Starting CAR-T therapy for my relapsing CLL - CLL Support

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Starting CAR-T therapy for my relapsing CLL

bkoffman
bkoffmanCLL CURE Hero

Friends and CLL Society supporters:

This isn't easy.

After consulting with my wife, my family, my closest friends and key supporters of the CLL Society, I decided it was best to again share details of my personal battle with CLL in a very public way.

After a wonderful run of 69 months on Ibrutinib, my CLL is now officially relapsing. I am very grateful to Dr. Byrd and the team at Ohio State for their great care over the past 6 years.

But it is time to move on.

Very soon, I will 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 chance for a long and deep remission.

I will be frequently blogging and sharing all details about my CAR-T experience here. My first more detailed post that share more about my decision is already up. Please take a look, stay in touch and share your thoughts. More details will be coming soon.

Independent of and prior to this big decision, we have produced a fun comic book about CAR-T. It's up on the website too.

We will be bringing much more information and support about CART-T over the next few months on a new CAR-T section of the website cllsociety.org/car-t-and-ot....

I hope others will benefit from following my CAR-T story as I begin this new adventure.

Your thoughts, prayers and support are greatly appreciated.

Stay strong.

We are all in this together.

Brian Koffman

cllsociety.org

bkoffman.blogspot.com

50 Replies
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Thank you for sharing your personal experience. You are an inspiration to me and so many others. I watch all your interviews of doctors on YouTube, follow CLL Society online, and always love to hear your comments in this forum. I appreciate your advocacy for us. Please take care of yourself as you prepare and start CAR-T therapy. You will be in my thoughts and prayers.

Sincerely,

Dale

Stay strong, a role model for us all Brian. Thoughts and Prayers

UK Sparky

Good luck Brian! We are all pulling for you. Thank you so much for all you do to help others by sharing your journey and sharing important CLL information. Sending positive thoughts your way for success on your CAR-T journey!

kim

I will be watching you forthcoming story with interest. Thank you for being brave enough to share. Good luck with this next stage. Cindy.

Just read the CAR-T comic book, Brian. It is FABULOUS! Thank you for doing it. Did your son illustrate it?

bkoffman
bkoffmanCLL CURE Hero in reply to PlanetaryKim

Yes-my youngest son, Will Koffman

Keeping you in my thoughts and prayers. And love the comic book (also great for explaining CLL to children!)

gemit2000
gemit2000 in reply to BettinaB

As Denzel's character Joe Miller in Philadelphia says, "explain it to me like I'm a six year old".

Bravura performances in that movie matched by the bravura performance in creating that comic book. Just another of your hundreds of important contributions to the CLL community. And now one more... a CAR-T trial. Thank you for you and staying strong.

My very best wishes are sent to you on this journey. I am sure the sct will be a complete success.

Look forward to your updates.

Sue

Wishing you all the best on your path to a long and deep remission. You continue to be an enormous inspiration. I hope that all of the good wishes that are being sent your way will strengthen and encourage you as you begin your new journey.

Best,

Fell

HAIRBEAR_UK
HAIRBEAR_UKFounder Admin

Brian thank you for sharing so much with everyone, Good luck on this new stepping stone, my friend you are a true pioneer and inspiration for us all,

Nick.

You are and always will be “My Doctor “.

You’ve talked me through some rough patches in my life.

If I can repay the favor in any small way, please ask.

If anyone can advance Car-T therapy, it is you.

God bless, you are a true mensch.

Jeff

Newdawn
NewdawnAdministrator

Your ‘we are all in this together’ always resonates with me Brian.

We are certainly all in this together wishing you well and great success.

Newdawn

You remind me of my retired family doctor. He was awarded the family physician for Canada award years ago. You are exemplary as a physician. I will say some prayers for the success of ur treatment.

Best of luck to you and please let us know how it goes. By the way what is CAR-T?

Just adding my good wishes along with the rest Brian. You do so much for us all and it goes without saying that each and every one of us is behind you.

To quote a very inspirational man ‘we are all in this together’

Peggy

Sending you positive thoughts on this new path of your journey. Wishing for a long and deep remission. Your blog has been so helpful and inspirational to all of us with CLL. You are one of my heroes.

