CLL Dx July 2022 when I was 78. W&W, Living an active and normal life except some swollen lymph nodes on necks and under chin (diameter of largest is about one inch). A month ago my Hemo/Oncologist ordered a FISH Test and Flow Cytometry. Results are as follows
FISH FINAL RESULT (My first one):
Value
POSITIVE for Trisomy 12 (60% of cells). NEGATIVE for the following: deletion of ATM gene (11q22.3), monosomy 13, deletion 13q14.3, deletion 13q34 and deletion of the TP53 gene (17p13.1).
FLOW CYTOMETRY RESULT (My second one. The first one was done in June 2022):
HEMATOPATHOLOGY CONSULTATION Date Ordered: 11/7/2024 INTERPRETATION FINAL DIAGNOSIS: PERIPHERAL BLOOD: - CHRONIC LYMPHOCYTIC LEUKEMIA IMMUNOLOGIC CHARACTERIZATION BY FLOW CYTOMETRY, PERIPHERAL BLOOD: - KAPPA (WEAK) MONOTYPIC B LYMPHOID CELL POPULATION POSITIVE FOR CD19, CD20 (DIM), CD23 AND CD5 Microscopic description: CLINICAL HISTORY: Reported history of chronic lymphocytic leukemia 11/06/24 WBC'S AUTO: 25.9 (H) RBC, AUTO: 4.45 (L) HGB: 13.6 HCT, AUTO: 41.0 MCV: 92.1 MCH: 30.6 MCHC: 33.2 RDW, BLOOD: 14. 5 PLATELETS, AUTOMATED COUNT: 181 NEUTROPHILS %. MANUAL COUNT: 11.7 LYMPHOCYTES % MANUAL COUNT: 81.7 MONOS %, MAN CNT: 3.3 EOSINOPHILS % MANUAL COUNT: 0.8 BASOPHILS %. MANUAL COUNT: 0.8 BAND'S %, MANUAL COUNT: 1.7 PERIPHERAL BLOOD: The red cells are normal in number and are normochromic and normocytic. Anisocytosis and poikilocytosis are not prominent. Polychromasia is not increased. The white blood cell count appears as given in the CBC showing numerous atypical lymphocytes. They are small in size and show scant cytoplasm. Numerous degenerated cells are present. Platelets are normal in number and appearance. FLOW CYTOMETRY: Specimen: Peripheral blood Lymphoma screening panel: CD3, CD5, CD8, CD10, CD19, CD20, Kappa, Lambda, CD38, CD16, CD56, CD57, CD7 Interpretation: The flow cytometry analysis performed on “lymphocyte” gate shows kappa monotypic B lymphoid cell population. See above.
Since I don't see my doctor until May 2025. Appreciate if anyone can tell me: Is this a good or bad prognosis in my current situation
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CLL07072022
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Hello Cll0707. I am no expert but will give you a layperson opinion. You appear to have trisomy cll which carries an intermediate prognosis for most.m. Your bloodwork looks okay and consistent with early stage cll. Trends with labs give much more meaningful info and it’s hard to read too much into a single lab test.
You report your age at 78 two years ago, making you 80ish now. With all the modern meds and your diagnosis at a relatively older age, you have an excellent chance, if not a probability, to live your normal life expectancy. If and when you ever treat, just about any sequence of the new meds should get you at least another ten years and probably more absent some complication.
Your doctor is the best person to interpret your labs. But even as a layperson, I dont think it a stretch to say you have a great chance to live many more years and manage your cll so that you can do just about anyhting you were doing before you got diagnosed. Good luck, you found a good place to get info on cll.
Thank you Cajunjeff for your quick n kind reply of so much info. Your comment confirms what I have been reading from some previous posts/replies. This HU CLL support forum is the best. Even CLL specialists recommend it to patients. We are all lucky to be in. Blessed.
Interestingly, in patients with trisomy 12 (18% of patients), there was no progression or death event with VenG during the observation period, which is a remarkable result with yet-unknown biologic background.
You don't have del(17p) which would be a "poor" result.
Absolute Lymph Count (ALC) 25.9 x 81.7% = 21.2. The ALC is more important than WBC and % doesn't make the result clear. Lymph count is high but you are still not of any interest to doctors and won't be until this exceeds 25, hence the 6 month consultation. It will likely progress to needing treatment for symptoms other than a high ALC.
CD19, CD20 (DIM), CD23 AND CD5, these are clusters of differentiation, proteins found on the cell surface. These are normal for CLL.
No one really knows about the "Atypical" with the new drugs that have become available in the last 10 years, it simply isn't reported in clinical trials. Yours doesn't have the "atypical" CD immunophenotypic markers, the "atypical" is on appearance (morphology).
Morphologically atypical CLL cells have been defined mainly as large, atypical forms, prolymphocytes, or cleaved cells. However, current aCLL diagnostics rely more on immunophenotypic characteristics rather than atypical morphology.
You still need additional test results for IgHV (Immunoglobulin heavy variable, Y shaped Ig on cell surface) somatic hypermutation and Next Generation Sequencing (NGS).
IgHV will be either mutated or unmutated. Unmutated have shorter times to treatment, respond well to treatment but relapse quicker.
NGS tests specific chromosomes for mutations, TP53, ATM, SF3B1 are the most important. (See the CLL14 report Fig 3 for prognosis on V+O). I have yet to see similar Progression Free Survival (PFS) charts or data for BTKi drugs, other than for IgHV and del(17p)/TP53mut as these are now the only really important mutations.
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Diagnosed at 10 am Today
test interpretation
MRD - Flow test compared to clonoSEQ
Bone Marrow Biopsy showing Manoclonal B Lymphocytosis
Me again.
