Appointment sheet
Relapsed and refractory acute lymphoblastic leukaemia in children
Prepared with OnCo (onco.cc/prep/all-paediatric-relapsed/). 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
21 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 Time from diagnosis and from end of treatment, Site of relapse, MRD after reinduction by flow cytometry and next-generation sequencing, CD19 and CD22 expression on blasts, KMT2A rearrangement), 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?
First relapse: reinduction
- 5.For my situation (first relapse: reinduction), which of the standard options do you recommend and why?
- 6.Am I a candidate for Mitoxantrone, Vincristine, Dexamethasone or related drugs, and what side effects should I expect?
First relapse, high or intermediate risk: consolidation
- 7.For my situation (first relapse, high or intermediate risk: consolidation), which of the standard options do you recommend and why?
- 8.Am I a candidate for Blinatumomab, and what side effects should I expect?
Second or later relapse, or refractory disease
- 9.For my situation (second or later relapse, or refractory disease), which of the standard options do you recommend and why?
- 10.Am I a candidate for Tisagenlecleucel, Inotuzumab ozogamicin, and what side effects should I expect?
- 11.How do the results of ELIANA apply to someone like me?
Relapsed T-cell ALL
- 12.For my situation (relapsed t-cell all), which of the standard options do you recommend and why?
- 13.Am I a candidate for Nelarabine, Cyclophosphamide, Etoposide or related drugs, and what side effects should I expect?
Relapsed KMT2A-rearranged ALL
- 14.For my situation (relapsed kmt2a-rearranged all), which of the standard options do you recommend and why?
- 15.Am I a candidate for Revumenib, and what side effects should I expect?
- 16.How do the results of AUGMENT-101 apply to someone like me?
Any stage
- 17.Are there clinical trials I could join, for example of Tisagenlecleucel, Blinatumomab, Inotuzumab ozogamicin, Obecabtagene autoleucel?
- 18.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 19.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 20.I read that “CD19-negative relapse and lineage switch after CD19-directed therapy”. How does that affect my plan?
- 21.I read that “Which children need transplant after a CAR T-cell remission”. How does that affect my plan?
The words I may hear
- ICANS (neurotoxicity): ICANS is confusion, speech difficulty, and rarely seizures after CAR-T or bispecific therapy.
- 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.
- Cytokine release syndrome (CRS): A flood of inflammatory signals when immune cells are activated en masse, causing fever, low blood pressure, and sometimes organ failure.
- 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: Time from diagnosis and from end of treatment, Site of relapse (marrow, CNS, testis, combined), MRD after reinduction by flow cytometry and next-generation sequencing, CD19 and CD22 expression on blasts, KMT2A rearrangement (lineage switch risk), Prior exposure to blinatumomab or CAR T-cells.
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
- First relapse: reinduction: Mitoxantrone-based reinduction (UKALLR3) with vincristine, dexamethasone, asparaginase and intrathecal therapy; MRD after the block sets the path. (Mitoxantrone, Vincristine, Dexamethasone, Asparaginase (pegaspargase, calaspargase pegol, Erwinia asparaginase), Methotrexate, Multiparameter flow cytometry MRD)
- First relapse, high or intermediate risk: consolidation: Blinatumomab in place of chemotherapy blocks (AALL1331, IntReALL), then allogeneic transplant in MRD-negative remission. (Blinatumomab, Allogeneic stem cell transplantation, CD19, T-cell engagers (bispecific))
- Second or later relapse, or refractory disease: Tisagenlecleucel (ELIANA) or inotuzumab ozogamicin, with transplant after inotuzumab and after CAR T-cells in selected children. (Tisagenlecleucel, ELIANA, Inotuzumab ozogamicin, CAR-T cell therapy, Cytokine release syndrome (CRS), ICANS (neurotoxicity), Allogeneic stem cell transplantation)
- Relapsed T-cell ALL: Nelarabine with cyclophosphamide and etoposide, then allogeneic transplant; venetoclax combinations and CD7 CAR T-cells in trials. (Nelarabine, Cyclophosphamide, Etoposide, Allogeneic stem cell transplantation, Venetoclax)
- Relapsed KMT2A-rearranged ALL: Revumenib (approved from the age of one) alone or in trials with chemotherapy, as a bridge to transplant. (Revumenib, AUGMENT-101, Allogeneic stem cell transplantation)
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