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Dr. Koffman’s New CLL Adventure- Starting CAR-T (chimeric antigen receptor) Therapy

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Friends and CLL Society supporters:

This is a difficult piece for me to write, but after consulting with my wife, my family, my closest friends and key supporters of the CLL Society, I have decided to share further details of my personal battle with CLL.

You may have noticed a substantial increase in our efforts with this charity in the past several months. More fundraising, more patient support groups, more services, more conference coverage videos, and more patient research activities.  While this is partly due to the natural progression of a growing non-profit like ours, there is another explanation for my urgency.

After an amazing run of 69 months on Ibrutinib, my CLL is officially relapsing.

Before I address my treatment plan, I would like to express my never-ending gratitude to all the researchers, hematologists, nurses, and especially the brave clinical trial patients who participated in bringing Ibrutinib to market.  What an amazing drug!  I can say without hesitation that without Ibrutinib, I would not be here, there would be no CLL Society, and countless other CLL patients would have already succumb to this terrible disease. And while I personally grateful to the many doctors who have helped me on my 12-year journey, I particularly would like to thank Dr. John Byrd and the entire Ohio State team. The team at The James Cancer Hospital is truly doing God’s work. To be treated by them is to be treated by angels.

I have studied my case thoroughly and consulted with many friends and experts – after all, “Smart patients get smart care.”  After serious introspection, I have decided that I have the best chance to save my own life while at the same time serving science and the broader CLL community by once again participating in a potentially breakthrough clinical trial.  Just like with my choice to start PCI-32765, now known as ibrutinib, in a Phase IB/II trial, I believe it is my obligation when possible to do my part for research, so that further good can come from my cancer for me and others. For these reasons, I will soon be undergoing innovative CAR-T therapy as part of a phase I/II clinical trial.

I am confident that this CAR-T trial offers me the very best odds at a long and deep remission.

It comes with real risks that I know and respect, but I am hopeful.

I am hopeful that I will respond well and achieve a complete MRD- remission. Odds are in my favor.

I am hopeful that this treatment will prove to be safe and that any side effects will be mild, manageable and short term. Odds are in my favor.

I am hopeful that I will have a long glide with my disease controlled for years as I have experienced with ibrutinib. Here only time will tell.

And I am also hopeful that my participation in this clinical trial will push the scientific understanding of CLL forward, so that this therapy will be available sooner to the broader CLL community and that we can ultimately find a cure.

During the next several weeks and months, as I prepare for and receive treatment, the CLL Society will continue ‘business as usual’ – to the extent ‘usual’ is possible while battling cancer. I will try to blog on CLLSociety.org often about my experience and share the blow by blow accounts, the details and my insights about my next amazing adventure on the new CAR-T section of our website.

We will do our best to continue serving all aspects of the CLL community.  And we will continue to work to establish a firm and sustainable foundation for this non-profit.

Your thoughts, prayers and support are greatly appreciated.

Stay strong.

We are all in this together.

Brian

51 Responses

  1. Brian, I don’t know you but I love you. I love you for the courage and hope and knowledge and wisdom you have conveyed to all of us, but especially to me on a personal level. I send prayer and hope and peace as you prepare for this new leg of your journey. Thank you, thank you for all you give! Davelyn Vidrine, Chattanooga, TN

  2. Brian, I met you in Nashville January 20th and have followed your blogs and postings since my diagnosis in October 2010. Your insight and the Lord led me to Dr. Byrd and the acalabrutinib plus obinutuzumab trial at OSU. I agree with you wholeheartedly about his team. I want you to know that I am thankful for your selflessness and willingness to work diligently to advance science to give us hope and make our lives better. Rest assured that my thoughts and prayers will be with you in this part of your journey. Thank you friend, and God bless. May you have many more years to do your work. “We’re all in this together.” Mike Davis

  3. God bless you Dr. Koffman! Your strength inspires us all. We appreciate you and we are all here for you. Thank you for sharing your personal journey.
    Your Cleveland CLL gal: ERIN Hill

  4. Dear Brian,
    We wish you the best! Your courage and dedication to helping the CLL community is incredible. John started Ibrutinib 2 months before you and we go for his checkup next week. We know we will have decisions to make in the future and having the your support is appreciated more than you know. Would you mind sharing what your Ibrutinib dose has been as John dropped down to two 140 mg capsules for about the last 2 years. Our thoughts and prayers are with you! Cindy and John

    1. I am 3 tablets daily. 2 tablets a day will adequately occupy the BTK receptor sites for most patients, so no worries

  5. Dear,dear Brian,
    I am with you in my prayers,with a lot of love.
    I keep you and send you stregth.I want you to succeed.
    I beleive in you
    Your honest friend
    Olga

  6. Offering my sincerest well wishes for your success, Brian. All the best to you and your family on this next leg of the journey.

  7. Brian, it’s so encouraging to read your story, your thoughts, and the fears that you translate into hope not only for yourself, but for all of us. What an adventure, which after all is what life is all about. Thank you for your decision to share your journey with us, as like you said, we are all in this together.

