Living with itAcute lymphoblastic leukaemia

Back to the Acute lymphoblastic leukaemia hub →38 questions · 6 red cards

The decisions you may face, the aids that walk through them, the warnings on record, the first sixty days and the questions to ask.

Living with it

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Decisions you may face

9 with more than one option · full decision page →

One section per setting: the options named, what each is for, the trials behind them, the recorded trade-offs and the questions to ask.

Frontline Relapsed2 Children, standard risk B-ALL2 Children, high risk or MRD-positive4 Infants (<1 year), KMT2A-rearranged Adolescents and young adults (15-39), Ph-negative2 Adults 40-70, Ph-negative3 Ph-positive ALL, newly diagnosed3 MRD-positive after induction or consolidation2 Relapsed or refractory B-ALL4 T-cell ALL2

Red cards

From the labels and guidelines behind the standard of care. Your team's thresholds win.

Emergency services now
Cytokine release syndrome
Fever of 38 C or higher is grade 1 CRS; fever with low blood pressure, fast heartbeat, breathlessness or low oxygen is grade 2 or higher. The labels carry a boxed warning and say to report fever immediately.
Obecabtagene autoleucel Tisagenlecleucel source
Emergency services now
Fainting or palpitations
Fainting, near-fainting, or an irregular or racing heartbeat; several kinase inhibitors prolong the QT interval and the labels require ECG and electrolyte monitoring.
Dasatinib Ponatinib source
Emergency services now
Cytokine release syndrome
Fever of 38 C or higher, chills, low blood pressure, fast heartbeat or breathlessness, especially after a step-up dose. Boxed warning on teclistamab, epcoritamab, glofitamab, tarlatamab and blinatumomab.
Blinatumomab source
Emergency services now
Differentiation syndrome
Fever, cough or breathlessness, rapid weight gain or swelling, bone pain, low blood pressure or reduced urine; the labels say to start steroids and monitor at the first suspicion, and the syndrome has been fatal.
Revumenib source
Emergency services now
Skin reaction
Blisters, peeling, or sores in the mouth or eyes with a rash. Enfortumab vedotin carries a boxed warning for Stevens-Johnson syndrome and toxic epidermal necrolysis, mostly in the first cycle.
Inotuzumab ozogamicin source
Emergency services now
Tumour lysis syndrome
Nausea, vomiting, muscle cramps, palpitations, seizures, confusion or passing much less urine in the first days of a new dose; the label requires hydration, anti-hyperuricaemic drugs and blood tests around each ramp-up step.
Venetoclax source

See all on the product pages:Blinatumomab Dasatinib Inotuzumab ozogamicin Obecabtagene autoleucel Ponatinib Revumenib Tisagenlecleucel Venetoclax·Printable cards in the navigator

Questions to ask

Bring to your appointment

Questions to ask your oncologist about Acute lymphoblastic leukaemia

Generated from this cancer's standard of care, biomarkers, and pipeline · 38 questions

Newly diagnosed

What is my exact diagnosis, stage, and grade, and which tests established them?
Why: Everything else follows from an accurate stage and subtype.
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?
Why: These results decide eligibility for targeted therapy, immunotherapy, and trials.
Which subtype is my cancer, and does that change the recommended treatment?
Why: Recognised subtypes for this cancer include B-cell precursor ALL: ETV6::RUNX1, high hyperdiploidy; Ph-positive BCR::ABL1; Ph-like/CRLF2; KMT2A-rearranged; hypodiploid, iAMP21, TCF3::HLF, DUX4/ZNF384 fusions, T-cell ALL: early T-precursorsubtype adverse; NOTCH1 mutated majority, Mixed-phenotype acute leukaemia.
Is germline (inherited) genetic testing recommended for me or my family?
Why: Inherited variants can change treatment and matter for relatives.

Frontline

For my situation (frontline), which of the standard options do you recommend and why?
Why: Guideline options include: Risk-adapted chemotherapy + blinatumomab consolidation; TKI if Ph+.
Am I a candidate for Blinatumomab, and what side effects should I expect?
Why: Knowing the expected toxicities helps you plan work, family, and supportive care.

Relapsed

For my situation (relapsed), which of the standard options do you recommend and why?
Why: Guideline options include: CAR-T (tisagenlecleucel, obe-cel), inotuzumab, transplant.
Am I a candidate for Revumenib, and what side effects should I expect?
Why: Knowing the expected toxicities helps you plan work, family, and supportive care.

Children, standard risk B-ALL

For my situation (children, standard risk b-all), which of the standard options do you recommend and why?
Why: Guideline options include: 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.
Am I a candidate for Blinatumomab, and what side effects should I expect?
Why: Knowing the expected toxicities helps you plan work, family, and supportive care.
How do the results of COG AALL1731 apply to someone like me?
Why: Trial populations differ from individual patients; ask how closely you match.

