It was a nice long run and far exceeded the average duration of response to CAR-T in CLL, but as we all have grown to accept, essentially all therapies in CLL are palliative. If you live long enough, most but not all of us will eventually relapse. Sad but true.
You can follow my journey and my personal reasoning for my choices on my blog on the website: cllsociety.org/living-with-... Please follow along and stay connected. It means a lot.
It's nice to be blogging again. The CLL Society (CLLSociety.org) was born of two parents: my now mostly dormant blog that led to the website and the living room meetings of CLL patients and care partners that grew into 40+ CLLS support groups.
I won't be posting frequent updates here or on other forums, but will try to blog on the website when the steroids and the Benadryl and the fire alarms and the frequent vital sign checks and the blood draws give me a break. I'm pretty tired and sleep deprived.
Halfway through the ramp-up of epcoritimab, a novel bispecific monoclonal T-cell engine antibody, and hopefully heading home later today. No adverse events other than not sleeping. Back in hospital for the next dose in 5 days. I am the first US CLL patient in this protocol. Talk about bleeding edge.
Thanks to everyone who sent me their prayers and such kind notes of support and encouragement. I feel so lucky to have such friends around the world.
Stay strong, we are in this together
Brian
Written by
bkoffman
CLL CURE Hero
To view profiles and participate in discussions please or .
You are the Babe Ruth, Michael Jordan, and Wayne Gretsky of bringing straightforward useful information to a very complicated and heterogeneous disease – and for all of us, we are very, very grateful. We are all rooting for you, and though there will be inevitable ups and downs in this new process I am quite confident you will hit another home run. As you often state: “Smart Patients Get Smart Care”. All the Best!!
Thank you for keeping us up to date and for being out there on the cutting edge for all of us Dr. Koffman. I followed you throughout your CAR-T journey and will be following you through this new journey. You are such an inspiration and I pray that you have great success with this new treatment.
Brian I just want to add a silly aside and I am so impressed that you seem to be managing that contraption like a shopping trolley. I always keep my legs crossed when doing my monthly IVIG.
I am so grateful to you for all the education, dedication, resources and hope you have given me. Know that your "army" of supporters are with you always.
It is great to hear that you have had no adverse effects with epcoritimab. A five day rest from not sleeping in the hospital sounds good as well. Best wishes!
I am definitely sending you positive thoughts and prayers. ‘CLL Hero’ is the right adjective for you, and words can’t express how much I appreciate the work you have done (and will keep doing!) to make CLL manageable for us ‘next generation’ folks.
You are the soldier of soldiers among us! As I await the completion of the last year on venetoclax in the V+R comparator arm of the Bruin trial, I think of you often. As we all move along the path, I am regularly reminded of the importance finding opportunities for gratitude. You are a premier one of those opportunities. You have been in the vanguard of my journey and a constant reminder to be grateful for your presence and Churchillian ‘never, never give up’. God speed, friend.
Hi Brian wishing you all the very best! My journey with Loxo is coming to end and hope to meet with NIH group to see if their Bispecific Antibody trial would be a fit. Will be following you like skin hope you can get some rest . Fran G.
Just adding my good wishes for a successful outcome- I admire you for taking the time to care about us all and add your knowledgeable comments when needed …
Hope the treatment goes easy and that you’ll be able to continue enjoying good health going forward !
Brian, my deepest best wishes and heartfelt prayers for you today and always ❤️. Thank you for all you have done for our community. You are a brave trailblazer. As you say, "We're in this together". It keeps us all strong. We are all here for you! God bless you, our dear Dr Koffman. 🙏
Sending the very best wishes to you Brian! I was reading your new blog and you continue to offer not only groundbreaking information but also an abundance of inspiration! I look forward to following your new journey toward another very long remission
My wife went thru Ibrutinib, brukinsa and now venetoclax ( successful so far ) but i'm looking for potential next step. So could you please share with us why you decided to go with epcoritimab?
I am very grateful and encouraged by your giving efforts. You have provide so much substantiated hope for the CLL community, and your perseverance inspires us to pursue our inner strengths.
Dear Brian, thank you for always being so inspiring! Good luck with your treatment!
You gave me so much hope when I was first diagnosed! I had such terrible fatigue, and my first consultant dismissed it. I saw your article on CLL related fatigue and it made me so optimistic!
Brian you are the definition of hope for those of us with CLL. Five years ago today I lost my husband with AML. Today I think about what if he had the choices we have today. There are so many new scientific and drug discoveries that benefit us that were not an option just a few years ago. Best of luck with your new treatment. I am another person who will follow you closely.
Thank you, Dr. Koffman, for letting us walk with you as you continue your journey. Sendin you positive thoughts and prayers for a successful outcome in this clinical trial.
You mean very much to so many people. We are so grateful. ❤️
Thank you Dr Koffman for updating us of your latest pioneering journey into the world of CLL treatment . I read your blogs and yours, amongst others, gave me confidence to go forward with CAR-T therapy. I am sorry your remission has come to end but I wish you every success in your latest trial. You are indeed a trail blazer.
Hi Brian, Thank you for sharing so much of your journey. None of us expected this trip to be interminable. With your strength and generosity, you continue to be a beacon of hope. You’ve got this. All will be well. Keep IVY dancing! xox
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
CAR T Therapy
