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Living with cancer· Appointment prep

Appointment sheet: NPM1-mutated and KMT2A-rearranged acute myeloid leukaemia

One page to bring and write on: your details, the questions for NPM1-mutated and KMT2A-rearranged acute myeloid leukaemia 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

NPM1-mutated and KMT2A-rearranged acute myeloid leukaemia

Prepared with OnCo (onco.cc/prep/aml-npm1-kmt2a/). 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 NPM1 mutation and NPM1 transcript MRD, KMT2A rearrangement by FISH or RNA sequencing, FLT3-ITD co-mutation, MEN1 mutations, ELN 2022 risk group), 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?
Newly diagnosed, fit for intensive chemotherapy
  1. 5.For my situation (newly diagnosed, fit for intensive chemotherapy), which of the standard options do you recommend and why?
  2. 6.Am I a candidate for Cytarabine + anthracycline ('7+3'), and what side effects should I expect?
Newly diagnosed, unfit for intensive chemotherapy
  1. 7.For my situation (newly diagnosed, unfit for intensive chemotherapy), which of the standard options do you recommend and why?
  2. 8.Am I a candidate for Venetoclax, Azacitidine, and what side effects should I expect?
  3. 9.How do the results of VIALE-A apply to someone like me?
Relapsed or refractory
  1. 10.For my situation (relapsed or refractory), which of the standard options do you recommend and why?
  2. 11.Am I a candidate for Revumenib, Ziftomenib, and what side effects should I expect?
  3. 12.How do the results of AUGMENT-101 and KOMET-001 apply to someone like me?
Any stage
  1. 13.Are there clinical trials I could join, for example of Revumenib, Ziftomenib, Bleximenib, Menin inhibitors?
  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 “Whether a menin inhibitor added to first-line therapy raises cure rates in NPM1-mutated AML”. How does that affect my plan?
  5. 17.I read that “MEN1 resistance mutations and how to sequence or combine inhibitors around them”. How does that affect my plan?

The words I may hear

  • Differentiation syndrome: When a targeted drug makes leukaemia cells mature all at once, causing fever, fluid in the lungs, and weight gain.
  • 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.
  • Minimal / molecular residual disease (MRD): Cancer still present after treatment but too small to see on scans, detected by blood or marrow tests.

Tests and results to bring

Newly diagnosed, fit for intensive chemotherapy: 7+3 induction with consolidation; NPM1 MRD monitoring decides transplant in favourable-risk disease; transplant in first remission for KMT2A-rearranged and FLT3-ITD co-mutated disease.

Newly diagnosed, unfit for intensive chemotherapy: Venetoclax plus azacitidine, with a menin inhibitor added in trials.

Biomarker results to ask for: NPM1 mutation and NPM1 transcript MRD, KMT2A rearrangement by FISH or RNA sequencing, FLT3-ITD co-mutation, MEN1 mutations (menin inhibitor resistance), ELN 2022 risk group, HOXA9 and MEIS1 expression.

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