Caroline Palmer, a mum from Coalville who was diagnosed with a rare form of lymphoma believes she wouldn’t be here today if it wasn’t for a Stand Up To Cancer trial led by Nottingham University Hospitals NHS Trust (NUH) Consultant Haematologist, Professor Chris Fox.
After months of symptoms such as headaches, fatigue and unusual flashing lights , which 50 – year -old Caroline put down to the perimenopause, she was given the devastating news that she had a lesion on her brain caused by primary central nervous system lymphoma (PCNSL) – a type of blood cancer affecting the spinal cord and brain.
Professor Chris Fox, Consultant Haematologist
Caroline said, “When I was diagnosed, I was really scared because I thought I was going to die, and my first thought was for my son who was just 10. We’d waited a long time to become parents, and I just thought, ‘I can’t die, I need to be here for him.’
“I went to my GP who referred me to an ophthalmologist at Coalville Community Hospital and after lots of investigations, he said I needed an MRI scan. Straight after having the MRI, I was told to go to the Leicester Royal Infirmary who showed me the scan, and I could see a white area on my brain which he explained was a lesion. He said he was sending me to see a neurologist at Queen’s Medical Centre (QMC) in Nottingham
“At QMC, I needed an operation to take a biopsy of the lesion on my brain. I was really frightened about the fact they’d be drilling into my head. I didn’t really appreciate that they could be checking for cancer and didn’t want to think that that’s what it could be.
“But when I came out of surgery, I was told I had lymphoma – a type of blood cancer. But even after hearing the news I was thinking, ‘It can’t be that bad’ and was telling myself,’ It’s just a bit of cancer.”
Caroline was then transferred to a special haematology unit at Nottingham City Hospital and that’s where she met Professor Chris Fox who gave Caroline the chance to become the first patient on Stand Up To Cancer’s OptiMATe clinical trial.
Caroline said: “ Professor Fox explained that I had PCNSL and that it was a very aggressive type of cancer that affects the brain and spinal cord and that I would be spending a long time in hospital . This new Stand Up To Cancer clinical trial he was heading up aims to give people with PCNSL a higher chance of going into remission.
“I needed to tell my son before he heard it from anyone else, so I was allowed home for a night to break the news as simply as I could. I told him I wouldn’t be able to see him for a while and ended up not seeing him for 40 days to reduce my risk of infection whilst going through the treatment. ”
30 – 50% of patients who are offered the standard treatment for PCNSL do not survive . Caroline said : “I knew that the standard treatment was unsuccessful for some people and I didn’t want to be in that category, so I agreed to go on the trial to improve my chances of survival and to help anyone in future with the disease.”
The OptiMATe trial was funded by Stand Up To Cancer which takes developments from the lab and accelerates them into new tests and treatments. Prof Chris Fox said: “The aim of the OptiMATe trial is to optimise a treatment regimen ( MATRix ) used on a previous trial to help more people with PCSNL experience long-term remission and survival.
“The MATRix treatment regimen is a combination of chemotherapy drugs, and an immunotherapy treatment called rituximab, followed by a stem cell transplant, but we recognised that the side effects were quite toxic. This meant that some patients weren’t able to make it to through all four treatment cycles to reach their stem cell transplant.
“Often when people are given their first treatment, they are very frail and the risks of serious side-effects are high. With OptiMATe , we hope that by giving less intensive treatment initially and shortening the first phase of treatment, we can reduce the side effects and get more people to the stem cell transplant.
“It can be a difficult concept to believe that giving less treatment could actually lead to better outcomes but this trial is very much about improving ways of delivering effective treatments in a way that both reduces risks of treatment whilst helping more patients to complete the treatment course. We hope this may lead to a greater chance of long-term remission and survival”
Caroline said: “After the first treatment cycle, scans showed the tumour had shrunk significantly which was so encouraging. After the second round, I wasn’t sick, I just became very, very tired and it was at that point that I felt like I had cancer. Then, by the time I’d completed the third round, I was relieved to know there was no fourth round to come as per the MATRix treatment schedule.
Now Caroline is in remission, “ I’m still on the road to recovery but am now really enjoying lots of glimpses of normality. I’m driving again and I’m doing a phased, part-time return to my job as a teacher which is amazing.
“Now I’m building up my physical strength and will be taking part in Stand Up To Cancer’s Sweat Every Day in November Challenge . I want to help raise funds for improved treatments and clinical trials.
“Supporting challenges like this is so important because without this funding and the OptiMATetrial, my life and that of my family would be completely different. When you fundraise and save a life, you do much more than save that person. Cancer affects the patient, their loved ones and in my case, the children I’ve been teaching for over 20 years.
“ I want them to know there’s light at the end the tunnel .”
