WHAT IS HSCT? – A COMPREHENSIVE DESCRIPTION

 

HSCT for MS has received a lot of attention in the media in the last few years. It has given people with Multiple Sclerosis new hope in halting their disease progression. HSCT is short for Hematopioetic Stem Cell Transplant. Currently it is the only existing, scientifically proven treatment that completely halts disease progression of Multiple Sclerosis.

 

Cost of HSCT TreatmentBACKGROUND HISTORY OF HSCT

 

Firstly it is worth noting that HSCT has been used to treat cancer since the 1960’s. Despite that it is relatively new as a treatment for Multiple Sclerosis. 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. There were earlier observational case studies focusing on the success of HSCT for MS. Patients transplanted for cancer simultaneously had their MS  halted.  This was an  unanticipated side effect of the treatment. Other early studies established the concept  that transplantation earlier in the disease life cycle is the most effective. It is more beneficial than transplanting later in the disease evolution when there is a greater degree of irreversible disability.

 

DR. BURT AND HSCT

 

Dr Burt at North Western University, Chicago, started working with HSCT treatment in 1996. Prior to that he was a Fellow working at Johns Hopkins Hospital in Baltimore.  While working here he noticed that the leukemia patients he was treating required “re-vaccinating after HSCT.  Immunity from earlier vaccination for childhood diseases like the measles and mumps was no longer working. The cells affected by  transfusion treatments were losing the “memory” of these original childhood vaccinations.Percentage of males versus females who contract MS

This realization inspired Dr. Burt. He pondered the feasibility of reprogramming cells.  When diseased  cells lose their memory perhaps it would be possible to re-program them with ‘good’ memories. He proposed using adult stem cell to facilitate his concept. This would be particularly beneficial for patients with autoimmune diseases.

He tried out his idea on animals in the research lab and—it worked! Soon afterwards the FDA gave its approval for adult stem cell therapy for people suffering from Multiple Sclerosis. Now, 23 years later Dr. Burt continues to hone the procedure. Along with his team of researchers at Northwestern University, he is using this technique to treat patients. They are working on 23 different diseases.  The treatment uses adult stem cells extracted from the patients own blood. There is no use of  Embryonic stem cells. This removes any ethical dilemma.

 

 

Current cash price for 1 months supply of MS medicationCHEMOTHERAPY IS AN IMPORTANT PART OF THE TREATMENT

 

Because the procedure involves the use of chemotherapy the treatment is not the most comfortable and is unfortunately quite expensive. However, many who have completed the procedure successfully, claim that it is not unbearable by any means. When administering chemotherapy during HSCT the doses are short and targeted. Therefore this period lasts for only a few days. When giving chemotherapy for cancer the treatment can last for weeks and sometimes months. This batters the body more and requires much longer recovery time.  One should bear in mind that  cancer patients undergoing chemotherapy are quite different. They are more than likely very sick going in to the procedure. Therefore more likely to  experience a greater degree of discomfort than someone relatively fit except for MS. Please see: http://www.hsctstopsms.com/how-hsct-works/.

Currently HSCT is the only scientifically proven treatment that STOPS underlying disease progression  in all types of MS. HSCT restores normal immune self-tolerance and produces lasting curative symptomatic improvement for most  MS patients. More than 5,000 patients have been treated for MS world wide. The number continues to rise daily. The criteria determining whether you qualify for treatment varies with each facility. We aim to clarify your options and help you to decide the best place to apply for your own treatment.

 

HSCT IS REGULARLY USED TO TREAT CANCER

 

HSCT is a standard procedure for treating cancer patients. Thousands of patients are treated annually. This is not the case for Multiple Sclerosis. There are a small number of facilities Worldwide currently performing this procedure for MS.  The success of HSCT helps spread the word. 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 up  as the demand increasingly continues to outweigh the supply. The law of economics surmises that as the number of facilities increases the cost of being treated will reduce accordingly.  The optimization of protocol efficiency will also help reduce costs. (Please refer to the menu item entitled “Choosing a facility” to learn more).

