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Appointment sheet: Glioma & glioblastoma

One page to bring and write on: your details, the questions for Glioma & glioblastoma 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

Glioma & glioblastoma

Prepared with OnCo (onco.cc/prep/glioblastoma/). 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

28 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 IDH1/2, 1p/19q codeletion, MGMT methylation, H3K27M, 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?
Glioblastoma
  1. 5.For my situation (glioblastoma), which of the standard options do you recommend and why?
  2. 6.Am I a candidate for Optune / Optune Pax (TTFields), and what side effects should I expect?
IDH-mutant grade 2
  1. 7.For my situation (idh-mutant grade 2), which of the standard options do you recommend and why?
  2. 8.Am I a candidate for Vorasidenib, and what side effects should I expect?
Diagnosis
  1. 9.For my situation (diagnosis), which of the standard options do you recommend and why?
Glioblastoma, newly diagnosed
  1. 10.For my situation (glioblastoma, newly diagnosed), which of the standard options do you recommend and why?
  2. 11.Am I a candidate for Temozolomide, Optune / Optune Pax (TTFields), and what side effects should I expect?
  3. 12.How do the results of EORTC 26981 / NCIC CE.3 (Stupp trial) and CCTG CE.6 / EORTC 26062-22061 (Perry trial) apply to someone like me?
Glioblastoma, recurrent
  1. 13.For my situation (glioblastoma, recurrent), which of the standard options do you recommend and why?
  2. 14.Am I a candidate for Lomustine (CCNU), Bevacizumab (glioblastoma use), and what side effects should I expect?
IDH-mutant grade 2 glioma
  1. 15.For my situation (idh-mutant grade 2 glioma), which of the standard options do you recommend and why?
  2. 16.Am I a candidate for Vorasidenib, and what side effects should I expect?
  3. 17.How do the results of INDIGO apply to someone like me?
Oligodendroglioma grade 3 / astrocytoma grade 3
  1. 18.For my situation (oligodendroglioma grade 3 / astrocytoma grade 3), which of the standard options do you recommend and why?
  2. 19.Am I a candidate for Temozolomide, and what side effects should I expect?
H3 K27M diffuse midline glioma
  1. 20.For my situation (h3 k27m diffuse midline glioma), which of the standard options do you recommend and why?
  2. 21.Am I a candidate for Dordaviprone, and what side effects should I expect?
Paediatric low-grade glioma
  1. 22.For my situation (paediatric low-grade glioma), which of the standard options do you recommend and why?
  2. 23.Am I a candidate for Tovorafenib, and what side effects should I expect?
Any stage
  1. 24.Are there clinical trials I could join, for example of Armoured, logic-gated & next-gen CARs, Boron neutron capture therapy, Hyperthermia, LAM561?
  2. 25.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 26.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 27.I read that “Blood-brain barrier”. How does that affect my plan?
  5. 28.I read that “Immunologically cold, heterogeneous, infiltrative”. How does that affect my plan?

The words I may hear

  • EGFRvIII: EGFRvIII is a mutant, tumour-only version of the EGFR receptor found in about a third of glioblastomas.
  • Necrosis: Messy, uncontrolled cell death, where the cell bursts and spills its contents.
  • Extent of resection (RANO resect classes): How much of a brain tumour the surgeon removes, measured on an MRI scan soon after the operation.
  • Accelerated approval: FDA approval based on early evidence (like tumour shrinkage) on condition that a confirmatory trial follows.
  • Hot vs cold tumours: 'Hot' tumours are full of immune cells and respond to immunotherapy; 'cold' tumours have kept the immune system out.
  • Metabolic theory of cancer: from Warburg to oncometabolites: Otto Warburg noticed a century ago that cancer cells ferment glucose even when oxygen is plentiful and concluded that damaged respiration causes cancer.
  • Bioelectric theory of cancer (Levin): Cells hold a voltage across their membranes, and tissues share these voltages as patterns that guide growth and regeneration.
  • MGMT promoter methylation: A chemical switch that turns off a DNA-repair gene.
  • 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.
  • Cancer stem cell theory and phenotypic plasticity: The idea that a tumour is organised like a tissue, with a small pool of stem-like cells that renew it and a bulk that cannot, so killing the bulk shrinks the tumour but the stem-like cells regrow it.

Tests and results to bring

Diagnosis: MRI with contrast; maximal safe resection with 5-ALA and intraoperative mapping, with early postoperative MRI to measure the extent of resection; integrated histo-molecular diagnosis with methylation classification where available.

Glioblastoma, newly diagnosed: Radiotherapy 60 Gy in 30 fractions with concurrent and 6 cycles adjuvant temozolomide; from age 65, short-course radiotherapy (40 Gy in 15 fractions) with temozolomide (CCTG CE.6); for older patients unfit for combined treatment, temozolomide alone or hypofractionated radiotherapy alone, chosen by MGMT status (Nordic, NOA-08); TTFields with maintenance temozolomide; trials for MGMT-unmethylated patients.

Biomarker results to ask for: IDH1/2, 1p/19q codeletion, MGMT methylation, H3K27M, EGFR amplification, Methylation class, IDH1/2 mutation (vorasidenib eligibility), MGMT promoter methylation (temozolomide benefit), H3 K27M (dordaviprone eligibility), BRAF fusion / V600E (tovorafenib, dabrafenib-trametinib), TERT promoter, EGFR amplification, +7/−10 (molecular glioblastoma), CDKN2A/B homozygous deletion (grade 4 astrocytoma), DNA methylation class (Heidelberg classifier), NTRK/ALK/ROS1 fusions (infant gliomas), TMB / mismatch repair (rare hypermutant, IO-responsive).

Scans and tests linked to this cancer: MRI, PET (positron emission tomography), PET/CT, DNA methylation profiling, Fluorescence-guided surgery, Intraoperative fluorescence and Cerenkov imaging systems (SPY, Firefly, LumiSystem, LightPath).

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