Cancer patient proud to be part of international research trial

A lymphoma patient says she feels “extremely grateful and lucky” to be part of a clinical trial funded by Stand Up To Cancer.

Caroline Palmer has a rare type of blood cancer. She hopes taking part in the OptiMATe trial will help researchers find better cures for the disease.

Eight hospitals across the UK are open to recruitment. This includes University Hospital Southampton NHS Foundation Trust.

The trial is being run by the Southampton Clinical Trials Unit.

Caroline’s story

Caroline, a 48-year-old teacher, was diagnosed with primary central nervous system lymphoma (PCNSL) earlier this year.

“It was by sheer accident that it was found,” she explained. “I had a bit of a migraine which I thought was due to perimenopause and the fact that I’m a teacher of four and five-year-olds. I went to the optician, and they found I had a slight bleed behind my eye and a swollen optic nerve.”

Caroline was sent for an MRI and staff at the hospital told her she needed to go to A&E.

“I still felt fine because I didn’t think there was anything the matter with me, it was just a bit of a headache. But at midnight that night they came and told me I had a brain lesion.

“I was in hospital for 10 days, having tests from head to toe. I was then told I needed a brain biopsy at a larger hospital.”

Caroline was transferred to an isolation room to keep her from catching anything. It was then that she found out she had PCNSL.

“I’d never heard of it,” she said. “I’d heard of cancer and leukaemia, but I didn’t realise that this was blood cancer. I found out that I was actually very poorly, and I realised that this is a deceitful disease.”

Treating PCNSL

PCNSL is a type of blood cancer that affects the brain. It can be difficult to treat.

The standard treatment is called MATRix. It involves a combination of chemotherapy drugs and an immunotherapy treatment called rituximab, followed by a stem cell transplant.

However, this treatment is unsuccessful in around a third of patients. The OptiMATe trial is investigating if changing the timings and intensity of the drugs could make them more effective.

Following her diagnosis, Caroline was offered the chance to take part.

“My best friend is a nurse and she had already said that if I was offered any sort of clinical trial, I should consider it,” she said.

“The doctors are very open with you about how it will be, and that you will be poorly. And the research nurses are amazing. You can phone any time and get things explained. I was in a better place because I knew what was happening.”

Finding the treatments of the future

Caroline is one of the first six PCNSL patients recruited to the OptiMATe trial in the UK. Her husband Wayne and 10-year-old son Isaac have been with her every step of the way.

“I feel extremely grateful and lucky that I’ve got the opportunity to be on the trial”, Caroline explained. “This disease is horrible, and I want to do anything I can to make it easier for people in the future.”

And Caroline is always taking the positives from her treatment and from being part of the trial. She said:

“It’s been hard, but I’ve got to get through it. I have no choice but to be positive and get on with it.

“I saw Stand Up To Cancer programmes on TV this week with the celebrities sleeping on the side of a mountain and I thought, ‘Wow, I’m part of this!’

“The more people that I can help, the better. What I’ve been through is tough, but hopefully clinical trials will help researchers find faster, better treatments.”

International trial

OptiMATe is an international trial led by a research team in Germany.

The UK lead is Professor Chris Fox, Consultant Haematologist at Nottingham University Hospitals NHS Trust. He said:

“Despite huge advances in treatments for patients with PCNSL in the last few years, there are still many patients whose lymphoma does not respond to, or returns following, current treatment approaches.

“We hope that the OptiMATe trial will be able to provide evidence that this new and optimised treatment strategy can provide an alternative treatment pathway leading to improved survival for patients.”

The UK arm of the trial is funded by just over £1m from Cancer Research UK’s Stand Up To Cancer campaign and is sponsored by Klinikum Stuttgart.