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Living with cancer· Appointment prep

Appointment sheet: Myeloproliferative neoplasms (PV, ET, myelofibrosis)

One page to bring and write on: your details, the questions for Myeloproliferative neoplasms (PV, ET, myelofibrosis) 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

Myeloproliferative neoplasms (PV, ET, myelofibrosis)

Prepared with OnCo (onco.cc/prep/myeloproliferative-neoplasms/). 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

17 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 JAK2 V617F and exon 12, CALR type 1/2, MPL W515, High-molecular-risk mutations, DIPSS-plus / MIPSS70+ v2.0), 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?
PV
  1. 5.For my situation (pv), which of the standard options do you recommend and why?
  2. 6.Am I a candidate for Hydroxyurea (hydroxycarbamide), Ropeginterferon alfa-2b, Ruxolitinib or related drugs, and what side effects should I expect?
ET
  1. 7.For my situation (et), which of the standard options do you recommend and why?
  2. 8.Am I a candidate for Hydroxyurea (hydroxycarbamide), Ropeginterferon alfa-2b, and what side effects should I expect?
Myelofibrosis, intermediate-2/high risk
  1. 9.For my situation (myelofibrosis, intermediate-2/high risk), which of the standard options do you recommend and why?
  2. 10.Am I a candidate for Ruxolitinib, Fedratinib, Pacritinib or related drugs, and what side effects should I expect?
Anaemia of myelofibrosis
  1. 11.For my situation (anaemia of myelofibrosis), which of the standard options do you recommend and why?
  2. 12.Am I a candidate for Momelotinib, Luspatercept, and what side effects should I expect?
Any stage
  1. 13.Are there clinical trials I could join, for example of Rusfertide, Momelotinib, Luspatercept, Allogeneic stem cell transplantation?
  2. 14.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 15.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 16.I read that “No disease-modifying therapy in myelofibrosis short of transplant”. How does that affect my plan?
  5. 17.I read that “MPN in blast phase: outcomes as poor as secondary AML”. How does that affect my plan?

The words I may hear

  • Aquagenic pruritus: Intense itching, prickling or burning of the skin within minutes of contact with water, typically after a shower.
  • ELN 2022 risk classification: The three-tier system (favourable, intermediate, adverse) that decides how aggressively an adult with AML is treated and whether a transplant is recommended.
  • 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

Biomarker results to ask for: JAK2 V617F and exon 12, CALR type 1/2, MPL W515, High-molecular-risk mutations (ASXL1, EZH2, SRSF2, IDH1/2, U2AF1), DIPSS-plus / MIPSS70+ v2.0, Haematocrit target <45% (CYTO-PV), Platelet count (pacritinib eligibility).

Scans and tests linked to this cancer: NGS-based MRD (clonoSEQ and molecular MRD).

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