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Living with cancer· Appointment prep

Appointment sheet: Primary myelofibrosis

One page to bring and write on: your details, the questions for Primary 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

Primary myelofibrosis

Prepared with OnCo (onco.cc/prep/primary-myelofibrosis/). 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

21 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, CALR and MPL driver mutations, High-molecular-risk mutations: ASXL1, SRSF2, EZH2, IDH1/2, U2AF1, DIPSS-plus and MIPSS70-plus v2 scores, Marrow fibrosis grade, Spleen volume by imaging), 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?
Lower-risk, asymptomatic
  1. 5.For my situation (lower-risk, asymptomatic), which of the standard options do you recommend and why?
  2. 6.Am I a candidate for Aspirin, Hydroxyurea (hydroxycarbamide), Ropeginterferon alfa-2b or related drugs, and what side effects should I expect?
Symptomatic splenomegaly or constitutional symptoms
  1. 7.For my situation (symptomatic splenomegaly or constitutional symptoms), which of the standard options do you recommend and why?
  2. 8.Am I a candidate for Ruxolitinib, Fedratinib, Pacritinib or related drugs, and what side effects should I expect?
Anaemia of myelofibrosis
  1. 9.For my situation (anaemia of myelofibrosis), which of the standard options do you recommend and why?
  2. 10.Am I a candidate for Momelotinib, Epoetin alfa, Luspatercept, and what side effects should I expect?
  3. 11.How do the results of An Efficacy and Safety Study of Luspatercept (ACE-536) Versus Placebo in Subjects With Myeloproliferative Neoplasm-Associated Myelofibrosis on Concomi and Study of DISC-0974 (RALLY-MF) in Participants With Myelofibrosis or Myelodysplastic Syndrome and Anemia apply to someone like me?
Higher-risk, fit for transplant
  1. 12.For my situation (higher-risk, fit for transplant), which of the standard options do you recommend and why?
  2. 13.Am I a candidate for Ruxolitinib, and what side effects should I expect?
Ruxolitinib failure and trials
  1. 14.For my situation (ruxolitinib failure and trials), which of the standard options do you recommend and why?
  2. 15.Am I a candidate for Navitoclax, Pelabresib, Selinexor or related drugs, and what side effects should I expect?
  3. 16.How do the results of Study of Oral Navitoclax Tablet in Combination With Oral Ruxolitinib Tablet Versus Best Available Therapy to Assess Change in Spleen Volume in Adult Participants With Relapsed/Refractory Myelofibrosis and Study of Selinexor in Combination With Ruxolitinib in Myelofibrosis apply to someone like me?
Any stage
  1. 17.Are there clinical trials I could join, for example of Momelotinib, Pacritinib, Navitoclax, Pelabresib?
  2. 18.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 19.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 20.I read that “No drug has been shown to change the course of the disease rather than its symptoms”. How does that affect my plan?
  5. 21.I read that “Transplant timing: too early risks a fatal procedure in someone with years to live, too late loses the window”. How does that affect my plan?

The words I may hear

  • Anaemia: A shortage of red blood cells or haemoglobin, causing tiredness and breathlessness.
  • Conditioning regimen (myeloablative, reduced-intensity): The chemotherapy (with or without whole-body radiation) given in the days before a stem cell transplant to destroy the diseased marrow and, for donor transplants, suppress the patient's immune system so the graft is not rejected.
  • 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.
  • Allogeneic stem cell transplant (allo-SCT): Replacing a patient's blood system with a donor's: chemotherapy wipes out the marrow, donor stem cells rebuild it, and the donor's immune cells hunt down leftover leukaemia.

Tests and results to bring

Biomarker results to ask for: JAK2 V617F, CALR and MPL driver mutations (or triple negative), High-molecular-risk mutations: ASXL1, SRSF2, EZH2, IDH1/2, U2AF1, DIPSS-plus and MIPSS70-plus v2 scores, Marrow fibrosis grade, Spleen volume by imaging, Haemoglobin, platelet count and transfusion dependence, Blast percentage, Symptom score (MPN-SAF TSS).

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