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Living with cancer· Appointment prep

Appointment sheet: Oligodendroglioma, IDH-mutant and 1p/19q-codeleted

One page to bring and write on: your details, the questions for Oligodendroglioma, IDH-mutant and 1p/19q-codeleted 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

Oligodendroglioma, IDH-mutant and 1p/19q-codeleted

Prepared with OnCo (onco.cc/prep/oligodendroglioma/). 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 IDH1 or IDH2 mutation, Whole-arm 1p/19q codeletion, TERT promoter mutation, CIC and FUBP1 mutations, CDKN2A/B homozygous 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?
  5. 5.For my situation (newly diagnosed), which of the standard options do you recommend and why?
Grade 2, residual or recurrent, not needing radiotherapy
  1. 6.For my situation (grade 2, residual or recurrent, not needing radiotherapy), which of the standard options do you recommend and why?
  2. 7.Am I a candidate for Vorasidenib, and what side effects should I expect?
  3. 8.How do the results of INDIGO apply to someone like me?
Grade 2, high risk, and grade 3
  1. 9.For my situation (grade 2, high risk, and grade 3), which of the standard options do you recommend and why?
  2. 10.Am I a candidate for Procarbazine, Lomustine (CCNU), Vincristine or related drugs, and what side effects should I expect?
  3. 11.How do the results of RTOG 9402 and EORTC 26951 apply to someone like me?
Recurrence
  1. 12.For my situation (recurrence), which of the standard options do you recommend and why?
  2. 13.Am I a candidate for Temozolomide, Lomustine (CCNU), Bevacizumab (glioblastoma use), and what side effects should I expect?
Any stage
  1. 14.Are there clinical trials I could join, for example of Vorasidenib, Safusidenib, 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 “Whether temozolomide can replace PCV without losing survival (CODEL)”. How does that affect my plan?
  5. 18.I read that “How to sequence vorasidenib, chemotherapy and radiotherapy over a disease course of decades”. How does that affect my plan?

The words I may hear

  • Extent of resection (RANO resect classes): How much of a brain tumour the surgeon removes, measured on an MRI scan soon after the operation.
  • Re-irradiation: Giving radiotherapy again to a region that has already been treated, once thought impossible because normal tissues remember the first dose.

Tests and results to bring

Newly diagnosed: Maximal safe resection and molecular diagnosis with 1p/19q testing; observation is reasonable after gross total resection of a grade 2 tumour in a younger patient.

Biomarker results to ask for: IDH1 or IDH2 mutation, Whole-arm 1p/19q codeletion (FISH, array or methylation-based copy number), TERT promoter mutation, CIC and FUBP1 mutations, CDKN2A/B homozygous deletion (poor outlook, rare), DNA methylation class.

Scans and tests linked to this cancer: Active surveillance, 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