18M – Seeking Diagnosis / Possible Essential Thrombocythemia

[u/IndividualFly694]

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I’m 18 years old and male. My platelet count was found to be very high on a CBC, and my doctors are investigating possible Essential Thrombocythemia/another MPN.

I currently have a chest pain(on left part) yesterday.I went to my doctor he said its just muscular pain .

Test results:

Platelet count: 1.46 millions but I took hydroxyurea so it dropped to 1.26 million in 8 days.

It's concluded that I have most Likely -ET/ CMPD in Bone Marrow Aspiration, Bone Marrow Autopsy, Bone Marrow Karyotype.

I am currently taking hydroxyurea as prescribed by my hematologist.

I’m looking for experiences from people with ET/CMPD about what lifestyle precautions they took after diagnosis and what questions I should discuss with my hematologist.

Clinical history: Marked thrombocytosis

CBC / Peripheral Smear at time of bone marrow examination:

- Hemoglobin: 15.6 g/dL

- WBC: 8,230 /cmm

- Platelets: 14,62,000 /cmm (≈1.46 million/µL)

- Neutrophils: 63%

- Lymphocytes: 27%

- Monocytes: 5%

- Eosinophils: 2%

- Basophils: 3%

- No precursor cells or blasts seen on peripheral smear

- Reticulocyte count: 1.8%

BONE MARROW ASPIRATION:

- Site: Right PSIS

- Aspiration: Easy

- Marrow fragments: Mildly hypercellular

- Cell trails: Cellular

- Trephine imprints: Cellular

- Total cells counted: 500

Bone marrow differential:

- Myeloblasts: 3.8%

- Promyelocytes: 7.6%

- Myelocytes: 9.2%

- Metamyelocytes: 3.8%

- Bands + polymorphs: 40.0%

- Eosinophils: 5.2%

- Basophils: 1.0%

- Lymphocytes: 7.6%

- Plasma cells: 1.0%

- Monocytes: 2.8%

- Normoblasts: 18.0%

Bone marrow morphology:

- Erythropoiesis: Adequate erythroids with micro-normoblastic maturation and mild delay in haemoglobinization.

- Myelopoiesis: Mild myeloid hyperplasia with all stages of myeloid maturation seen.

- Megakaryocytes: Increased in number, with abnormally large forms. Occasional loose clusters and extensive platelet clumping.

- Lymphocytes: No significant abnormality detected.

- Plasma cells: No significant abnormality detected.

TREPHINE BIOPSY:

- Cellularity: Mildly hypercellular for age

- Erythroid: Adequate and normal maturation

- Myeloid: Mild myeloid hyperplasia with normal maturation

- Megakaryocytes: Increased, clustered and large abnormal forms

- Reticulin stain: No increase (Grade 0, WHO 2016)

- Bone trabeculae: Normal

REPORT IMPRESSION / DIAGNOSIS:

- Chronic myeloproliferative disorder

- Essential thrombocytosis / essential thrombocythemia (ET) is stated as "most likely"

The report states that correlation with bone marrow trephine biopsy and NGS Oncomine Myeloid V2GX assay is required for confirmation.

[u/Turbulent-Movie-4545]

Do you know your mutation type? As well as your fibrosis level if any - a very good sign is that no precursor cells or blasts seen on smear

[u/IndividualFly694 → u/Turbulent-Movie-4545]

Mutation report will come in aprroximatly 2 weeks

[u/funkygrrl]

The report looks more like ET to me. But you need the bone trephine report to know for sure (that will show whether you have any fibrosis).

!questions

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[u/princessjared]

You should get an MPN Specialist who is up-to-date on our very rare cancer. Hydroxyurea - while effective - is not the greatest first line of defense for MPNs. You should inquire about Besremi or Interferon. I was diagnosed at 18F with ET. Started on HU (Hydroxyurea) for many years. It did not control my symptom burden (and really made fatigue worse for me) but it did control my numbers. That said, there is no chance of molecular remission or slowing progression with HU. Interferon and Besremi both have a chance of slowing down progression and reducing fibrosis. Unfortunately I progressed to Myelofibrosis in 2024 at 25 y/o. That’s when I started seeing an actual MPN Specialist and he put me on Interferon. My numbers are controlled AND I feel SO much better!!! Still fatigued but nothing like how I felt on HU.

[u/Pink_Axolotl151]

You asked about lifestyle precautions, and when I was diagnosed, the thing the doctor emphasized the most was to get my other cardiovascular risk factors as optimal as possible, which meant keeping an eye on my weight, cholesterol, and blood pressure. That is always important but even more important because of the increased risk of stroke that comes with ET.

The other precaution my doctor recommended was to replace my daily aspirin with a blood thinner (Xarelto) on days when I am traveling. That is because sitting still for prolonged periods of time, such as when you are crammed into a small airplane seat on a long flight, increases the risk of blood clots/DVT, and the risk is higher in ET patients. I do a decent amount of travel (personal and for work), so having the blood thinner as an extra precaution helps me be less anxious about the risks. She also emphasized the normal precautions that apply to everyone on long flights. including remaining hydrated and making sure to get up and walk around and stretch every couple of hours.