I was diagnosed with bone marrow cancer (CML). The gold standard treatment for this cancer is a TKI, you don’t have to know what it stands for, but it kills the mutations in your blood.
It was not working very well for me and I was offered a chance to go on a ‘drug trial’. It was a very positive experience for me. The trial was offered to patients who were not responding sufficiently to the standard dose of Glivec (The first up and working TKI). Patients would be given either a double dose of the Glivec or a new second generation TKI called Sprycel.
On starting on the trial I felt very well supported and looked after. I was assigned a trial nurse who gave me plenty of time and communication. My particular drugs trial collapsed, as the dugs company could not recruit enough patients.
I am still on the new drug and it is working very well for me, even though NICE, the NHS drugs governing regime, has not given it the go ahead for patients. My positive experience has spurred me to explain some of the positives and negatives of joining a drugs trial.