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Appointment sheet: Acute myeloid leukaemia

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

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Your own questions

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Appointment sheet

Acute myeloid leukaemia

Prepared with OnCo (onco.cc/prep/aml/). 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

41 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 FLT3-ITD/TKD, NPM1, IDH1/2, KMT2A, TP53), 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?
Fit
  1. 5.For my situation (fit), which of the standard options do you recommend and why?
  2. 6.Am I a candidate for Gemtuzumab ozogamicin, and what side effects should I expect?
Unfit
  1. 7.For my situation (unfit), which of the standard options do you recommend and why?
  2. 8.Am I a candidate for Venetoclax, and what side effects should I expect?
Relapsed
  1. 9.For my situation (relapsed), which of the standard options do you recommend and why?
  2. 10.Am I a candidate for Revumenib, and what side effects should I expect?
Diagnosis and risk assignment
  1. 11.For my situation (diagnosis and risk assignment), which of the standard options do you recommend and why?
Fit, FLT3-mutated
  1. 12.For my situation (fit, flt3-mutated), which of the standard options do you recommend and why?
  2. 13.Am I a candidate for Cytarabine + anthracycline ('7+3'), Midostaurin, Quizartinib, and what side effects should I expect?
  3. 14.How do the results of RATIFY (CALGB 10603) and QuANTUM-First apply to someone like me?
Fit, favourable or intermediate risk, CD33-positive
  1. 15.For my situation (fit, favourable or intermediate risk, cd33-positive), which of the standard options do you recommend and why?
  2. 16.Am I a candidate for Gemtuzumab ozogamicin, Cytarabine + anthracycline ('7+3'), and what side effects should I expect?
  3. 17.How do the results of ALFA-0701 apply to someone like me?
Fit, secondary or therapy-related AML
  1. 18.For my situation (fit, secondary or therapy-related aml), which of the standard options do you recommend and why?
  2. 19.Am I a candidate for CPX-351 (liposomal daunorubicin-cytarabine), and what side effects should I expect?
  3. 20.How do the results of CPX-351 Study 301 apply to someone like me?
Fit, adverse risk (TP53, complex karyotype, MDS-related)
  1. 21.For my situation (fit, adverse risk (tp53, complex karyotype, mds-related)), which of the standard options do you recommend and why?
  2. 22.Am I a candidate for Venetoclax, Azacitidine, Magrolimab, and what side effects should I expect?
Unfit for intensive chemotherapy (most patients over 75)
  1. 23.For my situation (unfit for intensive chemotherapy (most patients over 75)), which of the standard options do you recommend and why?
  2. 24.Am I a candidate for Venetoclax, Azacitidine, Decitabine + cedazuridine (oral) or related drugs, and what side effects should I expect?
  3. 25.How do the results of VIALE-A and AGILE apply to someone like me?
Maintenance after intensive therapy
  1. 26.For my situation (maintenance after intensive therapy), which of the standard options do you recommend and why?
  2. 27.Am I a candidate for Azacitidine, Gilteritinib, Quizartinib, and what side effects should I expect?
Relapsed or refractory, FLT3-mutated
  1. 28.For my situation (relapsed or refractory, flt3-mutated), which of the standard options do you recommend and why?
  2. 29.Am I a candidate for Gilteritinib, and what side effects should I expect?
  3. 30.How do the results of ADMIRAL apply to someone like me?
Relapsed or refractory, IDH-mutated
  1. 31.For my situation (relapsed or refractory, idh-mutated), which of the standard options do you recommend and why?
  2. 32.Am I a candidate for Ivosidenib, Olutasidenib, Enasidenib, and what side effects should I expect?
Relapsed or refractory, NPM1-mutated or KMT2A-rearranged
  1. 33.For my situation (relapsed or refractory, npm1-mutated or kmt2a-rearranged), which of the standard options do you recommend and why?
  2. 34.Am I a candidate for Revumenib, Ziftomenib, and what side effects should I expect?
  3. 35.How do the results of AUGMENT-101 and KOMET-001 apply to someone like me?
Acute promyelocytic leukaemia
  1. 36.For my situation (acute promyelocytic leukaemia), which of the standard options do you recommend and why?
Any stage
  1. 37.Are there clinical trials I could join, for example of Revumenib, Venetoclax, AK117, HMPL-306?
  2. 38.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 39.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 40.I read that “TP53-mutant AML: no drug class has yet improved survival, so it is the priority for new mechanisms”. How does that affect my plan?
  5. 41.I read that “Older patients”. How does that affect my plan?

The words I may hear

  • 7+3 induction chemotherapy: The classic first treatment for acute myeloid leukaemia, unchanged since 1973: seven days of continuous cytarabine plus three days of an anthracycline, given in hospital.
  • FLT3-ITD allelic ratio: How much of the FLT3 gene in the leukaemia carries the internal duplication, measured as the ratio of mutant to normal copies.
  • Metabolic theory of cancer: from Warburg to oncometabolites: Otto Warburg noticed a century ago that cancer cells ferment glucose even when oxygen is plentiful and concluded that damaged respiration causes cancer.
  • Differentiation syndrome: When a targeted drug makes leukaemia cells mature all at once, causing fever, fluid in the lungs, and weight gain.
  • Epigenetic progenitor theory: cancer without a first mutation: The proposal that cancer begins not with a mutation but with a reversible change in how genes are switched on and off in a stem or progenitor cell, which then makes later mutations more likely and more dangerous.
  • Ageing tissue and clonal fields: cancer as a disease of old tissue: Sequencing of healthy skin, gullet and blood shows that by middle age they are patchworks of mutant clones, many carrying classic cancer mutations, yet cancer stays rare until old age.
  • Cancer stem cell theory and phenotypic plasticity: The idea that a tumour is organised like a tissue, with a small pool of stem-like cells that renew it and a bulk that cannot, so killing the bulk shrinks the tumour but the stem-like cells regrow it.
  • 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.
  • 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.
  • Consolidation therapy: Treatment given after a good response to kill the cancer cells that are presumably left but cannot be seen, to make the remission last.

Tests and results to bring

Diagnosis and risk assignment: Marrow morphology, flow, karyotype/FISH, rapid FLT3/NPM1/IDH testing (results within days), NGS panel; ELN 2022 risk; fitness assessment. Menin-inhibitor and FLT3-inhibitor eligibility depends on these results.

Biomarker results to ask for: FLT3-ITD/TKD, NPM1, IDH1/2, KMT2A, TP53, CD33, ELN risk, MRD, ELN 2022 genetic risk group, FLT3-ITD and TKD (midostaurin, quizartinib, gilteritinib), NPM1 (favourable risk without FLT3-ITD; MRD marker; menin inhibitor eligibility), IDH1 / IDH2 (ivosidenib, olutasidenib, enasidenib), KMT2A rearrangement (revumenib), TP53 and complex karyotype (adverse; venetoclax less effective), CD33 (gemtuzumab), CD123 (tagraxofusp, pivekimab), Measurable residual disease (flow, NPM1 qPCR, NGS) after cycles 2 and before transplant, Karyotype/FISH at diagnosis, Myelodysplasia-related mutation set.

Scans and tests linked to this cancer: Comprehensive genomic profiling, Cytogenetics and FISH, Flow cytometers, Multiparameter flow cytometry MRD, NGS-based MRD (clonoSEQ and molecular MRD), G8 geriatric screening tool.

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