This content was current as of the date it was released. In science and medicine, information is constantly changing and may become out-of-date as new data emerge.
While the critical events in your CLL history, such as date of diagnosis, treatments, and pivotal changes in disease status may be indelibly seated in your memory, you may on occasion find your healthcare provider doesn’t have this information in front of them. How can they provide the best possible care without it? You can help! In our upcoming May 27th webinar, Nurse Practitioner Becky McAlpin and Caregiver extraordinaire Steve Delesie will help you anticipate what information you should always have ready, and how to best prepare for your doctor appointments. You will learn how to prepare your own neat little package to distribute to everyone present at the appointment and the importance of taking it with you!
May Webinar Registration
CLL Society Webinar: Getting Maximum Benefit from Doctor Appointments on Thursday, May 27 at 10:00 AM PT, 11:00 AM MT, 12:00 PM CT, and 1:00 PM ET. The information you disclose at your doctor appointments can be critical to getting your best possible care.
For those of you who love to prepare early, there is some additional information available as a bonus to this week’s Tuesday Alert. Steve Delesie has shared the forms he uses to help him better prepare for healthcare visits. His medical appointment questions and medical history forms can be accessed here.
Registration is open! Learning to Decode Your Blood Test Results for CLL on Tuesday, June 29th at 10:00 AM PT, 11:00 AM MT, 12:00 PM CT, and 1:00 PM ET. What do our blood test results reveal? Dr. Susan Leclair will teach us to decipher the code! Helpful information related to this topic can be found at the links below.
- Normal Lab Values
- Keeping Track of Lab Results
- CLL Glossary
- Abbreviations & Acronyms
- Ask the Laboratory Scientist
This week’s Conference Coverage article focuses on a 2019 iwCLL interview with Dr. Carlo Croce and gives us an up-close look at BCL2, a gene that was originally identified by Dr. Croce’s lab in 1984 in patients with follicular lymphoma. This important gene plays a role in whether cells live or die by regulating a cell death pathway known as apoptosis. Unfortunately, overexpression of BCL2 is present in over 80% of CLL patients, allowing CLL cells to survive and proliferate. It took more than 30 years from the discovery of the BCL2 oncogene to the development and approval of the targeted drug venetoclax for treating CLL.
Dr. Brian Koffman adds his voice to Dr. Byrd’s in our new Opinions Section with his personal advice and relevant links about masks, vaccines, antibody responses, and pre-exposure use of SARS-CoV-2 monoclonal antibodies and other therapies for prophylaxis.
Accumulating data suggest that vaccines may not work for most CLL patients. The new CDC guidance that masks are no longer mandated in most settings may not be in our best interest.
Paid Survey Opportunity
Pillar Patient Advocates, LLC is interested in speaking with CLL patients with treatment experience. There are two studies and compensation for participation is $165 and $350. Find out more and if you’re eligible here.
Survey: How Do You Make Treatment Decisions?
There are a variety of ways in which CLL patients make decisions when considering treatment options. How would you best describe yours? Let us know by taking our survey.
Help You Need When You Need It!
- Healthwell Foundation is helping the medically under-insuredafford critical treatments. Learn more here.
- LLS Financial Assistance Programsare open to CLL patients. These include Urgent Needs Program, Co-Pay Assistance Program, and the Travel Assistance Program. Learn more here.
- CLL Society’s Expert Access™ Program, a no-cost, expert 2nd opinion consultation is open; learn more and apply here.
- CLL Society’s Test Before Treat™one-pager. Take it with you. Don’t get the wrong treatment!
- CLL Patient & Caregiver Support Groups are herefor you. Don’t spend another month alone!
Please Support CLL Society
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.
Co-Founder & Communications Director
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.