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 browserWhat I know so far
What is unclear to me
Changes since last time
My questions
20 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 Histology, BAP1 loss, CDKN2A/MTAP deletion, Mesothelin expression, PD-L1), 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?
Diagnosis and staging
- 5.For my situation (diagnosis and staging), which of the standard options do you recommend and why?
First line, non-epithelioid
- 6.For my situation (first line, non-epithelioid), which of the standard options do you recommend and why?
- 7.Am I a candidate for Nivolumab, Ipilimumab, and what side effects should I expect?
- 8.How do the results of CheckMate 743 apply to someone like me?
First line, epithelioid
- 9.For my situation (first line, epithelioid), which of the standard options do you recommend and why?
- 10.Am I a candidate for Pembrolizumab, Pemetrexed, and what side effects should I expect?
- 11.How do the results of IND.227 / KEYNOTE-483 apply to someone like me?
Surgery
- 12.For my situation (surgery), which of the standard options do you recommend and why?
- 13.How do the results of MARS 2 apply to someone like me?
Second line
- 14.For my situation (second line), which of the standard options do you recommend and why?
- 15.Am I a candidate for Nivolumab, and what side effects should I expect?
Any stage
- 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?
- 17.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 18.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 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?
- 20.I read that “Sarcomatoid disease responds poorly to everything except immunotherapy”. How does that affect my plan?
The words I may hear
- Asbestos: A mineral once used everywhere in building, whose fibres lodge in the lung when they are breathed in and cause cancer decades later.
- Malignant pleural effusion: Fluid collecting in the space between the lung and the chest wall because cancer has reached the lining.
- BAP1 loss: BAP1 is a tumour-suppressor gene that mesothelioma, uveal melanoma and clear-cell kidney cancer lose more often than any other; a lost nuclear stain on the biopsy confirms cancer over a benign look-alike in mesothelioma, marks the metastasis-prone half of eye melanomas, and, when inherited, defines a family syndrome of all three.
- CDKN2A/B homozygous deletion: Losing both copies of the CDKN2A/B genes on chromosome 9p21 removes the cell's main brake on division; in an IDH-mutant glioma it alone makes the tumour grade 4, in mesothelioma and melanoma it marks aggressive disease, and the neighbouring MTAP gene usually goes with it, opening a new drug target.
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 browserWhat I was told
Agreed next steps, dates and who to call