Appointment sheet
Acute lymphoblastic leukaemia
Prepared with OnCo (onco.cc/prep/all-leukemia/). 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
37 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 BCR-ABL, KMT2A, Ph-like signature, MRD, MRD by flowor clonoSEQ/PCRat end of induction and 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?
Frontline
- 5.For my situation (frontline), which of the standard options do you recommend and why?
- 6.Am I a candidate for Blinatumomab, and what side effects should I expect?
Relapsed
- 7.For my situation (relapsed), which of the standard options do you recommend and why?
- 8.Am I a candidate for Revumenib, and what side effects should I expect?
Children, standard risk B-ALL
- 9.For my situation (children, standard risk b-all), which of the standard options do you recommend and why?
- 10.Am I a candidate for Blinatumomab, and what side effects should I expect?
- 11.How do the results of COG AALL1731 apply to someone like me?
Children, high risk or MRD-positive
- 12.For my situation (children, high risk or mrd-positive), which of the standard options do you recommend and why?
- 13.Am I a candidate for Blinatumomab, Inotuzumab ozogamicin, Tisagenlecleucel, and what side effects should I expect?
Infants (<1 year), KMT2A-rearranged
- 14.For my situation (infants (<1 year), kmt2a-rearranged), which of the standard options do you recommend and why?
- 15.Am I a candidate for Blinatumomab, and what side effects should I expect?
- 16.How do the results of Interfant-06 apply to someone like me?
Adolescents and young adults (15-39), Ph-negative
- 17.For my situation (adolescents and young adults (15-39), ph-negative), which of the standard options do you recommend and why?
- 18.Am I a candidate for Blinatumomab, and what side effects should I expect?
- 19.How do the results of ECOG-ACRIN E1910 apply to someone like me?
Adults 40-70, Ph-negative
- 20.For my situation (adults 40-70, ph-negative), which of the standard options do you recommend and why?
- 21.Am I a candidate for Blinatumomab, Inotuzumab ozogamicin, and what side effects should I expect?
- 22.How do the results of ECOG-ACRIN E1910 apply to someone like me?
Ph-positive ALL, newly diagnosed
- 23.For my situation (ph-positive all, newly diagnosed), which of the standard options do you recommend and why?
- 24.Am I a candidate for Ponatinib, Dasatinib, Blinatumomab, and what side effects should I expect?
- 25.How do the results of PhALLCON and D-ALBA (GIMEMA LAL2116) apply to someone like me?
MRD-positive after induction or consolidation
- 26.For my situation (mrd-positive after induction or consolidation), which of the standard options do you recommend and why?
- 27.Am I a candidate for Blinatumomab, and what side effects should I expect?
Relapsed or refractory B-ALL
- 28.For my situation (relapsed or refractory b-all), which of the standard options do you recommend and why?
- 29.Am I a candidate for Blinatumomab, Inotuzumab ozogamicin, Tisagenlecleucel or related drugs, and what side effects should I expect?
- 30.How do the results of TOWER and INO-VATE ALL apply to someone like me?
T-cell ALL
- 31.For my situation (t-cell all), which of the standard options do you recommend and why?
- 32.Am I a candidate for Venetoclax, and what side effects should I expect?
Any stage
- 33.Are there clinical trials I could join, for example of Revumenib, MK-1045, UCART22, CRC01?
- 34.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 35.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 36.I read that “Adult ALL outcomes”. How does that affect my plan?
- 37.I read that “CD19-negative relapse”. How does that affect my plan?
The words I may hear
- Ph-positive ALL: Ph-positive ALL is acute lymphoblastic leukaemia carrying the Philadelphia chromosome.
- Philadelphia chromosome (Ph+, BCR::ABL1): A swapped piece between chromosomes 9 and 22 that fuses two genes into BCR::ABL1, a runaway kinase.
- Aneuploidy and chromosomal instability as the cause of cancer: The oldest theory of cancer, from Theodor Boveri in 1914: tumours arise from cells with the wrong number or arrangement of chromosomes.
- Prophylactic cranial irradiation (PCI): Giving the brain a preventive dose of radiation (25 Gy in 10 sessions) before any metastasis can be seen, mainly in small-cell lung cancer, which spreads to the brain in over half of patients.
- ICANS (neurotoxicity): ICANS is confusion, speech difficulty, and rarely seizures after CAR-T or bispecific therapy.
- Allogeneic stem cell transplant (allo-SCT): Replacing a patient's blood system with a donor's: chemotherapy wipes out the marrow, donor stem cells rebuild it, and the donor's immune cells hunt down leftover leukaemia.
- MRD-negative complete remission: MRD-negative complete remission means not just no leukaemia visible under the microscope, but none detectable with tests a thousand times more sensitive.
- B cell: The immune cells that make antibodies.
