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    #61
    Originally posted by batman12 View Post
    Hi George - I think you may have misunderstood.

    You say



    The study referenced concludes



    44% is a lot less than 100%

    i.e. there are people with MS that have had the same procedure as you and then after a number of years have started to progress again.
    Its necessary to look deeper into the data as opposed to just snippets of quotes that can be taken out of scientific context. The people that were treated ten years ago were part of the phase I clinical trials that cannot be compared to today's current phase II and (now) phase III clinical results. The program(s) ten years ago vs. today are apples and oranges. The differences being the following:

    1. All the patients (except for a single one) treated in the phase I clinical trials were advanced (non-ambulatory) progressive patients between EDSS 6.0 and 8.0. It is now known today that this subset of the MS population responds "least-favorably" to HSCT treatment. In fact, this is why all the phase II and phase III trials automatically exclude all progressive patients and only treat people that are episodic. The main lesson learned from the phase I trials is to treat people earlier in their disease cycle, as opposed to later. (Or in the case of progressive patients, the lower the EDSS score, the better.)

    2. The phase I clinical trial(s) of ten years ago all incorporated Total Body Irradiation (TBI) as part of the treatment protocol. Complications associated with TBI conditioning accounted for the deaths (and perhaps further stress-related neurologic deterioration) of the treated-patients in this early work. The evolved protocol today no longer uses TBI, having been determined to add substantial treatment risk with no added curative benefit. All the current HSCT treatments (for MS) have now omitted the unnessesarily risky TBI without sacrificing curative efficacy. (The cellular antigen epitope can be rendered naive without use of TBI. Gentler chemotheraputic agents alone can accomplish this.) In the phase II (and now phase III) trials, there have been zero deaths. None anywhere.

    3. The phase II trial (without TBI) started in 2003. So now we're into the 8th year following this evolved protocol and not a single patient has progressed (as measured by EDSS). Not a single one. Very strong indication that HSCT has long lasting curative results. Perhaps even lifelong. Time will give us the final answer on this.

    As part of my treatment I did not receive TBI, nor was is necessary for me to have received it. Also, as opposed to the phase I trial patients, I was 100% ambulatory and I was not PPMS. So this current HSCT treatment cannot be directly compared with the earlier treatment.

    So I still stand behind the original data comment. Essentially 100% of RRMS patients do have their underlying MS disease progression stopped. I have not seen any data to suggest otherwise.

    Comment


      #62
      Ok George

      If nothing else your enthusiasm interests me

      So where and how do I sign up?

      Comment


        #63
        Originally posted by batman12 View Post
        Ok George

        If nothing else your enthusiasm interests me

        So where and how do I sign up?
        Hi batman12,

        The good news about HSCT as a curative therapy for MS is that it is not controlled at any one specific organization so the treatment can be had at any number of hospital facilities around the world (I'm sure there must be several facilities willing to perform HSCT for MS). I can only comment regarding my own personal experience which was performed at Heidelberg University Hospital in Germany (the #1 cancer research and treatment center in Europe) of which I had a very good experience. Except for being treated there I have no direct (business or otherwise) involvement with the hospital. If interested in receiving HSCT treatment for MS there I'd suggest to contact the autologous stem cell transplantation unit coordinator. Her name is Dr. Ulrike Klein and her contact information can be found on the University Hospital website. (Just FYI. . . my treatment there cost approximately 55,000 Euros. Unfortunately not cheap.)

        As a side note I also understand that Prof. Shimon Slavin at The International Center for Cell Therapy & Cancer Immunotherapy (CTCI) in Tel Aviv, Israel will also perform the procedure for MS (and perhaps other autoimmune diseases like Scleroderma and Rheumatiod Arthritis, etc). However, I have no first-hand knowledge to comment on this facility but I hear it is an excellent treatment facility. (I communicated with another person that had the procedure there and they paid approximately $70,000.)

        There's also the MIST stem cell transplantation trial at Northwestern University in Chicago run by Dr. Richard Burt. They are currently recruiting patients for stem cell transplantation treatment for MS. But because it is a phase III clinical trial it is exceedingly (extremely!) difficult to be accepted for treatment (which is why I personally favor treatment outside of a clinical trial). Additionally, the MIST HSCT treatment is currently running close to a $150K cost that must be paid by the patient. Ouch!

