Appointment sheet
Intrahepatic cholangiocarcinoma
Prepared with OnCo (onco.cc/prep/intrahepatic-cholangiocarcinoma/). 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
25 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 FGFR2 fusions and rearrangements, IDH1 mutation, BAP1, ARID1A and PBRM1, HER2, BRAF V600E, NRG1 and microsatellite instability, CA 19-9 for 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?
Diagnosis
- 5.For my situation (diagnosis), which of the standard options do you recommend and why?
Resectable
- 6.For my situation (resectable), which of the standard options do you recommend and why?
- 7.Am I a candidate for Capecitabine, and what side effects should I expect?
- 8.How do the results of BILCAP apply to someone like me?
Unresectable, liver-confined
- 9.For my situation (unresectable, liver-confined), which of the standard options do you recommend and why?
Advanced, first line
- 10.For my situation (advanced, first line), which of the standard options do you recommend and why?
- 11.Am I a candidate for Gemcitabine + cisplatin, Durvalumab, Pembrolizumab, and what side effects should I expect?
- 12.How do the results of TOPAZ-1 and KEYNOTE-966 apply to someone like me?
Advanced, FGFR2 fusion after chemotherapy
- 13.For my situation (advanced, fgfr2 fusion after chemotherapy), which of the standard options do you recommend and why?
- 14.Am I a candidate for Pemigatinib, Futibatinib, and what side effects should I expect?
- 15.How do the results of FIGHT-202 and FOENIX-CCA2 apply to someone like me?
Advanced, IDH1 mutation after chemotherapy
- 16.For my situation (advanced, idh1 mutation after chemotherapy), which of the standard options do you recommend and why?
- 17.Am I a candidate for Ivosidenib, and what side effects should I expect?
- 18.How do the results of ClarIDHy apply to someone like me?
Second line without a target
- 19.For my situation (second line without a target), which of the standard options do you recommend and why?
- 20.Am I a candidate for FOLFOX (5-FU, leucovorin, oxaliplatin), and what side effects should I expect?
Any stage
- 21.Are there clinical trials I could join, for example of Tinengotinib, FIRST-308, ctDNA-guided switching among FGFR inhibitors, Liquid biopsy (ctDNA)?
- 22.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 23.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 24.I read that “Most patients present unresectable, and recurrence after resection is common”. How does that affect my plan?
- 25.I read that “FGFR inhibitor resistance develops within a year through kinase domain mutations”. How does that affect my plan?
The words I may hear
- FGFR2 fusions and rearrangements: A broken-and-rejoined FGFR2 gene that drives about one in eight intrahepatic bile duct cancers and can be switched off with pills.
- Next-generation sequencing (NGS): Reading millions of DNA fragments in parallel, the engine behind every modern genomic test.
- Lymphadenectomy (lymph node dissection): Surgically removing the lymph nodes that drain a tumour, both to stage the cancer and to clear any spread.
- Hepatectomy (liver resection): Cutting out the part of the liver containing tumour.
Tests and results to bring
Diagnosis: Contrast MRI and CT, biopsy, and comprehensive genomic profiling including RNA-based fusion detection for every patient.
Biomarker results to ask for: FGFR2 fusions and rearrangements (RNA or DNA sequencing), IDH1 mutation, BAP1, ARID1A and PBRM1 (small-duct type), HER2, BRAF V600E, NRG1 and microsatellite instability (less common), CA 19-9 for monitoring, Circulating tumour DNA for resistance mutations under FGFR inhibition.
Scans and tests linked to this cancer: Comprehensive genomic profiling, CT (computed tomography), Liquid biopsy (ctDNA), MRI.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Resectable: Hepatectomy with lymph node dissection followed by six months of adjuvant capecitabine (BILCAP). (Hepatectomy (liver resection), Lymphadenectomy (lymph node dissection), BILCAP, Capecitabine)
- Unresectable, liver-confined: Radioembolisation, stereotactic radiotherapy or hepatic artery infusion in specialised centres, usually with systemic therapy; liver transplantation in trials. (Radioembolisation (TARE / SIRT, yttrium-90), SBRT / SABR (stereotactic radiotherapy), Liver transplantation for cancer (Milan criteria and beyond))
- Advanced, first line: Gemcitabine and cisplatin with durvalumab (TOPAZ-1) or pembrolizumab (KEYNOTE-966). (TOPAZ-1, KEYNOTE-966, ABC-02, Gemcitabine + cisplatin, Durvalumab, Pembrolizumab, Gemcitabine-cisplatin + PD-(L)1 blockade in biliary cancer)
- Advanced, FGFR2 fusion after chemotherapy: Pemigatinib (FIGHT-202) or futibatinib (FOENIX-CCA2); management of hyperphosphataemia and eye toxicity. (Pemigatinib, Futibatinib, FIGHT-202, FOENIX-CCA2, FGFR2, FGFR2 fusions and rearrangements)
- Advanced, IDH1 mutation after chemotherapy: Ivosidenib (ClarIDHy). (Ivosidenib, ClarIDHy, IDH1 / IDH2)
- Second line without a target: FOLFOX (ABC-06); trials. (FOLFOX (5-FU, leucovorin, oxaliplatin), Cytotoxic chemotherapy)
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