Roger talks about his involvement in a clinical trial for primary CNS lymphoma

Roger diagnosed with CNS lymphoma

‘On 7 April 2014 my left arm stopped working. Within a couple of hours it felt fine, but during dinner I suddenly lost the use of my left arm again and dropped my fork. 

My wife Sarah rang 111 for advice and they asked her to get me to hospital straight away. We were only 10 minutes away but I had a kind of seizure on the way. I remained conscious throughout, but my limbs were jerking and I was thrashing around in the front seat of the car. I couldn’t speak and was struggling to swallow. I was aware of what was happening, but couldn’t do anything about it. 

My wife called 999 and tried to keep me calm until the paramedics arrived. I was trying to tell them that I thought I was having a stroke, but my speech was slurred.

At the Emergency Department, I was waiting to be handed over to the stroke nurse when the jerking movements began again.  I was fast-tracked for a CT scan. Shortly afterwards they confirmed that this was not a stroke, but a mass on the brain.  They started me on steroids immediately and painkillers for the headache. I was told I had a malignant brain tumour and would now come under the Neurological Unit. They scheduled surgery with a view to removing the tumour but this was postponed when they realised the original mass had somehow decreased in size. They weren’t sure why this had happened.

They withdrew my steroid medication and scheduled an appointment 4 weeks later to review the situation, but after just 2 weeks I experienced some minor jerking movements again so the steroids were reinstated and I was admitted to the Neurological Unit for a biopsy. The results revealed that it was not a brain tumour, but a primary CNS (central nervous system) lymphoma. This is a rare type of high-grade B-cell non-Hodgkin lymphoma. I was 48 years old.

I was referred to the Oncology Team at my local hospital and saw the doctor the next day. The doctor explained the proposed treatment regime, but said there was a clinical trial at a nearby hospital that I may be eligible for. I felt I had nothing to lose!

I saw the trials team 2 days later and after some medical tests to check my suitability, was accepted onto trial IELSG 32. I was randomised to the group receiving intravenous rituximab, methotrexate, cytarabine and an infusion of thiopeta. The cycles were repeated every 21 days for a total of 4 cycles and my progress monitored after each cycle. I began my chemotherapy on the day that Eleanor Rose, my first granddaughter, was born. I told my wife that I was going to beat this cancer, and take Eleanor to school on her 1st day. It gave me a real focus.

Before treatment started my wife and I had attended a ‘demystifying chemo’ class run by a Lymphoma Nurse Specialist. This had prepared me for how I may feel during treatment, gave us an insight into how chemotherapy affects the immune system and alerted us to the signs of neutropenic sepsis.  The first chemotherapy went well and I came home after 6 days. But on the 10th day I felt flu-like. When my temperature reached 38 degrees, Sarah called the hospital. They advised her to get me to A&E quickly where the IV antibiotics I desperately needed were started immediately. I had to stay in hospital for about a week. This happened after every round of chemotherapy, often involving transfusions of blood or platelets. 

I had my PICC line removed during the first sepsis episode, as there was a possibility that this was the cause of the infection. Unfortunately, I developed a blood clot in my arm where the PICC line had been, and attempts to put another in was unsuccessful due to my veins collapsing, so I had a central ‘Hickman’ line put in before cycle 2.  At least getting dressed was far easier!

Between the third and fourth cycles of chemotherapy, my stem cells were successfully harvested and stored in case I was randomised for the group that would go on to have additional high dose chemotherapy followed by stem cell transplant. I was, however, randomised to the group that had 1 week of targeted radiotherapy and 4 weeks of whole brain radiotherapy.  

A few weeks after the end of treatment, I hit a wall. My consultant had prepared me for this but that didn’t make it any easier. I had no energy or enthusiasm for anything and just wanted to sleep all the time. At the next routine appointment I was re-admitted to hospital for a few days whilst they successfully helped me with the depression.

I had wanted to hear the word ‘cured’, but my doctor explained that because of the nature of the disease, they could not put it in those terms.

At the end of treatment my doctor said I was stable and they were very pleased with how things had gone. I had wanted to hear the word ‘cured’, but my doctor explained that because of the nature of the disease, they could not put it in those terms. They emphasised though that everything was looking positive.

Since finishing treatment, I have had ‘chemo fog’, which means that I get confused occasionally. I also get a little depressed, mainly because I had to surrender my driving licence when I had the seizure and cannot drive until 2 years after the end of treatment which has affected my ability to work. This has put a huge hole in our finances!

I went back to work a year to the day after I was taken ill. Although I am on limited duties it really helps me feel I’m moving forward. I get tired more easily, and tend to go to bed earlier these days, but that could just be down to getting older! 

My wife Sarah has been brilliant. She stresses the importance of taking each day as it comes and reminds me that everyone can have a ‘bad day’ or forget things.  She also says I was hopeless with names when she first met me 30 years ago, so I must stop blaming the cancer treatment!

I try to keep as fit and active as I can and a year after the end of treatment, I completed a 30-mile cycle ride challenge. I have also become a keen gardener which has helped me to regain most of my strength after treatment.

I feel fortunate to have been given the opportunity to take part in the trial. It encouraged me to find out more about my illness, however scared I was at first. I have no doubt that all cancer patients get excellent care, but the trial nurses are always there if I have any questions.

And I am still going to be taking Eleanor to school on her first day in just over 18 months time!’