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@1pearl

Hi mdterp76,
Thank you for posting. I do have high platelet but less than one million. I do not know what allele burden from JAK2 means, only that I do not have that mutation. Please teach me. That is great you have great O/H and they are fine with 550 platelets. Mine was wanting 400. I will look into joining the group you posted about.
Great you are doing great and a bit older than I. I hope to doing like you when my situation is more clear. Thanks for sharing.

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Replies to "Hi mdterp76, Thank you for posting. I do have high platelet but less than one million...."

Allele burden is a measure of how prevalent the mutation is in your system.

I've had ET for 17 years, and my dad had it before me, so I have some longer perspectives on care. In the last decade, understanding of ET and other MPNs has exploded. It has taken awhile to filter down to clinicians, who then have to distill the info down to what actually affects patient care.

I do think that doctors are getting away from dosing patients with as much HU as it takes to get numbers below 400. They're looking more at mutation type, age and, overall clot history. They're also much more likely to start low with HU and to add doses as necessary. All of that is very good for us! It means that the docs are treating us as whole people, not as blood test results.

A good way to find out if your doc is up on treating ET us to ask how age and mutation type will figure into your treatment. If they just keep banging on about your platelet counts, might be time to get a second opinion.