how do we know a triple negative diagnosis??

[EnergizerBunnyz]

new to ET and all three tests came negative (Jak2, CALR, MPL) and high 80s on CSR! Concerned on what all this means?

[hunter5582]

Hello and welcome to the forum.

You are among the rare of the rare, a triple-negative ET. You will, however, find others here on the forum in the same situation.

The best thing to do at this point is to consult with a MPN Specialist about your case. Many doctors, including hematologists, have little experience with MPNs due to how rare they are. MPN expert consultation can make a huge difference in ensuring optimal care. Here are two lists.

mpnforum.com/list-hem./

mpnforum.com/list-hem./

Answering what it all means will require more information that just the absence of the three driver mutations. The current status of your bone marrow morphology, the presence of non-driver mutations, your level of thrombocytosis, history of thrombosis or hemorrhage, and co-occurring medical conditions are all relevant. This would all be something to review with a MPN Specialist to interpret what it all means for you.

Here are a couple of articles you may find of interest.

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

frontiersin.org/journals/on...

Wishing you all the best.

[MaggieSylvie]

Hi Energizer Bunnyz, I am in the same club as you. But I am much older, so not being treated with anything apart from aspirin and the old Watch and Wait. I have thrombocytosis but not essential thrombocytosis. What I do have, that I believe is more concerning, is MDS - refractory anaemia with ring sideroblasts (this is not to do with platelets, but with haemoglobin and the delivery of oxygen where it's needed). My platelet count is not really concerning, coming down all the time. Most people with ET have at least one of the three mutations, and there are others, less common. You and I may have a mutation but it hasn't been identified. So it's good to meet someone who's a bit similar to me - at least a rare bunny!😀

[EnergizerBunnyz in reply to MaggieSylvie]

Thank you for sharing and appreciate the insights. I have ET and lot of fatigue. Waiting for Hemo's diagnosis. not sure if next steps will be BMB or NGS or something else. Confused about what diet to follow etc.

[MaggieSylvie in reply to EnergizerBunnyz]

Oh, sorry Bunny, I have fatigue but don't think I can blame platelets, that are mostly below 500. I had to have a BMB in order to get the diagnosis. I had lots of blood tests and without the BMB I don't think they knew what was going on. I'm vegetarian and don't think about diet very much, so long as it's balanced.