Stem Cell Transplants, Moscow, and Borscht…life with Lisa in Russia.

Stem Cell Transplants

There is currently only one scientifically-demonstrated & confirmed treatment for Multiple Sclerosis with enduring curative efficacy:Hematopoietic Stem Cell Transplantation (HSCT). This is not a new medical procedure; it has been performed millions of times all around the world since the 1960’s for treatment of cancer (now approximately 50,000 times per year) and has been used successfully to cure several types of hematologically-rooted autoimmune disorders since the early 1990’s (such as MS, scleroderma, rheumatoid arthritis, lupus, CIDP and others). It involves chemotherapy so the treatment is both uncomfortable and expensive (most medical insurance will not yet cover it for treatment of an autoimmune disorder until the phase III clinical trial is completed).

It is not an impossible procedure to endure, as many people do it and make it through just fine. But this procedure is currently the ONLY treatment that has been scientifically verified to stop the underlying MS disease process, restore normal immune self-tolerance and produce lasting curative symptomatic improvement for the majority of MS patients, as it has for me and others. And definitely worth mentioning. . . . probably one of the biggest intangible benefits to stopping the MS disease progression is that this treatment restores a degree of certainty to the future of a person’s life that MS often robs us of.

How & why does HSCT cure multiple sclerosis?

As a curative treatment HSCT works by partially or completely erasing the body’s immune system memory. This effects a beneficial change of the body’s overall B- and T-lymphocyte epitope (antigen binding)repertoire, inactivating autoimmunity (making the body’s immune cells “antigen naive”) which results in restoration of immune self tolerance. This is often referred to as “resetting” the immune system which stops the underlying MS disease activity & progression. Once achieved, the body then has a chance to repair (or compensate for) existing neural damage that is not undermined by further MS disease progression, often resulting in substantial and lasting symptomatic improvement.

The interesting fact here is that it is the chemotherapy which is effecting the curative aspect of the treatment by wiping out long-lived T- and B-lymphocytes of the body that carry the faulty autoreactive memory so they may be replaced by naive, unprogrammed and self-tolerant non-autoreactive lymphocytes generated by the bone marrow. The takeaway concept here is no chemotherapy = no cure. This is why simply injecting stem cells into the body does not render the body’s immune system self-tolerant as is required to stop the underlying MS disease activity.

STEPS:

Mobilization

For approximately four days (twice a day), I will be given injections to stimulate my stem cell growth.  The process of causing greater numbers of stem cells to be present in the blood stream in order for collection, is known as mobilization.   The most common side effect of  the mobilization process is mild-to-moderate bone pain or fever, which can often be controlled with Tylenol.

Apheresis (Collection of Stem Cells)

Apheresis is normally a painless procedure, however, back and hip pain have been reported.  The collection of stem cells takes approximately two to four hours for the procedure.  My blood will be withdrawn through a catheter and circulated through a cell-separating machine.  This machine separates and collects white blood cells, including the stem cells, along with a few red blood cells and platelets.  The remaining blood cells will be returned to my body.  There is only a small amount (several cups) of your blood in the separator machine at any one time.  Your blood is returned to you at the same rate it is removed.   After the cells are collected, they are frozen and stored under special conditions until they are needed for my transplant.

Chemotherapy

Approximately four days of chemotherapy will be utilized to wipe out my existing immune system.  Bloodwork will determine when the immune system has been sufficiently “shut down” in preparation for the stem cell transplant.  At this point, the status of my isolation will be raised and only doctors and nurses will be permitted to enter my room.

Stem Cell Transplant

After the high-dose chemotherapy is completed, my own stem cells will be given back to me.  There are few side effects to this procedure.  It is very much like a blood transfusion. You may notice some chilling, nausea, fever, cough, flushing, headache, abdominal cramps or diarrhea.  The nurses will give me medication to decrease these effects.

Although a stem cell transplant sounds dramatic, the actual procedure is simple. The stored frozen cells will be thawed in warm water, and infused back into my body.

Engraftment

One to three weeks following my transplant, signs that my stem cells/new immune sytem are growing (engrafting) and beginning to produce blood cells are expected.  This “new” immune system will have no memory of MS.  As this starts to occur, I may notice aching in my bones, especially my pelvis, lower back and thighs.  As my blood counts begin to rise, my white blood cells will start to fight and prevent infections.  Soon after this occurs, I will be released from the hospital.

Recovery

It takes an average of 12-18 months to see the complete benefits of this treatment, however, some patients have continued to see improvement for up to five years post-transplant.  In addition to halting the progression and activity of their MS, 80% of HSCT patients see a reversal of 45-80% of their pre-existing symptoms.

 Special thanks to George Goss (http://themscure.blogspot.com/) and Brooke Slick (http://msslickdotcom.wordpress.com) for the above listed information.

7 Responses to “Stem Cell Transplants”

  1. sherry

    Lisa,I had to take viber off my phone. I’ve been having problems since I downloaded it. I miss you and love you so much. We are all praying for your complete recovery.

    Reply
  2. spiro

    Hi,
    What is the result with BMT and SPMS? Most patients in this phase are also looking to quiet the immune response. Thank you

    Reply
    • Lisa Stallings

      The stem cell transplant is just as effective on SPMS as it is on PPMS – which is roughly 70-75% chance of stopping the disease in it’s tracks, and in many, many cases reversing damage. That is a lot better than the 0% chance of doing nothing. I had an EDSS of 6.5, meaning using a walker. I now an cane and walker free! Life is awesome. I encourage oyu to check out the Facebook page where I became educated – all private members who have either had HSCT, or are in the process of applying at various locations. Search on Facebook for: Hematopioetic Stem Cell Transplant – MS & Autoimmune Diseases

      Reply
  3. Jade

    Jade- May 2014

    My mother has MS and she in 57 years old.
    She is currently in a wheelchair but still has the ability to stand and move her legs slightly to be transported. She does have PPMS.
    Will she still be considered for this treatment?
    She is due to have another MRI in the very near future but her last one didn’t show anymore lessons from the previous one which seems to be a good sign.

    Also I tried the email address for Dr. Fedorenko you provided in one of your posts and my email bounced back?

    Thanks
    Jade

    Reply
    • Lisa Stallings

      Keep trying! Dr. Fedorenko has been inundated with requests from Australia as their 60 Minutes and Today show did specials on the treatment. If she can work up to rising and walking a few steps on her own, he may accept her. The cut off is a 7.0 EDDS. My love to your mom, Lisa

      Reply
  4. kate

    what type of ms is this treatment suitable for? Relapsing remitting? whats the cost of treatment? How many people have been successfully treated

    Reply
    • Lisa Stallings

      HSCT responds best to Relapsing Remitting MS. The cost was $40,000 in Moscow, and $200,000 in the US where some insurance companies will cover the cost. Thousands have been treated abroad at many centers, and close to 600+ in the US. A small minority have failed in treatment, around 1%. I suggest you join the Facebook group Hematopoietic Stem Cell a transplant for MS and Autoimmune Diseases. A wealth of information!

      If you are in the US, research Dr. Burt at Chicago Northwestern for HSCT
      Lisa

      Reply

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