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 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 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.Which subtype is my cancer, and does that change the recommended treatment?
- 4.Is germline (inherited) genetic testing recommended for me or my family?
Localised, resectable
- 5.For my situation (localised, resectable), which of the standard options do you recommend and why?
- 6.Am I a candidate for Imatinib, and what side effects should I expect?
After resection, high risk
- 7.For my situation (after resection, high risk), which of the standard options do you recommend and why?
- 8.Am I a candidate for Imatinib, and what side effects should I expect?
Metastatic, first line
- 9.For my situation (metastatic, first line), which of the standard options do you recommend and why?
- 10.Am I a candidate for Imatinib, and what side effects should I expect?
Progression on imatinib
- 11.For my situation (progression on imatinib), which of the standard options do you recommend and why?
- 12.Am I a candidate for Imatinib, Sunitinib, Regorafenib or related drugs, and what side effects should I expect?
Any stage
- 13.Are there clinical trials I could join, for example of IDRX-42, NB003, Bezuclastinib, Liquid biopsy (ctDNA)?
- 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 “Whether adjuvant imatinib should continue for five years or longer”. How does that affect my plan?
- 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
- GIST risk stratification (mitotic count, size, site; Miettinen and modified NIH criteria): Whether a gastrointestinal stromal tumour will come back after surgery is read from three things on the pathology report, its size, how many cells are dividing in a 5 square millimetre field, and where it started (stomach is safer than small bowel or rectum), plus whether it ruptured; high-risk patients get three years of imatinib and the others get none.
- BAP1 loss: BAP1 is a tumour-suppressor gene that mesothelioma, uveal melanoma and clear-cell kidney cancer lose more often than any other; a lost nuclear stain on the biopsy confirms cancer over a benign look-alike in mesothelioma, marks the metastasis-prone half of eye melanomas, and, when inherited, defines a family syndrome of all three.
- 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
- Localised, resectable: Complete surgical resection without lymphadenectomy; laparoscopic for smaller gastric tumours; neoadjuvant imatinib for large or poorly placed tumours. (Imatinib, Robotic & minimally invasive surgery, KIT)
- After resection, high risk: Three years of adjuvant imatinib 400 mg (SSG XVIII); trials of longer courses. (Imatinib, KIT)
- Metastatic, first line: Imatinib 400 mg continued until progression, with CT response assessment by Choi criteria. (Imatinib, CT (computed tomography), KIT)
- Progression on imatinib: Dose escalation to 800 mg, then sunitinib, regorafenib and ripretinib, ideally guided by the secondary mutation on circulating tumour DNA. (Imatinib, Sunitinib, Regorafenib, Ripretinib, Liquid biopsy (ctDNA), Circulating tumour DNA (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 browserWhat I was told
Agreed next steps, dates and who to call