The first 60 days: Mucosal melanoma
Mucosal melanoma grows on the moist linings of the nose, mouth, anus or genital tract rather than on sun-exposed skin, so it is found late and carries fewer of the mutations that make skin melanoma visible to the immune system. Immunotherapy helps less often than in skin melanoma; a minority of tumours has a KIT mutation that the pill imatinib can target. Below, week by week, is what OnCo's record of Mucosal melanoma says about the first two months: the order is typical, the timing is yours to ask about. Sections appear only where the record has something to say. Orientation, not medical advice.
What happens now
Staging tests establish exactly what and where the cancer is. Everything else follows from the answers.
Ask which of these were tested and what the results were; see the report reader for what each value means.
These specialties appear in the standard of care for this cancer. In most centres they meet weekly as a tumour board to agree each plan; you can ask when yours was discussed and what was decided.
- PathologistNamed in the standard of care for: KIT-mutant disease.
- SurgeonNamed in the standard of care for: Localised disease.
- Medical oncologistNamed in the standard of care for: Localised disease, Adjuvant, Advanced, first line, KIT-mutant disease and 1 more.
- Clinical oncologist (radiotherapy)Named in the standard of care for: Localised disease, Adjuvant.
A second opinion from a centre that treats many similar cases is normal, not rude; the standard of care tells you what to compare it against.
Each row is a setting from the standard of care, in the order it usually arises. Not all will apply to you; your stage and biomarkers decide which do. The guideline grade, where recorded, says how strong the evidence is.
Wide surgical excision with the least morbid operation that clears margins; postoperative radiotherapy for head and neck and anorectal primaries to improve local control.
Anti-PD-1 antibody as for cutaneous stage III disease by extrapolation; temozolomide-cisplatin chemotherapy is an option in China on a randomised trial.
Nivolumab plus ipilimumab (higher response than nivolumab alone in the pooled analysis) or anti-PD-1 monotherapy; toripalimab with axitinib in China.
Imatinib for exon 11 or 13 mutations after or alongside immunotherapy; nilotinib is an alternative.
Tunlametinib (approved in China) or MEK inhibitor trials; naporafenib with trametinib in the SEACRAFT-2 trial.
Generated from this cancer's standard of care, biomarkers and open problems. Take the group that matches where you are. To tick, add your own and print, open the one-page appointment sheet.
Newly diagnosed
- What is my exact diagnosis, stage, and grade, and which tests established them?Everything else follows from an accurate stage and subtype.
- 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?These results decide eligibility for targeted therapy, immunotherapy, and trials.
- Which subtype is my cancer, and does that change the recommended treatment?Recognised subtypes for this cancer include Sinonasal and oral mucosal melanoma, Anorectal mucosal melanoma, Vulvar and vaginal mucosal melanoma.
- Is germline (inherited) genetic testing recommended for me or my family?Inherited variants can change treatment and matter for relatives.
Localised disease
- For my situation (localised disease), which of the standard options do you recommend and why?Guideline options include: Wide surgical excision with the least morbid operation that clears margins; postoperative radiotherapy for head and neck and anorectal primaries to improve local control.
Adjuvant
- For my situation (adjuvant), which of the standard options do you recommend and why?Guideline options include: Anti-PD-1 antibody as for cutaneous stage III disease by extrapolation; temozolomide-cisplatin chemotherapy is an option in China on a randomised trial.
- Am I a candidate for Nivolumab, Pembrolizumab, Temozolomide or related drugs, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Advanced, first line
- For my situation (advanced, first line), which of the standard options do you recommend and why?Guideline options include: Nivolumab plus ipilimumab (higher response than nivolumab alone in the pooled analysis) or anti-PD-1 monotherapy; toripalimab with axitinib in China.
- Am I a candidate for Nivolumab, Ipilimumab, Pembrolizumab or related drugs, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
KIT-mutant disease
- For my situation (kit-mutant disease), which of the standard options do you recommend and why?Guideline options include: Imatinib for exon 11 or 13 mutations after or alongside immunotherapy; nilotinib is an alternative.
- Am I a candidate for Imatinib, Nilotinib, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
NRAS-mutant disease
- For my situation (nras-mutant disease), which of the standard options do you recommend and why?Guideline options include: Tunlametinib (approved in China) or MEK inhibitor trials; naporafenib with trametinib in the SEACRAFT-2 trial.
- Am I a candidate for Tunlametinib, Naporafenib, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
- 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?Trial populations differ from individual patients; ask how closely you match.
Any stage
- Are there clinical trials I could join, for example of Toripalimab, Axitinib, Tunlametinib, Comparing Tunlametinib Capsules and Combination Chemotherapy in Advanced NRAS-mutant Melanoma?Trials are how the next standard of care is set; asking early keeps options open.
- Would a second opinion at a high-volume centre change anything, and can you help arrange it?Rare or high-stakes decisions benefit from a centre that treats many similar patients.
- What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?Supportive care improves quality of life and helps patients complete treatment.
- I read that “No phase 3 trial has been run specifically in mucosal melanoma outside China”. How does that affect my plan?Open problems are where trials and second opinions matter most.
- I read that “Local control at head and neck and anorectal sites is poor without mutilating surgery”. How does that affect my plan?Open problems are where trials and second opinions matter most.
Trials open now for this cancer in OnCo, largest phase first. Joining a trial is a decision like any other: ask what the comparison arm is, whether a placebo is used, and what happens if you leave. The cancer page searches ClinicalTrials.gov live for more.
- A Study to Assess Naporafenib (ERAS-254) Administered With Trametinib in Patients With NRAS-mutant Melanoma (SEACRAFT-2)Phase 3 · active · NCT06346067A Randomized, Open-label Phase III Study in Patients With Previously Treated Unresectable or Metastatic NRAS Mutant Cutaneous Melanoma Comparing the Combination of Naporafenib + Trametinib to Physician's Choice of Therapy (Dacarbazine, Temozolomide or Trametinib Monotherapy) With a Dose Optimization lead-in [SEACRAFT-2]
- Comparing Tunlametinib Capsules and Combination Chemotherapy in Advanced NRAS-mutant MelanomaPhase 3 · recruiting · NCT06008106Efficacy and Safety of Tunlametinib Capsules Versus Combination Chemotherapy of Investigator's Choice in Advanced NRAS-mutant Melanoma Patients Who Had Previously Received Immunotherapy
Much of what helps in the first weeks is free if you know to ask: testing, helplines, rides and lodging, second opinions, trial travel.
- Mucosal melanoma: the full pageMucosal melanoma grows on the moist linings of the nose, mouth, anus or genital tract rather than on sun-exposed skin, so it is found late and carries fewer of the mutations that make skin melanoma visible to the immune system. Immunotherapy helps less often than in skin melanoma; a minority of tumours has a KIT mutation that the pill imatinib can target.
- One-page appointment sheetYour questions, the words you may hear, what to bring, and space for the answers. Print it.
- Treatment sequencingWhich treatment tends to follow which, line by line.
- NavigatorStandard of care for your stage, what you have tried, and trials near you.
- 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.
Every term links to the glossary.