About HSCT

HEMATOPOIETIC STEM CELL TRANSPLANT (HSCT) for MULTIPLE SCLEROSIS

This treatment is designed to reset your immune system and halt the progression and activity of multiple sclerosis.

My own stem cells will be collected and frozen before high-dose chemotherapy is given, and then returned to my body intravenously, after the high-dose chemotherapy, to replace the stem cells/immune system that were destroyed.

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  My blood will be withdrawn through a catheter and circulated through a cell-separating machine.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.

Thank You

I would like to thank a fellow MS’er, Brooke Slick, for allowing me to borrow this section.  Thank you Brooke! 🙂

15 Comments (+add yours?)

  1. Jim Hanson
    May 01, 2014 @ 20:39:32

    If this treatment works, why is it not in the public domain as being effective and worth the publicity? Are there published studies as to the effectiveness of it? My 38 year old son has primary progressive MS. He is an attractive former semi-pro athlete, has an MBA, is a recordable musician, is a sweet guy, and is going down fast. I need all the information that I can get on any and all chemo/stem cell projects that I can get him into.

    Reply

    • Jim Hanson
      May 01, 2014 @ 20:40:26

      My email is hansonj@hansonmed.com

      Reply

    • kickinms
      May 02, 2014 @ 08:50:23

      Hello Jim, I’m so sorry to hear your son has PPMS, it’s a horrible disease. I know hearing that diagnosis on May 4, 2012, was a moment I will never forget. It’s wonderful that he has such a caring father that is trying to help him, I know the doctors will just say there is not treatment or cure for PPMS. Which is true, partly, there is no FDA approved treatment or cure for MS in the United States. Hematopoietic Stem Cell Transplants are being done in clinical trials at Northwestern University by Dr. Richard Burt. Dr. Burt was trained by Dr. Slavin, from Israel, the man that discovered HSCT could help stop the progression of MS, and many other autoimmune diseases. There are many published studies of it’s effectiveness, if you go to this FB forum, ask to join and the go to the files section, many of the studies have been gathered and attached there. https://www.facebook.com/groups/149103351840242/
      Also, if you go to YouTube and put in Dr. Burt HSCT, you will find many of his lectures are available to view. One thing to note, Dr. Burt does not feel that HSCT is as effective on Progressive MS patients, but that is not the view that Dr. Slavin has or Dr. Fedorenko, the doctor that treated me in Moscow. They feel that this can be successful on Progressive MS, if done early on after diagnosis and the disease has not progressed to far. Thankfully they believe this and gave me a chance, because it has worked in my case and stopped my progression. Your son’s neuro will not tell you of the treatment because it’s not FDA approved, and the treatment is performed by Hematologist, not Neuros, so it’s out of there scope of expertise. You may want to watch the video I have on my blog from Kristy Cruise’s interview by 60 Min. Australia, a doctor there was also interviewed and had performed HSCT there. I hope all of this helps, but please don’t hesitate to contact me if you need further information. You truly have to be your own advocate when it comes to your health, the doctor does not always know best. Keep fighting!!

      Reply

  2. Jim Hanson
    May 03, 2014 @ 21:34:12

    Thank you so much. Several years ago Dr.Burt and I were writing each other back and forth emails and he was considering taking my son on as a patienr. However as time progressed he turned things over to his nursing sraff ,and they were sticking to the protocols of only relapsing-remitting MS patients being accepted. They did tell me that they were considering opening the program up to progressive patients some time in the future. I have lost touch with them since then. How shoud I proceed next if I would like to attempt to get my son an application and into one of the overseas programs that you and others have been mentioning?

    Reply

    • kickinms
      May 04, 2014 @ 09:42:52

      As far as I know the only places that will treat PPMS are Moscow and Israel. India has treated PPMS, but I haven’t seen them take anyone recently, I was turned down. They required 2 failed DMD, with PPMS the US doesn’t have any drugs to try, so I’d not had any DMD to fail.
      Moscow: The A.A. Maximov Department of Hematology and Cellular Therapy, Dr. Denis Fedorenko email: info@gemclinic.ru
      Israel: International Center for Cell Therapy & Cancer Immunotherapy (CTCI) Tel Aviv, Israel, Professor Shimon Slavin email: info@ctcicenter.com
      I would send an email explaining your son’s condition, treatment history, current EDSS, MRI’s and recent medical evaluation/test results.
      I know Dr. Fedorenko is booked until Aug. 2015, but could have slots open up is there is a cancelation.
      Hope this helps.
      Vicki

