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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. Merkel cell carcinoma is a rare, fast-growing skin cancer, usually caused by a common virus (Merkel cell polyomavirus) or by sun damage. Once it had spread there was no treatment that worked; PD-1/PD-L1 immunotherapy now gives lasting responses in about half of patients. Sections appear only where the record has something to say. Orientation, not medical advice.
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.
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.
ADMEC-O randomised 179 patients with completely resected Merkel cell carcinoma 2 to 1 to a year of nivolumab or to observation. Disease-free survival was 85 per cent at 12 months and 84 per cent at 24 with nivolumab against 77 and 73 per cent with observation, a hazard ratio of 0.58 whose 95 per cent confidence interval, 0.30 to 1.12, crosses one; the authors state it as an absolute risk reduction of 9 and 10 percentage points. Grade 3 or 4 adverse events occurred in 42 per cent against 11 per cent. Overall survival had ten events against six in a group half the size and is not mature. This is a phase 2 signal in a rare disease, not a proven standard, and the randomised phase 3 that would settle it, STAMP, has not reported.
Lymphadenectomy and/or nodal radiotherapy; neoadjuvant nivolumab (CheckMate 358) produced pathological complete responses in about half.
Avelumab, pembrolizumab or retifanlimab; ~50% response with most responses durable.
Avelumab, pembrolizumab and retifanlimab are all approved and none has been compared with another. First-line response was 39.7 per cent with avelumab in 116 patients, 56 per cent with pembrolizumab in 50 and 54.5 per cent with retifanlimab in 101. The retifanlimab study is the most fully reported: 17.8 per cent complete responses, median duration of response not reached in complete responders and 25.3 months in partial responders, median progression-free survival 16.0 months, and 63 per cent of patients alive at three years, in a disease where chemotherapy responses were measured in months. Grade 3 immune-related adverse events occurred in 10.9 per cent. Which antibody is used matters far less than that roughly half of patients respond and most responders keep responding.
NICE technology appraisal TA691 recommendation 1.1 recommends avelumab for metastatic Merkel cell carcinoma in adults who have not had chemotherapy for metastatic disease, under a commercial arrangement, on evidence collected in the Cancer Drugs Fund under TA517. TA517 recommendation 1.1 continues to cover its use after one or more lines of chemotherapy. Pembrolizumab and retifanlimab have no NICE appraisal for this disease.
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.
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.
Much of what helps in the first weeks is free if you know to ask: testing, helplines, rides and lodging, second opinions, trial travel.
Every term links to the glossary.