Appointment sheet
High-risk acute lymphoblastic leukaemia in children (high-risk B-ALL and T-ALL)
Prepared with OnCo (onco.cc/prep/all-paediatric-high-risk/). 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
19 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 Age and white cell count, Immunophenotype, Karyotype and FISH, BCR::ABL1 and BCR::ABL1-like screening, Flow cytometry MRD at day 29 and end of consolidation), 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 (four weeks)
- 5.For my situation (induction (four weeks)), which of the standard options do you recommend and why?
- 6.Am I a candidate for Vincristine, Dexamethasone, Prednisone or related drugs, and what side effects should I expect?
Consolidation and interim maintenance, high-risk B-ALL
- 7.For my situation (consolidation and interim maintenance, high-risk b-all), which of the standard options do you recommend and why?
- 8.Am I a candidate for Cyclophosphamide, Cytarabine, Mercaptopurine or related drugs, and what side effects should I expect?
T-cell ALL
- 9.For my situation (t-cell all), which of the standard options do you recommend and why?
- 10.Am I a candidate for Nelarabine, Methotrexate, Asparaginase (pegaspargase, calaspargase pegol, Erwinia asparaginase), and what side effects should I expect?
Delayed intensification and maintenance
- 11.For my situation (delayed intensification and maintenance), which of the standard options do you recommend and why?
- 12.Am I a candidate for Vincristine, Dexamethasone, Doxorubicin or related drugs, and what side effects should I expect?
Very high risk: induction failure, hypodiploidy, persistent residual disease
- 13.For my situation (very high risk: induction failure, hypodiploidy, persistent residual disease), which of the standard options do you recommend and why?
- 14.Am I a candidate for Blinatumomab, Tisagenlecleucel, and what side effects should I expect?
Any stage
- 15.Are there clinical trials I could join, for example of Inotuzumab ozogamicin, Blinatumomab, Tisagenlecleucel, Venetoclax?
- 16.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 17.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 18.I read that “No antibody or cell therapy target in routine use for T-ALL”. How does that affect my plan?
- 19.I read that “Which high-risk children still need transplant once immunotherapy clears residual disease”. How does that affect my plan?
The words I may hear
- Ph-like (BCR::ABL1-like) acute lymphoblastic leukaemia: Ph-like leukaemia has the gene-expression fingerprint of Philadelphia-positive leukaemia without the Philadelphia chromosome; behind it are dozens of kinase fusions and JAK pathway lesions, and finding which one is present tells doctors whether an imatinib-type drug or a JAK inhibitor might be added to chemotherapy.
- Event-free / disease-free survival (EFS, DFS, iDFS, RFS): In early-stage cancer: how long patients stay free of recurrence, progression, or death.
- B-ALL risk groups (NCI criteria, ETV6::RUNX1, hyperdiploidy, hypodiploidy, iAMP21, IKZF1, CNS status): Childhood leukaemia treatment is chosen from a risk table built over fifty years: age and white count at diagnosis (the NCI criteria), the chromosome pattern in the blasts (favourable ETV6::RUNX1 and high hyperdiploidy, unfavourable hypodiploidy, iAMP21, KMT2A, Ph-positive and Ph-like), whether leukaemia cells are in the spinal fluid, and above all how fast the leukaemia clears in the first month.
- 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: Age and white cell count (NCI criteria), Immunophenotype (CD19, CD22, CD7, cytoplasmic CD3), Karyotype and FISH (hypodiploidy, KMT2A, iAMP21), BCR::ABL1 and BCR::ABL1-like screening, Flow cytometry MRD at day 29 and end of consolidation, CNS status (CNS1 to CNS3).
Scans and tests linked to this cancer: Multiparameter flow cytometry MRD, NGS-based MRD (clonoSEQ and molecular MRD).
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Very high risk: induction failure, hypodiploidy, persistent residual disease: Blinatumomab to clear residual disease, then allogeneic transplant in first remission; CD19 CAR T-cells as consolidation in trials. (Allogeneic stem cell transplantation, Blinatumomab, Tisagenlecleucel, Multiparameter flow cytometry MRD, NGS-based MRD (clonoSEQ and molecular MRD))
- Induction (four weeks): Four-drug induction: vincristine, dexamethasone or prednisone, daunorubicin and pegylated asparaginase with intrathecal methotrexate; MRD at day 29. (Vincristine, Dexamethasone, Prednisone, Daunorubicin, Asparaginase (pegaspargase, calaspargase pegol, Erwinia asparaginase), Methotrexate, Multiparameter flow cytometry MRD)
- T-cell ALL: Augmented BFM with Capizzi escalating methotrexate and nelarabine courses for intermediate- and high-risk disease (AALL0434); cranial irradiation only for CNS3 or the highest risk (AALL1231). (Nelarabine, Methotrexate, Asparaginase (pegaspargase, calaspargase pegol, Erwinia asparaginase), Prophylactic cranial irradiation vs MRI surveillance)
- Consolidation and interim maintenance, high-risk B-ALL: Augmented BFM consolidation with cyclophosphamide, cytarabine, mercaptopurine and asparaginase; high-dose methotrexate with leucovorin rescue (AALL0232); blinatumomab or inotuzumab ozogamicin added in current trials. (Cyclophosphamide, Cytarabine, Mercaptopurine, Asparaginase (pegaspargase, calaspargase pegol, Erwinia asparaginase), Methotrexate, Leucovorin (folinic acid), Blinatumomab, Inotuzumab ozogamicin)
- Delayed intensification and maintenance: Two delayed intensification blocks with vincristine, dexamethasone, doxorubicin, cyclophosphamide, cytarabine and thioguanine; maintenance with mercaptopurine, methotrexate and vincristine-steroid pulses. (Vincristine, Dexamethasone, Doxorubicin, Cyclophosphamide, Cytarabine, Thioguanine, Mercaptopurine, Methotrexate)
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