News You Can Use
We are sharing a reminder that if you decide to receive a test to see if antibodies to the COVID-19 vaccine are present, please make sure you receive the one that is specifically looking for the “spike protein.” When Dr. Koffman first requested this test after his vaccination, the wrong test was performed. How will you know if you have gotten the correct test? Your lab result will have the word “spike” in it.
Your doctor appointments offer opportunities to receive updates on disease status, information about treatment options, education, and sound guidance. The degree to which you prepare can affect the outcomes. Attend our upcoming webinar and learn some tips about how to stay on top of your game!
Join the CLL Society Webinar: Getting Maximum Benefit from Doctor Appointments on May 27, 2021, at 10:00 AM PT, 11:00 AM MT, 12:00 PM CT, and 1:00 PM ET. Becky McAlpin, a Nurse Practitioner with many years of experience in clinical trials, will tell us why the information that is brought to healthcare appointments is critical for healthcare providers to accurately evaluate current disease status and provide patients with the best possible care. Steve Delesie, who is a caregiver, will share how both patients and caregivers can succinctly organize the most relevant portions of the medical history so that pressing questions are communicated to healthcare providers.
Dr. Paul Barr discusses which BTK inhibitor works best in combination with rituximab. At the annual meeting of the American Society of Hematology (ASH) 2020, our own Dr. Brian Koffman interviewed Dr. Paul Barr, an Associate Professor of Medicine at the Wilmot Cancer Institute in Rochester, NY. They discussed the interchange between various BTK inhibitors and rituximab. Learn more here.
CDC Graphic Guidance on Choosing Safer Activities During the COVID-19 Pandemic: How it Applies to CLL Patients
COVID-19 is unfortunately still with us. Please remain vigilant and stay informed! While nothing is 100% safe, many are asking if there are any acceptable risks post-vaccination for CLL patients? See the guidance CLL Society and the CDC provide guidance on Choosing Safer Activities During the COVID-19 Pandemic.
CLL Society’s Interest Poll for Funding a CLL-Specific Research Program
Despite advancements in the treatment landscape, we know that CLL is not a solved problem. In the past, CLL Society has served in a supportive capacity for other organizations that are funding blood cancer research. Now, CLL Society is dreaming big! We are considering the possibility of funding our own CLL-specific research program and would like to hear from you. Please answer three short questions that will help us gain a better understanding of what areas of CLL research are most important to those we serve.
Survey: How Do You Make Treatment Decisions?
There are a variety of ways in which CLL patients make decisions when considering treatment options. How would you best describe yours? Let us know by taking our survey.
Help You Need When You Need It!
- LLS $8,000 Co-Pay Assistance Programis open to CLL patients. Learn more about this program and other sources of financial assistance here.
- CLL Society’s Expert Access™ Program, a no-cost, expert 2nd opinion consultation is open; learn more and apply here.
- CLL Patient & Caregiver Support Groups are herefor you. Don’t spend another month alone!
Instant Replays On-Demand
If you missed CLL Society’s CAR-T Ed Forum: The Basic Science and Latest Data on April 21st, please consider watching it on demand. Drs. John Pagel and Tanya Siddiqi strengthened our understanding of CAR-T and other promising CLL therapies. CAR-T patient Dr. Larry Saltzman, and his caregiver/wife Sharon, shared their real-life experience.
There is also still an opportunity to watch CLL Society’s COVID-19 Virtual Community Meeting: Contagion, Variants, and Vaccines from March 26th. Infectious disease specialist Dr. Sanjeet Dadwal, CLL experts Drs. Steven Rosen and Alexey Danilov, and lab scientist Dr. Susan Leclair brought us up to date on the evolving COVID challenge as it impacts CLL patients.
Please Support CLL Society
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.