Relapse and enrolling on the BEACON study
In August 2020, Peter noticed a lump on his skull. He was scanned and a couple of weeks later the family received the devastating news that he had relapsed. Adding to the devastation, neuroblastoma had spread throughout his body. He had a tumour on his skull, lesions on his pelvis and evidence of disease in his bone marrow, classing his relapse as high-risk and vastly reducing his chances of long-term survival.
He was immediately registered for the BEACON study and was randomised to the treatment arm that treats with chemotherapy only. To begin with, the treatment kept the tumour growth at bay, and he was classed as ‘stable’ but after four cycles of treatment, the tumour began to grow again.
Peter crossed over to the alternative treatment arm of the trial, which combines chemotherapy and immunotherapy and had a further six cycles of treatment. The tumour and pelvic lesions remained stable throughout, and the family received the wonderful news that there was no longer any evidence of disease in his bone marrow.
Next steps and enrolling on the DFMO study
Peter had radiotherapy to his skull tumour, which all went to plan. Following more scans in the Autumn, the family were delighted to be told that Peter's pelvic lesions were no longer MIBG-positive and there were early signs of the radiotherapy having an impact on the skull tumour. At this point, there were no further treatment options available for Peter in the UK unless his disease worsened again, so the family decided to 'wait and watch' until the next set of scans in January. Following the scans, they hoped to access the DFMO study in Charlotte, North Carolina.
Peter spent the Autumn term settling in at high school and taking a much-needed break from treatment and hospital appointments. It was an anxious time though and a relief when scans in January showed further shrinkage of the skull tumour and no progression of disease elsewhere. With these results, the family were able to go ahead with plans to enrol Peter on the DFMO study and they flew out to North Carolina for the first dose of treatment at the end of January 2022. If Peter's disease remains stable or better, he will continue the DFMO study until January 2024 with a further five trips to the US required as part of the trial.