Appointment sheet
Mismatch repair deficient (MSI-high) pancreatic ductal adenocarcinoma
Prepared with OnCo (onco.cc/prep/msi-high-pdac/). 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
17 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 Mismatch repair protein immunohistochemistryor sequencing-based microsatellite instability testing on every pancreatic cancer, Tumour mutational burden, Germline Lynch syndrome testing when the tumour is deficient, KRAS statusand medullary or colloid histology, CA 19-9 for response monitoring), 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?
Testing
- 5.For my situation (testing), which of the standard options do you recommend and why?
Advanced, first line
- 6.For my situation (advanced, first line), which of the standard options do you recommend and why?
- 7.Am I a candidate for FOLFIRINOX / mFOLFIRINOX, Gemcitabine + nab-paclitaxel, Pembrolizumab, and what side effects should I expect?
Advanced, after chemotherapy
- 8.For my situation (advanced, after chemotherapy), which of the standard options do you recommend and why?
- 9.Am I a candidate for Pembrolizumab, Dostarlimab, and what side effects should I expect?
Resectable
- 10.For my situation (resectable), which of the standard options do you recommend and why?
- 11.Am I a candidate for FOLFIRINOX / mFOLFIRINOX, and what side effects should I expect?
- 12.How do the results of PRODIGE 24 / CCTG PA6 apply to someone like me?
Any stage
- 13.Are there clinical trials I could join, for example of Nivolumab, Ipilimumab, Dostarlimab, Off-the-shelf cancer vaccines?
- 14.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 15.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 16.I read that “Response rates to PD-1 blockade are lower than in colorectal cancer and the reasons are not settled”. How does that affect my plan?
- 17.I read that “Whether checkpoint inhibitors should replace chemotherapy first line is untested in the pancreas”. How does that affect my plan?
The words I may hear
- Neoantigen: A protein fragment created by a tumour mutation that the immune system has never seen before, so it can attack it without harming normal cells.
- Microsatellite-stable (MSS) / mismatch-repair proficient (pMMR): The 'normal' result on the mismatch-repair test: the tumour has intact DNA spell-checking and few mutations.
- Germline vs somatic mutations: Germline mutations are inherited and in every cell; somatic mutations arise in the tumour only.
- Lynch syndrome: Lynch syndrome is the most common inherited cancer syndrome: a faulty mismatch-repair gene raises lifetime bowel cancer risk to 40-80% and also endometrial and other cancers.
- Tumour mutational burden (TMB): How many mutations a tumour has.
- Whipple procedure (pancreaticoduodenectomy): The big operation for cancers of the head of the pancreas: the surgeon removes the pancreatic head, the duodenum, the gallbladder and part of the bile duct, then reconnects everything.
- Microsatellite instability (MSI-H) / mismatch repair deficiency (dMMR): Microsatellite instability is the mark of a broken DNA spell-checker (loss of MLH1, MSH2, MSH6 or PMS2) that leaves thousands of mutations, so the tumour displays abnormal proteins that T cells can recognise.
Tests and results to bring
Biomarker results to ask for: Mismatch repair protein immunohistochemistry (MLH1, MSH2, MSH6, PMS2) or sequencing-based microsatellite instability testing on every pancreatic cancer, Tumour mutational burden (high in most mismatch repair deficient tumours), Germline Lynch syndrome testing when the tumour is deficient, KRAS status (wild-type more often) and medullary or colloid histology, CA 19-9 for response monitoring.
Scans and tests linked to this cancer: Comprehensive genomic profiling, Germline (hereditary) testing.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Resectable: Surgery and adjuvant chemotherapy as for other pancreatic adenocarcinoma; neoadjuvant immunotherapy only in trials. (Whipple procedure (pancreaticoduodenectomy), FOLFIRINOX / mFOLFIRINOX, PRODIGE 24 / CCTG PA6)
- Testing: Mismatch repair immunohistochemistry or microsatellite instability testing for every pancreatic adenocarcinoma at diagnosis, with germline testing for Lynch syndrome when deficient. (Microsatellite instability (MSI-H) / mismatch repair deficiency (dMMR), Lynch syndrome, Germline (hereditary) testing, Tumour mutational burden (TMB))
- Advanced, first line: Chemotherapy as for other pancreatic adenocarcinoma; pembrolizumab first line for patients unfit for chemotherapy or in trials. (FOLFIRINOX / mFOLFIRINOX, Gemcitabine + nab-paclitaxel, Pembrolizumab)
- Advanced, after chemotherapy: Pembrolizumab (tumour-agnostic approval, KEYNOTE-158 pancreatic cohort) or dostarlimab (tumour-agnostic approval for mismatch repair deficient solid tumours). (Pembrolizumab, Dostarlimab, Immune checkpoint inhibitors, PD-1)
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