 

AFTER TREATMENT

 

Many patients that have had HSCT treatment have celebrated their reprieve.  One of the most acclaimed benefits  of treatment involves halting the underlying disease progression of MS. This gives back the gift of a future!  George Goss, an inspirational pioneer in promoting HSCT said as much. He  considered this to be the most exciting part of having HSCT in 2009.  After he underwent the procedure in Heidelberg five years ago he  described it  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. He has provided invaluable information and support for those seeking HSCT).

 

Ultimately, living with MS can be both frightening and uncertain. Rapid disease progression can take place quite suddenly. Ten years can elapse with few symptoms. Suddenly one can find oneself in a wheelchair in the space of a few months! Multiple Sclerosis has been described as a “Tiger that cannot be tamed”. HSCT removes this “Sword of Damocles” hanging over the heads of those with MS.  It can provide 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!

 

I highly recommend that if you are interested in HSCT and have found this page interesting that you follow up by looking at “Understanding how HSCT works” this will give a good rounded knowledge of the procedure.

22 Replies to “

  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. He may have been denied for several reasons, one being hid EDSS score. Please have him go to the site in Mexico. They will evaluate him (through a Skype conference and his medical records) and then decide. The actual current price for treatment is $54,500. They have treated more HSCT patients than anywhere else in the world. I know this because my daughter is going to have this done as soon as we can raise enough money. Hope his is helpful and your brother can get this treatment.

      1. My daughter is 18. Shes was diagnosed when she was 13. The treatment is not available in South Africa. She has been on Copaxone, Betaferon and currently on Tysabri (2 years) She is still getting regular relapses and new, active lesions every time.

        How will we go about the treatment if from South Africa?

        I have just joined the FB group.

        1. Hi Antoinette,
          You can travel to any facility that offers HSCT. The best thing to do would be to contact each facility and ask their advice. Have you considered the Coimbra High Dose vitamin D protocol? There is also a facebook group for that if you would like to look into it. Good luck.

        2. Antoinette,
          Hi my name is Tony Rooney from Melbourne, Australia. I’ve had MS for 17 years; diagnosed on the day of 9/11. I’ve been on Rebif & Copaxone in the past but with the Tysabri, I had my 147th Infusion only last week. I’ve never experienced ANY side affects with any of these Infusions; not one. 18 is way too young to be dealt with this, this is very, very sad. What I wanted to say, is that a friend of mine had the HSTC procedure done a few years ago, she was in a bad way, she’s now been MS free for 8 years which is unbelievable. This has worked & I see it short of finding a cure for MS, this path seems to haave worked for friend – but with me or your Daughter who knows.
          The best of luck for you & your Daughter.
          Tony

  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.

    1. Hi Sandy, I know that a lot of people advocate the use of cannabis oil. It is also a lot more readily available than it once was. If you have any links to help people check out the possibilities, please do post them so that we can all look into it. Thank you.

  5. My wife just celebrated her 1 yr stemmie bday a.few.weeks ago. 🙂 She had the HSCT procedure done by Dr. Burt of Northwestern in Chgo. It’s a life saver! Before the procedure, she was at wits end after trying out most of all the mainstream medicine treatments that failed her. She is a now a new person and her MS halted. Her recent MRI’s show proof of the successful results. Lesions on her brain that were once active, no longer active and some even shrunken. No new lesions. And just recently on her 1 yr MRI, lesions on her cervical spine on her neck DISAPPEARED after being there on previous MRI’s. Truely a miracle! If you or someone you know is suffering from MS, share with them the great news of HSCT, in particular the procedure done at Dr. Burt’s of NorthWestern in Chgo. You can view my wifes HSCT journey via our FB group (Team Karisko) I created for her. We want to pay it forward and spread the good news about HSCT and help other lives with MS. God Bless.

