Even though Shelter in Place restrictions are being relaxed in many locations, please remember that all CLL patients are immune compromised and at higher risk for infection. Stay safe.
ASH 2019 Conference Coverage
This week’s conference coverage feature comes from Dr. Brian Koffman’s ASH 2019 interview with Dr. Michael Choi updating us as to what is known about the effects of the combination of cirmtuzumab and imbrutinib and other means of striving for the suppression of ROR1 antibody.
CMS Proposes better reimbursement for CAR-T.
The CLL Society has been advocating to improve access for patients with Medicare and Medicaid who need CAR-T therapy. Last week we received the good news that CMS has made a proposal to improve payment for CAR-T. While CAR-T is still experimental for those of us with CLL and therefore not yet applicable to us, we celebrate this victory with our fellow blood cancer patients.
Progress in CAR-T therapy
Progress shown in the Phase 1b/2 CARTITUDE-1 study of CAR-T therapy in Multiple Myeloma bodes well for all blood cancer patients. Please read about the study here.
CLL Society’s Scientific Abstract
The CLL Society is pleased to share our published research from the European Hematology Association Annual Congress, IMPACT OF CLL SOCIETY’S (CLLS) FREE EXPERT ACCESS PROGRAM (EAP) FOR CHRONIC LYMPHOCYTIC LEUKEMIA (CLL) PATIENTS (PTS)
It’s always important to have your “medical” house in order and in these times of increased health risk, it is good to double check that directives for you and your loved ones are communicated and in place. Please visit our planning ahead section of the website for information on power of attorney, living wills, and physician order for life-sustaining treatment (POLST). You can also find additional information and resources on palliative care and hospice care.
Have a great week.
We are all in this together.
Co-Founder & Communications Director
CLL Treatment Decision Tool
The CLL Society worked with Clinical Care Options to put together some helpful patient materials including this basic CLL treatment decision tool to get you thinking about what options to discuss with your doctors.
Test Before Treat™
Stories from our readers highlight the importance of proper prognostic testing. Read here. Request a free bright red Test Before Treat™ reminder bracelet. Tell us how testing before treatment, or lack thereof, influenced your CLL management at email@example.com.
CLL Society Support Group Meetings Coming Up!
CLL Society Support Group meetings are moving 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 the link to the specific location below. Once it is safe again, we will resume in-person meetings.
Chicago CLL Support Group – May 19 @ 7:00 pm
Portland CLL Support Group – May 20 @ 6:00 pm
Twin Cities CLL Support Group – May 21 @ 7:00 pm
New Jersey CLL Patient Support Group – May 21 @ 7:00 pm
Nashville CLL Patient Support Group – May 23 @ 12:00 pm
Northeast Ohio CLL Patient Support Group – May 26 @ 7:00 pm
New Orleans and Surrounding Areas CLL Support Group – May 27 @ 6:30 pm
Rochester NY CLL Support Group – May 27 @ 7:00 pm
Seattle and All Points North CLL Support Group – May 28 @ 6:00 pm
Boston CLL Patient Support Group – May 30 @ 1:00 pm
San Diego CLL Society Support and Education Meeting – June 3 @ 4:00 pm
Visit the individual event listings on our website for the most up-to-date information on all CLL Society Support Group meetings.
Other Virtual Events
Wednesday, May 20, 2020 at 12 PM ET
Join Coalition for Clinical Trials Awareness for the webinar, COVID-19 and Clinical Trials: Treatments, Vaccines and Cures with Raymond Goodrich, PhD with Infectious Disease Research Center at Colorado. Learn more and register here.
Lymphoma Research Foundation Meetings
Thursday, May 21, 2020 at 6:00 PM EDT / 5:00 PM CDT / 4:00 PM MDT / 3:00 PM PDT
VIRTUAL – Ask the Doctor About Lymphoma: Updates on Lymphoma and Treatment Options with Drs. Brian Hill and Allison Winter with Cleveland Clinic. Learn more and register here.
Tuesday, June 2, 2020 at 5:00 PM EDT / 4:00 PM CDT / 3:00 PM MDT / 2:00 PM PDT
VIRTUAL – Ask the Doctor About Lymphoma: Updates on Lymphoma and Treatment Options with Dr. Craig Okada at Oregon Health and Science University Hospital. Learn more and register here.
The Leukemia & Lymphoma Society Meetings
Thursday, May 21, 2020 at 1:00 PM ET / 12:00 PM CT / 11:00 AM MT / 10:00 AM PT
VIRTUAL – Join LLS for CHRONIC LYMPHOCYTIC LEUKEMIA (CLL): WHAT ARE MY TREATMENT OPTIONS? with speaker Jennifer Woyach, MD with The Ohio State University. Learn more and register here.
Please be advised that all of their Living Well with CLL programs have been postponed through May 15th. Visit LLS.org for more information.