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Living with cancer· Appointment prep

Appointment sheet: Paediatric low-grade glioma

One page to bring and write on: your details, the questions for Paediatric low-grade 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 low-grade glioma

Prepared with OnCo (onco.cc/prep/paediatric-low-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 KIAA1549-BRAF fusion, BRAF V600E, NF1 germline status, FGFR1 mutation or fusion, CDKN2A deletion), 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?
Resectable tumour
  1. 5.For my situation (resectable tumour), which of the standard options do you recommend and why?
Unresectable or progressive, BRAF V600E
  1. 6.For my situation (unresectable or progressive, braf v600e), which of the standard options do you recommend and why?
  2. 7.Am I a candidate for Dabrafenib + trametinib, and what side effects should I expect?
  3. 8.How do the results of TADPOLE (CDRB436G2201) apply to someone like me?
Relapsed or refractory, BRAF fusion or V600E
  1. 9.For my situation (relapsed or refractory, braf fusion or v600e), which of the standard options do you recommend and why?
  2. 10.Am I a candidate for Tovorafenib, and what side effects should I expect?
  3. 11.How do the results of FIREFLY-1 apply to someone like me?
Unresectable, no targetable alteration or targeted drug unavailable
  1. 12.For my situation (unresectable, no targetable alteration or targeted drug unavailable), which of the standard options do you recommend and why?
  2. 13.Am I a candidate for Carboplatin, Vincristine, Vinblastine, and what side effects should I expect?
Any stage
  1. 14.Are there clinical trials I could join, for example of Tovorafenib, Dabrafenib + trametinib, FIREFLY-1, DNA methylation profiling?
  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 “How long to continue MAPK inhibitors and whether tumours regrow on stopping; intermittent dosing and stop rules are being studied in FIREFLY-2 and the COG selumetinib trials”. How does that affect my plan?
  5. 18.I read that “Long-term effects of RAF and MEK inhibition on growth plates, skin and heart in children who may take them for years; registries and trial follow-up are collecting these data”. How does that affect my plan?

The words I may hear

  • 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

Biomarker results to ask for: KIAA1549-BRAF fusion, BRAF V600E (worse response to chemotherapy, target of BRAF/MEK inhibitors), NF1 germline status, FGFR1 mutation or fusion, CDKN2A deletion (with V600E, marks higher risk), Methylation-based classification, Visual acuity and visual fields in optic pathway glioma.

Scans and tests linked to this cancer: Germline (hereditary) testing, MRI, DNA methylation profiling, Intraoperative MRI and CT.

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

The treatments I may be offered

  • Resectable tumour: Maximal safe resection; gross total resection is curative in most and no adjuvant therapy is given. Observation for stable residual disease. (MRI)
  • Unresectable or progressive, BRAF V600E: Dabrafenib plus trametinib first line (TADPOLE: higher response rate and longer progression-free survival than carboplatin-vincristine; FDA approval March 2023 for patients aged one year and over). (Dabrafenib + trametinib, TADPOLE (CDRB436G2201))
  • Unresectable, no targetable alteration or targeted drug unavailable: Carboplatin and vincristine, or weekly vinblastine, to defer radiotherapy; focal conformal or proton radiotherapy is reserved for older children and for progression after systemic options. (Carboplatin, Vincristine, Vinblastine, Proton therapy)
  • Relapsed or refractory, BRAF fusion or V600E: Tovorafenib (FIREFLY-1; FDA accelerated approval April 2024 for patients aged six months and over), or a MEK inhibitor such as selumetinib in trials. (Tovorafenib, FIREFLY-1)

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