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May 2024 CLL Bloodline

In science and medicine, information is constantly changing and may become out-of-date as new data emerge. All articles and interviews are informational only, should never be considered medical advice, and should never be acted on without review with your health care team.

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: CLL / SLL is considered an orphan disease:

  1. True
  2. False

Answer: The correct answer is TRUE. CLL may be the most common blood cancer in adults but is still quite rare and is considered an orphan disease. An orphan disease in the US is defined as affecting fewer than 200,000 people. We already may not qualify as more are being diagnosed and living longer with CLL / SLL than are dying so our numbers are growing. There are 22,000 new cases of CLL / SLL in the United States yearly. Compared to breast cancer, which has 250,000 new cases annually, and 161,000 new cases of prostate cancer, CLL is still rare. Incidence is the term used to describe the number of new cases annually. Prevalence is the number of all patients living with the disease. 

NEWS: We are excited for the 3rd Annual Celebrating Long Lives 5K Walk and Run taking place on Saturday, May 11th, and we hope you all can join us to help raise awareness. If you need assistance participating or have questions, please reach out to [email protected], and CLL Society can support your efforts. 

Join us on Thursday, May 16th for our upcoming webinar COVID-19 in 2024: Recommendations and Strategies for Those with CLL and SLL with Dr. Shahzad Mustafa.

CLL Society is looking for people with experience discontinuing treatment with a BTKi to participate in an important research project, which is closing soon. If you have stopped taking a BTKi (ibrutinib, acalabrutinib, zanubrutinib), for reasons other than disease progression (such as stopping for side effects, physician or personal preference with either the intent to never take it again or discontinuing for 3+ months), please share your experience by completing this survey.

CLL Society is opening interest surveys for two new support groups. If interested in either support group, please complete the survey: Care Partner of a CLL / SLL Patient Support Group or CLL / SLL Patients Without a Care Partner Support Group.

THE BASICS:  Treatment Choices. In prior issues of CLL Society Bloodline, we covered what needs to be done when first diagnosed, before treatment, and how to know when treatment is needed. In this issue, we broadly discuss frontline treatment choices. Treatment decision should always be individualized and depends on several factors including:

  • Age, overall health, co-morbidities, other medications, and the amount of disease and its stage.
  • Prognostic biomarkers (especially FISH, TP53 mutation and IGHV mutation).
  • Personal preference. 

Choices are complicated and there may be significant disagreement between well-meaning experts making it even harder to make a decision. The common first or frontline treatments broadly fall into 3 categories:

  • Chemo-immunotherapy or CIT:
  • FCR (fludarabine, cyclophosphamide and rituximab), BR (bendamustine and rituximab) and CO (chlorambucil with obinutuzumab) are the most common. There is a very limited role for CIT today.
  • Non-chemo options:
  • Ibrutinib alone or with obinutuzumab (Gazyva) or with rituximab. Rituximab does not seem to improve outcomes compared to ibrutinib used alone. Ibrutinib is being used less and less with the approvals of acalabrutinib and Zanubrutinib.
  • Acalabrutinib with or without obinutuzumab – less side effects than ibrutinib.
  • Zanubrutinib – less side effects than ibrutinib and likely better efficacy.
  • Venetoclax, usually with obinutuzumab.
  • Clinical trials:
  • These vary but offer excellent care, access to the latest therapies, and for some may be the best choice.

All of these are explained in more detail on https.//  and will be featured in the upcoming Bloodlines.


MRD is an acronym for measurable residual disease or minimal residual disease. We prefer “measurable.” All tests have limits of detection. Some can find a single cancer cell in 10,000 cells, another in a million. uMRD (undetectable MRD) formerly called MRD negative means that no CLL was detected at the limits of the test. This is usually very good news and can be associated with very long remissions but shouldn’t be confused with being cured. Some trials are now using MRD status to determine best CLL management.

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