September 1, 2020

Although the challenges put before us by the continuing pandemic are serious enough to warrant our full attention, the CLL Society is holding fast to its mission, first and foremost, to meet the needs of our CLL patients and caregivers that have been caused by the disease itself.

To that end you will find, through our weekly Alerts, October 10^th Virtual Global Patient Education Forum, autumn and winter Special Edition Tribunes, and upcoming Conference Coverage of Virtual ASH 2020, that we are continuing to follow the science, fortify your knowledge, and strengthen our CLL community. Read on.

CLL Society 2020 Patient Survey about MRD testing and Limited Duration Therapy 

CLL care is rapidly evolving. Patients are more frequently being offered limited (fixed) duration treatments and/or being tested for MRD status. CLL Society wants to know about your awareness, understanding and preferences concerning these options. Whether you have expert knowledge or are a complete novice on this topic, completing this survey will help us better plan future education, research and support.

You are invited!
Registration Open! Global Virtual Patient & Caregiver Educational Forum on October 10

We can’t come to your city for a live local meeting, so we’ve gathered the top CLL experts, wise patients, and others from across the country for a day packed full of CLL education and support on Saturday, October 10. Learn more and register here!

Conference Coverage. End of suspense!
Here is Dr. Koffman’s “ASCO 2020 #1 Pick”

Dr. Koffman highlights the CLL 14 Trial, a study looking at fixed-duration venetoclax-obinutuzumab for previously untreated patients with chronic lymphocytic leukemia (CLL).

Usefulness of MRD testing explained! 

ASH 2019 MRD Testing: Dr. Chaitra Ujjani’s short video explains the concept of MRD testing and its potential value in predicting progression free survival.

Webinar: Expert Perspectives on Incorporating BTK Inhibitors into the Treatment Plan for Patients with CLL on September 3

Don’t miss US Military Veteran Bruce Wright, a CLL patient and CLL Society Senior Support Group Advisor on September 3 at 10 AM PT / 1 PM ET as he joins Dr. Parameswaran Venugopal in a discussion of the clinical use of BTK inhibitors for the treatment of CLL, as well as how patients can best equip themselves with the appropriate knowledge to make informed decisions with their care providers. Bruce will speak to some of the challenges that are specific to veterans seeking treatment, as well as how patients and caregivers can increase their knowledge about CLL and become more involved in their treatment decisions. Learn more and register here.

A free medication? Dr. Koffman explains!
From the Business World: The monoclonal antibody ofatumumab is now free of charge to CLL patients. Genmab Announces Plan to Transition Arzerra® (ofatumumab) to an Oncology Access Program for Chronic Lymphocytic Leukemia Patients in the U.S.

CLL Society’s Updated Official Statement Concerning CLL Patients Working and Traveling During the COVID-19 Pandemic 

Worried about going back to work? As the COVID-19 pandemic stretches on, we have updated our official statement concerning work and travel for people with CLL that you can download for your own reference and to share with the appropriate people in your life, including your health care provider, HR, co-workers, extended family and friends.

Archived Webinar from Cancer Coach Live “What You Need to Know about BTK Inhibitors as Treatment for Your/Your Loved One’s CLL” 

Now available on-demand, the August 10 Cancer Coach Live webinar, featuring CLL expert Dr. Matthew Davids, Associate Professor of Medicine Harvard Medical School, Nurse Practitioner Josie Montegaard, and CLL patient, frequent patient panelist, and CLL Society Tribune contributor, Doreen Zetterlund, promoting meaningful and productive dialog between patients and HCPs as relates to CLL treatment regimens incorporating BTK inhibitors. Watch the recorded webinar here.

Friday, September 4 – World Leukemia Day

In honor of World Leukemia Day, please consider supporting CLL Society in our work towards shaping a smarter, brighter future for those with CLL and related B cell blood cancers by encouraging and supporting smart patients, providers, clinical trials, research, healthcare delivery systems, and therapies.

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.