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Living with cancer· Appointment prep

Appointment sheet: Paediatric high-grade glioma (excluding diffuse midline glioma)

One page to bring and write on: your details, the questions for Paediatric high-grade glioma (excluding diffuse midline glioma) 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

Paediatric high-grade glioma (excluding diffuse midline glioma)

Prepared with OnCo (onco.cc/prep/paediatric-high-grade-glioma/). 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

18 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 H3 G34 mutationand, to exclude diffuse midline glioma, H3 K27 status, IDH1/IDH2, NTRK, ALK, ROS1 and MET fusions in infants, BRAF V600E with CDKN2A deletion, PDGFRA, MYCN and EGFR amplification), 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?
Newly diagnosed, child over about three years
  1. 5.For my situation (newly diagnosed, child over about three years), which of the standard options do you recommend and why?
  2. 6.Am I a candidate for Temozolomide, and what side effects should I expect?
Infant-type hemispheric glioma with a fusion
  1. 7.For my situation (infant-type hemispheric glioma with a fusion), which of the standard options do you recommend and why?
  2. 8.Am I a candidate for Larotrectinib, Entrectinib, Alectinib or related drugs, and what side effects should I expect?
BRAF V600E-mutant
  1. 9.For my situation (braf v600e-mutant), which of the standard options do you recommend and why?
  2. 10.Am I a candidate for Dabrafenib + trametinib, Dabrafenib, Trametinib, and what side effects should I expect?
Constitutional mismatch repair deficiency
  1. 11.For my situation (constitutional mismatch repair deficiency), which of the standard options do you recommend and why?
  2. 12.Am I a candidate for Nivolumab, Pembrolizumab, and what side effects should I expect?
Recurrence
  1. 13.For my situation (recurrence), which of the standard options do you recommend and why?
Any stage
  1. 14.Are there clinical trials I could join, for example of Dabrafenib + trametinib, Larotrectinib, Entrectinib, CAR-T for glioma (IL13Rα2, GD2, EGFRvIII, multi-target)?
  2. 15.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 16.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 17.I read that “No systemic therapy has improved survival in H3 G34-mutant or H3- and IDH-wildtype tumours”. How does that affect my plan?
  5. 18.I read that “How long to continue fusion or BRAF inhibitors in children who respond, and what happens on stopping”. How does that affect my plan?

The words I may hear

  • H3 K27M (diffuse midline glioma): A single change in a histone protein that defines diffuse midline glioma, the childhood brain tumour with the fewest treatment options, and now the target of the first approved drug for it.
  • Re-irradiation: Giving radiotherapy again to a region that has already been treated, once thought impossible because normal tissues remember the first dose.
  • Late effects and survivorship toxicity: Health problems appearing months or decades after treatment ends: heart damage, infertility, second cancers, lymphoedema, dry mouth, memory problems, weak bones.

Tests and results to bring

Newly diagnosed, child over about three years: Maximal safe resection, focal radiotherapy and temozolomide during and after radiotherapy by extrapolation from adult practice; molecular profiling of every tumour.

Biomarker results to ask for: H3 G34 mutation (H3F3A) and, to exclude diffuse midline glioma, H3 K27 status, IDH1/IDH2 (wildtype in most; mutant in some adolescents), NTRK, ALK, ROS1 and MET fusions in infants, BRAF V600E with CDKN2A deletion, PDGFRA, MYCN and EGFR amplification, Mismatch repair protein loss and tumour mutation burden (constitutional mismatch repair deficiency), DNA methylation class.

Scans and tests linked to this cancer: Comprehensive genomic profiling, Germline (hereditary) testing, DNA methylation profiling.

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