      Reply

  3. monica marolf
    Sep 13, 2014 @ 19:35:38

    I have ms & lupus & siezurres

    Reply

  4. Andrea
    Jan 10, 2015 @ 10:28:46

    I have been searching your blog for the cost of this procedure and additional expenses. I can’t find this information. Please let me know how much it will cost.o

    Reply

    • kickinms
      Jan 11, 2015 @ 10:37:36

      Moscow is $40,000 USD, that covers all medical expenses, including pre-testing which is done as soon as you arrive.($1000 as soon as you get there).

      Reply

  5. Karen McGreer
    Jun 10, 2015 @ 23:40:58

    WE ARE VERY INTERESTED FOR GREG MCREER. TRAVEL IS HARD NOW, BUT WE WOULD DO IT.

    Reply

  6. David Velez
    Sep 18, 2015 @ 10:04:40

    hi I got HSCT in Chicago this year , I see small changes but nothing out of the ordinary I hope this works fully for me. do you have any advice for me ? I have 2nddary MS I was diagnosed 2003 I was 13

    Reply

    • kickinms
      Sep 18, 2015 @ 16:18:18

      Hi David, For HSCT to be considered successful it just hast to stop further progression, any improvements are a bonus. How long ago did you have HSCT? It does take time for improvements to show up, mine have been just tiny improvements, that over 2 years have added up and seem like big improvements. Like walking. I started out after HSCT just able to make it to the end of my driveway, then would and a couple of yards at a time. I’d stay at the same distance until it became easy. Also, remember having HSCT will set you back, and then you have to build up to where you were pre-HSCT, and add to that. So don’t get frustrated, you do have to work at it and don’t expect anything to happen quickly.
      Have you started PT? If not, and you are at least 1 month post HSCT, get moving!! I did PT for a couple of months, then went to the gym on my own, and after 1 year added going to work out with a trainer. (NOTE: before PPMS I’d been working out on my own for many years, so if you’re not used to that get a trainer right off the bat to show you what to do). Good Luck!!! Keep fighting.

      Reply

  7. tsatsiadis giorgos
    Sep 20, 2016 @ 22:38:00

    Dear Vicki
    I am contacting you from greece..From thessaloniki to be accurate..My brother has MS for around 12 years…I have not seen such a progression to any any other MS patient..I have seen that you metioned too..He cannot now even swallow his pills..Can you tell me who many times you needed to visit Russia ..? How many much money you need to spend in all section and at last..Is there a possibility of somebody get worst or even die from this procedure?
    I have also became a member on facebook and my email is
    tsatsiadisgiorgos@gmail.com

    Reply

    • kickinms
      Sep 21, 2016 @ 08:40:04

      Hi,

      You only need to go one time, typical stay in the hospital is 30 days. There is a risk with any procedure, but the chances of dying from HSCT is less than 1%, so very, very small. You have a much greater chance of being killed in a car crash. There are several FB groups devoted to HSCT. Here is a link to the main group, it will show you all of the legitimate facilities performing HSCT for MS. https://www.facebook.com/groups/149103351840242/

      Vicki

      Reply

  8. tsatsiadis giorgos
    Sep 22, 2016 @ 06:18:22

    Vicki

    Can you send me another email address from the clinic so they can answer my back?

    Reply

    • kickinms
      Sep 22, 2016 @ 09:43:20

      TO APPLY FOR HSCT IN MOSCOW, PLEASE CONTACT DR. FEDORENKO’S ASSISTANT, ANASTASIA PANCHENKO, at:

      msclerosis@yandex.ru

      Provide her with the following information:

      A brief summary of the history of your disease:

      – What autoimmune disease you have
      – Any documentation confirming your diagnosis
      – Date of diagnosis
      – If MS, are you RRMS, PPMS, SPMS or other?
      – What symptoms you are experiencing
      – Your current EDSS (See EDSS document in the Files section)
      – Which drugs are you currently taking or have you taken in the past for your disease
      – If available, a copy of your most recent MRI report attached to the e-mail
      Note: You do not need a referral from your neurologist or doctor

      ** The response time from Anastasia can vary from several days to a week or more. Please be patient. Thank you.

      Reply

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