The Great Stem Cell Caper

No.  That is not a corkscrew uncorking an expensive bottle of wine.  It is a medical device being screwed into my breastbone, creating a path for a hematologist, or blood doctor, to harvest bone marrow.  We videotaped the procedure because most of us, including me,  know little about the process of stem cell therapy.  But I am learning fast.

It all started in Rome, at the Vatican of all places.   Meredith and I participated in an adult stem cell conference.  I spoke and listened and learned, realizing cell therapy is not merely a future tense therapy.  The more I understood, the more I wanted in.  Cell therapy is the future. of medicine.

I am at the start of a new FDA approved, Phase One clinical trial for stem cell therapy for MS.  The sun has come out.  I am going to chronicle my stem cell journey on this blog, using original video and the written word.  For most of us, stem cell therapy is a mystery.

Stem cells are large, undifferentiated cells, meaning they are blank, ready to become whatever necessary to heal the body.  Stem cells can replicate any of the 210 cell types in the human body to supplement whatever function the other cells perform.  The stem cells here  will be autologous, meaning my own.  That lowers the risk considerably..

Bone marrow contains a rich trove of stem cells.  Marrow was extracted from my sternum in late August, in a procedure known as a bone marrow aspiration.  Meredith and a son Gabe videotaped the event for this blog.  The procedure looks more hideous than it is. The video is rated PG13.

The stem cells will be mysteriously processed for three months,  then infused into my spinal fluid.  They will become neural stem cells, cells of the central nervous system.  The cells will travel through the spinal fluid to my brain stem, where my lesions are.  In theory, the injured portion of my spinal column  will regain some function.  This has not been done much.  There are no guarantees.  I will believe anything when I see it.

My neurologist, Dr. Saud Sadiq, is a pioneer, confident but cautious.  He agrees with me that we both are explorers.  I like that.  It beats meandering down the beaten path.  People with threatening diseases cannot afford to be risk averse.  Inaction means simply giving in.   I take nothing for granted but am  guardedly hopeful.  Please stay tuned.

32 Responses to The Great Stem Cell Caper

  1. Debbie December 9, 2013 at 5:22 pm #

    Dear Richard,
    I just finished watching and reading your post about having stem cells extracted, in the hopes of regaining some of your ability that you have lost because of MS, and I am AMAZED at what can be done while you lay there wide awake!! I just want to say, as a fellow MSser, that you are giving everyone HOPE by videotaping and bringing us along on your journey with this procedure! Thank you for courage to face this disease head on, and Never give up! I look forward to seeing and hearing great news from this trial:)

    May God Bless you and your family at this wonderful time of year. Merry Christmas, and Happpy New Year.
    DT

    • Richard December 12, 2013 at 3:24 pm #

      We all are in this together.

      R.

  2. Mary Beth Duke December 10, 2013 at 12:51 pm #

    Dear Richard,

    I was just in Dr. Sadiq’s office yesterday. He has been my physician for the past 17 years. You could not be in better hands, though I am sure that you already know that. I first saw Dr. Sadiq in 1996 when he was at Columbia. My husband and I were immediately impressed with him, not for all of his degrees, but with his compassion and humility. I had just been diagnosed earlier that year and was terrified of what the future held for me. He was so reassuring not only to me but my husband. As you are all too familiar, MS is a disease that the family must deal with, not just the patient.

    From the beginning, Dr. Sadiq’s goal was to keep me healthy enough to dance at my children’s weddings. Seventeen years and three children later, including twins, I am fortunate to be as active as I am. I ski, run, swim, hike, tend to my children, home and work. I’ve been on Avonex for 15 years and Dr. Sadiq, my husband and I agree that the therapy is working well for me and there is no reason to change. Dr. Sadiq told me how thrilled he is that I am his patient and am able to be so active after so many years. He also tells me how lucky I am….and I know that as well.

    I have been a fan of your wife’s for many years and am sure that I will become a fan of yours as I watch you go through this process. Good luck and God Bless you and your family.

