I have Jak 2 and ET. My platelet count is 700. The other labs are good.

[milw532]

The doc says I am stable and can continue on just a baby aspirin . I am somewhat relieved but worry about progression. I was diagnosed over 21/2 years ago after noticing blood work with a slowly creeping up platelet count Is it inevitable that numbers will continue upward and necessitate more drugs? What recommendations /experiences have you had. Is the alliele burden test worth pursuing? Do numbers ever stay constant at a certain point?

[Elzbietta]

I was stable for 10 years at 900 with low blood pressure and under age 60 s and just took aspirin so am similar to you but my platelets hit 1200 last year and I succumbed rather unwillingly to taking hydroxurea.

Now down under 700 and glad I took it. No side effects.

If you can stay on aspirin even better but try not to worry. Many people seem to have our condition and remain steady.

Personally I see no benefit in investigating further unless required or it would change your treatment which it won’t. I am JAK2 positive.

I hope even on Hydroxurea I’ll live another 30 years and the drugs and medicine will only improve. 🙏🙏🙏

Try not to worry... stress is not good.

[Hidden in reply to Elzbietta]

Great advise l feel the same

[milw532 in reply to Elzbietta]

Thank you for your assurance. I am curious--how much did your count go up from year to year (or month to month) Over the course of this last 12 months, platelets rose 129 (12 months) What does stable imply? I am just trying to understand better. Thanks!

[Elzbietta in reply to milw532]

The first year I jumped from 600 to 900 so that was a bit of a worry. For the next ten it was always around 900... Eg. 880 to 950 so that seemed pretty stable to me and doctor said small fluctuations were normal and not a worry . ( seemed to be about 10% variation only didn’t concern him) but heading to 1200.. that was a 25% jump in 6 months And heading to unsafe numbers given nearly 60 years old.

Hope that explains it.

[Wyebird]

Elzbietta has given sound Advise - I echo it xx

[milw532 in reply to Wyebird]

Thank you!

[Manouche]

The allele burden test is usually considered useless for those who prefer a treatment based solely on phlebotomy or HU. It can be a useful test for those taking INF as it can potentially eradicate the malignant clone. It’s worth remembering the following :

« The period of doubling of the pooled data was found as 1.4 years (CI: 1.2 to 1.7 years). This implies that the allele burden grows from 0.01% to 1% in 9.3 years, while the growth from 1% to 33% takes 7.1 years. Therefore, detecting the JAK2V617F allele burden ≤ 1% allows for a much longer time‐window for detection and early therapeutic intervention before symptoms arise. »

[hunter5582]

Different docs have different opinions. Some routinely check mutant allele burden. Some never bother. The MPN Specialist I consult with will look at it initially, but not recheck unless there is a change in disease status. There is a clonal advantage to JAK2 mutated hemopoietic stem cells over the wild-type (normal) cells. There is a tendency for allele burden to progress over time. I expect we each have different rates at which this can occur. Research is underway to better understand the issue of allele burden. The short version is that it does matter, but the role is not entirely clear.

What really matters most is what symptoms your are experiencing. For some of us the MPN is relatively indolent. We can go on for a very long time with minimal treatment intervention until more significant treatment is needed. Here is a great commentary on the topic that you may find useful.

vjhemonc.com/video/9rf073wi...