Stage 4 Melanoma Journey and Outcome - Update from previous post
2021 - Initial Diagnosis
Diagnosed with melanoma on my left ankle.
Scans showed it had spread to the lymph nodes in my groin (Stage III melanoma).
Underwent surgery to remove the melanoma and affected lymph nodes.
Started 12 months of adjuvant immunotherapy (Pembrolizumab).
2021-2025 - Cancer Free
Completed immunotherapy.
Regular follow-up appointments and scans showed no evidence of disease.
Remained cancer free for almost five years.
December 2025 - Recurrence
New melanoma deposit found in my left calf.
Underwent surgery to remove the tumour.
Required a skin graft from my thigh.
Recovery complicated by swelling, numbness and persistent lymphatic leakage.
February 2026 - Hospital Admission
Developed severe chest pain and difficulty breathing.
Admitted to hospital.
CT scan showed fluid around my lung and a 7 mm lung nodule.
Initially treated as pleurisy/chest infection with antibiotics and oxygen.
March 2026 - Stage IV Diagnosis
Further investigations confirmed metastatic melanoma.
Diagnosed with Stage IV melanoma.
Cancer identified in:
Lung
Hip/iliac crest
Sternum
Shoulder blade/scapula
Additional bone lesions
A liver lesion was identified later.
March 2026 - Immunotherapy Begins
Started combination immunotherapy with Ipilimumab and Nivolumab.
Planned treatment:
Four induction cycles every three weeks.
Follow-up PET scan.
Maintenance Nivolumab if treatment successful.
March-April 2026 - Severe Immune Response
During treatment I developed significant immune-related side effects, including:
Extreme fatigue
High fevers
Violent rigors
Muscle and joint pain
Nausea and vomiting
Loss of appetite
Insomnia
Dizziness
Dry mouth (xerostomia)
Mouth ulcers
Oral thrush
Visual disturbances
Temperature regulation problems
Following one of my treatments, I became acutely unwell and was admitted to hospital. My oncology team believed I had experienced Cytokine Release Syndrome (CRS**)**, an inflammatory reaction caused by my immune system becoming highly activated in response to immunotherapy. I required hospital treatment and close monitoring until the reaction settled.
May 2026 - Immunotherapy Hepatitis
Routine blood tests showed significantly raised liver function tests.
Diagnosed with immune-mediated hepatitis caused by immunotherapy.
Fourth treatment delayed while my liver recovered.
June 2026 - Fourth Cycle Completed
Liver function improved sufficiently to complete the fourth and final induction cycle.
June 2026 - PET Scan Results
Follow-up PET scan showed a complete metabolic response.
No evidence of active melanoma anywhere in my body.
Although I remain classified as Stage IV because the melanoma had previously spread, there is currently no active cancer visible on PET imaging.
Current Position
Stage IV melanoma with a complete metabolic response.
Ongoing monitoring with blood tests and PET/CT scans.
Managing long-term immunotherapy side effects, particularly dry mouth and fatigue.
I am posting this full journey in the hope that somebody in my position sees it and feels optimistic. Some of the side effects were rough, but from being diagnosed as Stage IV to being given the news of NED makes every side effect worthwhile. With my first child being born next month, I feel genuine joy for the first time in a while. Good luck to everyone. Fuck cancer.