Over the course of a year of monthly meetings, CLL Society Bloodlinewill teach the BASICS needed to understand CLL. It will also provide news, help with the acronyms and new vocabulary words, and offer simple fun quizzes.
MONTHLY QUIZ: Choose the correct statement below:
- CLL most commonly presents in men and in those in their early 70s.
- CLL affects men and women equally.
- CLL is roughly equally common among all races and ethnicities.
The correct answer is #1. CLL is more common in men and the average age at diagnosis is about 72. It is quite rare but can be seen in those under 30. About 10% present under 50 and 5% under 40. CLL is more common among Whites (5.1 cases per 100,000) than other races (Blacks: 3.2 cases per 100,000; Hispanics: 2.1 cases per 100,000; Asian Americans: 1.1 per 100,000). Ashkenazi Jews are at especially higher risk.
NEWS:
- If you are interested in supporting CLL / SLL research, now is the perfect time. CLL Society will soon be awarding our second research award in integrative medicine. All donations to this effort will be matched 2 to 1 by a very generous donor. So, if we raise $74,000, we will receive a $148,000 match to fully fund this exciting initiative. We have already raised $45,000! Click here to donate.
- Join us on July 16 for the webinar, Next-Generation CLL Treatments: Understanding Clinical Trials and Future Therapeutic Strategies with Dr. Jennifer R. Brown and patient advocate Terry Evans.
- If you missed the virtual event, Ask Me Anything – Featuring Dr. Lindsey Roeker and Jeff Folloder, you can catch the replay on our education on-demand page.
- CLL Society’s Expert Access Program™ is available to anyone with a CLL diagnosis residing in the US. It is a free and easy way to receive a 2nd opinion from a CLL expert physician, through a HIPAA-compliant telehealth appointment. Participants can reapply if they are unsure of their disease status or treatment plan.
THE BASICS: Watch and Wait or Active Surveillance
The first treatment for about 95% of CLL patients is “Watch and Wait,” or as we prefer to call it “Active Observation” or “Active Surveillance.” We are still working to change the term in order to suggest a more active approach and are seeing progress in research publications. Patients often still call it, “Watch and Worry.” It is at first glance one of the most counter-intuitive concepts in CLL. With many types of cancer early detection is critical with the prognosis getting worse with more advanced stages of the disease. That’s the reason for routine PAP smears, mammograms, colonoscopies, PSA, and skin check. Catch the cancer early. In CLL / SLL, it’s a different story because:
- No early treatment strategy has been shown to prolong survival.
- All treatments have some risks.
- 30% of patients will never need treatment so treating early exposes them to unnecessary toxicities.
Outside of a clinical trial, “Active Surveillance” or “Watch and Wait” is still the smart move. If you are interested in early intervention, the EVOLVE trial is still open using venetoclax and obinutuzumab early in high-risk patients before they meet the usual criteria for treatment.
WORD/ACRONYM OF THE MONTH: FLOW CYTOMETRY
Flow Cytometry is a powerful blood test that looks at markers on the cell surface. It is THE test necessary to confirm the diagnosis of CLL by identifying the typical clonal population of cells (CD19, CD20(dim), CD23 and CD5). It can also be used to look for MRD (measurable or minimal residual disease) and can find one cancer cell in 10,000 cells.
If the CLL Society has helped you or a loved one, please consider making a donation.
