GCTs are considered to be very aggressive and usually develop in legs and arms. But her tumor was in the brain so it was extremely rare.
"My tumor came as a surprise to my doctors and they had very little knowledge about it. They deemed it untreatable," Rachael said. "It was pressing against my temporal lobe and I was running out of time."
No Luck with the Surgery"There was no treatment for her situation but we had to try," her oncologist said. Rachael underwent three brain surgeries and FDA-approved infusions but the tumor did not stop growing. She started to show severe symptoms.
"I started to have double vision, epilepsy, speech problems, and severe headaches," Rachael said. "My family and I thought – this was it."
"Her family was devastated as her surgeries had failed," her oncologist said. "And then one day I came to know about a new clinical drug trial and suggested to them."
First Patient for a new Clinical TrialRachael's parents contacted the lead doctor of the trial. After looking at Rachael's case, the doctor agreed. "After plenty of bloodwork, physical examination, and paperwork, we decided that she would be a good candidate for this trial," the trial doctor said. "She was the first person to receive this new drug in the UK."
Rachael and her parents traveled to Birmingham from Edinburgh, every week, to receive the loading dose. This continued for three weeks. Further injections were given once every four weeks for three months.
On the Path to Recovery"After three months, I had a scan. The trial was working," Rachael said. "My tumor had shrunk by 1.4cm. I was hopeful." Another three months later, the tumor had shrunk significantly further. It was stable now.
"She was feeling a lot better after 7 months," the trial doctor said. "Her speech had improved and epilepsy reduced. Her left-side weakness and headaches had also gone."
Rachael is now focussing on her studies and advocating advancements of clinical trials. She volunteers regularly in support of young people and teenagers who have much lower access to clinical trials than children.
"The trial helped me recovered. It saved my life," Rachael said. "Thanks to the clinical trial doctors and their medical research, I have overcome my terminal illness and living my life."