        Other than these, I'm sure there must be others elsewhere in the world that I am not aware of. Further individual research would likely be beneficial here.

        Bestwishes for your good health!

        - George

        Comment


          #64
          Cost of Slavin's treatment

          George -
          The cost of stem cell therapy through Slavin (CTCI) in Tel Aviv was $28,000 in 2010 when I did it. Obviously, there was the cost of travel to Israel and then Athens, Greece, but my total cost was about $33,500 not $70,000 as you stated.

          Comment


            #65
            Originally posted by BJG55 View Post
            George -
            The cost of stem cell therapy through Slavin (CTCI) in Tel Aviv was $28,000 in 2010 when I did it. Obviously, there was the cost of travel to Israel and then Athens, Greece, but my total cost was about $33,500 not $70,000 as you stated.
            Thank you very much for correcting me. I should be more careful when relying on my faulty memory. Definitely Slavin's treatment is a substantially more resonable cost. And an excellent medical treatment facility, too.

            Comment


              #66
              BJG55,

              If I understand correctly, your treatment with Slavin did not include any chemo??? That would certainly account for some of the cost differential between your & George's procedures.

              Brad

              Comment


                #67
                I have been really looking into the HSCT treatment at length, and have spoken with George on several other venues, but I'm trying to ask all of the folks I can ask abouot why HSCT is NOT a good answer. From reading online and watching everything I can on Dr. burt on youtube, he says that this treatment can definitively halt the disease over 80% of the time at a mean time of 3yrs post treatment. He's been doing it over 20yrs in trials, andhas said time and time again that it does not work once the disease becomes progressive. I was very recently diagnosed as rr, but in the last 6months my disability is growing daily. Maybe I'm grasping at straws, but I want someone to tell me why this treatment could be a bad thing. Please tell me, so I can get this crazy notion out of my head and decide against it. Has anyone on this board other than George had the treatment done? I have heard his position on it tons of times and want to hear what others have to say. I am scared my spinal lesions are ruining my legs faster than I can even figure out a strategy, and need guidance from you long termers.

                Thanks for any advice,

                Shucks

                Comment


                  #68
                  Originally posted by bspotts1 View Post
                  BJG55,

                  If I understand correctly, your treatment with Slavin did not include any chemo??? That would certainly account for some of the cost differential between your & George's procedures.

                  Brad
                  Thanks for prodding my memory with your comments Brad. I think I now have this straight in my head. . . . Prof Shimon Slavin at CTCI in Israel offers many different types of therapies and treatment protocols for a wide variety of maladys. They provide both stem cell "infusions" (often with mesenchymal stem cells) without the use of chemotherapy, and also stem cell transplants that require the use of chemotheraputic agents. I don't want to comment specifically on BJG55's treatment because I don't know what he did. Although I could be wrong, it does make sense to me that the pricing he mentions is consistent with a treatment that does not include chemotherapy.

                  Using chemotherapy as part of the treatment is critical because it is (currently) the only way to change the body's B- and T-lymphocyte epitope (antigen binding) repretior necessary to stop the underlying progression of the MS disease process. No chemo therapy = no cure.

                  Although I have no first hand knowledge of CTCI (I have never been there), I did communicate with an individual from Europe that went there in 2006 and had a non-myeloablative stem cell transplant procedure performed by Slavin. The therapy he had used a cocktail of chemo agents that included Cyclophosphamide and Campath (and perhaps others) as lymphoablative therapy. To this day he reports that his disease progression is 100% halted and he has experienced approximately a 40% improvement of his EDSS (interesting similar improvement I have seen myself with the myeloablative HSCT I received). He paid exactly $72,000 for Slavin's HSCT protocol in Israel at that time, very similar to the price I paid for my own myeloablative HSCT procedure in Germany. The reason using chemotherapy is so much more expensive as compared to just injecting or infusing stem cells is because the patient needs to be hospitalized for several weeks and carefully monitored & treated for proper recovery and to reduce the chance of dangerous side effects (such as infection).

                  So I now revert to my original statement regarding treatment cost. It looks like Israel and Germany charge similar amounts for an HSCT procedure that includes chemotherapy to ablate & reset the immune system.

