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Living with cancer· Appointment prep

Appointment sheet: Uveal melanoma

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

Uveal melanoma

Prepared with OnCo (onco.cc/prep/uveal-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

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 GNAQ / GNA11 mutations, BAP1 loss and monosomy 3, SF3B1, EIF1AX, Gene-expression profileand PRAME, HLA-A*02:01), 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?
Primary tumour
  1. 5.For my situation (primary tumour), which of the standard options do you recommend and why?
Surveillance
  1. 6.For my situation (surveillance), which of the standard options do you recommend and why?
Metastatic, HLA-A*02:01-positive
  1. 7.For my situation (metastatic, hla-a*02:01-positive), which of the standard options do you recommend and why?
  2. 8.Am I a candidate for Tebentafusp, and what side effects should I expect?
Metastatic, HLA-A*02:01-negative or liver-dominant
  1. 9.For my situation (metastatic, hla-a*02:01-negative or liver-dominant), which of the standard options do you recommend and why?
  2. 10.Am I a candidate for Melphalan (including hepatic delivery system), Ipilimumab, Nivolumab, and what side effects should I expect?
Any stage
  1. 11.Are there clinical trials I could join, for example of Tebentafusp, Percutaneous hepatic perfusion (chemosaturation), Brenetafusp, Darovasertib?
  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 “Half of patients metastasise with no adjuvant therapy despite accurate prediction”. How does that affect my plan?
  5. 15.I read that “Tebentafusp only for HLA-A*02:01 (about 45% of white patients, fewer elsewhere) and gives few objective responses despite OS benefit”. How does that affect my plan?

The words I may hear

  • HLA-A*02:01 restriction: Some T-cell-receptor drugs only work in people with a particular immune 'tissue type'.
  • Seed and soil hypothesis of metastasis (Paget): Stephen Paget asked in 1889 why breast cancer spread to some organs more than blood flow could explain, and answered that a travelling cancer cell (the seed) grows only where the organ (the soil) suits it.
  • Cytokine release syndrome (CRS): A flood of inflammatory signals when immune cells are activated en masse, causing fever, low blood pressure, and sometimes organ failure.
  • Rare cancers: Rare cancers are those with fewer than about 6 new cases per 100,000 people per year.

Tests and results to bring

Biomarker results to ask for: GNAQ / GNA11 mutations, BAP1 loss and monosomy 3, SF3B1, EIF1AX (lower risk), Gene-expression profile (DecisionDx-UM class 1/2) and PRAME, HLA-A*02:01 (tebentafusp eligibility), Liver MRI surveillance.

Scans and tests linked to this cancer: MRI.

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