    MBD

  3. Kathy Mac December 11, 2013 at 9:21 pm #

    Richard, you give me such hope and calmness. My wife was diagnosed last year, and through your words I believe we will be ok. Thank you to you and Meredith. Peace.

    • Richard December 12, 2013 at 7:34 pm #

      And peace to you.

      R.

    • Wendy December 15, 2013 at 12:21 pm #

      Hi, No gluten/dairy/soy/sugar..vitamins/good oils and LDN may help MS. Vit D3, Vit C, zinc, B vitamins, fish oil and more may help. Gluten is wheat/barley/rye..oats may act like gluten. GMO food (corn/soy/canola) oil may also hurt. Best wishes.

  4. Michelle Rafanelli December 12, 2013 at 3:12 pm #

    I have been a patient of Dr. Sadiq’s since I was dxd 10 years ago. You are very lucky to have him and the entire practice and research center behind you. I am looking forward to reading your updates. Enjoy your family and the holidays.

  5. Whitney Snowman December 12, 2013 at 5:14 pm #

    Richard, was very glad to see tthe story. Everything you said i have experienced from being told i was drunk, to hiding my diagnosis. I have had MS for 27 years and have been lucky in that I can still work as a surgeon. My neurologist calls me as having WDD(waste down disease) excellent above not great below. I have been looking into the total stem cell transplants, not the autologous as you had this is interesting and a great option, with the same idea of the fact I can live with what I have I dont want to loose more. Good luck with your journey, I may try to hop on for a ride . Thank you again.Happy holidays.

    • Richard December 12, 2013 at 7:37 pm #

      My very best. God luck.

      R.

  6. Gina Bonfiglio December 13, 2013 at 11:15 am #

    Dear Richard and family,

    I can’t express my gratitude for your courage and idea to document your “exploration.” It is important to share this information with others, I applaud your stewardship to MSers.

    I was brought to tears by your family’s documentary. I’ve been silently waiting for my dream of a stellcell “cure” for years. Nine years ago, upon the news that I was pregnant with my first child, my Neurologist advised me to collect the stemcells and bank them for future use. His advice included the statement that “you will most likely be able to use the stemcells as a therapy within 10 years.”

    Your documentary shows this is now a possible reality, hence my tears. Thank you for this Christmas gift. As I hope it is a gift to you and your family as well. I read your book, Blindsided, and have been following your life’s story. Your career as a Journalist has projected in a different direction but it is us, your fellow MSers, who are benefiting. Thank you and I’ll keep following your courageous story.

    God bless you all,
    Gina

    • Richard December 13, 2013 at 11:39 am #

      My ver best. Keep the faith.

      R.

  7. Terri Weiss December 13, 2013 at 12:24 pm #

    Dear Mr. Cohen,

    I’m in the same clinical trial with Dr. Sadiq, the most caring and dedicated doctor I’ve worked with during my own journey dealing with this insidious illness. His dogged determination to eradicate MS has gotten us to this stage, and even if you and I don’t reap the benefits of his excellent research right away, surely those who follow us will. Still, I remain hopeful…

    I found the blood draw more draining (ha!) than the ‘squeeze play’ bone marrow extraction (albeit far less stressful in terms of anticipation): Forty vials of blood taken from uncooperative veins that closed with every stick was a very frustrating and prolonged experience for me, and for the poor nurse, whose career had apparently never before had been subjected to the such involuntary recalcitrance!

    I was pretty wiped out the next day, how about you? I know, it’s a minor thing, just one more blip in the grand picture. Once the right vein actually started yielding the precious fluid, I asked the nurse to take a few extra vials, just in case!

    Now, I guess, we hurry up and wait a bit more for our cells to go through the spin cycle and then cook.

    After 13 years in a wheelchair — btw, I totally appreciated your wife’s remarks about how we’re dissed when we’re in that equipment : / — I can indeed wait, no problem, especially if the trial proves effective. Like you, I try to be guarded in my expectations but I must say, I am more optimistic about my health than I’ve been since my initial DX so long ago.

