To observe the recent International Clinical Trials Day, we Stand Up To Cancer with Kalyan, who took part in our MARIETTA trial after he was diagnosed with testicular cancer and later non-Hodgkin lymphoma, in 2017 when he was 39.
“For a couple of months, I had started to feel extremely tired. I played a lot of sport and something was definitely wrong. I found a lump on my testicles too, and it all started from there. I had some tests and I was diagnosed with an unknown Non-Hodgkin lymphoma and it is also secondary central nervous system lymphoma.” Says Kalyan, who lives in Northwood with wife Lakshmi and their 11 year old son Sid.
Secondary CNS lymphoma is a type of lymphoma that’s spread to the brain and spinal cord – nervous system – after originating elsewhere in the body. As well as being a rare cancer, secondary CNS lymphoma is an aggressive cancer, with relatively low survival rates.
“I had a PET scan which showed a lump in my brain and I was told about the MARIETTA trial straightaway” says Kalyan. “It was a difficult prognosis, but we were determined to get through it.”
The Stand Up To Cancer-funded MARIETTA trial is the largest study focused on patients with secondary CNS lymphoma, involving 24 centres across 4 countries and recruiting a total of 79 patients. In the UK, the trial was managed by Cancer Research UK’s Southampton Clinical Trials Unit.
The results of the study look promising. A total of 49 patients (65%) responded to the treatment in some way, with 37 people going on to have a stem cell transplant. 100% of the patients who had the stem cell transplant had not seen their cancer recur a year after registering onto the trial.
The trial also picked up differences between groups. While the regime was effective to an extent in every sub-group, the most significant results were seen in patients whose CNS disease was discovered at initial lymphoma diagnosis. Within this group, 71% of patients had lived for 2 years without their cancer growing.
For Kalyan, the trial was tough but he’s still cancer free after being discharged in 2018. “I started on chemotherapy and had six rounds in total - three rounds of methotrexate and three rounds of RICE. It was tough and I experienced pain and fatigue. The doctors and nurses were all amazing throughout my treatment – the care I got was amazing. I was on a 21-day cycle and would sometimes stay over at the hospital for a few days before I could go home” says Kalyan. “The chemotherapy finished in January 2018 and I had a stem cell transplant. I found that really difficult and all I wanted to do was sleep. I was bedridden. I was discharged in the February and I was so weak. It was a slow recovery and I had regular checks and scans. I now have an appointment every six months.”
“I was very glad to have been on the trial – the treatment gave my life back to me.”