Hello everyone I went to see my haemo this morning to get results of latest raft of blood tests. My platelets have risen to 688, I'm Jak2 negative (is that good or bad?) and I'm positive for something called CALR, which he says can predispose someone to develop AML or myelofibrosis. H3e explained it all but I'm not sure I understood properly, can anyone shed more light on it? Does anyone else have CALR? He wants to do a BMB to see what's going on and then he says I'll need to start hydroxyl. If anyone can help me understand all this I'd appreciate it!
Recent blood tests: Hello everyone I went to see... - MPN Voice
Recent blood tests
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Hall2
From my very limited understanding of MPNs and progression, ET with JAK2 -ve and CALR mutations is about as good as it gets!!!
I believe ET and JAK2 -ve are both associated with slow progression and CALR is associated with very slowly developing MF so it’s possible that if you are more predisposed to MF (due to the CALR) your prognosis is then much improved. Others more knowledgeable than me can comment but I believe the DIPPS score, which is used to advice MF patients on prognosis, adds a point if NOT CALR.
However please clarify/confirm with your Hem.
Best
Paul
Hi. I have E.T. jak negative and am Calr positive. I was diagnosed almost 14 years ago and have been on Hydroxycarbamide for 13 years, plus aspirin and lansaprazole. I did have a BMB to confirm the diagnosis (that was the normal thing to do then) and a scan on my spleen. I have blood tests every 2-3 months and the medication tweaked if needed. At present , I am showing no sign of MF.
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Hi Hall2, have a look at this information in one of our previous newsletters
mpnvoice.org.uk/documents/n...
it might help. Best wishes, Maz
Hi Maz thanks for this it is helpful. Angela