    All the best to you and your family this holiday season – 2014 WILL be our year! : )

    Your colleague in the trial,
    Terri Weiss

    • Richard December 14, 2013 at 2:10 pm #

      I AM WITH YOU ON THAT, THOUGH HOPE TRABELS SLOWLY WITH ME. I TRY TO KEEP THE FAITH.

      BEST,
      R.

  8. Kathy Reagan Young December 13, 2013 at 4:13 pm #

    Richard –

    Thanks so much for publicly going through this experimental procedure. I’ve long believed that the answer would be found in stem cell research. When the brakes were put on federal spending for stem cell research – I knew we had taken a collective step backward. I’m glad there have been continued efforts beyond that point to propel us into what I believe will be the future of medicine – and the future for our community. Thanks for being brave. Thanks for being thoughtful of us all. Thanks for helping move us all forward. And Meredith – thanks for being there and staying there – and for helping to promote our quest. FUMS!!

    • Richard December 14, 2013 at 2:12 pm #

      We are in this together. Let’s keep the faith.

      Best,
      R.

  9. David Warden December 14, 2013 at 2:02 am #

    The Dr. OZ show was good but left me wanting more. Really enjoying your blog and the video sharing of your stem cell journey is incredible. Thank you from one MS Fighter to another.
    Best of luck to you and your Family Team of supporters.
    Regards,
    Dave
    http://www.itguruwithms.com/

    • Richard December 14, 2013 at 2:14 pm #

      Dave-

      We are traveling the same highway. I wish you a peaceful journey.

      R.

  10. Sandy December 14, 2013 at 1:27 pm #

    Thank you for sharing your journey and battle. I am my husband’s caregiver and hope is desperately needed in battling this disease. He’s now in a wheelchair but continues to fight. He was diagnosed in 1980 with RR and did pretty well until about 7 years ago when the disease turned into secondary progressive. There just is nothing out there for this level of illness, so we will be watching and hoping that your stem cell treatment is a huge success. Thanks for taking us on the ride.

    • Richard December 14, 2013 at 2:17 pm #

      I, too, have SPMS and know the frustration. Let’s see where the stem cell journey takes us.

      Best,
      R.

    • Shasha December 15, 2013 at 12:35 pm #

      Hi, I have MS…I do: no gluten (wheat/barley/rye..oats), no GMO (genetically modified food like corn/soy/canola oil etc.), no dairy, no soy, no sugar, no heated oils or dehydrated fat help me. Saturated/monounsaturated fat hurts me…coconut oil/olive oil. I can eat raw walnuts (freeze them so they are fresh and open shells to avoid hidden gluten). I eat brown rice/organic vegetables/tea/hard boiled eggs/raw walnuts (open shells), and meat 2X a year. Vitamins/good oils…Vit D3 5000IU, Vit C, zinc, alpha lipoic acid, Vit E, 5000mcg of biotin, 2000mg of fish oil. 400mg of Mg citrate, B complex, coenzyme Q10, vitamins, HCl and enzymes with meals, dairy free probiotic when stomach acid is low, Vit B12 methylcobalamin shot, LDN (low dose Naltrexone) which may help 99% of MS people. Alternative doctors may help restore/rebuild/detox a person. Heavy metals blocked my thyroid. I needed EDTA/DMPS IV chelations to remove heavy metals. I take Osteoprocare instead of dairy. Fish oil, krill oil, evening primrose oil, lecithin, phosphatidylserine/DMAE, CLA good oils help me. Alternative medicine is awesome..great help. Best wishes.

  11. Laura K December 14, 2013 at 4:46 pm #

    Richard,
    Like you, I am also a great believer in stem cell therapy as a cure for our MS. Thank you from all of us with MS for participating in this trial – people such as you and your family making these sacrifices now will make a difference for so many down the road. The fear of the unknown makes these procedures so much worse than they might be (ie – lumbar puncture, aka spinal taps) until we get on the table. Thanks to your family for being there to film this procedure to demystify it for us. But seriously- only pressure and little pain? I’m very surprised at that.

    wishing you well, Laura

    • Richard December 15, 2013 at 11:23 am #

      Surprisingly painless. Expectation frequently is worse than reality. We ae in this together.

