Stem Cell Infusion #2

I am ready for the next step, now just days away. So much has gone wrong since my first stem cell infusion, it is time for something to go right. The pulmonary embolism, psoriasis and shingles – all unconnected to the clinical trial – were intruders that broke down the door and invaded my body only weeks after the first stem cell infusion. I do not know what if any effect those conditions will have on the good work of the millions of stem cells swimming somewhere south of the top of my head. The doctor says none.
I like the man and trust him, but how does he know? This therapy is new and has never been tested before. We re pioneers, heading toward a new territory, and we all know from the movies what can happen to pioneers. Actually, I like being a pioneer, and I know my scalp is safe, except when I buy theater tickets in New York, And the trial is rife with possibility.
I wonder if age is an issue here. Again, we do not know. Does a guy in his mid-sixties (yes, I am that old) have the same potential to respond as a younger person? We will find out. I assume there is great diversity in this group lucky enough to be included in the trial.
As far as I am concerned, this experiment is as much for my children as it is for me. I am the third generation hit by MS in my family. My kids are still in their twenties. For us, the stakes are high. For all of us, the stakes are significant. Our stories are different, but we share a single reality. A disease that must be wiped out forever.

48 Responses to Stem Cell Infusion #2

  1. Matt August 25, 2014 at 9:59 am #

    Thanks Richard and all involved. I pray and hope for all of you

    • Richard M. Cohen August 25, 2014 at 11:57 am #

      Thanks.

      R.

  2. Joan August 25, 2014 at 10:42 am #

    Thank you for being a part of the search, and thank you for generously sharing so much. Sending loads of positive energy your way. You absolutely DO deserve a positive outcome!

    • Richard M. Cohen August 25, 2014 at 11:57 am #

      Thanks.

      R.

  3. Jack August 25, 2014 at 11:36 am #

    Good luck! You are doing this for your children, yourself, and a whole lot of other people you will never know. Thank you for your willingness to participate in this research that has the potential to impact many lives.

    • Richard M. Cohen August 25, 2014 at 11:58 am #

      A privilege.

      R.

  4. Bill Garcia August 25, 2014 at 12:37 pm #

    Thank you for being a Pioneer! Your efforts have the potential to affect so many lives. It’s wonderful too for you to think of your children. Good Luck to you and prayers your way!

    • Richard M. Cohen August 25, 2014 at 3:24 pm #

      Thanks.

      R.

  5. MB August 25, 2014 at 1:13 pm #

    I wish you a positive outcome, too.

    Question: When the trial participants respond positively, how many more years of trials will be needed before this is made available to other MS patients? 5 years? 10 years? Does anyone know?

    I can’t tell you how many times I wished I was a mouse because of the healing they experience through “participating” in trials. It reminds me of an evangelical healing—“The paralyzed mouse can walk! “, Then a quarter of a century must pass in order to see if humans respond the same way.

    Good luck this week. I too have children I worry about and hope that a cure is found before anyone else has to live this nightmare.

    • Richard M. Cohen August 25, 2014 at 3:27 pm #

      It is a very long road. More time and trialls await.

      Best,
      R.

    • Christopher August 26, 2014 at 1:31 am #

      @MB,

      The answer is… it depends. It could be a couple of years, or it could be up to five or more. There is amazing research going on three or four fronts right now, and several clinical trials that have started or about to start. Both with stem cells, and genetic engineering. If all goes well, we will be looking at a functional cure in about 15 years. That means available, approved and working for 99.999% of all patients.

      Other therapies will be available in the meantime, as an adjunct, to make sure we get there to see it and experience it.

      I hope that helps clarify.

      • MB August 27, 2014 at 6:12 am #

        Christopher,thanks for the information. You sound confident and that’s encouraging.

  6. Sarah August 25, 2014 at 2:26 pm #

    Thank you, Richard, for stepping up to the plate for those of us who either can’t or don’t trust the procedure yet. You’re a brave one and I pray that no harm will come afterwards. The stakes are high for my son too, and I’m the only one in my family for generations who has ever had this disease, even though there were a few apples in the mix that weren’t quite right, if you know what I mean.

    On the opposite end of the spectrum, I enjoyed reading about Meredith’s life in this past weekend’s edition of Parade. I’m with you – I wouldn’t have wanted the show in my house either. Godspeed, my friend.

    • Richard M. Cohen August 25, 2014 at 3:29 pm #

      Thanks.

      R.

  7. Erin August 25, 2014 at 2:27 pm #

    Good luck Richard! We have to believe there will be a positive outcome, you deserve it, we all do.

    • Richard M. Cohen August 25, 2014 at 3:29 pm #

      Thanks.

      R.

  8. Jeff August 25, 2014 at 3:49 pm #

    As others have said, thanks for your strength and continued sharing. We are all in this together.

    • Richard M. Cohen August 26, 2014 at 7:31 am #

      You got it.

      R.

  9. Craig August 25, 2014 at 4:29 pm #

    I like that concept: Doing it for your family and the future! And, the stem cell road has not been inactive around the globe. Here in the US your Dr. is a pioneer and I am so envious of each person in his study. Numerous people have achieved successful improvements in other countries, including the amazing center in Panama. And, there is a CBS Morning News clip on the web about a young black athlete that was surprised to be was brought to his knees suddenly and underwent the killing of his immune system and then a reintroduction of stem cells and bone marrow. He recovered well and while he still had MS, his symptoms and maladies were almost non-existent.

    USC here (where my Neurologist is) does this and has excellent success with it – for MS and some cancers. I have considered it, but it seems pretty harsh as you almost have to “pass” to allow the regrowth and reboot of the immune system. And I don’t have 6 weeks to be totally shut down and then reset.