    I’m only 21 months into my journey, and I know that one of these days I’ll have to make some decisions too. Following your journey is so helpful to me.

    Blessings and prayers as you continue into the next phase of your CLL journey. Your courage is inspiring.

  8. Wishing you the best. My prayers are with you and your supercharged T-cells. It may be helpful to the CLL community, if you are willing, to explain why you are choosing CAR-T instead of venetoclax.

  9. Sir, I wish you all the best in this new treatment. As you lightened the way for many cll patients, may your path be lightened too with support, thoughts and prayers and the smartest care! You will be part of this smartest care and probably our future.
    I was diagnosed with cll in 2000 at the age of 41; I did not need treatment till 2011 (13q, IGHV mutated). I took 3 courses of FCR that brought me remission till 2014. I slowly, very slowly progressed with only mild symptons when a p53 (heterozygote) mutation was discovered. There was a trial available with Ibrutinib and Venetoclax for me. I started last September and at this point I am already in remission. I live in the Netherlands and have the support of the AMC/Lymmcare Center of dr. Arnon Kater. Odds are also in my favor. Stay strong! I will follow your journey.
    Best wishes, Yvonne

  10. Dear Brian, thank you for sharing your latest news with us. Your willingness to share your experiences pave the way for the rest of us! There is a wonderful lady who lives in my area who had CAR-T two years ago, after relapsing on Ibrutinib. She had some rough side effects shortly afterward but since then, has been doing water aerobics every day and is feeling great. I’ll continue to look forward to your posts. You can do this!
    Cynthia

  11. Hi, Brian —

    Thanks so much for letting everyone know. We are all in this with you and wish you the very best. Your blog will be very closely read by those of us that may need CAR-T down the road — so thank you very much for your investment of time, effort, heart, and soul. You make a huge difference to all of us.

    Wishing you fair winds and following seas.

    Geoff Grubbs

  12. Brian
    Blessings to you on this new journey. Thank you sincerely for all you do for CLL patients and their families.
    Katie Keichline

  13. Brian,
    Sending you the very best wishes for success as you venture into this exciting new area of treatment which holds so much potential. Your personal blog and subsequently this site have helped me through some of my more difficult CLL moments. You are an inspiration and have given great hope to the CLL community. I look forward to reading about your experience with CAR-T as well as your success and eventual long-term remission!!! I may be participating in a CAR-T clinical trial in the not too distant future so I will read your updates with much enthusiasm.
    Warm regards,
    Nan

  14. Dear Brian,
    You are an inspiration to us all…I will be sending good thoughts your way as you begin this next journey. As you always say: Stay Strong…We are all in this together…
    Terry

  15. Brian, sending good vibrations for a smooth trial experience. if you are having the treatment at UW, you and members of your family are welcome to stay at our home (we have lots of room in this big house. our door and hearts are open to you. (before moving to gig harbor, we lived in glendora) wishes for a robust response, susan joyce

  16. Dr. Koffman, by sharing your journey with CLL, you are helping us to be stronger, smarter and mostly hopeful.
    Mark and I now regularly say “we refuse to worry” because you thought us to stay positive, calm and not to panic. And this attitude made several bad situations much easier to overcome. We are hoping Car-T will be available for more people very soon and we are confident you are going to succeed with this procedure.

    Thank you for everything and most of all, stay strong!

    France & Mark

  17. Thanks so much for this update and all that you for us living with CLL

    Our thoughts and our prayers are with you and your family.

    Blessings, Diane

  18. Brian,

    Thinking of you and your family at this difficult time. Best wishes for mrd- . We all appreciate how much you have done for us and you mean a lot to us. Please let me know if there is anything we can do for you. Safe journey, Judy and Jim, your Boston friends

  19. Like one of your favorites says”There is a crack in everything, that’s how the light gets in.” (Leonard Cohen). Looking forward to your blog. Acalabrutinib 12/14. Feel like I’m right behind you following the light through the darkness. When you’re strong we are strong.

  20. Brian,
    Would love to know which trial you are entering. The one at MD Anderson?

    Wishing you all the best and thanks for all you do for all of us.

    Lynn Samuels

  21. Dr. Koffman,
    Thank you for again pioneering on behalf of all of us. I will be praying for you, watching for your updates and passing them on to others.
    Sincere best wishes,
    Marcyne

  22. Hi Brian, very sorry to hear you have officially relapsed. However, I’m deeply appreciative of your once again leading the way with CAR-T therapy. That’s probably the path almost all of us will one day find ourselves on. Thank you and Patty, and Will too, for all you’ve done on behalf of CLL Society. (I enjoyed the fun comic book BTW – Will is a talented artist!) I look forward to seeing you at the 25th and 50th anniversary of the group!

