Recently diagnosed at 36 years old

Hello all! I was recently diagnosed with either a marginal zone lymphoma or CLL--they are uncertain which exact one because it is stage 0 and there are no swollen nodes or anything to biopsy to be sure. Phenotype is CD 5 negative and CD 10 negative FMC7 and Pax5 positive and CD23 positive. FISH shows +3q and trisomy 12. The trisomy 12 is what makes the doctors think it could be CLL but the +3q seems to be more common in certain types of marginal zone lymphomas. CLL with negative CD5 and negative CD10 can happen the doctors say but it is kind of rare. The doctors tell me that either way it does not make a difference because the protocol is the same right now--watch and wait. I have been doing pretty good in calming myself down and learning to enjoy life and my two young boys (5 y.o and 3 y.o) during this time, but it is hard because I want to know what it is exactly. Absolute lymphocytes rose above 5,000 in last blood draw in early December and I go back for follow up in March. Anyone on here with marginal zone NHL and trisomy 12 and +3q?

Any thoughts/advice on certain other tests to discuss with my doctor to try to narrow down the phenotype more precisely?

4 Replies

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  • Hi Smarker, I have marginal zone but I'm really not sure what stage, my spleen was huge and I was anemic, they removed my spleen and put me on watch and wait getting close to 3 years. I had a bone marrow aspiration and lots of blood work, maybe you could suggest a bone marrow test? Good luck

  • Thanks for responding. Yes they have done 2 bone marrow biopsies so far since June. Interstitial cells about 15% monoclonal malignant.

  • so confusing...Im sorry ...

    its all a mental game right now...try to be not think be positive and live in the moment...

    tell your body you are perfectly healthy....

  • I have marginal zone too. Are you cd20 positive? They tell me I've probably had this ten years or more so you just enjoy those kids and don't worry

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