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Living with cancer· Appointment prep

Appointment sheet: PDGFRA D842V-mutant GIST

One page to bring and write on: your details, the questions for PDGFRA D842V-mutant GIST 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

PDGFRA D842V-mutant GIST

Prepared with OnCo (onco.cc/prep/gist-pdgfra-d842v/). 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

15 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 PDGFRA exon 18 D842V mutation, Weak or absent KITstaining with positive DOG1, Epithelioid histology, Mitotic count and size, Secondary PDGFRA mutations at progression on avapritinib), 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?
Localised, resectable
  1. 5.For my situation (localised, resectable), which of the standard options do you recommend and why?
Advanced, first line
  1. 6.For my situation (advanced, first line), which of the standard options do you recommend and why?
  2. 7.Am I a candidate for Avapritinib, and what side effects should I expect?
Progression on avapritinib
  1. 8.For my situation (progression on avapritinib), which of the standard options do you recommend and why?
  2. 9.Am I a candidate for Regorafenib, and what side effects should I expect?
  3. 10.How do the results of VOYAGER apply to someone like me?
Any stage
  1. 11.Are there clinical trials I could join, for example of Avapritinib, Liquid biopsy (ctDNA), IDRX-42?
  2. 12.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 13.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 14.I read that “No proven therapy after progression on avapritinib”. How does that affect my plan?
  5. 15.I read that “Cognitive side effects limit dose and quality of life for some patients”. How does that affect my plan?

Tests and results to bring

Biomarker results to ask for: PDGFRA exon 18 D842V mutation (defines the subtype and excludes imatinib), Weak or absent KIT (CD117) staining with positive DOG1, Epithelioid histology, Mitotic count and size (risk, though behaviour is often indolent), Secondary PDGFRA mutations at progression on avapritinib.

Scans and tests linked to this cancer: Liquid biopsy (ctDNA).

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

The treatments I may be offered

  • Localised, resectable: Surgical resection; no adjuvant imatinib because the mutation is resistant to it. (Robotic & minimally invasive surgery, PDGFRA)
  • Advanced, first line: Avapritinib 300 mg daily (NAVIGATOR), with monitoring for cognitive effects and bleeding. (Avapritinib, PDGFRA, KIT)
  • Progression on avapritinib: No established therapy; clinical trials, surgery or embolisation for isolated progression; regorafenib and other kinase inhibitors have low activity. (Regorafenib, VOYAGER, Liquid biopsy (ctDNA))

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