    1. Hi Mark, thanks for letting us know about the success of your wife. Just curiously how old was she when she received the treatment and was she RRMS? It is always lovely to hear positive up-beat stories about HSCT and its success halting MS. Congratulations to you both and thanks for sharing! 🙂

  6. On St Patrick’s Day fifty years ago, I woke up immobile from the neck down. Doctors diagnosed multiple sclerosis and told me recovery was impossible, to get my affairs in order, I didn’t have long. But I fussed and maneuvered until I fell on the floor where I dragged myself in a crawl until my body started to listen to me.
    Three months later I returned to work as a junior laboratory technician at the Ontario Veterinary College, Guelph Ontario. I spent my lunchtime in the library looking for research on healing, with researchers nearby to explain the significance of animal research in the scheme of human medicine.
    Soon I found an article with full colour electron microscope photographs proving that damage to the myelin covering of nerves in the spinal cord heals with movement (Bunge et al, 1961). It can be argued that untrained, I could not possibly understand; however, in my ignorance I read research literally.
    I learned about undifferentiated cells that float through the body, waiting for instructions to become cells required for repair and maintenance. The instructions arise from the effort to engage in customary activities! Today these cells are named stem, and research isn’t sure how they work!
    In an embryology text I read how during development, the white matter or myelin, in the motor part of the spinal cord, develops as the brain assumes control over basic reflexes, such as the fetus kicking. In other words, movement promotes formation of myelin!
    In the 21st Century we are excited by neuroplasticity and healing, but no one seems to know how this process can be initiated. As long as we believe that we cannot move, the body has no directions for healing. Where is evidence-based medicine when you need it?
    After waiting twenty years for the system to apply this research, I wrote about my experience of recovery in, Black Patent Shoes Dancing With MS © 1989. I continue to follow research and am amazed at the number of times others try to take credit for being first to prove myelin can repair itself.
    How much evidence do we need? Since I found Mary Bunge’s research in 1967, I didn’t worry about my future. I knew no matter what happened, I could always recover. I am now 73, and fully mobile, and I intend to dance til the day I die.

    Diagnosed in 1967 at age 22, Eva Marsh found evidence that recovery is possible and did not accept what the system had to offer.

    As a single parent she has raised her two children, completed degrees in Physics and Electrical Engineering, done Neuroscience research and worked in industry as a Computer Systems Analyst.

    Eva has spoken to many about her life experience and the research that enabled her to recover and live life as she chooses. She continues to follow research with a wary eye in her search for constructive information.

    Organizer 2005 1st Ever MS Recovery Roundtable
    McMaster University Alumni Gallery 2004
    Woman of the Year in Health and Fitness 2003

    REFERENCES
    Bunge Mary B, Bunge RP and Ris H (1961) Ultrastructural Study of Remyelination in an Experimental Lesion in Adult Cat Spinal Cord. J Biophys Biochem Cyto 10:67?94. J Cell Biol since 1962.

    Patten Bradley M (1958) Foundations of Embryology, McGraw-Hill Book Company Inc, New York London Toronto p351.

    Faber-Elman A, DL Hinschberg, M Marikovsky and M Schwartz (date?) Dept Neurobiol The Weizmann Institute of Science 76100 Rehovot Israel – Bidirectional crosstalk between injured nerves and invading inflammatory cells appears to play a role in regeneration. Migration of astrocytes across the site of injury is thought to be needed for regeneration of injured axons. In vivo this migration is correlated with the invasion of inflammatory cells into the injured nerve.

    Rasminsky M (1981) Hyperexcitability of Pathologically Myelinated Axons and Positive Symptoms in Multiple Sclerosis. Demyelinating Disease: Basic Electrophysiology, Edited by SG Waxman & JM Ritchie, Raven Press New York.

    Ledford Heidi (2015) Bioelectric signals spark brain growth. Nature 10 March, doi:10.1038/nature.2015.17087.

    1. Hi Eva,

      I have approved this comment as this site is here to help everyone with any information that may be useful in treating MS. I find this very interesting and I will read your book. It is not clear however from your comment how you treated yourself? Was it with any particular type of exercise or how did you go about it? I am sure others would be interested.Thanks for reaching out! 🙂

  7. Hello – is this treatment also good for stopping the progression of Ataxia? If it is applicable, what might such a treatment cost ? Thank you for your help.

    1. Hi Martha,

      Unfortunately I do not have an answer for you on this. I am not familiar with Ataxia. It might be worth going to the contact page and e mailing the facilities to ask them directly. I would begin with Russia and Mexico. Good luck and hope you find they can help.

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