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Living with cancer· Appointment prep

Appointment sheet: Essential thrombocythaemia (ET)

One page to bring and write on: your details, the questions for Essential thrombocythaemia (ET) plus your own, the words you may hear, what to bring, the treatments the standard of care names, and room for the answers and agreed next steps. What you type stays in this browser. Print it or save it as a PDF. New to all this? Start with the first 60 days. Orientation, not medical advice.

Tick the questions to print

All of this cancer's questions start ticked. Untick what does not apply; ticks are kept in this browser. .

Your own questions

Shared with the prep pack, so questions you add there appear here too.

Print or save as PDF

Use (or Ctrl+P, Cmd+P on a Mac). To keep a copy, choose Save as PDF as the destination in the print dialog. Only the sheet prints; the controls stay on screen. Your typed notes print where you typed them; empty fields print as ruled lines to write on.

Appointment sheet

Essential thrombocythaemia (ET)

Prepared with OnCo (onco.cc/prep/essential-thrombocythaemia/). Orientation, not medical advice; your team knows your case.

My details

Name
Date of appointment
Hospital and clinician
Who is coming with me

What I know, what is unclear, changes to discuss

Saved in this browser
What I know so far
What is unclear to me
Changes since last time

My questions

20 on the sheet
Newly diagnosed
  1. 1.What is my exact diagnosis, stage, and grade, and which tests established them?
  2. 2.Which biomarkers have been tested on my tumour (for example Platelet count above 450 x 10^9/L, JAK2 V617F, CALR exon 9 and MPL W515 mutations, IPSET-thrombosis score, Marrow histology to exclude prefibrotic myelofibrosis, Acquired von Willebrand deficiency at platelet counts above 1,000 x 10^9/L), and what were the results?
  3. 3.Which subtype is my cancer, and does that change the recommended treatment?
  4. 4.Is germline (inherited) genetic testing recommended for me or my family?
Diagnosis
  1. 5.For my situation (diagnosis), which of the standard options do you recommend and why?
Very low and low risk
  1. 6.For my situation (very low and low risk), which of the standard options do you recommend and why?
  2. 7.Am I a candidate for Aspirin, and what side effects should I expect?
High risk (over 60 with JAK2 or prior clot)
  1. 8.For my situation (high risk (over 60 with jak2 or prior clot)), which of the standard options do you recommend and why?
  2. 9.Am I a candidate for Hydroxyurea (hydroxycarbamide), Ropeginterferon alfa-2b, Anagrelide, and what side effects should I expect?
  3. 10.How do the results of PT-1 (Primary Thrombocythaemia 1) apply to someone like me?
Hydroxyurea resistance or intolerance
  1. 11.For my situation (hydroxyurea resistance or intolerance), which of the standard options do you recommend and why?
  2. 12.Am I a candidate for Anagrelide, Ruxolitinib, and what side effects should I expect?
  3. 13.How do the results of MAJIC-ET apply to someone like me?
Progression to myelofibrosis
  1. 14.For my situation (progression to myelofibrosis), which of the standard options do you recommend and why?
  2. 15.Am I a candidate for Ruxolitinib, and what side effects should I expect?
Any stage
  1. 16.Are there clinical trials I could join, for example of Bomedemstat, Ropeginterferon alfa-2b?
  2. 17.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 18.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 19.I read that “No treatment has been shown to prevent progression to myelofibrosis or leukaemia”. How does that affect my plan?
  5. 20.I read that “Very low-risk patients receive nothing and low-risk patients aspirin, but the evidence for aspirin in CALR-mutated low-risk disease is thin and bleeding may outweigh benefit”. How does that affect my plan?

The words I may hear

  • JAK2 V617F: A single letter change in the JAK2 gene that jams the growth signal for blood cells in the on position.
  • Post-PV myelofibrosis (spent phase): The late stage some people with polycythaemia vera reach after many years, when the marrow scars over, the red count falls and the spleen swells.
  • Erythromelalgia: Burning pain, redness and heat in the hands or feet, brought on by warmth.

Tests and results to bring

Diagnosis: Full blood count, JAK2, CALR and MPL testing, bone marrow biopsy to confirm ET and exclude prefibrotic myelofibrosis, and exclusion of reactive causes (iron deficiency, inflammation, infection, splenectomy).

Biomarker results to ask for: Platelet count above 450 x 10^9/L, JAK2 V617F, CALR exon 9 and MPL W515 mutations, IPSET-thrombosis score (age over 60, prior thrombosis, JAK2 V617F, cardiovascular risk factors), Marrow histology to exclude prefibrotic myelofibrosis, Acquired von Willebrand deficiency at platelet counts above 1,000 x 10^9/L (bleeding risk with aspirin).

Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.

The treatments I may be offered

From the standard of care recorded for this cancer; which apply depends on your stage and biomarkers. Ask which the team recommends and why.

Answers and next steps

Saved in this browser
What I was told
Agreed next steps, dates and who to call