Jak2 percentage is 17%

[Auggie17]

What does 17% Jak2 mean exactly. I was told that % meant that my ET was not progressing. I know that’s a good thing but I feel lousy and don’t know what is causing it. I have other health issues so I’m frustrated with my 6 doctors that I see that no one can figure it out.

[EPguy]

17% is in a common range for ET, and your allele burden (AB%) is 17%. But progression is another word for "change". You need at least two tests to compare and know whether there has been any change in any aspect of our condition. Have you had two AB tests?

Have you been able to access the PEG Rx?

Are any of your Drs MPN specialists?

[Auggie17 in reply to EPguy]

I have not had 2 AB tests (genetic test, correct?)I am seeing my hematologist on Friday about PEG Rx.

I see Dr V at MD Anderson as well as my local hematologist. My hematologist told me that I don’t want to go on Interferon as it has terrible side effects. Dr V told me it would be cost prohibitive as it is not covered by insurance in Texas so he thought the same would be for Alabama where I live. He’s the one that said it costs 90k per year.

I’m so frustrated by what they are telling me vs what I’m hearing from our forum. I’m so thankful for this forum as I would not know any of these options.

[EPguy in reply to Auggie17]

Correct that is a genetic test. Dr may have other evidence for your stable ET condition.

Dr V is a top Dr, you're fortunate to have his care. From what I've read here, he's recently become more comfortable with the benefits of IFN.

I'm not in Medicare yet, but from posts here, including from Hunter, getting PEG access depends on which particular plan you select. I think fall is sign up season, you might be able to find a better plan then.

[Auggie17 in reply to EPguy]

Agree on the insurance. I have already asked my broker to find out whether my coverage needs to be changed. Thank you for your advice and affirmation of Dr V. I like him and he is very accessible.

[hunter5582 in reply to Auggie17]

Glad to hear you have been able to access MPN Specialist care. It makes a big difference.

The actual cost of Pegasys in the USA is approximately $4,200/month or $54,000/year. Your share of that depends totally on your plan. Pegasys is on most formularies for hepatitis but it's use for MPNs is off-label. Access depends on your plan.

Regarding tolerability, it really varies by individual. I could not tolerate Hydroxyurea and it was ineffective. The interferons have been both more effective and much easier to tolerate.

If you prefer PEG, then it is certainly your prerogative to pursue it. Wishing you success.

[Jennytheb in reply to hunter5582]

Useful information as usual Hunter, we are lucky in UK not having to pay.... at the moment!!

[Island-Lady in reply to Auggie17]

You can go to goodrx.com to see Pegasys prices. I get mine from Long specialty pharmacy and it took several phone calls to figure out that if it was billed properly mine was actually free. If I had my hematologist office inject it and it were mailed to them it would have been 490 per time through insurance. If you’re able to get it it is worth it to look into whether or not it matters whether it is mailed to you and whether or not you were the one who injects it. Wishing you the best of luck😊

[hunter5582]

Regarding mutant allele burden (AKA variant allele frequency) - here are some references.

ncbi.nlm.nih.gov/pmc/articl...

ashpublications.org/blood/a...

ncbi.nlm.nih.gov/pmc/articl...

[JT_Marlin]

When I was first diagnosed with PV in 2020, I had just had a stroke and my AB was 6.1%. Fast forward a year on Pegasys at the lowest dose, they retested my AB though using a different assay now at just over 10%. We upped my dose to 50% on Pegasys (almost no side effects). Burden dropped to 7.5% at the start of 2022, and for some reason they just teated it again and its at 5%.Beyond the insane cost of Pegasys which thankfully my insurance covers, its been a miracle drug for me.

[EPguy in reply to JT_Marlin]

I see your prior posts that you got CHR fairly quickly on PEG. I've posted reports showing a consistent correlation of CHR to AB reductions, great to see your progress.

Were all your AB tests on blood or were some or all on BMB?

[Wyebird]

I’ve never had a AB test. I did enquire about my level and was just told that she hadn’t got that data. Think I’ll ask again

[JT_Marlin]

All blood - haven’t had a BMB. Good luck getting peg if your willing and able!

[JT_Marlin in reply to JT_Marlin]

Also for whats it worth - I havent needed a therapeutic phlebotomy in over a year now - HCT staying below 45 on its own now!

[Wewo01]

I am so glad for you! I can relate to your story, as I have been through it. Best of luck with the new doctor!