Stem Cell Drumbeat

The drumbeat for access to stem cell therapy can be heard across the land.  This is the new magic pill, the silver bullet that will slay the monster, multiple sclerosis.  Expectations are sky high, out of control in a troubling way.  I am lucky enough to be in an FDA approved trial of Mesenchymal stem cells in treating MS,  And I am skeptical, reasonably hopeful but counting on nothing.

In 2004, Biogen, a Boston based biotechnology giant, introduced Antegren, by popular account, a wonder drug.  MS patients fell over each other to be treated with  it in an  unprecedented wave of miracle madness.  The name Antegren was changed to Tysabri, which played to mixed reviews until 2006, when Biogen and partner Elian yanked the drug off the market.

There had been patient deaths from the PML virus.  In January, 2012, the FDA changed the labeling for Tysabri to indicate that testing positive for anti-JC virus (JCV) antibodies presented a public danger.  Wall Street had predicted Tysabri could become a $3 billion drug.  I don’t think so.

Things are seldom what they seem.

I am not suggesting this FDA approved stem cell trial poses any danger to patients.  We are using autologous cells, our own, which eliminates any risk of rejection.  I feel quite safe, the only possible danger being disappointment.

My point is simple.  Neither doctors nor patients can know with any certainty what the outcome of this trial will be.  Don’t spend your money before you earn it.  Doctors have their hopes but promise nothing.  I expect little or no return of function but maybe, just maybe, reaching  a measure of stasis, an illness stopped in its tracks.  Who knows?

I vote for optimism and hope but caution against any of us setting ourselves up for bitter disappointment.

 

Follow Richard on Twitter at rmcjourneyman.

 

 

12 Responses to Stem Cell Drumbeat

  1. Lori January 30, 2014 at 11:14 am #

    As I prepare to leave for my MRI, I feel the need to “adjust” my frame of mind. The MRI was ordered to “rule out” MS….but I need to prepare myself for a diagnosis of MS. Otherwise disappointment will be an understatement. I look forward to your posts…keep ’em coming. Again, I am so hopeful that stem cell therapy will be the savior…

    • Richard M. Cohen January 30, 2014 at 1:28 pm #

      Good luck with your MRI.

      Best,
      R.

  2. Nancy Cincotta January 30, 2014 at 1:21 pm #

    I think that’s a good plan. My expectations are probably too high. As a progressive ms patient I don’t seem to have any other hope. I tried tysabri and then tested positive for the jcv virus. All I want is to feel a little bit better before I have to give in to a wheelchair, although it’s becoming the only option for me if I am going to participate in life.

    • Richard M. Cohen January 30, 2014 at 1:30 pm #

      Nancy-

      Stay out of the chair as long as you can and keep fighting. One day, we will win.

      Peace,
      R.

  3. Mimi January 31, 2014 at 10:35 am #

    I’m trying to keep my feeling of hope in check, but it’s difficult. Dr. Sadiq has referred to the time we’re in as “a period of revolution” in the fight against M.S. To me that symbolizes we’re entering into an actual war with the aggressor. The attempts to quiet it aren’t enough any longer.

    • Richard M. Cohen January 31, 2014 at 8:55 pm #

      Mimi-

      I agree with Sadiq. But that does not mean the war is won. We are fighting on the same side.

      R.

  4. Kyle January 31, 2014 at 10:51 am #

    I second your vote for optimism and hope! Sadiq has that effect on people. He does not blow smoke up my skirt, but every time I see him I leave feeling really good!

    I know I have MS and I know there is nothing that can be done about it, at the moment. The future with MS is a little bit like the lottery. The odds are certainly against me, but the only way I can guaranty I will not win is not to play!

    So I watch with a cautious optimism, the adventures of you and the Good Doctor Sadiq @Tisch!

    Kyle

    • Richard M. Cohen January 31, 2014 at 8:58 pm #

      Kyle-

      I hope our odds are better than the lottery. Let’s keep fighting.

      R.

  5. Carla February 2, 2014 at 3:33 am #

    As dangerous as it is to believe, I believe this stem cell procedure will be Victorious. I think it’s equally dangerous, if not more so, to not believe. There is something very right about using what’s in your own body to heal your body. I understand the danger of disappointment. I’ve been warned yet I still believe and hope for us all!

    • Richard February 2, 2014 at 7:27 am #

      Carla-

      Keep believing. I am not writing prescriptions for others. What seems dangerous to you may be safe for me.

      Best,
      R.

      • Carla February 2, 2014 at 12:37 pm #

        I hear you and fully understand! Thank you Richard and I hope for all of us I’m right!

        Carla

  6. Kevin Weilacher June 2, 2014 at 10:46 am #

    It’s now June 2nd 2014 and I have heard of a few other MS patients using various forms of stem cell treatment…
    I live in Canton Ohio and I know of a woman in Cleveland Ohio that is going to the Ohio Stem Cell Treatment Center. She has progressive MS.
    They have devised a treatment wherein they do liposuction and are able to extract stem cells from a person’s own body fat.
    They inject the stem cells back into the person. This treatment is experimental and therefore not FDA approved and also not covered by insurance so it’s wholly funded by the individual.
    So far she has had some limited success with this treatment…
    All of these various stem cell treatments are bringing hope to many people and there are a complete other group of folks looking forward to this…
    Those of us with Transverse Myelitis (TM)….a cousin of MS.
    Instead of having the lesions on the brain, we have them on the spinal cord itself.
    We suffer from the same symptoms as someone with MS.
    It is with great hope that the stem cell treatments work….As of yet, there are no facilities that are working with anyone that has Transverse Myelitis so we look to the treatment happening with those that have MS..
    I wish you the best Richard and I hold hope that stem cells are the way to go…especially for those young children that have TM.
    Kevin