Best of luck Brian. Your insights and energy have been a positive force for all of us in the CLL community. We are all pulling for you.

Wishing all the best Brian

Chris

You are a great encouraging role model for us all. Wish you all the best! Thank you for sharing with us.

Thank you for sharing your experiences and CLL journey. Good luck with the next stage. Wishing you all the luck in the world x

Dear Brian,

I am with you in my thoughts,in my prayers.

I want you to succeed. I beleive in you.

Thank you for all

Your friend always!

Olga

Thank you for sharing your next journey. You have done so much for me and the CLL community. When I was diagnosed. Reading your blog and the cllsociety website was instrumental in getting me informed. My best wishes for your new treatment!

Thanks for being an inspiration and a trendsetting example to us all.

May you have peace, healing, wellness, and an easy journey.

To superpower healthy cells!

Leaders lead by example and we are so fortunate to have a leader like you. Thank you so much for all you do and for "taking us in" on your journey. Please thank your family as well since they also make this possible.

All the best to you as you start your next journey - you have many, many people who are invested in your well-being and want you to have a speedy recovery and long lasting remission.

Warm thoughts and will be following you on the CLL Society website!

Good luck and best wishes as you pass through another door on your journey

Heather

All good wishes for this next stage.

Thoughts, prayers and best wishes coming your way. You’ve got this. Thanks for your inspiration. Will be following your journey. We are, indeed, all in this together!

Becky

My thoughts and prayers are with you. Stay Strong. You are a guiding light for the rest of us. I go to MD ANDERSON to see Dr. Weirda and mentioned I follow a cancer site and before I could continue he mentioned your name. You are very well thought of. Thank You for everything you do. Once again my thoughts and prayers are with you. J.R.

Dear Dr. Koffman,

Thank you so much for all you do for those of us with CLL. You are brave and smart and generous. God bless you as you start the new treatment.

Janice

Thank you for sharing your next CLL journey. I have learned so much from you and your advocacy. Great comic book. Compliments to your son also. I will keep you in my prayers. Stay strong. Sally

Dear Brian

I wish you good luck with thisl next, and hopefully last step to a long remission or even cure.

Just one question. Why do you skip Venetoclax?

All the best of health

Reinhard

Wishing you the best results with the least drama! Elaine jacobson

With all my heart, I wish you the best possible outcome.

Ashley

Hi Brian:

Very sorry to hear that you are relapsing. However that is tempered with the knowledge that a new exciting and potential cure is being made available to you. It goes almost without saying, that we all admire you and are grateful for your inspirational courage, knowledge and sense of humour. Thanks for sharing this decision and the ongoing blog which I will be following closely. You will be in my thoughts and prayers. Keep up the good fight. We are all in this with you!

Best wishes.

Peter

So sorry you are relapsing but good luck on the next journey , thanks for sharing your news , sending love and prayers 🙏🏻🙏🏻Julia

Dear Dr. Koffman

Thank you for all you do for those of us with CLL.

WE ARE ALL IN THIS WITH YOU!

Wishing you all the best with this therapy,

Lilica

Wishing you well on your continuing journey. You are an inspiration.

Sending Many Prayers your way Doc.

Nice meeting you again in California. I look forward to your posts and best wishes....

CART is the biggest breakthrough in CLL history and has becoming the biggest hope to eliminate the terrible disease and many others.

You will fine, my best wishes for you. I will pray for you , and be confident that you will be OK.

Thank you so much for what you do Brian! You are definitely a role model for us. Good luck to you and keep us posted!

I will be thinking of you and sending good wishes.

Right back at ya, B. ❤️

bkoffman
bkoffmanCLL CURE Hero in reply to MelindaBates

All is good now. MRD undeniable post CAR-T but a very tough journey.

God bless you. I will be watching your posts. Thank you for sharing with us.

bkoffman
bkoffmanCLL CURE Hero

One year post CAR-T and All is good.

bkoffman
bkoffmanCLL CURE Hero

You can read bout my CAR-T here on my CLL Society blog: cllsociety.org/car-t-blog/

hope all is well and the cart t worked for you and your family

colin from (Scotland)

bkoffman
bkoffmanCLL CURE Hero in reply to colincll10

Doing great 14 months post CAR-T

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