Rachel de Souza

'Research gave me something to cling to'

Date: 29 May 2018

‘Research gave me something to cling to’

It had been over nine months, and Rachel de Souza was at breaking point.

The pain in her upper abdomen was not going away. If anything, it was intensifying.

Various consultations with her GPs had produced just frustration, with only lansoprazole - a medication used to treat acid reflux and stomach ulcers - prescribed.

Rachel’s health was worsening, though she didn’t know why. “I’d go straight to bed after work in terrible pain,” she said. “I’d be curled up in the foetal position with a hot water bottle. I also couldn’t stand up straight. I’d walk bent forwards to try and cope with the abdominal pain.”

It was her daughter, during the college run, who gave her the push she needed to get help urgently.

She told Rachel: “Mum, your skin and eyes are yellow. You need to go back to the doctors.”

Rachel, who lives in Leeds, booked the latest in a series of appointments at the surgery, but this time, she was met with much more urgency than before.

“The receptionist took one look at me and I was straight through to see the GP,” Rachel explained. “I’d had my name called before I’d even sat down.”

Blood test results were, in Rachel’s words, “all over the place”, and she was admitted to St James’s University Hospital in Leeds for treatment the same day.

Further scans showed Rachel’s fears were well-founded. The images picked up multiple tumours all over her internal organs, particularly her pancreas, kidneys, liver and gall bladder. She had advanced diffuse large B-cell non-Hodgkin lymphoma, a cancer which usually originates in the lymph nodes but in Rachel’s case, had spread much further before being picked up as it had originated in the lymph node behind her breastbone and so couldn’t be felt by the GPs.

The situation was so dire that end-of-life, or palliative care, was one treatment pathway being discussed - until she interjected.

“I want to be on a clinical trial,” she said, forcefully. “Please, get me on any trial you can,” she told doctors.

By sheer fortune, Rachel had a background working in research. This would serve her well now.

“I knew about clinical trials from work, but goodness knows what would have happened if I didn’t,” she said.

“I was very determined about being put on a trial if I could be, and it would give me purpose beyond surviving the disease, which I was determined to do.”

She was enrolled onto the REMODL-b trial, supported by Cancer Research UK. This trial is trying to find out if a drug called bortezomib (Velcade) can help to stop diffuse large B cell lymphoma coming back after treatment.

Diffuse large B cell lymphoma (DLBCL) is one of the most common types of high grade non Hodgkin lymphoma. The standard treatment for DLBCL is a combination of chemotherapy and a monoclonal antibody called rituximab. This treatment is called R-CHOP. For many people, it gets rid of the lymphoma cells. But sometimes DLBCL does not go away, or comes back after a period of remission.

Doctors want to see if adding other drugs to the standard treatment will make it work better. They also want to see if they can work out in advance who is most likely to benefit. In this trial, they are looking at a drug called bortezomib, which is a type of biological therapy called a proteasome inhibitor.

The aims of the trial are to find out if R-CHOP and bortezomib is better than R-CHOP alone as the first treatment for diffuse large B cell lymphoma, and see if knowing the genetic sub type can help to show who is most likely to benefit from having bortezomib.

Though Rachel still does not know if she received the drug – some trial participants received the drug and others a placebo - she began to feel better after an intensive chemotherapy regime.

“I was walking across the Leeds Clinical Research Facility one day and a research nurse said to me, ‘Oh Rachel, look at you!’

“I was confused. Then I realised, I was standing up straight! I knew then the chemo must be working.”

There was light at the end of the tunnel after many dark days for Rachel and her family, although the chemotherapy regime left her drained, to say the least.

Having been diagnosed in March 2014, she completed chemotherapy in September of that year. She is still in follow-up for the trial and has clinic appointments every six months to keep a check on her condition. To date, there is no sign of the cancer returning and she is looking forward to celebrating five years cancer free in September 2019.

The 52-year-old, who works in research ethics at the University of Leeds, is back working full-time and is married with four children: a daughter 21, two sons, 31 and 22-years-old and a foster son who is 24.

Rachel credits the research trial with improving her quality of life after she was diagnosed in 2014.

“It gave me something to cling to, which I desperately needed,” she said. “I want to thank Dr Rod Johnson, my Consultant Haematologist at Leeds Teaching Hospitals NHS Trust, and the staff at the NIHR Leeds Clinical Research Facility,” she said. “They were all brilliant and gave me hope.

“During the trial and all through treatment, I had a direct line to a research nurse and, having worked in research before, it was a real eye-opener to be a research patient as well. I felt blessed to have the opportunity to take part in a clinical trial that may benefit other patients in the future.”

And she has firm advice for other people wanting to know more about research trials. “Whatever condition you have, ask about research,” she emphasised. “If your doctor doesn’t know, ask them who will know. As a patient, you need to be confident enough to ask about research”.

“I might not be here today without it.”

The NHS is encouraging people to take part in research as part of its 70th birthday celebrations. For more information on how to get involved in research, go to www.iamresearch.co.uk

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    Leeds woman Rachel De Souza says she "might not be here today" without research.
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