I was diagnosed at the beginning of September 2024 with Ros1 mutation, I had to undergo surgery to remove fluids from lungs and then I was started on Entrectinib in October. By that point, the cancer had already spread to my liver and bones. After three months on the treatment, my first scan showed a reduction in tumour size, which was really encouraging. I also had Denosunab injections every month for my bones.A later scan picked up some very small nodules that were considered suspicious, but as the treatment seemed to be working overall, I continued with it. Unfortunately, in November 2025, my scan showed that the lesions in my liver had increased significantly. At that stage, my consultant advised that chemotherapy was the only remaining option. However, thanks to a friend who is an oncologist, I learned about a new clinical trial at the Royal Marsden. I was fortunate enough to begin the NVL-520 trial in January 2026.
My first scan in March 2026 showed that the cancer had shrunk again. Without access to this trial, I would likely have been moved to palliative care. I’m sharing this in case it helps others to know that exploring trials and second opinions can open up additional options.
