May 5, 2020

Dear Readers,

We see physicians at their finest when they step to the forefront to fill a gap in knowledge during times of uncertainty. The CLL Society is proud to have taken a leadership role in producing Management of CLL Patients Early in the COVID-19 Pandemic: An International Survey of CLL Experts published in the American Journal of Hematology.

In our ASH 2019 interview with Dr. John Pagel, we learn that PI3 kinase inhibitors are potent medications that control CLL, but their widespread adoption has been slowed by their potential side effects. Dr. Pagel discusses using intermittent dosing to maintain the benefits while reducing the risk with this important class of drugs.

CAR-T is a potentially lifesaving option for some CLL patients, but Medicare reimbursement may put it out of reach. The CLL Society is part of a working group comprised of many blood cancer nonprofits that are trying to find a long term remedy for how to pay for this therapy. Read more.

In this CURE Magazine Interview, Dr. Koffman highlights the hidden benefits which come as a bonus of the required Social Distancing as CLL Society Online Virtual Support Groups blossom into caring communities!

What is MRD Testing? When is it Done? What can it tell us? Find out how Dr. Koffman relied on the results of his post-CAR-T clonoSEQ MRD testing in his decision to stop taking ibrutinib after nearly 8 years. Watch Dr. Koffman’s story here.

And finally, it’s GIVING TUESDAY!

CLL Society is participating is #GivingTuesdayNow, a global day of generosity and unity, a day to come together and give back in response to the unprecedented need caused by COVID-19. We are working hard to bring you support services, information, and educational resources. If CLL Society has helped you or a loved one, please consider making a donation.

Stay safe.

Stay strong.

We are all in this together!

Patricia Koffman
Co-Founder & Communications Director

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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.

Patient and Caregiver Educational Forum Updates

All Patient and Caregiver Educational Forums have been postponed 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 support@cllsociety.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.

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

Cincinnati CLL Patient Support Group – May 13 @ 6:00 pm

Denver CLL Patient Support Group – May 13 @ 6:30 pm

Raleigh Area CLL Patient Support Group – May 13 @ 7:00 pm

Sacramento CLL Patient Support Group – May 14 @ 6:30 pm

Western North Carolina CLL Patient Support Group – May 16 @ 10:00 am

Central Florida CLL Support Group – May 16 @ 10:30 am

West LA CLL Support Group – May 16 @ 11:00 am

Oberlin, OH, CLL Patient Support Group – May 16 @ 1:00 pm

Washington DC-area CLL Patient Support Group – May 16 @ 3:00 pm

New York City CLL Support Group – May 17 @ 3:00 pm

DFW – Dallas Area CLL Patient Support Group – May 17 @ 3:00 pm

San Francisco area CLL Patient Support Group – May 17 @ 4:00 pm 

City of Hope CLL Support Group – May 18 @ 7:00 pm 

Chicago CLL Support Group – May 19 @ 7:00 pm

Portland CLL Support Group – May 20 @ 6:00 pm

Visit the individual event listings on our website for the most up-to-date information on all CLL Society Support Group meetings.

Lymphoma Research Foundation Meetings

Thursday, May 14, 2020 at 4:00 PM EDT / 3:00 PM CDT / 2:00 PM MDT / 1:00 PM PDT

VIRTUAL – Ask the Doctor About Lymphoma: Updates on Lymphoma and Treatment Options with Arushi Khurana, MBBS at Mayo Clinic. Learn more and register here.

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.

The Leukemia & Lymphoma Society Meetings

Please be advised that all of their Living Well with CLL programs have been postponed through May 15th. Visit LLS.org for more information.