Children, high risk or MRD-positive

For my situation (children, high risk or mrd-positive), which of the standard options do you recommend and why?
Why: Guideline options include: 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.
Am I a candidate for Blinatumomab, Inotuzumab ozogamicin, Tisagenlecleucel, and what side effects should I expect?
Why: Knowing the expected toxicities helps you plan work, family, and supportive care.
How do the results of AALL1331 apply to someone like me?
Why: Trial populations differ from individual patients; ask how closely you match.

Infants (<1 year), KMT2A-rearranged

For my situation (infants (<1 year), kmt2a-rearranged), which of the standard options do you recommend and why?
Why: Guideline options include: Interfant-21 backbone with blinatumomab; transplant for high-risk; menin inhibitors in trials.
Am I a candidate for Blinatumomab, and what side effects should I expect?
Why: Knowing the expected toxicities helps you plan work, family, and supportive care.
How do the results of Interfant-06 apply to someone like me?
Why: Trial populations differ from individual patients; ask how closely you match.

Adolescents and young adults (15-39), Ph-negative

For my situation (adolescents and young adults (15-39), ph-negative), which of the standard options do you recommend and why?
Why: Guideline options include: Paediatric-inspired regimens (CALGB 10403, GRAALL, UKALL) with asparaginase; blinatumomab consolidation (E1910); MRD-guided transplant.
Am I a candidate for Blinatumomab, and what side effects should I expect?
Why: Knowing the expected toxicities helps you plan work, family, and supportive care.
How do the results of ECOG-ACRIN E1910 and GRAALL-2005 apply to someone like me?
Why: Trial populations differ from individual patients; ask how closely you match.

Adults 40-70, Ph-negative

For my situation (adults 40-70, ph-negative), which of the standard options do you recommend and why?
Why: Guideline options include: 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.
Am I a candidate for Blinatumomab, Inotuzumab ozogamicin, and what side effects should I expect?
Why: Knowing the expected toxicities helps you plan work, family, and supportive care.
How do the results of ECOG-ACRIN E1910 apply to someone like me?
Why: Trial populations differ from individual patients; ask how closely you match.

Ph-positive ALL, newly diagnosed

For my situation (ph-positive all, newly diagnosed), which of the standard options do you recommend and why?
Why: Guideline options include: 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.
Am I a candidate for Ponatinib, Dasatinib, Blinatumomab, and what side effects should I expect?
Why: Knowing the expected toxicities helps you plan work, family, and supportive care.
How do the results of PhALLCON and D-ALBA (GIMEMA LAL2116) apply to someone like me?
Why: Trial populations differ from individual patients; ask how closely you match.

MRD-positive after induction or consolidation

For my situation (mrd-positive after induction or consolidation), which of the standard options do you recommend and why?
Why: Guideline options include: Blinatumomab (BLAST; full approval 2018) to convert to MRD negativity, then transplant or continued blinatumomab-based therapy.
Am I a candidate for Blinatumomab, and what side effects should I expect?
Why: Knowing the expected toxicities helps you plan work, family, and supportive care.

Relapsed or refractory B-ALL

For my situation (relapsed or refractory b-all), which of the standard options do you recommend and why?
Why: Guideline options include: 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.
Am I a candidate for Blinatumomab, Inotuzumab ozogamicin, Tisagenlecleucel or related drugs, and what side effects should I expect?
Why: Knowing the expected toxicities helps you plan work, family, and supportive care.
How do the results of TOWER and INO-VATE ALL apply to someone like me?
Why: Trial populations differ from individual patients; ask how closely you match.

T-cell ALL

For my situation (t-cell all), which of the standard options do you recommend and why?
Why: Guideline options include: Intensive paediatric-type chemotherapy with nelarabine for high-risk (AALL0434); relapse: nelarabine, venetoclax combinations, CD7 CAR-T and daratumumab in trials; transplant in CR2.
Am I a candidate for Venetoclax, and what side effects should I expect?
Why: Knowing the expected toxicities helps you plan work, family, and supportive care.

Any stage

Are there clinical trials I could join, for example of Revumenib, MK-1045, UCART22, CRC01?
Why: Trials are how the next standard of care is set; asking early keeps options open.
Would a second opinion at a high-volume centre change anything, and can you help arrange it?
Why: Rare or high-stakes decisions benefit from a centre that treats many similar patients.
What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
Why: Supportive care improves quality of life and helps patients complete treatment.
I read that “Adult ALL outcomes”. How does that affect my plan?
Why: Open problems are where trials and second opinions matter most.
I read that “CD19-negative relapse”. How does that affect my plan?
Why: Open problems are where trials and second opinions matter most.

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Cancers·Acute lymphoblastic leukaemia