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The World’s Leading Authority for Chronic Lymphocytic Leukemia Patients

February 2023 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In science and medicine, information is constantly changing and may become out-of-date as new data emerge.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, the CLL Bloodline will teach the BASICS needed to understand CLL, bring news, help with the acronyms and new vocabulary, and offer simple fun quizzes.

MONTHLY QUIZ: Chemo-immunotherapy (CIT), specifically FCR (fludarabine, cyclophosphamide, and rituximab), can give very long remissions that are starting to look like cures as frontline therapy for some CLL patients who:

  1. Are missing the short arm of chromosome 17, also known as deletion 17p.
  2. Have mutated IgHV.
  3. Have unmutated IgHV.
  4. We can’t predict who is more likely to respond to CIT

Correct answer in #2. FCR has resulted in very long remissions for some fit young low-risk patients with mutated IgHV, and no other “bad” prognostic factors such as 17p or 11q deletions or mutated TP53. Only about 1 in 7 fit in this group. More than half with mutated IgHV treated with FCR had no CLL progression for up to 20 years. In fact, for healthy young patients with the best prognostic factors, if FCR gets them to undetectable measurable or minimal disease (U-MRD), then they have an almost 80%, chance of never needing more treatment.  However, if one doesn’t fit into that low-risk group, outcomes are much worse. Testing for IgHV mutation, a simple blood test, should be mandatory for anyone considering FCR. Our motto is: TEST BEFORE TREAT™ but unfortunately it is often not done in community practices. Also, FCR increases the risk of second cancers including MDS (myelodysplastic syndromes) that are very hard to treat and is not well tolerated by older and sicker patients.


Zanubrutinib was approved for CLL / SLL giving us 3 approved irreversible BTK inhibitors. Pirtobrutinib, the first reversible BTK inhibitor, was approved for mantle cell lymphoma so it can now be used to treat CLL / SLL off label and may work when the other 3 BTK inhibitors have failed. EVUSHELD‘s emergency authorization was pulled as it was not likely to protect against >90% of the circulating COVID.

Join us on 2/9 for our webinar ASH 2022 Comes to You! with Drs. Koffman and Parikh reviewing the most critical research from the recent American Society of Hematology Annual Meeting.

Join us on 3/22 for our Facebook Live Event Ask Me Anything with Dr. Brian Hill and patient advocate Jeff Folloder for an event dedicated exclusively to your questions.

CLL Society has launched a third Watch & Wait Support Group. Meetings take place bi-monthly and will be meeting in February. More info on the website.

THE BASICS: What to do when first diagnosed: CLL is usually slow growing or indolent giving you time to plan. Don’t neglect your routine preventive care, especially age and gender appropriate cancer screening such as PAPs, mammography, PSA, colon cancer screening and especially skin checks, as CLL increases the risk of many secondary cancers, including skin cancer. Stay up to date with vaccinations and get the annual flu shot but avoid live vaccines such as yellow fever or MMR as they are not known to be safe in CLL. Most importantly, put together your treatment team (get help at the CLL Society’s online toolkit), join a support group, and frontload your knowledge about your disease.


Lymphocytes are white blood cells. There are 3 basic types: B lymphocytes or cells, T cells, and natural killer (NK) cells. CLL is a cancer of the B cells. Normal B cells mature into plasma cells that make antibodies, T cells are soldiers in our cellular immune system and direct or do the killing themselves, and NK cells are part of our nonspecific innate immune system. Unlike T cells, NK cells don’t need to be primed to kill virally infected or cancer cells. Quite the team! CLL is a cancer of the immune system which explains our higher risk of infections and 2nd cancers.

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