HSCT: WHAT IS HSCT?

WHAT IS HSCT? – A COMPREHENSIVE DESCRIPTION

With HSCT currently gaining a lot of attention in the main stream media for its huge success in giving people with MS new hope and the epic possibility of totally halting disease progression, more and more people are asking: what is hsct? HSCT stops MS!  HSCT or Hematopioetic Stem Cell Transplant,  is the only existing scientifically proven treatment, currently available that completely halts disease progression of Multiple Sclerosis. It is not a new procedure as such, as it has been used to treat cancer since the 1960’s, but it is a relatively new treatment for MS. Perhaps ‘new’ is the wrong word – The first HSCT performed specifically for an autoimmune disease (uveitis) was performed in 1985 by Prof. Shimon Slavin in Israel. The patient remains cured today. The first HSCT performed specifically for MS was at George Papanicolaou General Hospital, Thessaloniki, Greece in 1995. However, there were many observational case studies before then focusing on the success of HSCT for MS patients that were transplanted for cancer who simultaneously had their MS  halted,  as an unanticipated side effect of the treatment. All of the early studies that followed, also clearly established the now (well understood) probability  that transplantation earlier in the disease life cycle is more beneficial than transplanting later in the disease evolution, when there is a greater degree of irreversible disability. Dr Burt at North Western University, Chicago, started HSCT treatment back in 1996. Prior to that, while he was a Fellow working at Johns Hopkins Hospital in Baltimore,  he noticed that the leukemia patients he was treating  needed to be “re-vaccinated” because the protection from childhood diseases like the measles and mumps was being lost. The cells affected by  transfusion treatments were losing the “memory” of these original childhood vaccinations.
“Maybe,” thought Dr. Burt, “if we could get bad, diseased cells to lose their memory, we could reprogram them with ‘good’ memories and help patients with autoimmune diseases.” This reprogramming would depend on adult stem cells—tiny building blocks found in the body–if it was going to work.
He first tried out his idea on animals in the research lab and—it worked!  Not long afterwards the FDA gave its approval for the adult stem cell therapy to be used on people suffering from Multiple Sclerosis, and again, it worked.  Now, 14 years later, Burt and his team of researchers at Northwestern University are using this technique to help treat patients suffering from some 23 different diseases. There is no ethical dilemma as the treatment uses adult stem cells extracted from the patients own blood, and no embryonic stem cells are involved.

Because the procedure involves the use of chemotherapy the treatment is not the most comfortable and is unfortunately quite expensive. That said many who have completed the procedure successfully attest to the fact that it is not unbearable by any means, and the chemotherapy part of the procedure is a short targeted dose that lasts for days as opposed to cancer treatments which can drag out over a much longer period. Indeed it is very different from the chemo used for cancer patients altogether. One should bear in mind that when cancer patients undergo chemotherapy they are more than likely very sick going in to the procedure and therefore would experience a greater degree of discomfort than someone relatively fit except for MS. Please refer to the blog links page to read first hand accounts of how individuals who have been treated already dealt with the procedure and how it has affected them. Please see: http://www.hsctstopsms.com/how-hsct-works/.
What cannot be denied however is that to date HSCT is the only scientifically proven treatment that STOPS underlying disease progression  in all types of MS and restores normal immune self-tolerance and produces lasting curative symptomatic improvement for the majority of MS patients. To date over 2,000 patients have been treated world wide, and the number continues to rise daily. It is important to mention here, that where you can go for treatment and whether you qualify,  is determined by a variety of different criteria. We aim to help clarify your options and help you to decide the best place to apply for your own treatment.
While this treatment is standard procedure for treating cancer patients (thousands of patients are treated annually), it is not standard treatment for people suffering from Multiple Sclerosis. There are a very small number of facilities Worldwide currently performing this procedure for MS. The type of MS that you have also plays a part in treatment; see – http://www.hsctstopsms.com/types-of-ms/. The hope is that more will open in the early future as the demand increasingly continues to outweigh the supply, and that the cost of being treated will reduce accordingly, as the protocol efficiency is optimized. (Please refer to the menu item entitled “Choosing a facility” to learn more).
Many who have already had HSCT say that one of the best parts of being treated is that halting the underlying disease progression of MS gives them back a future. George Goss, who had HSCT in  2009, an inspirational pioneer in promoting HSCT after he underwent the procedure in Heidelberg five years ago, describes this as “pure gold”.  (Please see his blog:  http://themscure.blogspot.co.uk/  and check out his HSCT forum on Facebook: Hematopioetic Stem Cell Transplant – MS & Autoimmune Diseases, where he has provided invaluable information and support for those seeking HSCT). Living with MS is both frightening and uncertain. Little is known about what sparks rapid disease progression with no warning. One can go 10 years with little or no symptoms and then suddenly find oneself in a wheelchair in the space of a few months. It has been described as a “Tiger that cannot be tamed”. HSCT removes this “Sword of Damocles” hanging over one’s heads and gives one  the gift of hope and the luxury of planning a future with loved ones. Unless you live with MS you can have no concept of how magic this prospect can be! (Please see “What it is like living with MS” in the menu.)

10 comments

  1. My friend’s brother has HSCT for MS. His EDSS is 7, his family tried to contact UK and Russia but they rejected his case, is it any possible for him to get a better treatment?

    1. Hi there. I am not entirely sure of your question? The UK would be unlikely to consider him for treatment anyway with an EDSS of 7. I need more information, such as whether he is RRMS or SPMS or what type he has, how long he has had it etc. If Russia turned him down due to his EDSS
      then the only other option would be Mexico. You can find the information for contacting them on the HSCT Facilities page. Good luck.

  2. I am very interested. I’ve clicked the links but the right sides are cut off so I can’t read all the info about choosing a clinic or types of MS. Any additional information would be helpful. Is it possible to make an appointment with Dr Burke? Thank you, Nora Nicholson 860-437-1710

    1. I think the right sides are cut off because it is being viewed on an i pad or phone. It is all fine on a lap-top. I need to look into why this is happening and possibly get a plug in to correct it. However I am unsure about Dr. Burt’s requirements. Please go to face book and join this group “Chicago HSCT Stem Cell Transplant Study – Official Patient Run – Dr. Burt” Here you will be able to get information and advice on his protocol and treatment parameters . Good luck Nora.

  3. Can someone contact Mr with info regarding the Stem cells. I want to get it performed. I have MS for 13 yrs and am 35 yrs old. Thanks
    Angie

    1. Hi Angie,

      If go to “HSCT Awareness” on Facebook you will find many people who have been treated and who are waiting for treatment dates. There is a wealth of knowledge, information and advice available. Good luck.

  4. Ik wil HSCT gaan doen in India.Ze zijn pas deze maand opgestart.
    Hun protocol zou hetzelfde zijn,als in Chicago
    Maar,zij werven eerst stamcellen en dan chemo.Andere protocollen eerst chemo en dan werven stamcellen.
    Is dit oke ? Kunnen ze dan geen slechte B- en T- cellen werven,die niet gezuiverd zijn of doen ze dit buiten het lichaam ??
    Baart me toch een beetje zorgen.

    1. Hi Ellen,

      I know you from the HSCT forums. I understand your concern. They sat that they use methlyprednisalone before harvesting the stem cells. They do not freeze them. They are given back after the ATG has finished. The ATG has a half life of 72 hours so will still be active in the body when the stem cells are returned.
      The ATG will then eliminate any rogue T cells that are left. This is what they claim, although until we see how people do on the protocol in India we do not know for sure. It sounds realistic, but we will just have to wait and see.

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