u/no_more_lawns

I was just diagnosed with ET this morning by my hematologist. I have CALR type 1, and haven't had any thrombosis events yet, so she put me at very low risk. I also have fibrosis 1-2 out of 3, and collagen 1 out of 3, but she's not worried about it. I'm 38 F.

I'm sure she's making the right decision, because I don't want to start interferon unless I really need to.

But I do have platelets going around 1200-1400, and I was wondering if anyone has experience with this?

My first von Willebrand test was inconclusive, so I'm redoing it tomorrow, which means I'm also off of aspirin while we wait for that.

Anyway, anyone else with extreme thrombocytosis and no treatment?

Hi, I wrote here before, before I had many results.

I'm a woman, 38 year old.

I'm 2021-2022, my platelets were between 691 and 786. I wasn't sent to a hematologist because they thought it was reactive.

All results are from three dates in April:

Platelets (1451, 1305, 1177); Hemoglobin (144, 142, 129); Hematocrit (0.438, 0.423, 0.381); Ferritin (149, 186); LDH (437, 412). The rest of my CBC is all normal.

Few Ovalocytes and Rare Schistocytes.

I got this preliminary results from my bone marrow biopsy (it has been sent for an expert consult):"Right posterior superior iliac spine (bone marrow biopsy): Hypercellular, immature bone marrow with abundant megakaryocytes with dysplasia. Specimen consists of a hypercellular bone marrow as well as several blood clots. The bone marrow appears immature and there is abundant megakaryocytes of various forms including dysplastic megakaryocytes."

And I just got my gene mutation results back with CALR L367fs (Type 1) mutation at 50% VAF.

They also found a 5 cm lesion on my (non cirrhotic, healthy) liver, but my spleen is normal size.

This feels like pre-MF? Maybe progressing? What does the 50% VAF means in this case?

I'm spiralling a little bit, so thanks for all info you could give me before I get the final results and my follow up with my hematologist (I'm also waiting on the MRI for my liver).

Hi! Woman, 38 years old.

I had my bone marrow biopsy this week and I'm also still waiting for my gene mutation results, but my hematologist pretty much told me she was sure I have a MPN (we're hoping ET).

I just received my results for VWD and I was wondering if I'm right to think this might be acquired VWD? I'm on aspirin three times a week, so I'm sure I'll get a call if it's contraindicated but I was curious to know if my research was sound.

Platelets 1451 to 1305 to 1177 (from a month ago to Tuesday)

Lactate Dehydrogenase 412

Alkaline Phosphatase 43

Ovalocytes few (abnormal)

Schistocytes rare (abnormal)

Ferritin 186

Factor VIII 0.97

Von Willebrand Factor Activity 0.44

Von Willebrand Factor Antigen 0.78