Taking part in research gives cancer patients access to the latest treatments and knowledge, says myeloma patient John Bailey.
John, 71, had the option of standard treatment or a research programme when he was diagnosed with myeloma just before Christmas 2015. Myeloma is an incurable cancer in which abnormal plasma cells build up in bone marrow.
The cancer was discovered while he was being treated for meningitis at Salford Royal and he and his partner Cliff had to decide quickly which treatment to choose. Although it was a difficult time for them both, opting for research was straightforward, John said. “I thought it would be better because the experimental drugs were the most up to date ones. The timetable of treatment was also quicker and I liked that better too.”
He started treatment on New Year’s Eve with two sessions of chemotherapy a week for six months before a stem cell transplant last August. Happily, he is now in remission and on a biphosphonate drug to prevent loss of bone mass.
While research has yet to find a cure for myeloma, it has helped to find new treatments and life expectancy for this type of cancer has quadrupled in the last 40 years.
Myeloma’s symptoms can include pain, tiredness, recurring infections, anaemia, kidney damage and bone thinning and weakening. In John’s case, his bones were badly affected but his stamina is gradually improving.
“The better days are more frequent than the bad days now,” he said. “Being part of a trial was extremely beneficial for me. I didn’t know what to expect at all but I sailed through it. I joined it towards the end of the trial, which was testing different combinations of drugs, so I felt it had been fine-tuned. Being diagnosed with cancer is cataclysmic but you have to deal with it and take every day as it comes.”
John, who was headteacher of an inner city primary school, took part in the Myeloma X1 study, which was supported by Cancer Research UK. Recruitment to this study has now ended but your cancer specialist will be able to tell you about other studies which might be appropriate for you.