Does anybody else have Polycythaemia Vera with CAL R and TET2 mutations? My doctors seem to be very confused..

[Emurr]

Hey everyone, My name is Erik I’m new here and if anybody has any info they could share with me about this, as I was just diagnosed in December 2018, but haven’t been feeling good for a very long time I would appreciate it!Thank you in advance.

[socrates_8]

Hey Erik...

Welcome to our rather exclusive little club...

I am sorry but I do not have PV w/ CALR+ w/ TET2

In my case, I also found that doctors knew very little about my MPN condition, and still do...

In the Australian fora, there are very few of such people as MPN Specialists per se.

I have Post ET/MF these days... I am CALR+ Type2, and I also have ASXL1+

Part of the reason why doctors do know so very little is simply because the 'Driver' mutations, (JAK2; MPL & CALR), are actually relatively newly discovered w/ JAK2 & MPL being uncovered circa 2005-6, & CALR not until 2013. Hence, we still have much learning at this early stage of our MPN journeys...

Erik, where are you located?

If you are in the UK or the USA, then there are far more MPN Specialists available to you, and I would strongly suggest that you seek one out...

Very best wishes

Steve

(Sydney)

[hunter5582]

If you have not already had the chance to consult with a MPN Specialist, it is worth whatever to takes to do so. Here is a link to some patient-recommended docs with MPN expertise mpnforum.com/list-hem./ .

While I am JAK2+ PV, my presentation is not typical. When I consulted with a MPN expert doc, he changed my treatment protocol based on my individual presentation rather than relying on the default standard treatment protocol. Most docs, even hematologists, do not have enough experience with MPNs to do this.

Hope you get answers soon. All the best.

[clubdino]

CALR positive PV is supposed to be extremely rare.