Joining the ALL-Together-1 Clinical Trial as a Young Adult

At 26, Steve, a musician from Birmingham, was preparing to return to university to complete his Master’s degree. Life was moving forward, but in December 2023, everything changed. He began feeling unwell, experiencing persistent fatigue and severe muscle pain.

Between January and March 2024, Steve visited his GP four times. Initially, doctors suspected minor issues—a pulled muscle or simply sleeping in an awkward position. However, during one of his appointments, blood tests revealed unusual results, though they didn’t raise immediate concern.

On March 29th, everything escalated. Steve experienced intense chest pain and called 999. He was instructed to go to the hospital immediately, where he underwent tests and an X-ray. The results revealed something alarming—a mass on his chest. Further examinations confirmed it was a tumour. Shortly after, he was diagnosed with T-Cell Acute Lymphoblastic Leukaemia.

Steve was recruited onto a clinical trial at Birmingham Centre for Haematology. “When I was diagnosed, I was given the option to join ALL-Together-1 clinical trial” Steve recalls. “I didn’t know much about clinical trials at the time, but I was told the treatment would be slightly different from the standard approach.”

The key difference between the clinical trial treatment and the standard approach lies in the chemotherapy regimen. In the trial, doxorubicin replaces daunorubicin after the induction phase. This adjustment is significant because daunorubicin has been associated with long-term heart complications, whereas doxorubicin is used as an alternative with potentially different risk factors.

Another major change concerns the administration of high-dose methotrexate, one of the most toxic chemotherapy drugs in Steve’s treatment plan. Under standard treatment, methotrexate is given weekly as an outpatient, with the dose gradually increasing based on the patient’s tolerance. However, in the clinical trial, the full dose is administered at once during an inpatient stay, followed by an immediate fluid flush to clear the drug from the system. This approach allows a higher concentration of methotrexate to be delivered while ensuring close monitoring for any adverse reactions.

Additionally, the duration of maintenance therapy differs. In the clinical trial, maintenance therapy for males lasts two years, whereas standard treatment typically extends to three years.

Feeling reassured by the intensive monitoring offered through the trial, Steve chose to proceed. He started his treatment in April 2024.

“The care you receive through a clinical trial, I felt, was more closely monitored,” Steve shares.

Since beginning treatment, Steve has completed five intense rounds of chemotherapy. He is now waiting to start maintenance therapy in April 2025, which will include steroids, monthly chemotherapy, daily chemotherapy tablets, and a lumbar puncture every three months. If all goes to plan, his treatment should conclude in 2027.

“The illness just becomes your life—a full-time job,” he says. “I used to tell people I had cancer, and they immediately thought it was a death sentence.”

One of the most challenging aspects of his journey has been the impact on his identity. “You look in the mirror, and you don’t recognise yourself. My whole identity changed—I put on weight, lost colour in my skin, no energy to do the hobbies I love and lost my hair.”

Another major challenge was navigating cancer as a young adult. “Being 26 with this illness, I was often surrounded by older patients in waiting and treatment rooms. I would overhear difficult conversations between consultants and elderly patients. One patient opposite me had the same blood cancer as me but was told he had just 2-4 weeks to live. Hearing that was terrifying.”

Beyond the physical and emotional challenges, Steve also struggled with the lack of support available for young adults with cancer. “I wanted to connect with people my age who truly understood what I was going through, but I found there weren’t many support networks specifically for young adults,” he explains. Thankfully, the Ella Dawson Foundation has provided invaluable support, offering counselling, one-to-one nutritional advice, and vouchers for weekend breaks to give him a much-needed respite from treatment.

As he enters the next phase of his treatment, Steve is keen to raise awareness of the unique challenges young adults face when diagnosed with cancer and emphasise the importance of research and support services.