If you are newly diagnosed, or have been in asymptomatic Watch and Wait status, this week’s Alert will direct you to accelerated learning:
Today’s Webinar with Dr. Neil Kay – “Just Diagnosed… What do I Need to Know?” at 10 AM PT / 11 AM MT / 12 PM CT / 1 PM ET. Find out everything you need to know, from A – Z for those newly diagnosed with CLL, including what to watch out for, the prognostic testing you need, and how to stay healthy. Register here.
As with all of the CLL Society’s Webinars, Dr. Kay’s Webinar will be archived for future viewing under Archived Educational Activities.
Dr. Brian Koffman and Dr. Deborah Stephens discuss the German CLL 12 Study, which is investigating the novel and evolving view that certain high-risk CLL patients may benefit from early intervention with ibrutinib.
We have known since ASH 2018 that ibrutinib or ibrutinib in combination with rituximab were superior in terms of progression free survival in untreated young fit CLL patients. Now both ibrutinib or ibrutinib with rituximab are approved therapies. Read here.
CAR-T is a potent and helpful option for many blood cancer patients, but Medicare and Medical insurance coverage can be an obstacle to care. The CLL Society united with other blood cancer organizations to petition CMS to arrange for appropriate payment so that all may have the opportunity to benefit from this breakthrough therapy. Here is the letter we sent.
If your CLL has progressed to a stage where treatment has been recommended, but you have not had the advantage of a consultation with a CLL Expert, please consider signing up for our Expert Access Program which provides a free, HIPPA-compliant virtual 2nd opinion from a world-class CLL expert. Learn more and sign up here.
At the CLL Society, springtime is witnessing the blossoming of new CLL Support Groups, as well as the robust transition of our ongoing groups from live meetings to Zoom. Contact the Support Group leader near you and join in!
Meanwhile, stay safe.
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 basicCLL treatment decision tool to get you thinking about what options to discuss with your doctors.
Patient and Caregiver Educational Forum Updates
All Patient and Caregiver Educational Forums have beenpostponed due to the threat of coronavirus.
Visit our website for the most up-to-date information on all CLL Society Patient and Caregiver Educational Forums.
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 firstname.lastname@example.org.
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.
Northeast Ohio CLL Patient Support Group – April 28 @ 7:00 pm
New Orleans and Surrounding Areas CLL Support Group – April 29 @ 6:30 pm
Denver CLL Patient Support Group – April 30 @ 6:30 pm
San Diego CLL Society Support and Education Meeting – May 6 @ 4:00 pm
Long Island CLL Support Group – May 7 @ 6:45 pm
Houston-area CLL Support Group – May 9 @ 10:00 am
Seattle-Olympic Peninsula CLL Support Group – May 9 @ 1:00 pm
Orlando CLL Support Group – May 9 @ 2:00 pm
Philadelphia CLL Patient Support Group – May 9 @ 2:00 pm
Atlanta Metro CLL Support Group – May 9 @ 3:00 pm
Toronto CLL Support Group – May 11 @ 7:00 pm
The Orange County CLL Support Group – May 12 @ 7:00 pm
Visit the individual event listings on our website for the most up-to-date information on all CLL Society Support Group meetings.
April 30, 2020 from 4:00 – 5:00 PM EDT
Join CancerCare Connect® Education Workshop Series for people living with chronic lymphocytic leukemia, their families, partners, caregivers, friends and health care professionals. Patricia Koffman, Co-founder and Communications Director of CLL Society will be speaking, along with featuring Drs. Jennifer R. Brown and Mazyar Shadman, and Social Worker Carolyn Messner. Listen to this workshop over the telephone or connect to our webcasts online. Find out more information and register here.
April 30, 2020 from 2:30 – 4:30 PM ET
Join The Lymphoma Research Foundation’s (LRF) webinar with Drs. Danielle M. Brander and Deborah Stephans, Update on Chronic Lymphocytic Leukemia/Small Lymphocytic Lymphoma, for an overview of Chronic Lymphocytic Leukemia/Small Lymphocytic Lymphoma (CLL / SLL) and treatment options. Find out more information and register here.
Lymphoma Research Foundation Meetings
Please be advised that all of their Ask the Doctor programs have been postponed due to the threat of coronavirus. Visit the LRF site for more information.
The Leukemia & Lymphoma Society Meetings
Please be advised that all of their Living Well with CLL programs have been postponedthrough May 15th. Visit LLS.org for more information.