This content was current as of the date it was released. In science and medicine, information is constantly changing and may become out-of-date as new data emerge.
Upcoming CLL Society COVID-19 Event
COVID-19 Virtual Community Meeting: The Delta Variant and Staying Protected is taking place this week! Join us on Friday, September 24th at 9:00 AM PT. The global COVID-19 pandemic continues in the U.S. due to the increased prevalence of the Delta variant coupled with suboptimal vaccination rates. It is critical that CLL patients and their caregivers continue to receive up-to-date and credible information from a spectrum of expert voices. This continuing series provides information to empower our CLL patient and caregiver community to make safe and informed decisions. CLL patients and caregivers can engage in a question-and-answer town hall format with a panel comprised of CLL experts Drs. Deborah Stephens and Nicole Lamanna, infectious disease expert Dr. Sanjeet Singh Dadwal, and virologist Daniel Engel, PhD.
Please submit advanced questions to the panel by emailing firstname.lastname@example.org by Wednesday, September 22nd.
Despite vigilant adherence to the prescribed safety precautions of mask wearing, hand sanitizing, and social distancing, CLL patient Rick Field contracted COVID-19, likely while traveling by plane to or from treatment for his CLL. Please read his story and learn from Rick about how important it is to understand that even vaccinated CLL patients may not be protected from COVID-19, and that we should all be prepared for exactly what we will do in the case of a known exposure or infection. Rick shares what his careful advanced planning entailed, including precisely how he would plan to receive four injections of REGEN-COV monoclonal antibodies should he happen to become exposed. His careful planning and swift action likely spared him from hospitalization and severe disease. Rick Field is co-facilitator of CLL Society’s Sacramento Support Group.
Patient Testimonial: An Excellent Example of How to be Ready in Case of COVID-19 Exposure!
“As a person living with CLL, the information provided by the CLL Society is helpful, timely, based on science and easily understood. In particular, the COVID-19 Planning Checklists are awesome! I have printed, completed, and placed them in my “go bag” just in case I have a known exposure or test COVID positive. The map to find local monoclonal antibodies is my favorite, as it saved me time researching that information and I can update my forms just by inputting the zip code where treatment would be needed.” Teresa K.
Complete CLL Society’s COVID-19 Action Plan checklists in advance of exposure as soon as you can.
Zanubrutinib is an irreversible BTK inhibitor that is similar to ibrutinib and acalabrutinib, both of which are already approved to treat chronic lymphocytic leukemia. Recent trials suggest that zanubrutinib may have advantages for CLL patients over the approved medications. It is already being used “off label” to treat CLL, so this approval changes nothing for CLL patients. Perhaps more hematologists will become familiar with it, making us hopeful that zanubrutinib might be moving closer to approval in CLL. Learn more here.
CLL Patient Tragically Dies From COVID-19 Due to Letting Guard Down After Being Fully Vaccinated.
We are grateful to this young man for drawing attention to the tragic loss of his father, so that others might take heed and be spared the same. Please read his story here.
CAR-T offers a potent therapy for CLL patients who are running out of treatment options, but CAR-T remissions may not be as durable as hoped. At ASH 2020, Dr. Neil Kay explains some preclinical research that hold the promise of improving CAR-T outcomes.
Upcoming Ed Forum
Join us on October 15th for the CLL Society Ed Forum: The Right Tests at the Right Time to learn the basics about testing across the span of your CLL journey. Dr. Ryan Jacobs will discuss at the time of diagnosis, which tests should be performed, which might be avoided, and why. Dr. Brian Hill will discuss the importance of testing before starting your first treatment, and prior to every subsequent treatment. Know which tests you absolutely must have, which we strongly advise through CLL Society’s Test Before Treat™ campaign. Two patients will share their stories about the importance of getting the right tests completed prior to choosing treatment. Finally, learn how CLL is monitored over time, and how the evolving role of MRD (measurable residual disease) testing may help determine when to stop therapy for CLL.
Paid Survey Opportunity
Pillar Patient Advocates, LLC is interested in speaking with both caregivers and CLL patients who have been diagnosed within the last 5 years and are either treatment experienced or treatment naïve. This study involves completing a 5-day online board, participants will be asked to spend approximately 20-30 minutes per day at their convenience. In appreciation, participants are paid $250 for their time and input. Find out more here.
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.