In 2006, aged 37 years old. Rob noticed a lump on the back of his head and swollen lymph nodes under his arms and in his groin and he was diagnosed with stage 4 lymphoma. It was a frightening and aggressive cancer diagnosis. Rob endured six rounds of chemotherapy but was in remission after this.

For 15 years, life returned to a version of normal. With regular check-ups under the care of his consultant, Dr Shafeek, Rob lived cancer free. But in 2021, the disease returned. He again noticed swollen lymph nodes, a familiar and unwelcome sign. Another six-month course of chemotherapy followed which he responded well to.

Then, in 2024, Rob relapsed for a second time. This time the symptoms were more deceptive including fatigue, loss of appetite, and a general sense of decline. It took three separate GP visits before Rob was referred back to Dr Shafeek in June.

“The idea of going through another six months of chemo was just too much. I didn’t know if I could face it.”

That’s when the option of a clinical trial was introduced, ZUMA-22, a new study testing the use of CAR-T cell therapy in patients with relapsed lymphoma. Rob had never heard of CAR-T therapy before, and like many people, didn’t know much about clinical trials either. But he was willing to try something new.

“I was open to anything. I wanted something that might give me a longer remission, and honestly, I just didn’t want to go through more chemo.”

What Makes ZUMA-22 Different?

The ZUMA-22 clinical trial is part of a global research programme designed to investigate the use of CAR-T therapy for patients with follicular lymphoma who have relapsed or not responded to standard treatment. CAR-T therapy is already used within the NHS for some forms of blood cancer – like acute lymphoblastic leukaemia and certain types of lymphoma – but ZUMA-22 is exploring its use in broader, more challenging cases.

Unlike chemotherapy, which attacks all rapidly dividing cells (healthy and cancerous alike), CAR-T therapy uses a patient’s own immune system. T-cells are collected from the patient and then genetically modified in a laboratory so they can recognise and attack cancer cells. Once these cells are ready, they are infused back into the patient’s bloodstream, where they multiply and seek out cancer cells with precision.

Standard treatment for someone in Rob’s position would likely involve yet another long course of chemotherapy, possibly followed by high-dose chemo and a stem cell transplant, both of which come with extended recovery times and significant side effects. CAR-T, on the other hand, is a much shorter but highly focused therapy. Though intense, it is delivered in a matter of weeks rather than months.

Rob’s Experience Through the Trial

From June to October 2024, Rob underwent extensive testing to determine whether he was suitable for the trial. PET scans, CT scans, bone marrow biopsies were all part of the process. Once approved, Rob had an apheresis procedure, where his T-cells were extracted and sent off to a specialist lab to be reprogrammed to recognise his specific cancer.

While waiting for his cells to be processed, Rob received bridging treatment, including steroids, to manage his symptoms and stop the cancer progressing. In preparation for the return of his modified cells, Rob was admitted to the Queen Elizabeth Hospital in Birmingham, where he received three days of chemotherapy to deliberately deplete his immune system and make space for the new cells.

On the fourth day, he received his CAR-T infusion. “It was just a small bag of fluid, and it only took ten minutes to go in,” Rob says. “It’s strange, really, how something so small can have such a big impact.”

What followed was a crucial period of monitoring. CAR-T therapy often comes with severe side effects. Patients are warned about the risk of fever, confusion, and other neurological symptoms. “They told me that 90% of patients experience at least some of these side effects,” Rob says. “But luckily, I didn’t have any of them.”

One month after the infusion, Rob had follow-up scans to assess his response.

“I would take CAR-T over chemo any day,” he says. “Chemo is six months of nausea and fatigue. CAR-T was intense, but short. And it feels like it’s actually moving the science forward.”

 

Looking Ahead

Fewer than ten people in the UK were known to be on the ZUMA-22 trial at the time of Rob’s treatment, though it is being run at sites across the world. The trial will follow patients for up to 15 years to assess long-term remission, survival rates, and quality of life.

For Rob, the motivation to share his story is simple. “I want this to become the standard of care. If it works, it means fewer people have to go through endless rounds of chemo. I hope more people get this chance.”

Rob’s experience on ZUMA-22 highlights the life-changing potential of clinical trials, not just for himself, but for the future of cancer treatment.

Rob would like to express his deep gratitude to Dr Shafeek (Worcester) and Dr Maybury (Queen Elizabeth Hospital, Birmingham) for their guidance and expertise throughout. He also extends heartfelt thanks to the clinical nursing team—especially Kirsten and Donna, and to everyone at the QE for their outstanding care and support throughout his trial experience.