March 22, 2019 was my one year anniversary of receiving my experimental CAR-T cells in Seattle.
About a month earlier, I got the great news that I remain U-MRD4 in the peripheral blood- no CLL to be found. Read more here: cllsociety.org/2019/03/one-...
Also this week, I posted a brief ASH 2018 interview with Dr. Siddiqi that hits the important practice changing data that emerged from ASH 2018. See: cllsociety.org/2019/03/ash-...
Enjoying a total of two weeks at home before I head to Bethesda for our educational forum at the NIH on April 5. Hope to see some of you there.
Stay strong.
We are all in this together.
Brian
Brian Koffman MDCM DCFP, DABFM, MS Ed
Co-Founder, Executive VP and Chief Medical Officer
CLL Society, Inc.
PO Box 1390
Claremont, CA 91711
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bkoffman
CLL CURE Hero
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Wonderful news Brian! Thank you so much for keeping us up to date on your journey and helping us to uderstand what is available to us in the realm of treatment options.
I pray for your continued healing in the months and years to come.
I have a blog post that deals with my thought process.of choosing CAR-T instead of Venetoclax. Briefly CAR-T left the V option open. It was less clear if I failed V that I could do CAR-T.
Okay thanks. I thought I had read all your blog posts on that, I must have missed that one. It must have been a very tough choice for you at the time (and a courageous choice I might add). It appears to have been a great choice as well, you are mrd negative and still have venetoclax in your back pocket.
Thanks again for all the work you put into Cll society, it’s a great resource for us all. Let me know when you have your next site fundraiser, I would like to be a regular contributor. Jeff.
One can only hope, but I won't know for sure that I am cured until I die of other causes hopefully decades from now. Seriously, what I am still U-MRD at 5 years, it is starting to smell a lot like a cure.
Don't know. If we are less immune suppressed, then probably yes, but that is far from certain and is very dependent on what method was used to get to undetectable disease.
Thank you for keeping us up to date on your wonderful and fantastic news! I too am optimistic that you and other patients with undetectable levels of their specific cancer cell clone, or better yet any clone specific DNA sequence, are indeed cured. If these tests continue to come back negative over time as they have for you, then the question for me is how to get healthy levels of B-cell lymphocytes differentiated from the Hematopoietic Stem Cells?
Hello Brian, I am so please that you are still going strong after your initial CAR-T treatment a few years ago. If you are able, I wonder if I could ask you a question. My partner is seeing his Consultant on Monday to get the low-down on the start of his CAR-T cell treatment in October. I just wanted to know what questions he should be asking his Consultant? If I leave it to him, he wouldn't ask anything at all!! What are the things we really need to know? Any help you can give will be most appreciated. Take care, x
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