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Living with cancer· Appointment prep

Appointment sheet: PD-L1-high non-small-cell lung cancer without a driver mutation

One page to bring and write on: your details, the questions for PD-L1-high non-small-cell lung cancer without a driver mutation 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

PD-L1-high non-small-cell lung cancer without a driver mutation

Prepared with OnCo (onco.cc/prep/pdl1-high-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

20 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 PD-L1 tumour proportion score by immunohistochemistryon tissue, Absence of EGFR, ALK, ROS1, RET, BRAF, MET, HER2, KRAS G12C and NTRK alterations on a broad panel, STK11 and KEAP1 co-mutations, Tumour mutational burden, Thyroid function, liver enzymes, cortisol and glucose for immune-related adverse events), 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, PD-L1 50 percent or more
  1. 5.For my situation (advanced, first line, pd-l1 50 percent or more), which of the standard options do you recommend and why?
  2. 6.Am I a candidate for Pembrolizumab, Cemiplimab, Atezolizumab or related drugs, and what side effects should I expect?
  3. 7.How do the results of KEYNOTE-024 & KEYNOTE-189 and KEYNOTE-042 apply to someone like me?
Advanced, first line, PD-L1 1 to 49 percent
  1. 8.For my situation (advanced, first line, pd-l1 1 to 49 percent), which of the standard options do you recommend and why?
  2. 9.Am I a candidate for Pembrolizumab, Carboplatin, Pemetrexed or related drugs, and what side effects should I expect?
  3. 10.How do the results of KEYNOTE-024 & KEYNOTE-189 apply to someone like me?
Advanced, after progression on immunotherapy
  1. 11.For my situation (advanced, after progression on immunotherapy), which of the standard options do you recommend and why?
  2. 12.Am I a candidate for Docetaxel, Ramucirumab, Carboplatin or related drugs, and what side effects should I expect?
  3. 13.How do the results of TROPION-Lung01 apply to someone like me?
Duration and stopping
  1. 14.For my situation (duration and stopping), which of the standard options do you recommend and why?
  2. 15.Am I a candidate for Pembrolizumab, and what side effects should I expect?
Any stage
  1. 16.Are there clinical trials I could join, for example of HARMONi-3, Ivonescimab, Study of Dato-DXd Plus Pembrolizumab vs Pembrolizumab Alone in the First-line Treatment of Subjects With Advanced or Metastatic NSCLC Without Actionab, TROPION-Lung01?
  2. 17.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 18.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 19.I read that “Half of PD-L1-high patients progress within a year and have no predictor to identify them in advance”. How does that affect my plan?
  5. 20.I read that “Whether adding chemotherapy to a checkpoint inhibitor prolongs survival in PD-L1-high disease has never been tested in a randomised trial”. How does that affect my plan?

The words I may hear

  • Immune checkpoint: Brakes on the immune system that stop T cells attacking healthy tissue.
  • Immuno-oncology (IO) and checkpoint blockade: Treatments that take the brakes off the patient's own immune system so it attacks the cancer, chiefly antibodies against PD-1, PD-L1 and CTLA-4.
  • PD-L1 expression testing (22C3, SP142, SP263): A stain on the tumour biopsy that measures how much of the PD-L1 'don't attack me' protein is present, scored as a tumour proportion or combined positive score.
  • Tumour proportion score (TPS): The PD-L1 score used in lung cancer: the percentage of tumour cells that stain positive.
  • Maintenance therapy: Ongoing, gentler treatment given after the main course has shrunk the cancer, to hold it in check for as long as possible rather than to shrink it further.

Tests and results to bring

Biomarker results to ask for: PD-L1 tumour proportion score by immunohistochemistry (22C3, SP263, SP142) on tissue, Absence of EGFR, ALK, ROS1, RET, BRAF, MET, HER2, KRAS G12C and NTRK alterations on a broad panel, STK11 and KEAP1 co-mutations (prognostic), Tumour mutational burden (of limited use), Thyroid function, liver enzymes, cortisol and glucose for immune-related adverse events.

Scans and tests linked to this cancer: Companion diagnostics, Histopathology & immunohistochemistry, 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