Over the course of a year of monthly meetings, The CLL Society Bloodline will 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. The cycle restarts and it is updated annually.
MONTHLY QUIZ: CLL/SLL is considered an orphan disease:
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. Overall, there are about 22,000 new cases of CLL/SLL in the United States each year. Compared to breast cancer, which has 250,000 new cases annually, and 161,000 new cases of prostate cancer, CLL is quite 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. With the number of new treatments that have become available for CLL/SLL in the past few years, the prevalence of CLL/SLL has been increasing as patients are living longer.
Bonus Question: True or False: Obtaining a Free CLL Expert 2nd Opinion through the CLL Society’s Expert Access Program is available only to those with financial need. False! No financial questions asked! If you have a diagnosis of CLL, live in the US, and are not in the care of a CLL expert, you qualify! Apply today.
There are now data that < 40% of us form antibodies post COVID vaccine. Active treatment including BTK inhibitors, venetoclax and antibodies lower the response rate dramatically. 55% in watch and wait and 79% off therapy for a year and in remission do respond. Keep in mind that we don’t know how antibody responses relate to actual protection.
THE BASICS: Treatment Choices
In prior issues of The 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:
- Your age, your overall health, any co-morbidities, and prior treatments.
- Your prognostic factors (especially FISH, TP53 mutation and IGHV mutation).
- Your personal preference.
Your choices are complicated and there may be significant disagreement between well-meaning experts, making it even harder to make a decision. The approved first line 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 an increasingly diminished role for CIT.
- Non-chemo options:
- Ibrutinib alone or with obinutuzumab (Gazyva) and with rituximab
- Venetoclax and obinutuzumab
- Clinical trials
All of these are explained in more detail on https.//CLLSociety.org and will be featured the upcoming Bloodlines.
WORD/ACRONYM OF THE MONTH: MRD
MRD is an acronym for minimal residual disease of measurable residual disease. 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. Some trials are now using MRD status to determine the best CLL management.
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