Persistent lymphocytosis

[MiloTeddy]

Hi this is my first time posting here! Over the last year my WBC has been above reference range and my ALC has also been high for the same amount of time. I do have Ulcerative Colitis but this has only been in flare since the end of November. Does anyone know if the “cytoplasmic blebbing” should be a concern?

I am struggling with severe fatigue and have had almost daily drenching sweats for over a year (not so much of an issue at night). I did have almost daily nose bleeds for a few weeks last sept/oct time but my GP said they were likely due to high blood pressure and since adding a blood pressure medication they have all but stopped.

I am 41 years old.

Any insight gratefully received

[Jm954 Administrator]

Hi MiloTeddy, sorry that your new year has started off like this.

You have three concerning symptoms/clinical features that, for me, mean that you should be seen by a haematologist. You have a persistent lymphocytosis with atypical blebbing features (this is not typical of CLL), fatigue (you're only 41) and drenching sweats.

Please go to your GP of phone them and insist on that appointment with a haematologist. They will take a detailed history from you, do an array of specialist blood tests and give you a clinical examination to check for lymph nodes, enlarged liver and spleen.

When all the results and information is put together there will be a clearer picture and it may be nothing at all. Let us know how you get on.

best wishes

Jackie

[MiloTeddy in reply to Jm954]

Hi Jackie

Thank you so much for your swift reply. I think that 3 monthly blood test would drive me insane, also I’m glad you think I need to get in touch with my GP sooner, I wasn’t sure if I was being overly dramatic!

Also, do you know if CRP levels are anything to worry about, my levels have been slightly high over the last year, the November one was 14, December was 24.

Thanks again

[Jm954 Administrator in reply to MiloTeddy]

If your CRP is high then something is going on and it may be a low grade viral infection. That could possibly produce the same sort of symptoms. Tick bites come to mind but I think you're in the UK so Dengue is unlikely.

You still need that conversation with your GP or haematologist.

Jackie

[MiloTeddy in reply to Jm954]

Thank you, yes I’m in the UK!

I’ll get that appointment sorted

[Skyshark in reply to MiloTeddy]

3 monthly blood tests? Luxury!

During work up for treatment it was one every 4 weeks + extras before biopsies.

41 during first 8 weeks of treatment. Then back to 1 every 4 weeks for 6 cycles.

Nearing end of treatment down to one every 8 weeks.

[MiloTeddy in reply to Skyshark]

Oh my goodness! That’s a lot. Obviously rather not be having any but it’s that wait in between that causes the anxiety.

Sending best wishes

[lankisterguy Volunteer]

Hi MiloTeddy,

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From the wording of that blood test summary, you have not gotten testing for any LPD ( Lymphoproliferative disorders (LPD) comprise a heterogeneous group of diseases characterized by uncontrolled production of lymphocytes that cause monoclonal lymphocytosis, lymphadenopathy and bone marrow infiltration).

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CLL is only one of many LPDs and NHLs (Non-Hodgkin lymphoma is a disease in which malignant (cancer) cells form in the lymph system. Non-Hodgkin lymphoma is a type of cancer that forms in the lymph system. The lymph system is part of the immune system)

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So as your test summary says, when your ALC / Lymph# / Lymphocytes exceed 10.0 you should be referred to a hematologist, who will likely sort out the cause using a series of blood tests including a FISH test (FISH stands for fluorescence in situ hybridisation. It is a test that looks for gene changes in cells. Genes are made of DNA. They control everything the cell does, including when it grows and reproduces. FISH tests look for specific genes or parts of genes).

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We hope that the cause of your slightly elevated Lymphocytes is a curable condition, but if not, then many of the LPDs and NHLs are treatable but not curable.

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Len

[MiloTeddy in reply to lankisterguy]

Len

Thank you so much for this information, I appreciate your swift reply.