Rechecking JAK2 V617F Allele Burden

[JT_Marlin]

Hi all,

I have an appt with my heme on Feb 4 where he will test my allele burden - 1 yr since my PV diagnosis. Been on a daily double dose of a baby aspirin, weekly pegasys 45mcg, and phlebotomies as necessary ever since.

I’ll report back on the results.

Curious if others have stories/data to share on changing allele burdens over time?

Eric

[Paul123456]

I was dx PV in 2016 with JAK2 at 56%. Over next 2 years it rose to 80% before starting Pegasys. Now 10%. I also have TET2 which has dropped from about 50% to 25%.Obviously delighted with Pegasys! Latest research appears to support starting low dose Pegasys at an earlier stage.....

[JT_Marlin in reply to Paul123456]

That’s fantastic news paul! Thanks for sharing.

[Meatloaf9 in reply to Paul123456]

Hi Paul, do you have any links to the research articles that show the lowering of the allele burden and other benefits to mpn'ers from the use of Pegasys?

[hunter5582]

I just had my JAK2 mab rechecked. 2019 = 25%. 2020 = 26%. Not a significant increase. Also had non-driver mutations checked. Negative for everything except for NF1:c5425C>T - which I already knew I had. I am on a phlebotomy-only tx regimen. Glad to see the mab not progressing, but have seen an uptick in thombocytosis. In the absence of disease progression suspect it is due to the iron deficiency from the phlebotomies. We will see how it play out over the next several months. May opt for Besremi when it is available. Plan to opt for PTG-300 when it get approved.

Do please let us know how things go for you. Hope you find the PEG-IFN works for you. Hematological and molecular remission would be a great thing! It is the closest thing we have to a cure for MPNs.

[ts75]

Hi Eric,I was diagnosed with ET Jan 2020 and hax my JAK2 allele burden measured i Dec 2019. Then rechecked in Dec 2020. Same same. Am not on meds except for baby aspirin Hope your news is good too!

[JT_Marlin]

Update here...mine went up from 6 to 10% in one year while on low dose pegasys...sounds like much lower than some of the other folks on here. Though I questionably had a heart attack 5 years ago from this and a stroke last year....so I am a bit scared about it continuing to increase from here... The interesting thing that the doc mentioned was that in the past year the hospital decided to use a different lab which has a different assay so they suggested that comparing the 6 and 10 is apples and oranges. While I can to some degree appreciate different assays having different specificities on results, how can it be apples and oranges if in fact they are trying to measure the same thing!?

[Manouche in reply to JT_Marlin]

I wouldn’t worry about your AB. It frequently increases the first year, especially in the absence of a full haematological response. Symptoms are not related to the allele burden but to the Blood Count. Your BC should get better and better over the next 2 years.