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Living with cancer· Appointment prep

Appointment sheet: Pleural mesothelioma

One page to bring and write on: your details, the questions for Pleural mesothelioma 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

Pleural mesothelioma

Prepared with OnCo (onco.cc/prep/pleural-mesothelioma/). 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 Histology, BAP1 loss, CDKN2A/MTAP deletion, Mesothelin expression, PD-L1), 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?
Diagnosis and staging
  1. 5.For my situation (diagnosis and staging), which of the standard options do you recommend and why?
First line, non-epithelioid
  1. 6.For my situation (first line, non-epithelioid), which of the standard options do you recommend and why?
  2. 7.Am I a candidate for Nivolumab, Ipilimumab, and what side effects should I expect?
  3. 8.How do the results of CheckMate 743 apply to someone like me?
First line, epithelioid
  1. 9.For my situation (first line, epithelioid), which of the standard options do you recommend and why?
  2. 10.Am I a candidate for Pembrolizumab, Pemetrexed, and what side effects should I expect?
  3. 11.How do the results of IND.227 / KEYNOTE-483 apply to someone like me?
Surgery
  1. 12.For my situation (surgery), which of the standard options do you recommend and why?
  2. 13.How do the results of MARS 2 apply to someone like me?
Second line
  1. 14.For my situation (second line), which of the standard options do you recommend and why?
  2. 15.Am I a candidate for Nivolumab, and what side effects should I expect?
Any stage
  1. 16.Are there clinical trials I could join, for example of Antibody-drug conjugates for mesothelioma: why they have failed so far and how they could work?
  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 “No curative treatment for the majority; median survival with the best regimens is about 18 months”. How does that affect my plan?
  5. 20.I read that “Sarcomatoid disease responds poorly to everything except immunotherapy”. How does that affect my plan?

Tests and results to bring

Diagnosis and staging: CT and PET-CT; thoracoscopic biopsy with an immunohistochemistry panel; histology and BAP1/MTAP status recorded because they drive treatment.

Biomarker results to ask for: Histology (epithelioid versus non-epithelioid), BAP1 loss, CDKN2A/MTAP deletion, Mesothelin expression, PD-L1 (not predictive for nivolumab plus ipilimumab).

Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.

The treatments I may be offered

  • Surgery: Not recommended for cure outside trials after MARS 2; talc pleurodesis or an indwelling pleural catheter controls effusion. (MARS 2)
  • First line, non-epithelioid: Nivolumab plus ipilimumab (CheckMate 743). (Nivolumab, Ipilimumab, CheckMate 743)
  • First line, epithelioid: Pembrolizumab with platinum-pemetrexed (KEYNOTE-483), nivolumab plus ipilimumab, or platinum-pemetrexed with or without bevacizumab, by fitness and preference. (Pembrolizumab, Pemetrexed, IND.227 / KEYNOTE-483)
  • Second line: Nivolumab (CONFIRM) if not given first line; chemotherapy rechallenge or gemcitabine or vinorelbine after immunotherapy. (Nivolumab)

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