The first 60 days: Myeloid leukaemia of Down syndrome

Staging tests establish exactly what and where the cancer is. Everything else follows from the answers.

• 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.

  CytarabineDaunorubicinMRD / molecular residual disease testingAcute myeloid leukaemia in childrenResponse-Based Chemotherapy in Treating Newly Diagnosed Acute Myeloid Leukemia or Myelodysplastic Syndrome in Younger Patients With Down Syndrome

These specialties appear in the standard of care for this cancer. In most centres they meet weekly as a tumour board to agree each plan; you can ask when yours was discussed and what was decided.

• PathologistNamed in the standard of care for: Newly diagnosed.
• Medical oncologistNamed in the standard of care for: Newly diagnosed.
• Transplant and cell therapy teamNamed in the standard of care for: Newly diagnosed.

A second opinion from a centre that treats many similar cases is normal, not rude; the standard of care tells you what to compare it against.

Generated from this cancer's standard of care, biomarkers and open problems. Take the group that matches where you are. To tick, add your own and print, open the one-page appointment sheet.

Trials open now for this cancer in OnCo, largest phase first. Joining a trial is a decision like any other: ask what the comparison arm is, whether a placebo is used, and what happens if you leave. The cancer page searches ClinicalTrials.gov live for more.

• Response-Based Chemotherapy in Treating Newly Diagnosed Acute Myeloid Leukemia or Myelodysplastic Syndrome in Younger Patients With Down SyndromePhase 3 · active · NCT02521493Risk-Stratified Therapy for Acute Myeloid Leukemia in Down Syndrome

Much of what helps in the first weeks is free if you know to ask: testing, helplines, rides and lodging, second opinions, trial travel.

• Free in oncologyFree testing, helplines, rides and lodging, second opinions and trial travel help, with who is eligible.
• Financial helpManufacturer programmes, national schemes and charities by country and product.
• Second opinionExpert centres for this cancer in your country and how referral works.

• Myeloid leukaemia of Down syndrome: the full pageMyeloid leukaemia of Down syndrome is a form of acute myeloid leukaemia in young children with Down syndrome, driven by a GATA1 mutation on top of the extra chromosome 21 and often preceded by a transient leukaemia-like illness in the newborn. Its cells are unusually sensitive to chemotherapy, so children are cured about nine times in ten with gentler treatment than other childhood leukaemia.
• One-page appointment sheetYour questions, the words you may hear, what to bring, and space for the answers. Print it.
• Treatment sequencingWhich treatment tends to follow which, line by line.
• NavigatorStandard of care for your stage, what you have tried, and trials near you.