Niamh was just 15 when she was diagnosed with neuroblastoma – a rare childhood cancer that develops in the nerve tissue. After a period of remission following treatment, she relapsed in 2020 and was referred to The Royal Marsden.
Now 25 years old, Niamh has been receiving treatment on a clinical trial for children, teenagers and young adults for the past three years. The phase 1/2 research trial led by Dr Lynley Marshall through the Oak Paediatric and Adolescent Oncology Drug Development Unit is investigating the use of ALK inhibitors, a type of targeted therapy, for neuroblastoma.
Just two months after starting the trial, Niamh’s scans showed no active cancer cells and she remains stable today.
"In July 2020, during the first lockdown, I felt a lump in my neck. My glands always come up when I am not well, but the lump above my collar bone was hard. I knew it was not right."
"I went for my first appointment at The Royal Marsden in Sutton, and I started my chemotherapy in October."
Taking part in a clinical trial at The Royal Marsden
"After the third or fourth cycle I was told there was a research trial. They told me they were confident they could help me. I just thought, let’s do it."
“Being on this trial at The Royal Marsden has been absolutely life-changing for me. When I was first diagnosed, I had such aggressive treatment which included a stem cell transplant, chemotherapy and radiotherapy, with lots of side effects. I always hoped that if my cancer ever came back, there would be more treatment options available to me."
Receiving the trial drug lorlatinib
“Seeing how far treatment for childhood cancers has progressed over the last 10 years is incredible. The trial drug that I’ve been on since 2020, lorlatinib, has barely any side effects and I’m able to live a completely normal life – working, travelling and spending time with friends and family like any other 25-year-old."
"After two cycles scans showed no active disease. The tumours shrunk, and are technically benign. There is nothing. It is huge – I think for the research team too."
“The trial drug I’m on is a targeted treatment for the specific mutation in my cancer and I was initially taking this alongside receiving regular chemotherapy. Since January 2022, I’ve been able to finish chemotherapy and now just remain on the trial drug alone – taking six tablets a day."
“Incredible” care
“The care I’ve had on the trial is incredible, I feel so well supported and the teams at The Royal Marsden are so encouraging. This treatment has given me my life back. I have regular scans and monitoring and for as long as I’m having stable results I’ll remain on the trial."
“I think knowing that the research team were excited about the trial made me feel really confident. I’m excited to be part of it and hope it is going to help others, and find treatments that are less invasive, because treatment currently for neuroblastoma is currently very difficult.”
"Research trials like the one I’m benefitting from are so important; they give people hope, that not only can their cancer be treated, but they can also live a good quality of life whilst receiving treatment. I’m incredibly grateful to have had the opportunity to join this trial.”
Help us support more people like Niamh
The Royal Marsden Cancer Charity is the largest charitable funder of research at The Royal Marsden. Thanks to our supporters, we can fund pioneering clinical trials, which help improve treatment and care for patients, not just at The Royal Marsden but across the UK and around the world.
Discover more about the ways you can support us.