                  Comment


                    #69
                    Shucks,

                    Possible you may be both progressive (nerve degeneration as I define it) and having inflammatory attacks. In that case, if you conclude that HSCT works to reduce or eliminate the latter, then it would be worth considering. I am only progressive and yet to see a case where stem cell therapy has repaired nerve damage. Certainly stopping attacks can allow the myelin to restore and improve your condition, as would, of course reducing additional damage. In any case being relatively new to MS is an advantage.
                    Steve
                    sometimes you can't make it on your own

                    Comment


                      #70
                      Shucks,

                      I (we) are in the same boat with you...my wife is 62 and was dx 2 years ago as PPMS...have been following George's postings and reading all the science his blog references. We feel HSCT is realistically the only option out there that can actually stop the progression but are afraid to pull the trigger on it...it's a very serious and scary option as you know. BUT, we don't want to end up in a wheelchair and know that we might have been able to prevent it with this procedure. Stopping the progression is what the procedure is all about and with a little luck there will be some reversal of disability. I saw a video by Dr. Dusan Stefoski with RUSH Medical Center in Chicago...he is the neuro who works with Dr. Burt's patients in the MIST trial. In his video he states that it is not the procedure itself that cures anything...the procedure stops the progression and ...hopefully, allows the "natural healing powers" of the body to repair the nerve damage.

                      Wishing you all the best!

                      Brad

                      Comment


                        #71
                        I'm still perplexed as to how people afford to have this treatment done. It is 150k or so to get into a clinical trial, which are all closed according to the clinical trial website, and probaly 100k to have it done is isreal or germany. I dont think I would trust anywhere else to do it, as tel aviv and the hospital in Germany both seem to be well respected hospitals around the world. My further worry, with my luck lately is that I could turn out to be one of the 1% fatality rate.

                        How does a 30y/o prosecutor with tons of student loans, an old house, and a 50k a year job come up with 100k for an experimental treatment that might kill him or help him?

                        Comment


                          #72
                          Slavin

                          Brad and anyone else who cares... George is correct. My treatment from Slavin did not include chemo. Slavin's protocol was right for me. I really didn't want to do chemo after my experience with Novantrone. The treatment that I had done in Israel/Greece was just that; a treatment. I was on a serious downhill slide prior to having the stem cell infusion (lumbar and intravenously). I was in pain, could only stand for short periods of time, and had worsening bladder issues. Slavin's treatment without chemo seemed like the least harmful option. I was really tired of drugs and feeling like I was poisoning myself. Using only my stem cells seemed a more "healthful" option.

                          This procedure has stopped my progression. How long it will last, however, I have no idea. Slavin was very careful to say, and I signed forms to that effect, that the treatment was not a cure. At this time, I am pain free and can stand for over an hour, which is huge. I can cook dinner! I don't have to get up 3 times a night (and that was using a catheter and limiting liquids) and my spacticity has lessened. I also regained some leg strength, which my neuro verified.

                          Anyway, that was my thought process of why I decided to do the treatment without chemo. I was not quite at the point of willing to do what I consider a riskier procedure (chemo).

                          As for $, although we are not poor, I have to say that we could not spend $100,000+ for an experiment. I cashed in bonds that my mother left me when she died to pay for this treatment. If I need to do another treatment in a few years, we have the resources (assuming that the cost doesn't skyrocket) I had many friends and family help with the travel costs, for which I will be eternallu grateful.

                          Comment


                            #73
                            Originally posted by shucks View Post
                            I'm still perplexed as to how people afford to have this treatment done. It is 150k or so to get into a clinical trial, which are all closed according to the clinical trial website, and probaly 100k to have it done is isreal or germany. I dont think I would trust anywhere else to do it, as tel aviv and the hospital in Germany both seem to be well respected hospitals around the world. My further worry, with my luck lately is that I could turn out to be one of the 1% fatality rate.

                            How does a 30y/o prosecutor with tons of student loans, an old house, and a 50k a year job come up with 100k for an experimental treatment that might kill him or help him?
                            Shucks,

                            I am a young male with newly diagnosed MS. I am curious as to what therapies you have tried. I am looking into the HSCT as well. I studied in Germany and never thought that i would be going back to germany for possible stem cell treatment?

                            chad

                            Comment


                              #74
                              stem cell

                              I think stem cell treatment is definately the way forward.

                              Comment


                                #75
                                please read new thread I started. warning folks of stem cell therapy not being controlled well enough at this point in time. Will it EVER work? SOMEDAY, YES!
                                Live simply. Love generously. Care deeply. Speak kindly.

                                Comment

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