December 29, 2020

Dear Readers,

Season’s Greetings!

As 2020 draws to a close, let’s allow some ASH 2020 revelations to bring us good cheer!

We reviewed dozens of combinations of experimental and approved novel agents, some demonstrating amazing 100% overall response rates and showing that disease progression was rare in the majority of patients who reached uMRD. We learned that there is life after progression on venetoclax, as it may work again when given a second chance. We learned that CAR-T cells may soon have an important place in treating CLL, with fewer toxicities and that many patients are having durable responses. We learned of so many promising new experimental drugs, some of which don’t yet have names. Stay tuned for in-depth reports in 2021.

COVID-19

Below are some of the many tools created by the CLL Society this year which should be kept handy and top-of-mind to best meet COVID-19’s ongoing challenges.

1. Please heed Dr. Brian Koffman’s Urgent Message: Prevention is the best medicine.
2. Unmasking the Mystery of Masks:Many popular masks are useless in the prevention of the spread of COVID-19. Find out which ones are most effective.
3. Do I Need a Pulse Oximeter?Learn to read your own blood oxygen level with this simple at-home device. Find out what reading warrants immediate hospitalization.
4. CLL Society’s Official COVID-19 Triage Statement informs healthcare providers of CLL patients’ unique vulnerabilities to COVID-19 and our higher risks of serious complications. It may help you to be attended to faster should you have any COVID-19 symptoms, need to be hospitalized, or want early access to a COVID-19 vaccine. Please print it out and take it with you.
5. Koffman on COVID-19 Vaccines: read more.
6. The COVID-19 Managing Re-Entry Sectionof the website features several videos addressing how we can improve interactions with those outside our immediate “bubble” for greater safety. You may want to pay particular attention to Dr. John Byrd’s Educating the Household for tips on improving odds that COVID-19 is not brought home to CLL patients. Read more.

From ASH 2019 

Dr. Constantine Tam’s ASH 2019 (Orlando) monologue informs us that the BTK inhibitor zanabrutinib, still in clinical trials, is more specifically targeted than ibrutinib, and therefore better tolerated. Zanabrutinib is only approved in the US for mantle cell lymphoma, but its use “off label” has recently been added to the well-respected NCCN guidelines for CLL. This is the same path that ibrutinib followed a few years back. Read more.

Patient Stories from The CLL Society Tribune: CAR-T Special Edition

This week we are highlighting three patient CAR-T stories from The CLL Society Tribune: CAR-T Special Edition,which was emailed to our newsletter contact list on December 17th and can be accessed on our website here. These accounts of the CAR-T patient experience serve as a reminder that while for many, CAR-T therapy has chased their CLL so far into remission that it feels like a cure. But there remains much to be learned about cytokine release, neurotoxicity, and the persistence of disease. We thank the following writers for bringing us an inside look at their CAR-T experience, which broaden our appreciation of its challenges.

Bob Levis is a two-time CAR-T CLL patient, a CLL Society Board member, and a well-informed strategist training his watchful eye on developing research and drugs currently in clinical trial. Bob’s persistent CLL causes him to experience minor symptoms as it lurks at a low level of detection. He gives a glimpse of his evolving strategy here.

Dr. Larry Saltzman does not let lingering side effects dampen his joy over his post-CAR-T CLL disease level dropping to less than 1 in a million cells. Read more.

Michelle Palmer brings a winner’s attitude to her “Boston (CAR-T) Marathon”. After long experience with multiple treatments, Michelle was running out of treatment possibilities for her CLL, so she opted for CAR-T therapy. As many have experienced, CAR-T can bring unpredictable side effects. Find out how a winner copes!

The 2020 CARES ACT Universal Deduction for Donations Up to $300

If considering a 2020 donation to the CLL Society, you may want to look into this remaining benefit which expires on December 31, 2020. The 2020 CARES Act will allow individual taxpayers who no longer itemize their charitable contributions to deduct donations of up to $300 to charity on their 2020 federal tax return, even though they take the standard deduction.

IR-2020-264, November 25, 2020

WASHINGTON — The Internal Revenue Service today reminded taxpayers of a special new provision that will allow more people to easily deduct up to $300 in donations to qualifying charities this year.

Following special tax law changes made earlier this year, cash donations of up to $300 made before December 31, 2020, are now deductible when people file their taxes in 2021.

This link may be helpful: https://www.irs.gov/newsroom/special-300-tax-deduction-helps-most-people-give-to-charity-this-year-even-if-they-dont-itemize

Please donate to the CLL Society. 

As we draw close to the end of the year, please consider that the CLL Society is unique among blood cancer charities. We are laser-focused on CLL alone, and our physician-curated CLL programs and publications are held to the highest standards of accuracy.

Your generous support in 2020 has allowed CLL Society to remain nimble in the face of COVID-19’s unprecedented challenges. Some of these efforts included reformatting our programing to function in an all-virtual Zoom format, completing a massive mail-out of face masks to our immunocompromised CLL patients and their caregivers, and in multiple other ways that supported our ongoing mission to be there for you.

We still have much critical work ahead of us and your support is vital.

Thank You!

Please take a moment to learn about what makes the CLL Society so smart and why should you invest in it. Brains! BScs, DOs, PAs, RNs, MDs, and PhDs. Hundreds of ground-breaking CLL-focused clinical trials and hundreds of thousands of hours of compassionate clinical care inform CLL Society’s Medical Advisory Board. How many of these physicians, researchers, and visionaries do you recognize? This is where we get our brains.

CLL Society is the only CLL-specific, physician-curated public charity dedicated to meeting the unmet needs of CLL patients and their caregivers which holds the GuideStar Platinum Seal of Transparency.

We are all in this together.

Patty Koffman
Co-Founder & Communications Director
CLL Society

CLL Society Support Group Meetings Coming Up!

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.

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