    Stay strong!
    Kevin

  23. Brian,
    I met you at Moffitt in Tampa a year ago! I too relapsed on Imbruvica officially in May of 2017. I was diagnosed in Nov of 2011 at U of M Ann Arbor Mi. After 2 rounds of FCR and no luck the FISH showed 17P and 11Q deletions. Then on to OSU and a short duration of offatumamab and July 2012 started P CI 32765. Now On Venclaxta And So Far Doing Well. 9 Months On venclaxta. Our Son Had Car T In 2013 At NIH For Primary Media Stinal B Cell !ymphoma And Doing Very Well After A Rough Ride. I Was With Him During The Whole Thing Even With My CLL And Terrible ANC Counts. Mark W

  24. Dr. Koffman,
    We spoke in Nashville at your CLL Society Educational Seminar and I’m very sorry to hear of your relapse. In the seminar I don’t recall whether you were being treated with Ibrutinib and Venetoclax as I am currently proceeding via that trial or you were just taking Ibrutinib alone but it would be helpful to find out whether you were taking both when you had your relapse with CLL. I understood from your discussion that day that many on the trial with both drugs were already seeing MRD negativity but there wasn’t enough data to determine if that would be a lasting remission or not thus the need for the trial. I hope for all of our sake that your CAR-T treatment is very successful for you and the others on this trial going forward….
    May God Bless,
    Larry

    1. Hi Larry,

      I am relapsing after 69 months of single agent ibrutinib. V+I gives deeper remissions. Its is too soon to say if they are more durable but I bet they are.

      Brian

  25. Dear Brian,
    All of us are pulling for you – you’ve been an inspiration and a great resource for us all. Just an ignorant question – what factors led you to choose CAR-T vs. Venetoclax? We’re all hoping that your CAR-T choice will be the solution that we all want it to be!

  26. Dear Brian,
    As a physician colleague and fellow cll patient I have been an admirer of your very generous courage as you persue innovative advances in the treatment of this enormously complex disease. You are the consumate physician. You selflessly and exhaustingly work to help us all.

    Having talked with you before and enjoyed a dinner with you in Salt Lake City in September, I am a fortunate witness to your dedication and inner strength.

    Stay strong and by all reasonable means,
    Just Stay!

    Ron Campbell

  27. Brian,

    I just saw a lymphoma patient on Megyn Kelly TODAY who was one of the first to receive CAR-T therapy and has no sign of cancer in her body after treatment. Very exciting new option. Hopes and prayers for you to have the same outcome!

    Thank you for sharing your journey with all of us! I’ll be reading your blog! Hope to see you again soon.

    Shari

  28. Thank you for your courage, not only in moving forward with the CAR-T therapy, but in letting us in on what I imagine has been a personal, challenging decision. Like others, I have read your many encouraging posts and watched your videos, only once meeting you momentarily at an event in Salt Lake City last year. Not only have you told us to “stay strong,” you have modeled that strength. Not only have you reminded us “we are all in this together,” you have demonstrated what “together” really means by disclosing your own ongoing relationship with this confounding disease. I will be thinking of you and following your blog with concern and hope for a deep, long remission.

  29. Brian,
    You continue to lead us in the fight to overcome CLL and remain positive through the fight. Your thoughtful and selfless support to the rest of us is without equal. I wish you the best and most favorable outcome from your CAR-T journey. My thoughts and prayers are with you.
    We’ve met on several occasions and I am so grateful for your knowledge and ability to explain this malady to the rest of us. God bless you and watch over you. You have my prayers and wishes for a speedy MRD recovery. More of us may well follow your footsteps.
    Be well and stay strong.
    Bob

  30. Brian,
    We will be following your journey closely. Bless you for being a trailblazer for all of us. Wishing you success and remission.
    Kim

  31. The healing power of the Universe flows in, around and through every cell of Brisn’s Body nurturing, strengthening, making him well.

    A self described atheist said this “prayer”’for me every day as Inwas going through a trial treatment. I have been in remission for 11years so maybe he was on to something. I am saying it for you.

  32. Brian, my very best wishes for you and the success of your CAR-T therapy. Eagerly awaiting your reports on what may well be the most promising course of action for your CLL. And thank you for your pioneering work, now and in the future.

  33. Brian,
    I wish you all the best and thank you for your amazing openness and strength to share and battle CLL. G-d Bless you and your family and your society family is here for you as well!

    Adam, Birmingham Alabama

  34. Wishing you the best Brian! You certainly are a trail blazer, and I hope everything goes well!
    Marilyn, Virginia.

  35. Brian, our thoughts are with you as you start this journey. I’m so glad you are doing this smart care to support yourself and beat back the CLL, and also so humbled for your desire to support the science and — by extension — those of us diagnosed and to-be-diagnosed. <3

  36. Brian,
    Best to you as you begin your CAR-T journey. You have been here for all of us and we are here now for you. Your efforts have taught me so much about my CLL and treatment options. Thank you! My thoughts and prayers are with you.
    Paul R

  37. Brian, You continue to be a pioneer, an inspiration and a teacher. All of us with CLL, especially those of us who see CAR-T as our likely next treatment, are grateful to you for being so open and sharing your experience with us. I will be following your progress through this trial closely, with hope and a strong belief that you will have a great result.

    Leora, Baltimore MD

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