Appointment sheet
Acute myeloid leukaemia in children
Prepared with OnCo (onco.cc/prep/aml-paediatric/). 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 browserWhat I know so far
What is unclear to me
Changes since last time
My questions
22 on the sheetNewly diagnosed
- 1.What is my exact diagnosis, stage, and grade, and which tests established them?
- 2.Which biomarkers have been tested on my tumour (for example Karyotype and FISH for recurrent fusions, RNA fusion panel, FLT3-ITD and allelic ratio, CD33 expression, Flow cytometry MRD after course 1 and course 2), and what were the results?
- 3.Which subtype is my cancer, and does that change the recommended treatment?
- 4.Is germline (inherited) genetic testing recommended for me or my family?
Induction (two courses)
- 5.For my situation (induction (two courses)), which of the standard options do you recommend and why?
- 6.Am I a candidate for Cytarabine, Daunorubicin, Mitoxantrone or related drugs, and what side effects should I expect?
- 7.How do the results of COG AAML0531 apply to someone like me?
Consolidation (two or three courses)
- 8.For my situation (consolidation (two or three courses)), which of the standard options do you recommend and why?
- 9.Am I a candidate for Cytarabine, Etoposide, Mitoxantrone or related drugs, and what side effects should I expect?
FLT3-ITD
- 10.For my situation (flt3-itd), which of the standard options do you recommend and why?
- 11.Am I a candidate for Sorafenib, Gilteritinib, and what side effects should I expect?
High-risk genetics or persistent residual disease
- 12.For my situation (high-risk genetics or persistent residual disease), which of the standard options do you recommend and why?
Relapsed or refractory
- 13.For my situation (relapsed or refractory), which of the standard options do you recommend and why?
- 14.Am I a candidate for Fludarabine, Cytarabine, Revumenib or related drugs, and what side effects should I expect?
- 15.How do the results of AUGMENT-101 apply to someone like me?
Supportive care and late effects
- 16.For my situation (supportive care and late effects), which of the standard options do you recommend and why?
- 17.Am I a candidate for Dexrazoxane, and what side effects should I expect?
Any stage
- 18.Are there clinical trials I could join, for example of Revumenib, Gilteritinib, Venetoclax, Ziftomenib?
- 19.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 20.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 21.I read that “A third of children relapse and only half of those are cured”. How does that affect my plan?
- 22.I read that “Infant AML with NUP98 or CBFA2T3::GLIS2 fusions has no effective therapy”. How does that affect my plan?
The words I may hear
- Secondary malignancy (therapy-related cancer): A new, different cancer caused by the treatment of the first one: leukaemia after alkylating chemotherapy or PARP inhibitors, solid tumours in irradiated tissue decades later, and rarely T-cell lymphoma after CAR-T.
- Late effects and survivorship toxicity: Health problems appearing months or decades after treatment ends: heart damage, infertility, second cancers, lymphoedema, dry mouth, memory problems, weak bones.
- 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
Biomarker results to ask for: Karyotype and FISH for recurrent fusions, RNA fusion panel (KMT2A, NUP98, CBFA2T3::GLIS2), FLT3-ITD and allelic ratio, CD33 expression, Flow cytometry MRD after course 1 and course 2, GATA1 mutation in Down syndrome, Germline predisposition (GATA2, RUNX1, CEBPA).
Scans and tests linked to this cancer: Multiparameter flow cytometry MRD.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- High-risk genetics or persistent residual disease: Allogeneic transplant in first remission. (Allogeneic stem cell transplantation, Multiparameter flow cytometry MRD)
- Induction (two courses): Cytarabine with daunorubicin or mitoxantrone and etoposide; gemtuzumab ozogamicin added to the first course for CD33-positive disease (AAML0531); MRD after course 1. (Cytarabine, Daunorubicin, Mitoxantrone, Etoposide, Gemtuzumab ozogamicin, COG AAML0531, Multiparameter flow cytometry MRD)
- Consolidation (two or three courses): High-dose cytarabine-based courses; no maintenance. (Cytarabine, Etoposide, Mitoxantrone, Gemtuzumab ozogamicin)
- FLT3-ITD: Sorafenib added to chemotherapy for high allelic ratio (AAML1031); gilteritinib in paediatric trials. (Sorafenib, Gilteritinib, FLT3)
- Relapsed or refractory: Fludarabine and cytarabine reinduction; revumenib for KMT2A-rearranged disease; gilteritinib for FLT3; venetoclax combinations in trials; transplant. (Fludarabine, Cytarabine, Revumenib, AUGMENT-101, Gilteritinib, Venetoclax, Allogeneic stem cell transplantation)
- Supportive care and late effects: Dexrazoxane cardioprotection with anthracyclines, transfusion and antimicrobial support, cardio-oncology follow-up. (Dexrazoxane, Cardio-oncology, Transfusion support and anaemia management)
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 browserWhat I was told
Agreed next steps, dates and who to call