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Living with cancer· Appointment prep

Appointment sheet: KIT exon 11-mutant GIST

One page to bring and write on: your details, the questions for KIT exon 11-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

KIT exon 11-mutant GIST

Prepared with OnCo (onco.cc/prep/gist-kit-exon-11/). 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

17 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 KIT exon 11 mutation type, Mitotic count, size and site, KITand DOG1 immunohistochemistry, Secondary KIT mutations on progression, Imatinib plasma level in poor responders), 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?
  2. 6.Am I a candidate for Imatinib, and what side effects should I expect?
After resection, high risk
  1. 7.For my situation (after resection, high risk), which of the standard options do you recommend and why?
  2. 8.Am I a candidate for Imatinib, and what side effects should I expect?
Metastatic, first line
  1. 9.For my situation (metastatic, first line), which of the standard options do you recommend and why?
  2. 10.Am I a candidate for Imatinib, and what side effects should I expect?
Progression on imatinib
  1. 11.For my situation (progression on imatinib), which of the standard options do you recommend and why?
  2. 12.Am I a candidate for Imatinib, Sunitinib, Regorafenib or related drugs, and what side effects should I expect?
Any stage
  1. 13.Are there clinical trials I could join, for example of IDRX-42, NB003, Bezuclastinib, Liquid biopsy (ctDNA)?
  2. 14.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 15.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 16.I read that “Whether adjuvant imatinib should continue for five years or longer”. How does that affect my plan?
  5. 17.I read that “Resistance through secondary KIT mutations in nearly every metastatic patient”. How does that affect my plan?

The words I may hear

  • Circulating tumour DNA (ctDNA): Circulating tumour DNA (ctDNA) consists of fragments of DNA shed by tumour cells into the blood, detectable with sensitive sequencing.

Tests and results to bring

Biomarker results to ask for: KIT exon 11 mutation type (deletion versus substitution), Mitotic count, size and site (Miettinen risk), KIT (CD117) and DOG1 immunohistochemistry, Secondary KIT mutations on progression (tissue or circulating tumour DNA), Imatinib plasma level in poor responders.

Scans and tests linked to this cancer: CT (computed tomography), 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

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