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Living with cancer· Appointment prep

Appointment sheet: Diffuse midline glioma, H3 K27-altered (including DIPG)

One page to bring and write on: your details, the questions for Diffuse midline glioma, H3 K27-altered (including DIPG) 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

Diffuse midline glioma, H3 K27-altered (including DIPG)

Prepared with OnCo (onco.cc/prep/dipg-dmg/). 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

16 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 K27M by immunohistochemistry or sequencing, Loss of H3K27me3, TP53, ACVR1, PDGFRA, PIK3CA co-alterations, EGFR alteration, Cerebrospinal-fluid cell-free tumour DNA for H3 K27M), 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?
  5. 5.For my situation (newly diagnosed), which of the standard options do you recommend and why?
  6. 6.Am I a candidate for Dordaviprone, and what side effects should I expect?
  7. 7.How do the results of ACTION apply to someone like me?
Progressive after radiotherapy, H3 K27M-mutant
  1. 8.For my situation (progressive after radiotherapy, h3 k27m-mutant), which of the standard options do you recommend and why?
  2. 9.Am I a candidate for Dordaviprone, and what side effects should I expect?
Recurrent, trial-eligible
  1. 10.For my situation (recurrent, trial-eligible), which of the standard options do you recommend and why?
All stages
  1. 11.For my situation (all stages), which of the standard options do you recommend and why?
Any stage
  1. 12.Are there clinical trials I could join, for example of Dordaviprone, ACTION, CAR-T for glioma (IL13Rα2, GD2, EGFRvIII, multi-target), Focused-ultrasound blood-brain barrier opening?
  2. 13.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 14.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 15.I read that “Most tumours still progress; dordaviprone helps a minority and the phase 3 ACTION trial will show whether earlier use extends survival”. How does that affect my plan?
  5. 16.I read that “Drug delivery across the blood-brain barrier into infiltrating tumour: convection-enhanced delivery, focused ultrasound and intraventricular cell therapy are being tested”. 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.
  • Blood-brain barrier (BBB): The tight seal around brain blood vessels that keeps most drugs out, one of the two main reasons brain cancer is so hard to treat.
  • 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.
  • 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: Stereotactic biopsy for molecular diagnosis and trial eligibility, then focal radiotherapy (about six weeks; hypofractionated schedules are non-inferior); steroids for symptoms. Enrolment in a trial such as ACTION (dordaviprone after radiotherapy) is recommended.

Biomarker results to ask for: H3 K27M by immunohistochemistry or sequencing, Loss of H3K27me3, TP53, ACVR1, PDGFRA, PIK3CA co-alterations, EGFR alteration (bithalamic subtype), Cerebrospinal-fluid cell-free tumour DNA for H3 K27M (in development for monitoring), MRI with diffusion and perfusion for response assessment.

Scans and tests linked to this cancer: 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