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Appointment sheet: Pancreatic ductal adenocarcinoma

One page to bring and write on: your details, the questions for Pancreatic ductal adenocarcinoma 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

Pancreatic ductal adenocarcinoma

Prepared with OnCo (onco.cc/prep/pancreatic/). 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

22 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 KRAS, Germline BRCA/PALB2, MSI, NRG1 fusions, CLDN18.2), 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?
High-risk surveillance
  1. 5.For my situation (high-risk surveillance), which of the standard options do you recommend and why?
Resectable / borderline
  1. 6.For my situation (resectable / borderline), which of the standard options do you recommend and why?
  2. 7.Am I a candidate for FOLFIRINOX / mFOLFIRINOX, and what side effects should I expect?
  3. 8.How do the results of PRODIGE 24 / CCTG PA6 and PREOPANC-1 / PREOPANC-2 apply to someone like me?
Locally advanced unresectable
  1. 9.For my situation (locally advanced unresectable), which of the standard options do you recommend and why?
  2. 10.Am I a candidate for Optune / Optune Pax (TTFields), Gemcitabine + nab-paclitaxel, and what side effects should I expect?
  3. 11.How do the results of PANOVA-3 apply to someone like me?
Metastatic, first line
  1. 12.For my situation (metastatic, first line), which of the standard options do you recommend and why?
  2. 13.Am I a candidate for NALIRIFOX (liposomal irinotecan + oxaliplatin + 5-FU/LV), Zoldonrasib, and what side effects should I expect?
  3. 14.How do the results of NAPOLI 3 and POLO apply to someone like me?
Metastatic, second line
  1. 15.For my situation (metastatic, second line), which of the standard options do you recommend and why?
  2. 16.Am I a candidate for Daraxonrasib, and what side effects should I expect?
  3. 17.How do the results of RASolute 302 apply to someone like me?
Any stage
  1. 18.Are there clinical trials I could join, for example of Daraxonrasib, Autogene cevumeran, Sonesitatug vedotin, FAP-2286 (177Lu / 68Ga)?
  2. 19.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 20.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 21.I read that “Late diagnosis; no screening”. How does that affect my plan?
  5. 22.I read that “Dense stroma blocks drug delivery”. How does that affect my plan?

The words I may hear

  • Hazard ratio (HR): A hazard ratio is a number comparing the rate of bad events in two groups.
  • Desmoplasia (tumour stroma): The dense scar-like tissue that makes up most of a pancreatic tumour, walling off cancer cells from drugs and immune cells.
  • Hot vs cold tumours: 'Hot' tumours are full of immune cells and respond to immunotherapy; 'cold' tumours have kept the immune system out.
  • Mechanical theory: stiffness, pressure and force as causes: Cancer cells feel their surroundings.
  • Cancer cachexia: Severe loss of weight and muscle in advanced cancer that eating more cannot reverse on its own.
  • FOLFOX, FOLFIRI, FOLFIRINOX and CAPOX: The standard chemotherapy recipes for bowel and pancreatic cancer, named from their ingredients: FOL (folinic acid) + F (5-fluorouracil) + OX (oxaliplatin), IRI (irinotecan), or both (FOLFIRINOX).
  • KRAS mutation subtypes (G12C, G12D, G12V): KRAS, the most commonly mutated cancer gene, comes in flavours named by the exact amino acid change.
  • Downstaging and conversion therapy: Using drugs, radiotherapy or embolisation to shrink a cancer from a stage where curative treatment is impossible to one where it is: for example, shrinking liver metastases until they can be cut out, or liver cancer until it fits transplant criteria.
  • Stenting (biliary, oesophageal, airway): Placing a small mesh or plastic tube to hold open a duct or passage that a tumour is squeezing shut, relieving jaundice, swallowing difficulty or breathlessness.
  • Fiducial markers: Tiny gold seeds or electromagnetic beacons placed in or near a tumour so the treatment machine can see exactly where it is each day.

Tests and results to bring

Biomarker results to ask for: KRAS (G12D 40%, G12V 30%, G12R 15%, G12C 1-2%), Germline BRCA/PALB2, MSI (rare), NRG1 fusions (KRAS-wild-type), CLDN18.2, CA19-9, CA 19-9 (prognosis and monitoring), KRAS mutation subtype (G12D/V/R/C; wild-type triggers fusion testing), Germline panel (BRCA1/2, PALB2, ATM, CDKN2A, STK11, Lynch), HRD / platinum sensitivity, GATA6 (classical vs basal-like), ctDNA (KRAS-mutant cfDNA) for MRD and response, FAPI PET avidity (investigational), CLDN18.2 IHC (trials).

Scans and tests linked to this cancer: Companion diagnostics, Comprehensive genomic profiling, DPYD genotyping and DPD phenotyping before fluoropyrimidines, Endoscopic ultrasound and EBUS systems, Germline (hereditary) testing, HRD & BRCA testing.

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