May 12, 2020

Dear Readers,

Helping you attain and sustain good health and providing you with the information to advocate for your best care are our highest priorities.

We hope you are all staying safe and remembering to check in often, as COVID-19 content is being added to the CLL Society’s COVID-19 Updates page almost daily. Among the highlights, the CLL Society is proud to have published in the American Journal of Hematology a peer- reviewed survey outlining how CLL experts are handling disease management during the COVID-19 pandemic in an effort to help inform physician best practices.

Funds Available

Are you immunocompromised, reluctant to go out for fear of COVID-19 exposure, and need help paying for food? The CLL Society would like to share with you details of theCOVID-19 Emergency Food Assistance Program. Patients with an identified financial need can apply for a one-time grant of $500 to help pay for food and other nutritional items. Other potential benefits include delivery of food and other critical supplies directly to your place of residence by one of Team Rubicon’s (mostly military veteran) volunteers. Find out more and apply here:https://teamrubiconusa.org/applynow/

Article on Telehealth by Dr. Brian Hill

Please take a moment to look at Dr. Brian Hill’s (Cleveland Clinic) advice on managing CLL during the COVID-19 pandemic and some thoughts on the role of telemedicine.

ASH 2019 Conference Coverage:

How to best sequence CLL drugs is a work in progress.

In this ASH 2019 interview, Dr. Brian Koffman speaks with Dr. Jennifer Brown about treating CLL patients who have relapsed on venetoclax with a subsequent course of ibrutinib.

Requests for Your Stories for the CLL-Tribune

Patient articles bring unique first-hand, eye-witness accounts of living with CLL to our readers. Are you having or have you had MRD testing? Have you completed CAR-T therapy? If so, we invite you to share your story with your fellow CLL patients and their caregivers for publication in upcoming Special Editions of the CLL Tribune, our quarterly newsletter; please reach out to us by emailing support@cllsociety.org.

Keep in touch.
Stay strong.
We are all in this together (even when social distancing!)

Patty

Patricia Koffman
Co-Founder & Communications Director
CLL Society

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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 basicCLL 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 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.

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

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

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 postponedthrough May 15th. Visit LLS.org for more information.