My story began about 10 weeks after my 2nd son jay was born. After having constant post-natal problems my doctor referred me for a post-natal ultra sound. It was during that scan that a 7cm tumour was found on my right kidney.
Fortunately for me there was a clinical trial called Sorce running across Europe. This trial compared a drug called Sorafanib against a placebo for 3 years. The hope was it would kill any rogue cancer cells left behind after the surgery. The trial was double blind so my clinician and I didn’t know if I was on the drug or the placebo. It was also randomised and had 3 arms
Placebo only for 3 years
Sorafanib for 1 year and placebo for next 2 years
Sorafanib for 3 years
I met the criteria to go onto the trial and was told all about it by my surgeon. I eagerly agreed to participate and started attending the Beatson Cancer Centre in Glasgow where I was guided through the patient friendly information sheets and met my specialist trial research nurse who would be my main point of contact. It was a big decision to start the trial especially when after surgery I was clear of the cancer. However, I felt prepared for what I was letting myself in for – it was all very transparent.
It was reassuring to know that I had a dedicated nurse, a familiar face, to answer questions and discuss side effects. Continuity was very important for me. During each visit to the clinic I completed a short quality of life questionnaire, and for me this also reinforced the fact that I was part of a study and giving something back to research. I could also claim back any travel expenses I had incurred, although I didn’t as I was just grateful to be on the trial.
Within a few weeks it was obvious that I was definitely on the drug rather than the placebo. Very quickly I started losing my hair (eyebrows and eyelashes as well as body hair) and the pigment of my hair started getting lighter, I had skin rashes, debilitating painful feet (I could only wear crocs, which was upsetting for a 36 year old fashion conscious woman)! I couldn’t venture too far from a toilet and my poor family had to put up with my terrible mood swings!
However I was fully supported by my GP and trial nurse who helped me manage the side effects until it got to a point about 8 months into the trial that my quality of life was starting to suffer, and being at home with a baby and toddler didn’t help things either. It was decided by the consultant that my dosage should be halved.
I wasn’t happy about this decision but I was reminded that the different dosage was part of establish how the drug will work best. On the lower dose I was able to tolerate Sorafinib much better so much so that when the 2nd year started I’m not sure if I was still on the drug or on the placebo arm of the trial.
Placebo or not I found it comforting to know that being on the trial meant that I was still being closely monitored and checked regularly with scans or chest x-rays every 3 months.
I finished the Sorce Trial in January 2014. To participate for me was a ‘no brainer’. We don’t know yet if Sorafanib will be beneficial to treat patients after surgery (the results will be published later in 2016) but the trial allowed me to be pro-active and involved, hopefully I’ve contributed to the advancement of renal cancer research.
Being on the trial gave me such an overwhelming feeling of hope and positivity. It was tough at times but I have no regrets.