      Best,
      R.

  12. Scott S. December 14, 2013 at 7:33 pm #

    Dear Richard
    thank you for sharing your journey and helping to demystify the stem cell procedure. your courage, strength and persistence shine through. As a PWSPMS I know the importance of showing up every day and climbing that mountain. your in good hands with sadiq and his team. there are thousands of us by your side.
    good luck
    Scott S.

    • Richard December 15, 2013 at 11:40 am #

      Agreed. Thanks for you generous comments.

      Best,
      R.

  13. Desinie Smith December 14, 2013 at 8:25 pm #

    Dear Richard,
    As a fellow MS patient I want to thank you for chronicling your stem cell journey for all of us. I’ve been diagnosed since 1999 with my first symptoms going back to 1992. I’ve tried numerous treatments many with very little success. Many of us Ms’ers are watching with great hope and I’m sending you many prayers and my heartfelt gratitude for helping to pave the way. I’ll continue to read your blog with great anticipation and a renewed sense of hope. Stay strong! So many are behind you.
    Desinie S.

    • Richard December 15, 2013 at 11:43 am #

      Thanks. We all have a stake in this. I am happy to be doing something with a chance of success. Finally.

      Best,
      R.

      • Shasha December 15, 2013 at 12:37 pm #

        Hi, See my above comments. Best wishes.

  14. Shasha December 15, 2013 at 12:40 pm #

    HI, Blue green algae may also help make stem cells. I get hurt by gluten/dairy/soy/sugar. An expensive stem cell transplant would have to be done daily since these foods hurt me daily. I take vitamins/good oils and LDN which help keep me going and rebuilding my cells so they burn oxygen. No gluten helps my gut lining absorb more nutrients..then cells are made right and work right. GMO food may also hurt the gut lining. Best wishes.

  15. Paul December 18, 2013 at 12:33 pm #

    Hi Richard,

    i like yourself have been battling ms for many years. Diag. in 1972 with signs of it 3 years before that and now in the spms stage and crashing fast for the past 3 years.
    I wish I could come aboard for the experimental stem cell treatment which hopefully will result in some improvement in the loss of function that was taken away,by our battle with this monster.Wishing you the best in your new journey.

    Paul

    • Richard December 18, 2013 at 4:40 pm #

      Paul-

      SPMS breeds frustration. I feel that with you. This stem cell opportunity is a gift. It feels great to be proactive, though I take nothing for granted. Please keep going. Cell therapies are going to be booming soon. Let’s get in on them.

      Peace,
      R.

  16. spiro spyratos February 1, 2014 at 11:40 am #

    Hi Richard,
    Been following your story for awhile. I’ve been diagnosed for fifteen years and although I can walk, I need a foot brace due to foot drop. It’s exciting that you are taking part in this study as it gives much needed hope. There is another mesenchymal stem cell study that is different by Dr. Miller at the Cleveland Clinic that just completed phase I. I believe the results were promising in improving some visual parameters and one patient, a former gym owner, testified that he can raise his leg without help from his hand. It is MSC’s from I believe blood or adipose tissue? They are not, however, neural stem cells like the study you’re in. I’m excited that you started this video blog to try to follow your progress. I’m optimistic that this will be great for you and having Meredith’s support is wonderful. I hope you do well and usually after phase I, it will take likely another five or six years to be approved by the FDA for people with MS. It feels for us like the clock is ticking and the therapies available now, although good for inflammation/RRMS, are despairing for SPMS.

  17. john mcbride March 25, 2015 at 10:13 pm #

    Hello Richard,
    Dr Sadiq is my Dr also and I am in the same trial! It’s exciting and I really appreciate the video of the aspiration (as I had a little heightened stress prior to the bone aspiration. Definitely added hope to this journey (since 1999 for me)!
    Good luck with your results!