In SLL it sounds like the absolute lymphocyte count tends to stay below 5000. Since we cannot rely on lymphocyte doubling time used in CLL do we focus more on lymph node size for disease progression monitoring? What are important markers in CBC and white diff that are good signals.
Thanks in advance!
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DriedSeaweed
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Those with a SLL diagnosis may 'progress' to CLL, i.e their ALC may eventually climb above 5(thousand) and meet the 'CLL' criteria. It happened to me withing 2 years of my diagnosis with 'CLL/SLL'. (My specialist was smart enough not to differentiate as they are the same disease according to the WHO lymphoma/leukaemia classification system.)
Basically CLL and SLL are monitored the same way - regular blood tests and checks on spleen, liver and node changes as well as being on the lookout for other B-symptoms, such as unintended weight loss, night sweats, bruising, fevers/infections. If the SLL becomes established in the bone marrow, then eventually that will show up in the development of cytopenias, i.e. falling red blood cell/haemoglobin counts, platelet counts and perhaps other counts, such as neutrophils and other white blood cell counts.
Nothing to do with absolute lymphocyte counts... its B cells only.. B lympocyte counts.
The diagnosis of CLL requires the presence of ≥ 5.000 B-lymphocytes/µL in the peripheral blood, sustained for at least 3 months. The clonality of these B-lymphocytes needs to be confirmed by demonstrating immunoglobulin light chain restriction using flow cytometry.
The used to use absolute lymphocyte count [ALC] for diagnosis for a few years and the general agreement was greater than 10K although some used 12K.
Its a point of confusion for most patients. Absolute lymphocyte count [ALC] has T cell and NK cell and B cells and a few others.
I've had SLL for 24 years and never had a raised ALC, about the only indication I've had of progression was falling red counts, platelets and neutrophils which only occurred just before treatment was needed. CT scans and BMBs are about the only way to check progress and CT scans aren't something you want too often. If you stay as SLL and don't progress to CLL then you need to get used to the idea that you won't have any hard numbers to look at. For quite a while I found this very frustrating but now I look on it as an advantage. You will see from many of the posts that a lot of our CLL colleagues get very stressed by their blood counts whereas we can get on with our lives in blissful ignorance.
Tricky keeping it all straight. I passively watch videos and read articles. Maybe keeping a little notebook of useful nuggets of information could help.
Doctor said I had evidence of cll in blood as well as sll with lymph biopsy. Hard to judge where on progression scheme I am sometimes. Feel "normal".
Except nodes under arms really obnoxious at gym!
Going to NIH next week for free consult. Actually excited!
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