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Appointment sheet: Neuroblastoma (paediatric)

One page to bring and write on: your details, the questions for Neuroblastoma (paediatric) plus your own, the words you may hear, what to bring, the treatments the standard of care names, and room for the answers and agreed next steps. What you type stays in this browser. Print it or save it as a PDF. New to all this? Start with the first 60 days. Orientation, not medical advice.

Tick the questions to print

All of this cancer's questions start ticked. Untick what does not apply; ticks are kept in this browser. .

Your own questions

Shared with the prep pack, so questions you add there appear here too.

Print or save as PDF

Use (or Ctrl+P, Cmd+P on a Mac). To keep a copy, choose Save as PDF as the destination in the print dialog. Only the sheet prints; the controls stay on screen. Your typed notes print where you typed them; empty fields print as ruled lines to write on.

Appointment sheet

Neuroblastoma (paediatric)

Prepared with OnCo (onco.cc/prep/neuroblastoma/). 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 browser
What I know so far
What is unclear to me
Changes since last time

My questions

27 on the sheet
Newly diagnosed
  1. 1.What is my exact diagnosis, stage, and grade, and which tests established them?
  2. 2.Which biomarkers have been tested on my tumour (for example MYCN amplification, ALK mutation, Age, stage, ploidy, Segmental chromosome aberrations, INRG stage and image-defined risk factors), and what were the results?
  3. 3.Which subtype is my cancer, and does that change the recommended treatment?
  4. 4.Is germline (inherited) genetic testing recommended for me or my family?
High-risk
  1. 5.For my situation (high-risk), which of the standard options do you recommend and why?
  2. 6.Am I a candidate for Lorlatinib, and what side effects should I expect?
Very-low / low risk (L1, MS)
  1. 7.For my situation (very-low / low risk (l1, ms)), which of the standard options do you recommend and why?
Intermediate risk
  1. 8.For my situation (intermediate risk), which of the standard options do you recommend and why?
  2. 9.Am I a candidate for Doxorubicin, and what side effects should I expect?
High risk: induction
  1. 10.For my situation (high risk: induction), which of the standard options do you recommend and why?
  2. 11.Am I a candidate for 131I-MIBG (iobenguane I-131) therapy, Lorlatinib, Dinutuximab (ch14.18) / dinutuximab beta or related drugs, and what side effects should I expect?
  3. 12.How do the results of COG ANBL1531 apply to someone like me?
High risk: local control
  1. 13.For my situation (high risk: local control), which of the standard options do you recommend and why?
High risk: consolidation
  1. 14.For my situation (high risk: consolidation), which of the standard options do you recommend and why?
  2. 15.How do the results of COG ANBL0532 and SIOPEN HR-NBL1 apply to someone like me?
High risk: post-consolidation
  1. 16.For my situation (high risk: post-consolidation), which of the standard options do you recommend and why?
  2. 17.Am I a candidate for Dinutuximab (ch14.18) / dinutuximab beta, Eflornithine (DFMO), and what side effects should I expect?
  3. 18.How do the results of COG ANBL0032 and NMTRC003/003B (DFMO maintenance) apply to someone like me?
Relapsed / refractory
  1. 19.For my situation (relapsed / refractory), which of the standard options do you recommend and why?
  2. 20.Am I a candidate for Dinutuximab (ch14.18) / dinutuximab beta, Naxitamab, 131I-MIBG (iobenguane I-131) therapy or related drugs, and what side effects should I expect?
  3. 21.How do the results of Naxitamab Study 201 and GD2-CART01 (Bambino Gesù phase 1/2) apply to someone like me?
Survivorship
  1. 22.For my situation (survivorship), which of the standard options do you recommend and why?
Any stage
  1. 23.Are there clinical trials I could join, for example of Armoured, logic-gated & next-gen CARs, COG ANBL1531, 131I-MIBG (iobenguane I-131) therapy, Lorlatinib?
  2. 24.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 25.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 26.I read that “Relapsed high-risk disease”. How does that affect my plan?
  5. 27.I read that “Long-term toxicity of intensive therapy”. 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.
  • MYCN amplification: Extra copies of the MYCN oncogene, found in about 20% of neuroblastomas, mark the most aggressive disease and define high risk at any age.
  • INRG staging and risk groups: INRG staging is the international system that sorts neuroblastoma into four risk groups, from the lowest (often observed, sometimes regressing on its own) to high risk (about half of patients), using age under 18 months, spread, MYCN amplification, 11q status, ploidy and histology.
  • ADCC (antibody-dependent cellular cytotoxicity): In ADCC, an antibody flags a cell, and NK cells recognise the flag and kill it.
  • RACE for Children Act: A US law that makes drug companies test new targeted cancer drugs in children whenever the drug's target matters in a childhood cancer, instead of letting them skip children because their cancers are rare.
  • Autologous stem cell transplant (ASCT): High-dose chemotherapy (melphalan in myeloma, BEAM in lymphoma) that would permanently destroy the bone marrow, made survivable by giving the patient back their own previously collected stem cells, which engraft in 10-14 days.
  • 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.

Tests and results to bring

Biomarker results to ask for: MYCN amplification, ALK mutation, Age, stage, ploidy, Segmental chromosome aberrations, INRG stage and image-defined risk factors, Age (<18 months), MYCN amplification (FISH), ALK mutation/amplification, 11q aberration, 1p deletion, ploidy, segmental chromosomal aberrations, INPC histology, Urinary catecholamines (VMA/HVA), 123I-MIBG Curie score / 18F-MFBG PET, Bone marrow minimal residual disease (PHOX2B, TH qPCR), GD2 expression (near-universal).

Scans and tests linked to this cancer: SPECT/CT, Ultrasound, MIBG imaging and 131I-MIBG therapy.

Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.

The treatments I may be offered

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 browser
What I was told
Agreed next steps, dates and who to call