Treatment so far
Katie Rose went on to access the BEACON trial, which involved six months of antibody treatment and oral chemotherapy and completed this in January 2020.
On the advice of Memorial Sloan Kettering Cancer Center in New York and Katie Rose's treating team in Belfast, the next step was for the family to travel to Barcelona for two cycles of hu3F8 (immunotherapy treatment), to increase the chance of success with the vaccine trial in New York. Katie Rose and her family travelled to Barcelona in September 2020, however after doctors from New York and Barcelona reviewed her scans, they decided Katie Rose would be eligible for the trial in New York without needing hu3F8. The family returned home in October with the plan to travel to America.
Unfortunately, her MIBG scan continued to show one residual spot. Her consultants believed it to be mature (non active) disease that wouldn't require any further treatment but a biopsy of the area was suggested to be sure. The residual spot was confirmed to be 'active' although not particularly aggressive but would require treatment. Katie Rose had 14 radiotherapy sessions which she completed on Christmas eve.
The family returned to Barcelona in February 2021 and started hu3F8 antibody treatment. In April 2021, Katie Rose had completed two cycles of treatment and her scans were all clear of disease. The family were given the news that they had hoped for, that she was now eligible to enrol on the bivalent vaccine clinical trial.
Katie Rose started the trial in May 2021, but sadly, after receiving her fifth vaccine (out of a total of seven) in October reassessment scans showed a new spot of disease, so she was no longer eligible to continue on the trial. Katie Rose returned to school and was keeping well during this time. Further scans in May 2022 showed her disease to be stable and that her disease had not spread, however there was a query over one area of disease so a spinal biopsy was planned. The results confirmed neuroblastoma and scans showed some changes with her disease. After much discussion the next stage of treatment for Katie Rose was chemoimmunotherapy treatment which she started in October 2022.
At the end of April 2023, Katie Rose completed her sixth cycle of chemoimmunotherapy treatment and will soon have reassessment scans to determine next steps.