Urgent Message from Dr. Brian Koffman
Give your family and friends the best gift: Stop the spread of COVID-19! With vaccines on the horizon, we are so close to controlling this pandemic, but let’s not endanger ourselves or others during the current catastrophic surge. The COVID-19 virus needs you to carry it to its next victim. The best gift you can give to your family and friends over the holidays is ensuring their safety by keeping your distance. Please watch this video messagefrom Dr. Brian Koffman and claim your critical role in the campaign to shut down the spread of this virus. We have confidence in you. Thank you!
Now, on to happier things!
Our CAR-T Special Edition Tribune was emailed out on Thursday, December 17 and was entirely devoted to broadening your understanding of CAR-T therapy, which we hope will soon become an FDA approved treatment option for CLL patients. We are proud of this publication and believe it rewards a thorough cover-to-cover reading, but for the sake of brevity, we are showing a cross-section of offerings here.
Before you begin:
New to learning about CAR-T? Need a refresher? Catch up and get your bearings by dropping in on CLL Society’s November 17 webinar “The Future of CAR-T Therapy: Can CAR-T Cure CLL?” to find out what the excitement is all about. Dr. Joe Fraietta shares his educational slide set, the authority of his long research and clinical experience, and his limitless dedication to moving CAR-T science forward. You will be in-the-know and ready to go, so come on back over here for the deeper dive below.
Ready for the Deep Dive?
“Off-the-Shelf” CAR-T Cells
Many patients come to CAR-T therapy when they have run out of viable treatment options, so efforts are being made to shorten the manufacturing time. This will involve creating universal “off-the-shelf” living drugs. Will they be quicker, healthier, or cheaper? In this 2019 iwCLL interview, CAR-T pioneer Dr. David Maloney explains the hope for the development and future use of “off-the-shelf” CAR-T cells for Chronic Lymphocytic Leukemia (CLL).
Understanding the Biology of CAR-T Therapy
Dr. Acharya took amazing care of Dr. Brian Koffman when he had the successful CAR-T therapy that eradicated his disease in the Spring of 2018 at the Fred Hutch in Seattle, WA. Dr. Acharya writes a somewhat advanced article explaining why there is so much excitement about therapies that use living cells and speculates as to where that therapy is headed. This article may be a bit intimidating for those new to the language of CAR-T and immunology, but even if you fall short of understanding every phrase, we believe it is well worth the read.
Got Questions? Did you ask our Doctors? Almost 100 people did!
Ask the Experts!
Answers to a broad spectrum of CLL patient inquiries were provided by Dr. Richard Furman of Weill Cornell Cancer Institute and published in CLL Society’s 4th Quarter 2020 Tribune. Is your burning question answered here? Check it out!
CAR-T-specific questions submitted by readers were answered by Dr. Brian Koffman and the CLL Society Medical Advisory Board, here.
Medication-related questions were taken by Tom Henry, pharmacist and CLL patient, here.
Calls for lab result interpretations were happily responded to by Laboratory Scientist Dr. Susan Leclair, here.
Our CAR-T Special Edition Tribune also contains 4 well-told stories about the CAR-T patient experience. Please read all 4.
Laurie Adami tells the riveting tale of her diagnosis at the age of 46 with stage IV follicular non-Hodgkin lymphoma, an incurable blood cancer, after years of consulting doctors who were either baffled by, or just plain off-base in their assessment of her presenting symptoms. In March 2018, after enduring and failing multiple therapies, Laurie entered a CAR-T clinical trial. Find out what happened! Hint: Plans are in the works for a fundraising climb to Mount Everest Base Camp.
MRD Knowledge – We Want to Hear from You!
Help us to understand the depth of your knowledge, attitude, and preferences concerning MRD (measurable residual disease or minimal residual disease) and limited duration (also known as fixed duration) therapies. If you haven’t done so already, please complete the MRD / LD Survey Here!
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What makes the CLL Society smart?
Brains. BScs, DOs, PAs, RNs, MDs, PhDs… Hundreds of ground-breaking CLL-focused clinical trials, and hundreds of thousands of hours of compassionate clinical care inform CLL Society’s Medical Advisory Board. How many of these physicians, researchers, and visionaries do you recognize? This is where we get our brains.
As we draw near to the close of the year, please consider that 2020 has been, by all measures, a challenging year, and your generous support has allowed CLL Society to be there for you! We still have a lot of work ahead of us and we will continue to need your support.
CLL Society is the only CLL-specific, physician-curated public charity dedicated to meeting the unmet needs of CLL patients and their caregivers which holds the GuideStar Platinum Seal of Transparency.
We are all in this together.
Co-Founder & Communications Director
CLL Society Support Group Meetings Coming Up!
CLL Society Support Group meetings have moved to a virtual platform for most locations due to the threat of coronavirus. Support group members will receive an invitation to register for the meeting from the support group facilitator. If you are new to the group, please contact the RSVP email for the Support Group in your region. Once it is safe again, we will resume in-person meetings.
Visit the individual event listings on our website for the most up-to-date information on all CLL Society Support Group meetings.