HSCT Stem Cell Transplant for M.S.

Marc Coppins - Chicago

In Plain English...

Here is a brief description of the study in plain English:

  1. The expected outcome of this study is either:
    1. Stop the progression of the disease so that he doesn’t get any worse, but he may still have the same issues he has currently. He just won’t get worse.
    2. Total reversal of symptoms. In a nutshell, this pretty much means he won’t have any of the complications of MS, but an MRI of his brain will still indicate he has it.
    3. Of course, he could end up anywhere between the 1st two outcomes.
    4. There is always some risk of either:
      1. Disease while his immune system is compromised.
      2. His body not accepting the stem cells, even though they came from his body.
      3. Death due either of the above risks; although no one has died from this study to date.
  2. Results that have been published indicate out of 24 patients receiving this treatment, 17 had total reversal of symptoms and 5 stopped the progression of the disease. No deaths. So, those seem to be pretty good odds and a risk that he has considered for a long time and has decided that it is worth the risk to him. I support that decision 100%.
  3. After being denied entry into the program twice, he CAN be persistent; he was finally accepted on 2/24/2011. Praise God! One prayer answered!
  4. The next step was getting the insurance to approve the procedure. The doctor’s office said they would probably have an answer within two weeks…but being realistic I figured it could take a lot longer. Yes Marc, I’m admitting it in public here…I was wrong! It doesn't happen often! It was approved in LESS than 2 weeks! Another prayer answered! We received a phone call 3/10 at 7:00 p.m. from the nurse saying he was approved.
  5. We received a tentative schedule the next day, 3/11 for the entire process, which starts April 4, 2011 and ends in late June 2011. I have been scrambling to make arrangements for a hotel, someone to take care of our dogs, watch the house, etc.
  6. So, we have less than two weeks left before we will be leaving for Chicago again. Here is a breakdown of the study details:
  7. Testing – In-depth testing happens from 4/4 – 4/8. They will test everything imaginable to make sure there are no hidden problems, like heart or lung disease, even a thorough dental exam, before they begin the treatment.
  8. Randomization– Since this is a study, 1/2 of the patients will be given the stem cell treatment and the other 1/2 will receive another M.S. drug. This has to happen so that they have something to compare their results with. Marc’s information will be put into a computer and on 4/14 the system will randomly choose which part of the study Marc is started on. These are the choices for Marc:
    1. Stem Cell Transplant
      1. If Marc is randomized for the stem cell study, the process will begin almost immediately. He will be admitted on 4/18 where they will give him various medications, including several injections, as well as a light round of chemotherapy, that will begin to make the stem cells in his bone marrow come into his blood stream. Once the stem cells are present, they will harvest the stem cells. This is done in a similar manner as dialysis. They need to harvest at least 2,000,000 stem cells. This process should be completed around the end of April.
      2. Beginning in May, he will be taking more medications, as well as 4 days of chemotherapy that will prepare him for the re-transplantation of his stem cells. I’m not really clear on the details for this period of time, but it will take approximately 3 weeks, 5/2 – 5/24. I believe this is when his immune system will start to deteriorate and he will begin to be more susceptible to germs.
      3. From 5/25 – approximately 6/25, Marc will be in the hospital. They will give him several more rounds of chemotherapy totally wipe out his immune system. He will be as susceptible to germs and disease as a newborn baby. About 5/31 they will re-infuse the stem cells back into Marc. They call this his new "birthday"! They will treat him to begin building up his immune system again. He may have to be re-immunized for everything. He should be in the hospital for about a month and then should be able to come home, if no complications have arisen.
      4. So, by the end of June, he should be back home in Battle Creek again. However, he will not be able to go out into public or have visitors for 3-4 months. He will be “the guy in the bubble”.
      5. The entire process to rebuild his immune system will take up to 2 years and he will have to visit the doctor in Chicago periodically over the next 5 years for follow up.
    2. Control Arm – Another M.S. drug called Tysabri
      1. If Marc is randomized into the control arm of the study, he will receive monthly IV injections of Tysabri, which is a fairly recent MS drug. We know a few people who have or are taking Tysabri. http://www.tysabri.com
      2. He will be evaluated after taking Tysabri for 6 months to see if the MS is better, worse or the same. Then he will be on the same drug again for another 6 months. At the end of one year, he’ll be tested again.
      3. If his MS has continued to decline while on Tysabri, then he will be switched over to the Stem Cell Transplant as outlined in # 8a.1. - 8.a.5. above. So, ultimately, unless the Tysabri makes him better, he’ll still get the stem cell treatment. Of course there are side effects to Tysabri also. There is a rare disease, called Progressive Multi-focal Leukoencephalopathy, PML, that is basically a very serious brain infection. If a patient gets PML, they will likely either be a vegetable or die. There have been 2 deaths and 1 in a vegetative state. There is a test that can be performed before starting Tysabri that will indicate whether the patient is more susceptible to PML. No one we know has had any adverse side effects however. And again, Marc has weighed the risk and has decided he will take that chance.

For more specifics, watch the videos.

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