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Appointment sheet: Recurrent and metastatic nasopharyngeal carcinoma

One page to bring and write on: your details, the questions for Recurrent and metastatic nasopharyngeal 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 and metastatic nasopharyngeal carcinoma

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

18 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 Plasma EBV DNA, Extent and resectability of local recurrence on MRI and endoscopy, Number and sites of metastases, PD-L1, EGFR, HER3 and B7-H3 expression), 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?
Resectable local recurrence
  1. 5.For my situation (resectable local recurrence), which of the standard options do you recommend and why?
Unresectable local recurrence
  1. 6.For my situation (unresectable local recurrence), which of the standard options do you recommend and why?
Metastatic disease, first line
  1. 7.For my situation (metastatic disease, first line), which of the standard options do you recommend and why?
  2. 8.Am I a candidate for Gemcitabine + cisplatin, Toripalimab, Camrelizumab or related drugs, and what side effects should I expect?
  3. 9.How do the results of JUPITER-02 and CAPTAIN-1st apply to someone like me?
After platinum and PD-1 therapy
  1. 10.For my situation (after platinum and pd-1 therapy), which of the standard options do you recommend and why?
  2. 11.Am I a candidate for Nivolumab, Pembrolizumab, Capecitabine, and what side effects should I expect?
  3. 12.How do the results of A Phase III Study of YL201 in Recurrent or Metastatic Nasopharyngeal Carcinoma(TAISHAN-301) and KL-A167 Injection Combined With Cisplatin and Gemcitabine vs Placebo Combined With Cisplatin and Gemcitabine in the Treatment of Recurrent or Metastatic Nasopharyngeal Carcinoma apply to someone like me?
Oligometastatic disease
  1. 13.For my situation (oligometastatic disease), which of the standard options do you recommend and why?
Any stage
  1. 14.Are there clinical trials I could join, for example of A Phase III Study of YL201 in Recurrent or Metastatic Nasopharyngeal Carcinoma(TAISHAN-301), KL-A167 Injection Combined With Cisplatin and Gemcitabine vs Placebo Combined With Cisplatin and Gemcitabine in the Treatment of Recurrent or Metastatic Nasopharyngeal Carcinoma, A Study Comparing BL-B01D1 With Physician's Choice of Chemotherapy in Patients With Recurrent or Metastatic Nasopharyngeal Carcinoma(PANKU-NPC01), A Study of MRG003 in Combination With Pucotenlimab Versus Chemotherapy in the Treatment of Patients With Recurrent or Metastatic Nasopharyngeal Carcin?
  2. 15.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 16.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 17.I read that “Median survival in metastatic disease is still a few years”. How does that affect my plan?
  5. 18.I read that “Which patients with local recurrence should have surgery rather than re-irradiation depends on surgical expertise concentrated in a few centres”. How does that affect my plan?

The words I may hear

  • Plasma EBV DNA: Fragments of Epstein-Barr virus DNA in the blood that measure nasopharyngeal carcinoma: used to screen healthy people in endemic regions, to stage, to decide who needs extra treatment after radiotherapy, and to detect relapse.
  • Epstein-Barr virus (EBV) in cancer: The common glandular-fever virus, carried lifelong by most adults, which in a minority of people drives nasopharyngeal cancer, some stomach cancers and several lymphomas.
  • Re-irradiation: Giving radiotherapy again to a region that has already been treated, once thought impossible because normal tissues remember the first dose.
  • Circulating tumour DNA (ctDNA): Circulating tumour DNA (ctDNA) consists of fragments of DNA shed by tumour cells into the blood, detectable with sensitive sequencing.
  • Lymphadenectomy (lymph node dissection): Surgically removing the lymph nodes that drain a tumour, both to stage the cancer and to clear any spread.

Tests and results to bring

Biomarker results to ask for: Plasma EBV DNA (response and surveillance), Extent and resectability of local recurrence on MRI and endoscopy, Number and sites of metastases (oligometastatic definition), PD-L1 (not required; PD-1 benefit regardless), EGFR, HER3 and B7-H3 expression (antibody-drug conjugate trials), HLA type and EBV antigen expression (EBV-specific T-cell therapy trials).

Scans and tests linked to this cancer: Liquid biopsy (ctDNA).

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