Allele Test for PV by Blood?

[Luthorville]

I went to my Hematologist today and asked whether there was an allele blood test for PV and the response I received was no. I thought I had read on these boards about such a blood test existed and it was not necessary to do a bone marrow biopsy. Does anybody know?

[ainslie]

yes , it can be done from blood or marrow

[hunter5582]

The JAK2 mutation tests can be done with either blood or bone marrow aspirate. These tests can be either qualitative (yes/no) or quantitative (JAK2 allele burden %). Note that what blood tests cannot do is determine bone marrow morphology, which is one of the diagnostic criteria for PV. PV can be diagnosed without the BMB results, but many docs prefer to do a BMB as part of the diagnostic process.

[MWxxxx]

Yes it can be done but not all hospitals can. I had my blood test done at my local hospital but it had to be sent away to be tested and get the results.

[Yanks7 in reply to MWxxxx]

Mine had to be sent out also. It was November 2022 and I think it took a couple of weeks for the results. After a couple of visits discussing the allele test I read about on this forum, my hemo agreed to look into it the viability, insurance coverage, etc and we will potentially do one my next visit early May. I'm hoping for the best because I feel like I owe it to myself to monitor this data point as part of my care. I feel good, my blood tests are all in range, side effects are minimal, but I still feel I should know and monitor my allele.

[william-Indo in reply to Yanks7]

Yes, it cover by insurance

[william-Indo]

Alele burden can be test with blood only.No need bone marrow.

My doc did it every year.

Cheers

[Yanks7 in reply to william-Indo]

THANK YOU for this response! I'm sure, then, that it will be part of my next blood draw in May. To be honest, I'm a little bit worried about maybe bad news coming, but on the other hand I do want to have all information possible to understand what I am dealing with. Thanks again, sincerely!

[Meatloaf9]

Yes it can be done. I have had 4 since diagnosis. My last AB was done in December. It was sent from my local hospital to Quest Laboratories in Virginia, it took about 10 days to get the results. It was covered 100% by my medicare and medicare supplement. The total cost that Quest billed medicare was 270.00, much less than previous tests.

The hardest part was getting my new local hematologist to order the test. 3 years ago my AB was 50% and I was started on HU, after almost 3 years on HU my AB came in at 19.7. I will request a check again in 6 mo and if it is increasing like the Proud PV study indicates it will then I will consider a switch to Interferon. I have excellent blood results right now and no side effects from the HU.

Best to you

[Luthorville in reply to Meatloaf9]

Thank you - (and to everyone). Wish the doc knew. I just googled it and the test apparently is a "peripheral blood" test. PB. Fantastic.