Appointment sheet
Myeloid leukaemia of Down syndrome
Prepared with OnCo (onco.cc/prep/myeloid-leukaemia-of-down-syndrome/). 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
9 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 Trisomy 21 with somatic GATA1 mutation, Megakaryoblastic morphology and markers, Measurable residual disease by flow cytometry on day 28 of induction, History of transient abnormal myelopoiesis), 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?
- 5.For my situation (newly diagnosed), which of the standard options do you recommend and why?
- 6.Am I a candidate for Cytarabine, Daunorubicin, and what side effects should I expect?
- 7.How do the results of Response-Based Chemotherapy in Treating Newly Diagnosed Acute Myeloid Leukemia or Myelodysplastic Syndrome in Younger Patients With Down Syndrome apply to someone like me?
Any stage
- 8.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 9.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
Tests and results to bring
Newly diagnosed: Reduced-intensity cytarabine and daunorubicin-based chemotherapy on the AAML0431 model, with measurable residual disease guiding further reduction; no transplant in first remission.
Biomarker results to ask for: Trisomy 21 with somatic GATA1 mutation, Megakaryoblastic morphology and markers (CD41, CD61), Measurable residual disease by flow cytometry on day 28 of induction, History of transient abnormal myelopoiesis.
Scans and tests linked to this cancer: MRD / molecular residual disease testing.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
Answers and next steps
Saved in this browserWhat I was told
Agreed next steps, dates and who to call