Appointment sheet
Standard-risk B-cell acute lymphoblastic leukaemia in children
Prepared with OnCo (onco.cc/prep/all-paediatric-standard-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
18 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 presenting white cell count, ETV6::RUNX1 fusion, High hyperdiploidy with trisomies 4 and 10, Flow cytometry MRD at day 8 and day 29, CNS status at diagnosis), 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, Asparaginase (pegaspargase, calaspargase pegol, Erwinia asparaginase) or related drugs, and what side effects should I expect?
Consolidation and interim maintenance
- 7.For my situation (consolidation and interim maintenance), 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?
- 9.How do the results of COG AALL1731 apply to someone like me?
Delayed intensification and maintenance
- 10.For my situation (delayed intensification and maintenance), which of the standard options do you recommend and why?
- 11.Am I a candidate for Vincristine, Dexamethasone, Doxorubicin or related drugs, and what side effects should I expect?
Relapse
- 12.For my situation (relapse), which of the standard options do you recommend and why?
- 13.Am I a candidate for Blinatumomab, Tisagenlecleucel, Inotuzumab ozogamicin, and what side effects should I expect?
Any stage
- 14.Are there clinical trials I could join, for example of Blinatumomab, COG AALL1731, NGS-based MRD (clonoSEQ and molecular MRD), Blinatumomab added to frontline chemotherapy?
- 15.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 16.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 17.I read that “Whether blinatumomab allows chemotherapy to be shortened rather than only added to”. How does that affect my plan?
- 18.I read that “Asparaginase hypersensitivity and silent inactivation, and osteonecrosis in older children”. How does that affect my plan?
The words I may hear
- 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 presenting white cell count (NCI criteria), ETV6::RUNX1 fusion, High hyperdiploidy with trisomies 4 and 10, Flow cytometry MRD at day 8 and day 29, CNS status at diagnosis, TPMT and NUDT15 genotype for mercaptopurine dosing.
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
- Induction (four weeks): Vincristine, dexamethasone and pegylated asparaginase with intrathecal methotrexate; flow cytometry MRD at day 29 decides the post-induction arm. (Vincristine, Dexamethasone, Asparaginase (pegaspargase, calaspargase pegol, Erwinia asparaginase), Methotrexate, Multiparameter flow cytometry MRD)
- Relapse: Reinduction chemotherapy with blinatumomab for high- and intermediate-risk relapse; tisagenlecleucel or inotuzumab ozogamicin for later relapse (see the relapsed ALL page). (Blinatumomab, Tisagenlecleucel, Inotuzumab ozogamicin, Relapsed and refractory acute lymphoblastic leukaemia in children)
- Consolidation and interim maintenance: Cyclophosphamide, cytarabine and mercaptopurine, then escalating methotrexate; two cycles of blinatumomab added for standard-risk average and high disease (AALL1731). (Cyclophosphamide, Cytarabine, Mercaptopurine, Methotrexate, Blinatumomab, COG AALL1731, Blinatumomab added to frontline chemotherapy)
- Delayed intensification and maintenance: One delayed intensification block with vincristine, dexamethasone, doxorubicin, asparaginase, cyclophosphamide, cytarabine and thioguanine; then daily mercaptopurine, weekly methotrexate and vincristine-steroid pulses to two years or more. (Vincristine, Dexamethasone, Doxorubicin, Cyclophosphamide, 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