Recent blood tests

[hall2]

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!

[Paul123456]

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

[hall2 in reply to Paul123456]

Hi Paul

Thanks for your reply. I'll be seeing him again in a couple of weeks, so I'll check that out!

[mol56]

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.

[hall2 in reply to mol56]

Hi thanks for your message, I hope that I'll have no signs of MF too!

[Mazcd Partner MPNVoice]

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

[Kelly2 in reply to Mazcd]

Hi Maz. I can’t find your email to write to you. Could you please send it to me again? ☺️

[Mazcd Partner MPNVoice in reply to Kelly2]

Hi Kelly, it's [e-mail]

[Kelly2 in reply to Mazcd]

Thank you Maz!

[hall2]

Hi Maz thanks for this it is helpful. Angela