mlus returns: I posted a while back that my mlus... - CLL Support

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mlus returns

Msmilley profile image
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I posted a while back that my mlus had spontaneously disappeared. Six months later it showed up again on flow cytometry. The first time it was 2% of cells now 2.3%. My lymphocytes are not high. Has anyone ever heard of this coming and going? I see hematologist tomorrow. Pathologist said may need bone marrow biopsy . I hope not!

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Msmilley
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lankisterguy profile image
lankisterguyVolunteer

Hi Msmilley,

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I did a search on MLUS and found a few papers from the early 2000s. Here is the easiest to read: onlinelibrary.wiley.com/doi...

The last 2 sentences in the summary say:" The lymphocytosis in MLUS is virtually non-progressing. These patients are clinically silent and undergo a completely benign course."

That sounds like a wonderful prognostic prediction.

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If the 2.3% is the ratio to all of your white blood cells, you may have a tiny amount of cells that are stable and unchanging, but difficult to analyze in the FISH test. If that is the diagnosis, then I think you may have a wonderful future and never see your condition advance / progress to CLL.

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This paper is much tougher to read due to the intense Med-Speak: ashpublications.org/blood/a...

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Len

MLUS
Msmilley profile image
Msmilley in reply tolankisterguy

Thank you for that. I see my hematologist tomorrow. He had said he has seen it disappear or get worse. He wanted to be sure it didn’t evolve into CLL. I will report what he says tomorrow. Thank you again!

Msmilley profile image
Msmilley in reply tolankisterguy

Good morning, wanted to tell you what my hematologist said at my appointment. He said MLUS could stay the same , go away , or get worse. He has had patients with mlus evolve into Cll. He will check me again in six months . I feel good about it now that I understand more about it. He said even if you do get diagnosed with Cll you may mot need treatment at first. So I’m hopeful it just stays the same. Thanks for listening.

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