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Living with cancer· Appointment prep

Appointment sheet: Recurrent or metastatic head and neck squamous cell carcinoma

One page to bring and write on: your details, the questions for Recurrent or metastatic head and neck squamous cell carcinoma 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

Recurrent or metastatic head and neck squamous cell carcinoma

Prepared with OnCo (onco.cc/prep/recurrent-metastatic-hnscc/). 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

24 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 combined positive score, HPV and p16 status of oropharyngeal primaries, Platinum-free interval, EGFR expression, Circulating tumour DNA and HPV DNA), 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?
First line, combined positive score 1 or more
  1. 5.For my situation (first line, combined positive score 1 or more), which of the standard options do you recommend and why?
  2. 6.Am I a candidate for Pembrolizumab, and what side effects should I expect?
  3. 7.How do the results of KEYNOTE-048 apply to someone like me?
First line, combined positive score under 1 or immunotherapy unsuitable
  1. 8.For my situation (first line, combined positive score under 1 or immunotherapy unsuitable), which of the standard options do you recommend and why?
  2. 9.Am I a candidate for Pembrolizumab, Cisplatin, Carboplatin or related drugs, and what side effects should I expect?
  3. 10.How do the results of EXTREME and KEYNOTE-048 apply to someone like me?
After platinum and immunotherapy
  1. 11.For my situation (after platinum and immunotherapy), which of the standard options do you recommend and why?
  2. 12.Am I a candidate for Nivolumab, Cetuximab, Docetaxel or related drugs, and what side effects should I expect?
  3. 13.How do the results of CheckMate 141 apply to someone like me?
Locoregional recurrence
  1. 14.For my situation (locoregional recurrence), which of the standard options do you recommend and why?
  2. 15.Am I a candidate for Cetuximab sarotalocan, and what side effects should I expect?
Resource-limited settings
  1. 16.For my situation (resource-limited settings), which of the standard options do you recommend and why?
  2. 17.Am I a candidate for Methotrexate, and what side effects should I expect?
  3. 18.How do the results of Oral metronomic chemotherapy vs intravenous cisplatin (Tata Memorial) and Low-dose nivolumab plus metronomic chemotherapy (Tata Memorial) apply to someone like me?
Symptom control
  1. 19.For my situation (symptom control), which of the standard options do you recommend and why?
Any stage
  1. 20.Are there clinical trials I could join, for example of Petosemtamab, LiGeR-HN1, A Phase 3 Study to Evaluate Petosemtamab Compared With Investigator's Choice Monotherapy in Previously Treated Head and Neck Squamous Cell Carcinoma P, Ficerafusp alfa?
  2. 21.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 22.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 23.I read that “Most patients still die within two years”. How does that affect my plan?
  5. 24.I read that “No test yet identifies the minority who gain years from immunotherapy”. How does that affect my plan?

The words I may hear

Tests and results to bring

Biomarker results to ask for: PD-L1 combined positive score (22C3 assay), HPV and p16 status of oropharyngeal primaries, Platinum-free interval, EGFR expression (near universal, not predictive), Circulating tumour DNA and HPV DNA (emerging), Tumour mutational burden (pembrolizumab for 10 or more mutations per megabase).

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