Here are some personal stories from people who have shared their experiences with clinical trials and research.
When I was diagnosed with non-Hodgkin lymphoma, the drug rituximab wasn’t available for a patient’s first line of treatment. However, a worldwide trial was being conducted to compare the outcomes of patients who no longer had active lymphoma after receiving rituximab.
My haematologist suggested I join this trial to get rituximab immediately, rather than wait until my other treatment options had been exhausted.
I got a second opinion from another haematologist and he also recommended the trial. There was a lot of patient information to read, but my brother read it too, which was helpful.
The clinical trials nurse looked after me every time I went in for treatment. I had chemotherapy and then rituximab, and after a few months I went into remission. Then I began the experimental part of the trial.
One group of patients was given a maintenance dose of rituximab and had check-ups every three months. The control group just had check-ups every three months. I was in the control group, so I was observed until the cancer came back. At that point, I came off the trial.
During treatment and for the check-ups, I had to have a physical examination, blood tests and an interview about my general wellbeing. It was good to be monitored so often, especially as I didn’t have to pay for these tests.
It was worthwhile going on the trial because I was able to have the rituximab straightaway. I also felt by participating in the trial I was contributing to finding a cure for this particular cancer.
I got a second opinion from another haematologist.
After I was diagnosed with breast cancer, I asked if there were any clinical trials I could go on. I was told about a trial that was assessing a pain-relieving inhaler for women having a sentinel node biopsy, which was the procedure I needed.
I felt that the trial was low risk and I had the potential to receive some useful extra treatment. It required an overnight stay in hospital to have the biopsy and treatment, and to be monitored. I had to fill out a questionnaire about my emotional and physical wellbeing on the day of the trial and the following day. This gave me something to do and I felt that I was actively participating in my own health care.
The study was blinded and we were randomly assigned to get either the experimental treatment or a placebo. I don’t think I was given the experimental drug, but it was still a positive experience to be involved in the trial.
Podcast for people affected by cancer