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Living with cancer· Appointment prep

Appointment sheet: EGFR-mutated non-small-cell lung cancer

One page to bring and write on: your details, the questions for EGFR-mutated non-small-cell lung cancer 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

EGFR-mutated non-small-cell lung cancer

Prepared with OnCo (onco.cc/prep/egfr-mutant-nsclc/). 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

26 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 EGFR mutation by tissue or plasma sequencing before first-line therapy, T790M and C797S at progression, MET amplification at progression, Circulating tumour DNA clearance during treatment, Repeat biopsy at progression for small-cell transformation), 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?
Advanced, first line (exon 19 deletion or L858R)
  1. 5.For my situation (advanced, first line (exon 19 deletion or l858r)), which of the standard options do you recommend and why?
  2. 6.Am I a candidate for Osimertinib, Amivantamab, Lazertinib, and what side effects should I expect?
  3. 7.How do the results of FLAURA and FLAURA2 apply to someone like me?
Advanced, exon 20 insertion
  1. 8.For my situation (advanced, exon 20 insertion), which of the standard options do you recommend and why?
  2. 9.Am I a candidate for Amivantamab, Sunvozertinib, Carboplatin or related drugs, and what side effects should I expect?
  3. 10.How do the results of A Study of Combination Amivantamab and Carboplatin-Pemetrexed Therapy, Compared With Carboplatin-Pemetrexed, in Participants With Advanced or Metastatic Non-Small Cell Lung Cancer Characterized by Epidermal Growth Factor Receptor (EGFR) Exon 20 Insertions and Assessing an Oral EGFR Inhibitor, Sunvozertinib in Patients Who Have Advanced Non-small Cell Lung Cancer With EGFR or HER2 Mutation (WU-KONG1) apply to someone like me?
Advanced, after osimertinib
  1. 11.For my situation (advanced, after osimertinib), which of the standard options do you recommend and why?
  2. 12.Am I a candidate for Amivantamab, Savolitinib, Datopotamab deruxtecan or related drugs, and what side effects should I expect?
  3. 13.How do the results of A Study of Amivantamab and Lazertinib in Combination With Platinum-Based Chemotherapy Compared With Platinum-Based Chemotherapy in Patients With Epidermal Growth Factor Receptor (EGFR)-Mutated Locally Advanced or Metastatic Non- Small Cell Lung Cancer After Osimertinib Failure and Osimertinib Plus Savolitinib in EGFRm+/MET+ NSCLC Following Prior Osimertinib apply to someone like me?
Resected stage IB to IIIA
  1. 14.For my situation (resected stage ib to iiia), which of the standard options do you recommend and why?
  2. 15.Am I a candidate for Osimertinib, and what side effects should I expect?
  3. 16.How do the results of ADAURA apply to someone like me?
Unresectable stage III
  1. 17.For my situation (unresectable stage iii), which of the standard options do you recommend and why?
  2. 18.Am I a candidate for Osimertinib, and what side effects should I expect?
  3. 19.How do the results of LAURA apply to someone like me?
Brain and leptomeningeal metastases
  1. 20.For my situation (brain and leptomeningeal metastases), which of the standard options do you recommend and why?
  2. 21.Am I a candidate for Osimertinib, and what side effects should I expect?
Any stage
  1. 22.Are there clinical trials I could join, for example of Savolitinib, Osimertinib Plus Savolitinib in EGFRm+/MET+ NSCLC Following Prior Osimertinib, Patritumab deruxtecan, HERTHENA-Lung02?
  2. 23.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 24.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 25.I read that “No head-to-head trial compares the three first-line strategies, and the added toxicity of the combinations falls on every patient for a benefit concentrated in some”. How does that affect my plan?
  5. 26.I read that “Most resistance to osimertinib has no identifiable mechanism and no targeted option”. How does that affect my plan?

The words I may hear

  • EGFR mutation subtypes (exon 19 deletion, L858R, exon 20 insertion, T790M): Lung cancers with a mutated EGFR gene are treated with EGFR pills, but which pill and how well it works depends on exactly where the mutation is.
  • EGFR C797S: A mutation that stops osimertinib from binding to EGFR; the main on-target way lung cancers escape it.
  • EGFR exon 20 insertion: A rarer EGFR mutation (~2% of lung cancers) that does not respond to standard EGFR pills and needs its own drugs.
  • MET amplification (bypass resistance): When lung cancer switches on the MET receptor to bypass a blocked EGFR pill.
  • EGFR exon 19 deletion & L858R: Exon 19 deletion and L858R are the two common EGFR mutations, together ~85% of EGFR-mutant lung cancer, and both respond to EGFR pills.
  • Leptomeningeal disease: Cancer cells spreading in the fluid and membranes that bathe the brain and spinal cord, rather than as a solid lump.
  • Lobectomy: Removing one lobe of the lung (the right lung has three, the left two).
  • Driver mutation: One of the few mutations in a tumour that actually causes it to grow.
  • Oncogene addiction: When a cancer depends so completely on one mutated gene that blocking it collapses the tumour.
  • Tyrosine kinase inhibitor (TKI): Pills that block the on-switch enzyme (a kinase) that a particular cancer depends on: imatinib for CML, osimertinib for EGFR lung cancer, ibrutinib for CLL.

Tests and results to bring

Biomarker results to ask for: EGFR mutation by tissue or plasma sequencing before first-line therapy (exon 19 deletion, L858R, exon 20 insertion, uncommon), T790M and C797S at progression, MET amplification at progression (fluorescence in situ hybridisation or sequencing), Circulating tumour DNA clearance during treatment (under study), Repeat biopsy at progression for small-cell transformation, PD-L1 (of limited use; checkpoint inhibitors work poorly).

Scans and tests linked to this cancer: Comprehensive genomic profiling, Liquid biopsy (ctDNA), MRD / molecular residual disease testing.

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