Rachel de Souza

Rachel de SouzaI was 48 when I was diagnosed with stage IV non-Hodgkins lymphoma, after nearly a year of visits to my GP surgery for severe abdominal pain.  It was only when I developed jaundice that I had the tests and scans which revealed the cancer had already spread to many organs.

At the time, I was about to return to the Faculty of Medicine & Health, University of Leeds, after completing a secondment to the National Institute for Health and Care Research (NIHR).  Ironically, I’d much admired their “It’s OK to Ask” campaign which encourages patients to ask about taking part in clinical trials  – I just never thought that I would be one of them.  

With stage IV cancer - when there is no stage V - I knew things looked bleak but I wanted to keep some control over my fate by giving myself every chance possible, so I asked about clinical trials.

I was fortunate as Leeds Clinical Research Facility was running a Cancer Research UK (CRUK) trial called “REMoDL-B”. The trial is trying to find out if the drug bortezomib can help stop cancer returning after chemotherapy in patients with advanced lymphoma.  It’s randomised so that some patients receive the usual chemotherapy treatment and some have chemotherapy and the additional drug.

Within days, I was introduced to the wonderful haematology consultant, Dr Rod Johnson, and I could tell straight away that I was in good hands; he made it clear this was a journey that we would take as a team.

My cancer treatment lasted seven months and I had three-weekly cycles of chemotherapy including injections into my spinal fluid. I also had a drug injection to do myself at home and numerous other drugs to take every day, so taking one extra wasn’t too onerous!    

The standard of medical care you get whether or not you’re on a clinical trial is the same, but you get more monitoring and visit hospital slightly more often.  The research nurses are fantastic and everything was explained to me clearly and openly; I was treated as a person, not just another patient.

I don’t know whether I had the active form of the trial drug or not, but I’ve been in remission for two years and I am back working part-time.  I go to St James’ every six months for follow-up clinics and it’s lovely to see the CRF staff again – they’re like friends now.

The trial is ongoing and I’m keen to read about the overall results, but I’m very proud to have directly contributed to research that may help others with this cancer to survive.