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Living with cancer· Appointment prep

Appointment sheet: Mucosal melanoma

One page to bring and write on: your details, the questions for Mucosal melanoma 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

Mucosal melanoma

Prepared with OnCo (onco.cc/prep/mucosal-melanoma/). 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

19 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 mutation or amplification, NRAS mutation, BRAF V600 mutation, SF3B1 mutation, Low tumour mutational burden), 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 disease
  1. 5.For my situation (localised disease), which of the standard options do you recommend and why?
Adjuvant
  1. 6.For my situation (adjuvant), which of the standard options do you recommend and why?
  2. 7.Am I a candidate for Nivolumab, Pembrolizumab, Temozolomide or related drugs, and what side effects should I expect?
Advanced, first line
  1. 8.For my situation (advanced, first line), which of the standard options do you recommend and why?
  2. 9.Am I a candidate for Nivolumab, Ipilimumab, Pembrolizumab or related drugs, and what side effects should I expect?
KIT-mutant disease
  1. 10.For my situation (kit-mutant disease), which of the standard options do you recommend and why?
  2. 11.Am I a candidate for Imatinib, Nilotinib, and what side effects should I expect?
NRAS-mutant disease
  1. 12.For my situation (nras-mutant disease), which of the standard options do you recommend and why?
  2. 13.Am I a candidate for Tunlametinib, Naporafenib, and what side effects should I expect?
  3. 14.How do the results of Comparing Tunlametinib Capsules and Combination Chemotherapy in Advanced NRAS-mutant Melanoma and A Study to Assess Naporafenib (ERAS-254) Administered With Trametinib in Patients With NRAS-mutant Melanoma (SEACRAFT-2) apply to someone like me?
Any stage
  1. 15.Are there clinical trials I could join, for example of Toripalimab, Axitinib, Tunlametinib, Comparing Tunlametinib Capsules and Combination Chemotherapy in Advanced NRAS-mutant Melanoma?
  2. 16.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 17.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 18.I read that “No phase 3 trial has been run specifically in mucosal melanoma outside China”. How does that affect my plan?
  5. 19.I read that “Local control at head and neck and anorectal sites is poor without mutilating surgery”. How does that affect my plan?

The words I may hear

  • Wide local excision: Cutting out a tumour together with a measured rim of normal-looking tissue around it, so that microscopic spread at the edge is removed too.

Tests and results to bring

Biomarker results to ask for: KIT mutation or amplification (exon 11 and 13 predict imatinib response), NRAS mutation, BRAF V600 mutation (uncommon), SF3B1 mutation, Low tumour mutational burden, PD-L1 expression (weakly predictive).

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