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Is it Waldenstrom Macroglobulinemia?
Here are the results from my bone marrow biopsy. Has anyone else had similar results for this diagnosis?
Low-grade B-cell lymphoma, see note
Note: Immunohistochemical profile and the history of IgM kappa monoclonal gammopathy favor diagnosis of lymphoplasmacytic lymphoma/immuno cytoma (Waldenström's macroglobulinemia)
Positive for MYD88 L265P mutation
Flow cytometry - Diagnosis: Consistent with CD10-positive B-cell lymphoproliferative disorder admixed with a small monoclonal kappa restricted plasma cells. Comments: Flow cytometry shows monoclonal B-cells (2.8% of total cells) with dim CD10 expression without CD5 or CD11c, consistent with a CD10-positive B-cell lymphoproliferative disorder. The main differential diagnosis includes atypical lymphoplasmacytic lymphoma, follicular lymphoma, Burkitt lymphoma and large B-cell lymphoma. Although a large B-cell lymphoma cannot be excluded based on flow cytometry alone, the flow cytometry revealed primarily small lymphocytes. Please correlate the result with morphologic findings and clinical information. Flow Differential (%) and Population Analysis: Lymphocytes: 32.2% T-cells (69% of lymphoid cells) show a CD4:CD8 ratio of 1.1 without overt phenotypic abnormality. NK-cells (20% of lymphoid cells) are unremarkable. Mature B-cells (9% of lymphoid cells) are small in size based on the forward scatter pattern and show: CD5 neg, CD10+,(subset), CD19+, CD20+, with surface kappa light chain restriction (kappa:lambda 19.3)
Based upon these findings, with IgM clonal protein and MYD88 mutation, this fits with this type of lymphoma.
This lymphoma will not go away, but can be treated if starting to cause symptoms or getting too high on your IgM level.
We will talk about doing some CT scans to see if lymph nodes enlarged as well.
Hope that this helps.
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No one could diagnose you from that presentation. You are not providing the Myeloid NGS Panel sequencing, CBC/CMP/Diffential/MAN DIFF, and other testing that "excludes" other possibilities. What was the biopsy block's relevant B-cell "cellularity"? The final classification also requires matching these laboratory flags with serum protein electrophoresis (SPEP/IFE), serum IgM levels (very important), and the "physical appearance of the cells under the microscope" in the bone marrow biopsy core. That last part is important. The hematologist-oncologist would want to speak to the pathologist and get his personal interpretation of the cellular state(s) right after the biopsy results came back. His perceptions would be noted in his personal notes. They are the best interpretation of "what he actually saw the cells look like."
While this limited amount of information is pointing toward WM/LPL, the doctor might start with MGUS until all of other variables are taken into account (and/or excluded). Just my opinion.
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3 ReactionsAnother thing... what constitutional (systemic) symptoms are you experiencing? Anemia? Inflammation? Neuropathy? etc. Those are all factored into the equation.
I believe that your oncologist should have done a CT scan of your abdomen and chest (lymph nodes) and next gen sequencing if they are considering an LPL with other implications. You need to make sure it is simply an LPL or you are masking an underlying myeloid disorder. That is why the NGS panel is so important.
To make you feel better, the 2.8% B-cell cellularity is very low, so that's good news (many doctors require > 10% B-cell cellularity for a WM confirmed diagnosis). If it ends up being strictly a WM/LPL process, then it would likely be indolent (slow moving) and you'd be able to wait and see for quite awhile.
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1 Reaction@marcwall No symptoms kow. He's not too forthcoming w his equative analysis and these sensible pts u make may open him up. I'll let u know. Do u have WM or are u an oncologist?
yes I have lymphoplasmacytic lymphoma/immuno cytoma (Waldenström's macroglobulinemia. Im taking Brukinsa or zanabrutinin for this. Symptoms are some diarhea and red blotches on my arms and weight loss. But my statistics of rted blood cell production in my bones has gone up and my figures on certain bad proteins has also improved steadily. My cancer doctor and I are meeting monthly to keep it under control.
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1 ReactionI am a patient that does my homework. We have to do that in this day and age. Some doctors are forthcoming and some are not. Some are better than others about recognizing what they know and what they don't. AI will help you interpret all of the data and know what are the important questions to ask. AI is not suitable for establishing diagnosis and it can get confused when you communicate with it. Garbage-in, garbage-out. So if you communicate with AI, be precise and clear with your wording and grammar. Then it is a critically essential tool.
I have been diagnosed with Waldenstroms Macroglobulinemia (WM) and a concurrent myeloid disorder, MDS-SF3B1 (Myelodysplastic Syndrome). What that statement doesn't tell you is that the first diagnosis was easily determined (IgM 1622 / M-Spike 1.8 / MYD88 gene mutation = 95+% WM/LPL). The second diagnosis is far more difficult. Following all of the testing, the doctor chose the "easy" (diagnostically acceptable standard by WHO/ICC of SF3B1) diagnosis even though only 3.4% of my chromosomes were representing SF3B1. More frequent (higher VAF prevalence) mutated genes indicate an overlapping MDS/MPN process or disorder. (MDS = Myelodysplastic Syndrome) (MPN = Myeloproliferative Neoplasm).
The Myeloid Next Generation Sequencing (NGS) Panel enabled the oncologist and pathologist to see all of the genetic and cellular "plasma" differentiation and impact of my alterations (5 mutated genes). Since both of these cancer processes are somewhat indolent (slow-moving) there is little concern at the moment (wait & see)... BUT he elected to treat my WM first BECAUSE I have peripheral neuropathy (24/7 foot numbness), which can be caused (in-part) by IgM clonal cells. The Anti-MAG Antibodies (AMA) Test proved this. So, a well-tolerated "targeted drug" like Brukinsa can kill those cancerous IgM cells and "hopefully" reduce or eliminate my neuropathy in 5 months or so. That's what we are doing. In one month, my AMA lowered indicating the nerve-impact is improving. We'll address the MDS or MDS/MPN disorder later.
@marcwall just woke up w slight nosebleed w bld on pillow. No other symptoms. Informed my hemotologist/oncologist.
@barbarian1 --- Great move. He/she'd be the first person I would contact. Good luck!!!
@fhardaway1 I had nosebleed last night. I've become sedentary over past 2byrs and lately I've been feeling tired more, prob anemia too. How old are u? I'm 71.
I'm 85. I am sedentary compared to my previous life. I was a runner, but my back hurts so I walk 20 minutes a day. I also take yoga or tai chi every day. It's so. hot in Phoenix right now that i'm afraid it's dangerous to be more active.