    All the best as you head to the next infusion. You are doing this for your family and for so many others… and for science. And you are NOT OLD. As my long-deceased mom would say, “Cut that shit out.” You have miles to go before you sleep.

    Craig.

    • Richard M. Cohen August 26, 2014 at 7:35 am #

      As Jackie Glleason would exclaim, a little traveling music, please.

      Best,
      R.

  10. Yvonne August 25, 2014 at 4:57 pm #

    Make sure you have your coonskin hat on or your Picard suit. Blaze forward for us all.

    • Richard M. Cohen August 26, 2014 at 7:37 am #

      My musket is loaded.I am ready.

      R.

  11. Mark August 25, 2014 at 5:09 pm #

    Thank you for sharing the news, Richard. I hope the outcome is positive and quick for you…for us. Is there an expected timeline for any results?

    • Richard M. Cohen August 26, 2014 at 7:38 am #

      At aome point?

      No, sir.
      Patience.

      R.

  12. dale August 25, 2014 at 8:39 pm #

    Richard… I am on the Cape too with MS. There are zero good neurologists here. Still working as a marine ecologist but my active field days are behind me. Oh how I long to return to Antarctica or even slog the marshes of New Jersey at this point. Thank you for stepping out in front of the pack on this. With two in college and one still to go I’m full time worried about tuitions but expecting a miracle for you in this. Then maybe it’ll be my turn.

    Dale

    • Richard M. Cohen August 26, 2014 at 7:42 am #

      I hope we all get a turn. How nice that will be.

      Best,
      R.

  13. Linda Lazarus August 26, 2014 at 7:28 am #

    As so many have noted, you are taking giant steps. Walking is all in the perspective. You are leading us all.

    • Richard M. Cohen August 26, 2014 at 7:45 am #

      We are on the same journey.

      R.

  14. nancy s August 26, 2014 at 10:27 am #

    Sending you my best wishes. I admire your bravery. I would love to think that there

    might be some relief for me and others on the horizon thanks to your trial

    participation.

    • Wendy August 26, 2014 at 11:59 am #

      Thank you for your generosity in sharing your journey!! I fell connected to something big!

      • Richard M. Cohen August 26, 2014 at 9:45 pm #

        Hope so.

        R.

  15. Wendy August 26, 2014 at 12:03 pm #

    I meant to say I feel connected to something big!!! Just wanted to clarify because with MS it could have very easily have been fell.!!!! Haha

  16. Brian August 26, 2014 at 7:35 pm #

    When you’re receiving that next infusion, I want you to try and picture in your mind a very large crowd around you, all of whom are cheering and chanting ‘go, you lab rat, go’!!!

    • Richard M. Cohen August 26, 2014 at 9:46 pm #

      Nice.

      R.

  17. Anne August 26, 2014 at 9:45 pm #

    Richard, I am hoping that you will begin to see positive results following your second infusion. As everyone has already said we all appreciate you sharing your journey with us. Take care and let those stem cells do their job.

    Anne

    • Richard M. Cohen August 26, 2014 at 9:46 pm #

      Right on.

      R.

  18. Nik August 26, 2014 at 10:57 pm #

    It MUST be wiped out and fingers crossed, it will. When I think about how my distant cousin was diagnosed at 16 and then I saw two kids under the age of 13 yesterday in my MS clinic , I thought of your post that I read as I was headed in there. Thinking of you, hoping it works and all that jazz…but what I really want to shout is YOU ROCK! Lead the way….

    • Richard M. Cohen August 27, 2014 at 5:47 am #

      Thanks.

      R.

      And if I rocked, I would fall over.

  19. Jan August 26, 2014 at 11:57 pm #

    Sending prayers your way for good results and strength of spirit.

    (And if you’re talking about infusion time, I hope there is no pain with that. And also that you won’t be one of those 60+ year-olds who falls asleep and snores. Just a little humor there, no insensitivity intended).

    • Richard M. Cohen August 27, 2014 at 5:50 am #

      I won’t be snorung my wat through the infusion. I promise.

      R.

      • Jan August 27, 2014 at 9:11 am #

        See? You’re younger than you thought.

        …But I do understand that this is serious business and truly wish you the very best as you contemplate the procedure, have the infusion, and then work with it after.

  20. Grandma August 27, 2014 at 10:33 am #

    Thank you. You are a very brave man.

    • Richard August 27, 2014 at 5:30 pm #

      Not bnrave. Fortunate.

      R.

  21. Sandy August 27, 2014 at 11:04 am #

    Sending strength your way. I am third generation too and I know I have to do more in this life than just take my Rx and hope for the best for my son.

    There are few real adventures left in this modern life. But you’re on and expedition now ala Lewis and Clark. The Corps of Discovery for the 21st century.

    Not really adrenalin as you once knew it…..but close enough to make history.

    My very best to you,
    Sandy

    • Richard August 27, 2014 at 5:32 pm #

      Boy are you right. I am lucky to be on this train.

      R.

  22. Christopher August 27, 2014 at 11:30 am #

    Like the lady says above, “brave man.”

    Everyone please be aware that this takes time to be sure it’s safe and effective, and incredible claims made elsewhere are just that.

    http://www.geneticsandsociety.org/article.php?id=7945

  23. Kevin August 27, 2014 at 2:10 pm #

    Took me a minute to get the scalped / theater tix reference, nice to see your sharp wit is firing on all cylinders.

    Regards,

    Kevin

    • Richard August 27, 2014 at 5:34 pm #

      Rhanks.

      R.