Appointment sheet
HER2-mutant non-small-cell lung cancer
Prepared with OnCo (onco.cc/prep/her2-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 browserWhat I know so far
What is unclear to me
Changes since last time
My questions
17 on the sheetNewly diagnosed
- 1.What is my exact diagnosis, stage, and grade, and which tests established them?
- 2.Which biomarkers have been tested on my tumour (for example HER2mutation by DNA sequencing, HER2 amplification by sequencing or fluorescence in situ hybridisation, HER2 immunohistochemistry, Brain MRI at diagnosis, Lung imaging and symptoms for interstitial lung disease on trastuzumab deruxtecan; liver enzymes on zongertinib), and what were the results?
- 3.Which subtype is my cancer, and does that change the recommended treatment?
- 4.Is germline (inherited) genetic testing recommended for me or my family?
Advanced, first line
- 5.For my situation (advanced, first line), which of the standard options do you recommend and why?
- 6.Am I a candidate for Pembrolizumab, Carboplatin, Pemetrexed, and what side effects should I expect?
- 7.How do the results of KEYNOTE-024 & KEYNOTE-189 and Beamion LUNG-2: A Study to Test Whether Zongertinib (BI 1810631) Helps People With Advanced Non-small Cell Lung Cancer With HER2 Mutations Compared With Standard Treatment apply to someone like me?
Advanced, after platinum chemotherapy
- 8.For my situation (advanced, after platinum chemotherapy), which of the standard options do you recommend and why?
- 9.Am I a candidate for Zongertinib, Trastuzumab deruxtecan, Sevabertinib, and what side effects should I expect?
- 10.How do the results of Beamion LUNG-1 and DESTINY-Lung02 apply to someone like me?
Brain metastases
- 11.For my situation (brain metastases), which of the standard options do you recommend and why?
- 12.Am I a candidate for Zongertinib, Trastuzumab deruxtecan, and what side effects should I expect?
Any stage
- 13.Are there clinical trials I could join, for example of Beamion LUNG-2: A Study to Test Whether Zongertinib (BI 1810631) Helps People With Advanced Non-small Cell Lung Cancer With HER2 Mutations Compared With Standard Treatment, Sevabertinib, SOHO-01, Zongertinib?
- 14.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 15.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 16.I read that “No trial yet compares an oral HER2 inhibitor with an antibody-drug conjugate or settles the sequence”. How does that affect my plan?
- 17.I read that “Interstitial lung disease from trastuzumab deruxtecan is unpredictable and occasionally fatal”. How does that affect my plan?
The words I may hear
- Hepatotoxicity (liver enzyme elevation): Liver injury from a drug, usually detected as a rise in liver enzymes (ALT, AST) on routine blood tests before symptoms appear.
- HER2-positive (IHC 3+ or ISH-amplified): A cancer with too much HER2 growth-signal protein, either scored 3+ on the stain or shown to have extra copies of the gene.
- Interstitial lung disease (ILD) / pneumonitis: Interstitial lung disease (ILD) is lung inflammation, a serious side effect of some ADCs (especially Enhertu) and immunotherapy.
- Driver mutation: One of the few mutations in a tumour that actually causes it to grow.
- Brain metastases (intracranial disease): Tumour deposits that have travelled to the brain from a cancer elsewhere, ten times more common than cancers that start in the brain, mostly from lung, breast, melanoma and kidney cancer.
Tests and results to bring
Biomarker results to ask for: HER2 (ERBB2) mutation by DNA sequencing (tyrosine kinase domain, exon 20), HER2 amplification by sequencing or fluorescence in situ hybridisation, HER2 immunohistochemistry (expression, not mutation; separate indication), Brain MRI at diagnosis, Lung imaging and symptoms for interstitial lung disease on trastuzumab deruxtecan; liver enzymes on zongertinib.
Scans and tests linked to this cancer: Comprehensive genomic profiling.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Advanced, first line: Pembrolizumab plus platinum-pemetrexed as for driver-negative disease; zongertinib or trastuzumab deruxtecan first line only in trials (Beamion LUNG-2, DESTINY-Lung04). (Pembrolizumab, Carboplatin, Pemetrexed, KEYNOTE-024 & KEYNOTE-189, Beamion LUNG-2: A Study to Test Whether Zongertinib (BI 1810631) Helps People With Advanced Non-small Cell Lung Cancer With HER2 Mutations Compared With Standard Treatment)
- Brain metastases: Zongertinib and trastuzumab deruxtecan both have intracranial activity; stereotactic radiosurgery for large or symptomatic lesions. (Zongertinib, Trastuzumab deruxtecan, Stereotactic radiosurgery (Gamma Knife, CyberKnife, linac SRS), Brain metastases (intracranial disease))
- Advanced, after platinum chemotherapy: Zongertinib (Beamion LUNG-1) or trastuzumab deruxtecan 5.4 mg/kg (DESTINY-Lung02); the other agent at further progression. (Zongertinib, Beamion LUNG-1, Trastuzumab deruxtecan, DESTINY-Lung02, Sevabertinib, SOHO-01, Interstitial lung disease (ILD) / pneumonitis)
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 browserWhat I was told
Agreed next steps, dates and who to call