The first 60 days: Infant acute lymphoblastic leukaemia (KMT2A-rearranged, under one year)
Leukaemia diagnosed in the first year of life is a different disease from leukaemia in older children: most cases carry a broken KMT2A gene and respond poorly to chemotherapy, and fewer than half of infants were cured for twenty years. One course of the immune drug blinatumomab after induction raised two-year disease-free survival from about half to over 80 percent in a pilot study. Below, week by week, is what OnCo's record of Infant acute lymphoblastic leukaemia (KMT2A-rearranged, under one year) says about the first two months: the order is typical, the timing is yours to ask about. Sections appear only where the record has something to say. Orientation, not medical advice.
What happens now
Staging tests establish exactly what and where the cancer is. Everything else follows from the answers.
Ask which of these were tested and what the results were; see the report reader for what each value means.
These specialties appear in the standard of care for this cancer. In most centres they meet weekly as a tumour board to agree each plan; you can ask when yours was discussed and what was decided.
- Medical oncologistNamed in the standard of care for: Induction, Post-induction, KMT2A-rearranged, High risk, Relapsed or refractory.
- Transplant and cell therapy teamNamed in the standard of care for: High risk, Relapsed or refractory.
- Palliative and supportive care teamNamed in the standard of care for: Induction.
A second opinion from a centre that treats many similar cases is normal, not rude; the standard of care tells you what to compare it against.
Each row is a setting from the standard of care, in the order it usually arises. Not all will apply to you; your stage and biomarkers decide which do. The guideline grade, where recorded, says how strong the evidence is.
Allogeneic transplant in first remission after blinatumomab and consolidation.
Interfant backbone: a week of prednisone, then dexamethasone, vincristine, cytarabine, daunorubicin and asparaginase with intrathecal therapy.
- 3.Post-induction, KMT2A-rearrangedNCI PDQ: Childhood Acute Lymphoblastic Leukemia Treatment (health professional version)
One 28-day course of blinatumomab after induction (Interfant-21), then Interfant-06 consolidation and maintenance.
- 4.Relapsed or refractoryNCI PDQ: Childhood Acute Lymphoblastic Leukemia Treatment (health professional version)
Revumenib (approved from the age of one) or trials of menin inhibitors; blinatumomab or CD19 CAR T-cells; transplant.
Generated from this cancer's standard of care, biomarkers and open problems. Take the group that matches where you are. To tick, add your own and print, open the one-page appointment sheet.
Newly diagnosed
- What is my exact diagnosis, stage, and grade, and which tests established them?Everything else follows from an accurate stage and subtype.
- Which biomarkers have been tested on my tumour (for example KMT2A rearrangement by FISH or RNA sequencing, and partner gene, Age at diagnosis, Presenting white cell count, Prednisone response at day 8, Flow cytometry MRD at end of induction), and what were the results?These results decide eligibility for targeted therapy, immunotherapy, and trials.
- Which subtype is my cancer, and does that change the recommended treatment?Recognised subtypes for this cancer include KMT2A-rearranged infant ALL, medium risk, KMT2A-rearranged infant ALL, high risk, KMT2A-germline infant ALL.
- Is germline (inherited) genetic testing recommended for me or my family?Inherited variants can change treatment and matter for relatives.
Induction
- For my situation (induction), which of the standard options do you recommend and why?Guideline options include: Interfant backbone: a week of prednisone, then dexamethasone, vincristine, cytarabine, daunorubicin and asparaginase with intrathecal therapy.
- Am I a candidate for Prednisone, Dexamethasone, Vincristine or related drugs, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
- How do the results of Interfant-06 apply to someone like me?Trial populations differ from individual patients; ask how closely you match.
Post-induction, KMT2A-rearranged
- For my situation (post-induction, kmt2a-rearranged), which of the standard options do you recommend and why?Guideline options include: One 28-day course of blinatumomab after induction (Interfant-21), then Interfant-06 consolidation and maintenance.
- Am I a candidate for Blinatumomab, Cytarabine, Methotrexate or related drugs, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
- How do the results of Interfant-06 apply to someone like me?Trial populations differ from individual patients; ask how closely you match.
High risk
- For my situation (high risk), which of the standard options do you recommend and why?Guideline options include: Allogeneic transplant in first remission after blinatumomab and consolidation.
- Am I a candidate for Blinatumomab, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Relapsed or refractory
- For my situation (relapsed or refractory), which of the standard options do you recommend and why?Guideline options include: Revumenib (approved from the age of one) or trials of menin inhibitors; blinatumomab or CD19 CAR T-cells; transplant.
- Am I a candidate for Revumenib, Ziftomenib, Blinatumomab or related drugs, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
- How do the results of AUGMENT-101 apply to someone like me?Trial populations differ from individual patients; ask how closely you match.
Any stage
- Are there clinical trials I could join, for example of Blinatumomab, Revumenib, Ziftomenib, Menin inhibitors?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?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?Supportive care improves quality of life and helps patients complete treatment.
- I read that “Infants who relapse within the first year despite blinatumomab”. How does that affect my plan?Open problems are where trials and second opinions matter most.
- I read that “Lineage switch to myeloid leukaemia under CD19-directed therapy”. How does that affect my plan?Open problems are where trials and second opinions matter most.
Much of what helps in the first weeks is free if you know to ask: testing, helplines, rides and lodging, second opinions, trial travel.
- Infant acute lymphoblastic leukaemia (KMT2A-rearranged, under one year): the full pageLeukaemia diagnosed in the first year of life is a different disease from leukaemia in older children: most cases carry a broken KMT2A gene and respond poorly to chemotherapy, and fewer than half of infants were cured for twenty years. One course of the immune drug blinatumomab after induction raised two-year disease-free survival from about half to over 80 percent in a pilot study.
- One-page appointment sheetYour questions, the words you may hear, what to bring, and space for the answers. Print it.
- Treatment sequencingWhich treatment tends to follow which, line by line.
- NavigatorStandard of care for your stage, what you have tried, and trials near you.
- 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.
Every term links to the glossary.