Polycythemia Vera mutations

[Lyineyes]

I have polycythemia vera and doctor found Exxon 12 mutation present. Does anyone else have this? I’d appreciate any info on this issue. Thanks

[fee13]

bloodjournal.org/content/13...

[MPort]

Hi

I skimmed info on the link provided below. As I understand it if we have PV it is because we have mutations. The famous JAK mutation is frequently referred to. However although I have had PV for 15 years I don't know what mutations I have. I think most of us don't know. I did ask if I could have the necessary blood test and was told it wasn't necessary and it wouldn't help me to know. I accepted that decision as logically it is correct. I wouldn't have a clue of the significance of the findings and no way to interpret the research.

If you find out more it would be good to hear about it.

Mairead

[tracey13]

My husband has got PV but last year it changed to post PV MF he's got some fibrosis in his bone marrow.

His consultant doesn't test for any other mutations we know he's jak2 positive.

He's on two hydroxy per week and 2x 500mg of ruxolitanib daily .

His bloods are all in range.

We hope this may continue.

He does suffer low moods anxiety and depression .

Tracey