- Leukaemia (tissue type): Cancer of the blood-forming cells in the bone marrow, which flood the blood with immature or abnormal white cells and crowd out normal blood production.
- Undetectable MRD (uMRD / MRD-negative): The test for leftover cancer cells found none, down to the sensitivity of the assay (often one cell in 100,000 or a million).
Tests and results to bring
Ph-positive ALL, newly diagnosed: Ponatinib (PhALLCON) or dasatinib with reduced-intensity chemotherapy, or chemotherapy-free TKI + blinatumomab (D-ALBA); BCR::ABL1 PCR monitoring; transplant for MRD persistence or IKZF1-plus, increasingly omitted for MRD-negative patients.
Biomarker results to ask for: BCR-ABL (Ph+), KMT2A, Ph-like signature, MRD (flow/NGS), MRD by flow (10^-4) or clonoSEQ/PCR (10^-5 to 10^-6) at end of induction and consolidation, BCR::ABL1 (Ph+) and transcript type, KMT2A rearrangement (menin inhibitor eligibility; infants), Ph-like signature (CRLF2, ABL-class fusions, JAK mutations), IKZF1 deletion / IKZF1-plus (adverse, especially in Ph+), Hypodiploidy (<44 chromosomes) and TP53 germline testing, CD19 and CD22 expression and density (immunotherapy targets and escape), CNS involvement at diagnosis, Age and white count (NCI risk in children).
Scans and tests linked to this cancer: Cytogenetics and FISH, Flow cytometers, Multiparameter flow cytometry MRD, NGS-based MRD (clonoSEQ and molecular MRD), TPMT and NUDT15 genotyping before thiopurines, MRD / molecular residual disease testing.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Children, standard risk B-ALL: Risk-adapted multi-agent chemotherapy (induction, consolidation, interim maintenance, delayed intensification, 2-3 years maintenance) with two cycles of blinatumomab in consolidation (AALL1731, approved June 2024); intrathecal CNS prophylaxis; cranial radiation abandoned for most. (Blinatumomab, COG AALL1731, Multiparameter flow cytometry MRD)
- Infants (<1 year), KMT2A-rearranged: Interfant-21 backbone with blinatumomab; transplant for high-risk; menin inhibitors in trials. (Blinatumomab, Interfant-06, Menin inhibitors for infant KMT2A-rearranged ALL, KMT2A (MLL) rearrangement)
- Children, high risk or MRD-positive: Intensified chemotherapy; blinatumomab for MRD persistence (AALL1331 in relapse); inotuzumab and CAR-T (tisagenlecleucel) for relapse; allogeneic transplant for very high risk or MRD persistence. (Blinatumomab, Inotuzumab ozogamicin, Tisagenlecleucel, Allogeneic stem cell transplantation)
- Frontline: Risk-adapted chemotherapy + blinatumomab consolidation; TKI if Ph+. (Blinatumomab)
- Adolescents and young adults (15-39), Ph-negative: Paediatric-inspired regimens (CALGB 10403, GRAALL, UKALL) with asparaginase; blinatumomab consolidation (E1910); MRD-guided transplant. (Blinatumomab, ECOG-ACRIN E1910, NGS-based MRD (clonoSEQ and molecular MRD))
- Adults 40-70, Ph-negative: Hyper-CVAD or age-adapted multi-agent chemotherapy with blinatumomab interleaved in consolidation (E1910); inotuzumab-containing lower-intensity regimens (Mini-hyper-CVD + InO ± blinatumomab) for older adults; MRD-driven transplant. (Blinatumomab, Inotuzumab ozogamicin, ECOG-ACRIN E1910, Allogeneic stem cell transplantation)
- MRD-positive after induction or consolidation: Blinatumomab (BLAST; full approval 2018) to convert to MRD negativity, then transplant or continued blinatumomab-based therapy. (Blinatumomab, MRD-negative complete remission, Allogeneic stem cell transplantation)
- T-cell ALL: Intensive paediatric-type chemotherapy with nelarabine for high-risk (AALL0434); relapse: nelarabine, venetoclax combinations, CD7 CAR-T and daratumumab in trials; transplant in CR2. (Venetoclax, Allogeneic stem cell transplantation)
- Relapsed: CAR-T (tisagenlecleucel, obe-cel), inotuzumab, transplant. (CAR-T cell therapy, Revumenib)
- Relapsed or refractory B-ALL: Blinatumomab (TOWER) or inotuzumab (INO-VATE) as salvage and bridge; CD19 CAR-T (tisagenlecleucel ≤25 years; obe-cel or brexucabtagene in adults) for second salvage or as definitive therapy; transplant for those not previously transplanted; CD22 or dual CAR-T for CD19-negative relapse in trials. (Blinatumomab, Inotuzumab ozogamicin, Tisagenlecleucel, Obecabtagene autoleucel, TOWER, INO-VATE ALL, FELIX, ELIANA)
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