The first 60 days: Merkel cell carcinoma
Merkel cell carcinoma is a rare, fast-growing skin cancer, usually caused by a common virus (Merkel cell polyomavirus) or by sun damage. It was almost untreatable once it spread; PD-1/PD-L1 immunotherapy now gives lasting responses in about half of patients. Below, week by week, is what OnCo's record of Merkel cell carcinoma 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: Localised (stage I-II), Regional nodal disease (stage III).
- SurgeonNamed in the standard of care for: Localised (stage I-II), Regional nodal disease (stage III).
- Medical oncologistNamed in the standard of care for: Localised (stage I-II), Regional nodal disease (stage III), Metastatic, first line, Immunotherapy-refractory.
- Clinical oncologist (radiotherapy)Named in the standard of care for: Localised (stage I-II), Regional nodal disease (stage III), Immunotherapy-refractory.
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 local excision with sentinel node biopsy; adjuvant radiotherapy to the primary site (and nodal basin if node-positive); adjuvant nivolumab supported by ADMEC-O in selected patients.
Lymphadenectomy and/or nodal radiotherapy; neoadjuvant nivolumab (CheckMate 358) produced pathological complete responses in about half.
- 3.Metastatic, first lineNCCN category Category 2A (preferred), NCCN Guidelines: Merkel Cell Carcinoma
Avelumab, pembrolizumab or retifanlimab; ~50% response with most responses durable.
Platinum-etoposide chemotherapy (brief responses), radiotherapy, clinical trials (ipilimumab-nivolumab, T-VEC, adoptive T cells).
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 CK20 perinuclear dot staining; TTF-1 negative, MCPyV large T antigen, MCPyV oncoprotein antibody titre, Sentinel lymph node status, PD-L1), 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 Virus-positive MCC, Virus-negative UV-driven MCC, MCC in immunosuppressed patients.
- Is germline (inherited) genetic testing recommended for me or my family?Inherited variants can change treatment and matter for relatives.
Localised (stage I-II)
- For my situation (localised (stage i-ii)), which of the standard options do you recommend and why?Guideline options include: Wide local excision with sentinel node biopsy; adjuvant radiotherapy to the primary site (and nodal basin if node-positive); adjuvant nivolumab supported by ADMEC-O in selected patients.
- Am I a candidate for Nivolumab, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Regional nodal disease (stage III)
- For my situation (regional nodal disease (stage iii)), which of the standard options do you recommend and why?Guideline options include: Lymphadenectomy and/or nodal radiotherapy; neoadjuvant nivolumab (CheckMate 358) produced pathological complete responses in about half.
- Am I a candidate for Nivolumab, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Metastatic, first line
- For my situation (metastatic, first line), which of the standard options do you recommend and why?Guideline options include: Avelumab, pembrolizumab or retifanlimab; ~50% response with most responses durable.
- Am I a candidate for Avelumab, Pembrolizumab, Retifanlimab, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Immunotherapy-refractory
- For my situation (immunotherapy-refractory), which of the standard options do you recommend and why?Guideline options include: Platinum-etoposide chemotherapy (brief responses), radiotherapy, clinical trials (ipilimumab-nivolumab, T-VEC, adoptive T cells).
- Am I a candidate for Platinum + etoposide (EP / CE), Ipilimumab, Talimogene laherparepvec, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Any stage
- Are there clinical trials I could join, for example of Nivolumab, Retifanlimab, Ipilimumab?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 “Half of patients do not respond to PD-1 blockade and have no effective second line”. How does that affect my plan?Open problems are where trials and second opinions matter most.
- I read that “Immunosuppressed patients: high incidence, poor outcomes, contraindications to immunotherapy”. 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.
- Placebo-Controlled Trial of IFx-Hu2.0 Followed By Pembrolizumab In Checkpoint Inhibitor Naïve Participants With Advanced Or Metastatic Merkel Cell CarPhase 2/3 · recruiting · NCT06947928A Multicenter, Randomized, Double-Blind, Placebo-Controlled Trial of IFx-Hu2.0 as an Adjunctive Therapy to Pembrolizumab in Checkpoint-Inhibitor Naïve Participants With Advanced or Metastatic Merkel Cell Carcinoma
- QUILT-3.055: A Study of Combination Immunotherapies in Patients Who Have Previously Received Treatment With Immune Checkpoint InhibitorsPhase 2 · active · NCT03228667QUILT-3.055: A Phase IIb, Multicohort, Open-Label Study of Combination Immunotherapies in Patients Who Have Previously Received Treatment With PD-1/PD-L1 Immune Checkpoint Inhibitors
- A Study of Pembrolizumab in Japanese Pediatric Participants With Solid Tumors or Lymphomas and Japanese Adult Participants With Merkel Cell Carcinoma (MK-3475-G21/KEYNOTE-G21)Phase 1/2 · recruiting · NCT07302347A Phase I/II Study of Pembrolizumab (MK-3475) in Japanese Pediatric Participants With Specific Solid Tumors or Lymphomas, or in Japanese Adult Participants With Advanced Merkel Cell Carcinoma (KEYNOTE-G21)
- A Study to Investigate Safety of AZD6750 in Adult Participants With Select Advanced or Metastatic Solid TumorsPhase 1/2 · recruiting · NCT07115043A Phase I/II Open-label Dose Escalation and Expansion Study to Evaluate the Safety, Pharmacokinetics, Pharmacodynamics, and Efficacy of AZD6750, a CD8 Guided IL-2 Agent Alone and in Combination With Other Anti-cancer Agents in Participants With Select Advanced or Metastatic Solid Tumors
- BOXR1030 T Cells in Subjects With Advanced GPC3-Positive Solid TumorsPhase 1/2 · active · NCT05120271A First-in-Human, Phase 1/2, Dose Escalation Study of BOXR1030 T Cells in Subjects With Advanced GPC3-Positive Solid Tumors
Much of what helps in the first weeks is free if you know to ask: testing, helplines, rides and lodging, second opinions, trial travel.
- Merkel cell carcinoma: the full pageMerkel cell carcinoma is a rare, fast-growing skin cancer, usually caused by a common virus (Merkel cell polyomavirus) or by sun damage. It was almost untreatable once it spread; PD-1/PD-L1 immunotherapy now gives lasting responses in about half of patients.
- 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.
- Tumour mutational burden (TMB): How many mutations a tumour has.
- Immune-related adverse events (irAEs): Immune-related adverse events (irAEs) are the autoimmune side effects of checkpoint inhibitors: colitis, thyroid problems, rash, hepatitis, pneumonitis.
- Rare cancers: Rare cancers are those with fewer than about 6 new cases per 100,000 people per year.
Every term links to the glossary.