The first 60 days: Oligodendroglioma, IDH-mutant and 1p/19q-codeleted
Oligodendroglioma is the adult brain tumour most responsive to chemotherapy. It is recognised by an IDH mutation together with loss of parts of chromosomes 1 and 19, and after surgery it is treated with radiotherapy plus the PCV drug combination, or, for small grade 2 tumours, with vorasidenib or watchful waiting. Below, week by week, is what OnCo's record of Oligodendroglioma, IDH-mutant and 1p/19q-codeleted says about the first two months: the order is typical, the timing is yours to ask about. Sections appear only where the record has something to say. Orientation, not medical advice.
What happens now
Staging tests establish exactly what and where the cancer is. Everything else follows from the answers.
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.
Ask which of these were tested and what the results were; see the report reader for what each value means.
These specialties appear in the standard of care for this cancer. In most centres they meet weekly as a tumour board to agree each plan; you can ask when yours was discussed and what was decided.
- PathologistNamed in the standard of care for: Newly diagnosed.
- SurgeonNamed in the standard of care for: Newly diagnosed, Recurrence.
- Medical oncologistNamed in the standard of care for: Grade 2, residual or recurrent, not needing radiotherapy, Grade 2, high risk, and grade 3, Recurrence.
- Clinical oncologist (radiotherapy)Named in the standard of care for: Grade 2, high risk, and grade 3, Recurrence.
A second opinion from a centre that treats many similar cases is normal, not rude; the standard of care tells you what to compare it against.
Each row is a setting from the standard of care, in the order it usually arises. Not all will apply to you; your stage and biomarkers decide which do. The guideline grade, where recorded, says how strong the evidence is.
Radiotherapy followed by PCV (procarbazine, lomustine, vincristine), the regimen validated in RTOG 9402, EORTC 26951 and RTOG 9802; radiotherapy with temozolomide is an alternative being compared in CODEL.
- 2.Grade 2, residual or recurrent, not needing radiotherapyNCCN Guidelines: Central Nervous System Cancers
Vorasidenib (INDIGO) or continued observation.
Re-resection, temozolomide or lomustine, re-irradiation; bevacizumab for symptoms.
Generated from this cancer's standard of care, biomarkers and open problems. Take the group that matches where you are. To tick, add your own and print, open the one-page appointment sheet.
Newly diagnosed
- What is my exact diagnosis, stage, and grade, and which tests established them?Everything else follows from an accurate stage and subtype.
- 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?These results decide eligibility for targeted therapy, immunotherapy, and trials.
- Which subtype is my cancer, and does that change the recommended treatment?Recognised subtypes for this cancer include Oligodendroglioma, IDH-mutant and 1p/19q-codeleted, grade 2, Oligodendroglioma, IDH-mutant and 1p/19q-codeleted, grade 3, Oligodendroglioma with minigemistocytes or gliofibrillary oligodendrocytes.
- Is germline (inherited) genetic testing recommended for me or my family?Inherited variants can change treatment and matter for relatives.
- For my situation (newly diagnosed), which of the standard options do you recommend and why?Guideline options include: 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.
Grade 2, residual or recurrent, not needing radiotherapy
- For my situation (grade 2, residual or recurrent, not needing radiotherapy), which of the standard options do you recommend and why?Guideline options include: Vorasidenib (INDIGO) or continued observation.
- Am I a candidate for Vorasidenib, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
- How do the results of INDIGO apply to someone like me?Trial populations differ from individual patients; ask how closely you match.
Grade 2, high risk, and grade 3
- For my situation (grade 2, high risk, and grade 3), which of the standard options do you recommend and why?Guideline options include: Radiotherapy followed by PCV (procarbazine, lomustine, vincristine), the regimen validated in RTOG 9402, EORTC 26951 and RTOG 9802; radiotherapy with temozolomide is an alternative being compared in CODEL.
- Am I a candidate for Procarbazine, Lomustine (CCNU), Vincristine or related drugs, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
- How do the results of RTOG 9402 and EORTC 26951 apply to someone like me?Trial populations differ from individual patients; ask how closely you match.
Recurrence
- For my situation (recurrence), which of the standard options do you recommend and why?Guideline options include: Re-resection, temozolomide or lomustine, re-irradiation; bevacizumab for symptoms.
- Am I a candidate for Temozolomide, Lomustine (CCNU), Bevacizumab (glioblastoma use), and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Any stage
- Are there clinical trials I could join, for example of Vorasidenib, Safusidenib, DNA methylation profiling?Trials are how the next standard of care is set; asking early keeps options open.
- Would a second opinion at a high-volume centre change anything, and can you help arrange it?Rare or high-stakes decisions benefit from a centre that treats many similar patients.
- What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?Supportive care improves quality of life and helps patients complete treatment.
- I read that “Whether temozolomide can replace PCV without losing survival (CODEL)”. How does that affect my plan?Open problems are where trials and second opinions matter most.
- I read that “How to sequence vorasidenib, chemotherapy and radiotherapy over a disease course of decades”. How does that affect my plan?Open problems are where trials and second opinions matter most.
Much of what helps in the first weeks is free if you know to ask: testing, helplines, rides and lodging, second opinions, trial travel.
- Oligodendroglioma, IDH-mutant and 1p/19q-codeleted: the full pageOligodendroglioma is the adult brain tumour most responsive to chemotherapy. It is recognised by an IDH mutation together with loss of parts of chromosomes 1 and 19, and after surgery it is treated with radiotherapy plus the PCV drug combination, or, for small grade 2 tumours, with vorasidenib or watchful waiting.
- One-page appointment sheetYour questions, the words you may hear, what to bring, and space for the answers. Print it.
- Treatment sequencingWhich treatment tends to follow which, line by line.
- NavigatorStandard of care for your stage, what you have tried, and trials near you.
- 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.
Every term links to the glossary.