The first 60 days: Philadelphia chromosome-positive acute lymphoblastic leukaemia in children (Ph-positive ALL)

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

• Newly diagnosedNCI PDQ: Childhood Acute Lymphoblastic Leukemia Treatment (health professional version)

  Imatinib or dasatinib started in induction and continued throughout intensive BFM or EsPhALL-type chemotherapy; intrathecal therapy without cranial irradiation.

  DasatinibImatinibVincristineDexamethasoneAsparaginase (pegaspargase, calaspargase pegol, Erwinia asparaginase)MethotrexateMultiparameter flow cytometry MRDPh-positive ALLBCR::ABL1 (Philadelphia chromosome)EsPhALL (EsPhALL2004 and EsPhALL2010)

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, Poor residual disease response.
• Medical oncologistNamed in the standard of care for: Newly diagnosed, Poor residual disease response, Relapsed or refractory.
• Clinical oncologist (radiotherapy)Named in the standard of care for: Newly diagnosed.
• Transplant and cell therapy teamNamed in the standard of care for: Poor residual disease response, Relapsed or refractory.
• Palliative and supportive care 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.

Each row is a setting from the standard of care, in the order it usually arises. Not all will apply to you; your stage and biomarkers decide which do. The guideline grade, where recorded, says how strong the evidence is.

1. 1.Poor residual disease responseNCI PDQ: Childhood Acute Lymphoblastic Leukemia Treatment (health professional version)

   Blinatumomab to clear residual disease, then allogeneic transplant in first remission with a kinase inhibitor continued afterwards.

   Allogeneic stem cell transplantationDasatinibImatinibBlinatumomabNGS-based MRD (clonoSEQ and molecular MRD)
2. 2.Relapsed or refractoryNCI PDQ: Childhood Acute Lymphoblastic Leukemia Treatment (health professional version)

   Switch kinase inhibitor by mutation (ponatinib for T315I, used off label in children), blinatumomab or CD19 CAR T-cells, inotuzumab ozogamicin, then transplant.

   PonatinibBlinatumomabTisagenlecleucelInotuzumab ozogamicinAllogeneic stem cell transplantationBCR::ABL1 TKI + blinatumomab (chemotherapy-free Ph+ ALL)

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.

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.

• Philadelphia chromosome-positive acute lymphoblastic leukaemia in children (Ph-positive ALL): the full pagePhiladelphia chromosome-positive leukaemia carries the same faulty BCR::ABL1 gene as chronic myeloid leukaemia. Until 2000 most children with it needed a bone marrow transplant; adding the targeted pill imatinib to chemotherapy, and then dasatinib, means most are now cured without one.
• 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.