue to do so is because, whatever anyone's personal feelings about HSCT or any therapy are, we all need to be our own advocates and we need to be fully informed about ALL of our options, not just pharmaceutical options. It frustrates me to no end that the subject of HSCT was never broached by my neurologist after I failed two drugs and was showing aggressive disease activity. In fact, when I would mention diet or any other alternative treatment of any kind to help manage my disease, my neurologist would routinely roll her eyes at me. This is just not right.

                          I wish you both the best and I really hope more advances are made in effectively treating, and someday curing, all types of MS.

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                            #14
                            CaroleK,
                            Your comments, here on this site, are so very valuable to all of us and to future MSers. There is much to know about Dr. Burt and HSCT. For that matter, that goes for Prof. Slavin, Dr. Federenko, etc. and other clinicians, worldwide. I have discovered all that I know from the few people, like you, who have opened up online. I think it is complete 'bull' that there isn't complete data regarding HSCT available to our MS community. Too much of this is a well kept 'secret' .
                            I am happy for your apparent success and wish more of the same for you.

                            Comment


                              #15
                              Carole and Jerry - let me join in on the love fest. I am so glad that you both (and many others) are active MSWorld members. I learn from you, stand in awe of you, hope and pray for all of you. Again, thank you for your participation at MSWorld and know that I wish you well.

                              Comment

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