Unusual biopsie findings

[artydutch]

I had a follow up yesterday and heard that the MDT meeting review my trephine biopsy. A new observation is that I had, beyond a granuloma relating to sarcoidosis, a' high number of B cells and lymphocytes'. I will in due course received a report on this. Has anyone heard this before and any idea what the significance of this finding is? Also I have lower platelet counts in the last few months, more itching and spleenb is suddenly + 6 cm.

[hunter5582]

Lymphocytes are part of your immune system that are comprised of B-Cells, T-Cells and Natural Killer Cells. urmc.rochester.edu/encyclop...

Elevation in lymphocytes can occur for a number of different reasons. my.clevelandclinic.org/heal...

Interpreting these results is something you will need to consult your MPN care team about. They will best help you to understand the meaning in the context of having MF. Depending on the presumed cause, they can help you to define next steps.

Please do let us know what you learn and how you get on.

[artydutch in reply to hunter5582]

Thanks for the references. Let’s just hope it is my sarcoidosis or pernicious anemia causing the high numbers rather than something more sinister. Since the summer on B 12. Sadly my MF has progressed and now MF intermediate 2, with also low platelets and enlarged spleen in addition to symptoms and age…..

[artydutch in reply to hunter5582]

I am looking to see how fast a spleen enlarges but cannot find any info. Do you have any references?.

[ALlady]

For many years my mother had a condition called monoclonal B cell lymphocytosis. She had a consistently low hematocrit. She was extremely active all her life, a skilled and avid gardener. She died with these conditions at 93! May your life be as blessed.

[artydutch in reply to ALlady]

I am really hoping it is something of a more benign nature. I try not to worry ahead too much. Thank you.

[hunter5582 in reply to artydutch]

I do not have any specific information on the rate of increased splenomegaly. I am curious as to whether the issues with the spleen are related to the lymphocytosis. Did you get started on RUX?

[artydutch]

I have finally got the go ahead for Rux from Cambridge. This has been a battle with my local hematologist ( not on the MPN team) who has been stalling prescribing, worrying that my low platelets were due to the Azathioprine I take for my sarcoid. I asked my GP to refer me to London as I was not convinced I would get it.

I went to London to Guys last week and I can be a patient there and get Rux. However they were puzzled why I am not under Anna Godfrey in Cambridge?. 30 minute journey instead of 3 hours. I told them I did not know either. Guys have emailed Anna Godfrey to see me.

I have asked my current hematologist why not go to Anna Godfrey and he said they are over capacity in Cambridge. I can get Rux it but have to go to my general hospital with no real hema oncology.

I refused, as I do not want another doctor who is not MPN expert. I am waiting to hear if it is Cambridge or London. It has been a a complex battle and I am unwell and tired.

I thought being complex with comorbidities, I would stay in a centre of excellence. I feel I have lost nine months on watch and wait, suggested by an hematologist who is not advising the same route as the Experts.

I progressed to MF intermediate 2 with now also a large spleen, which I feel might have been avoided. Not good and very frustrated.