The LCTC talk to one of our Patient Representatives, Lesley, about her experiences of clinical research after her diagnosis of Cancer.
When I was first diagnosed de novo in 2014 with metastatic breast cancer I was given 2-3 years to live. It was totally devastating news but during this time I made friends with someone who was doing well on a Myeloma trial. I quickly decided that a trial might extend my survival, and would certainly give me hope. With no research background, but feeling determined, I took on clinicaltrials.gov and would send my very patient oncologist list of trials in the UK and Europe that I found there.
In 2015 we found a local trial, and I was scanned for it. Unfortunately the scan revealed I had small brain mets, and I was therefore excluded from it. This is the first challenge for patients trying to access a trial – are you eligible? I then had whole brain radiotherapy and continued my search as I knew I was running out of standard options.
I finally secured the last place on a phase 1 trial at the Beatson, and within a few weeks of starting it knew I was having a very positive response. That was over 5 years ago, and I am still on the trial. I have had some progression in this time that was dealt with by RT and surgery, but I’m on compassionate use access and miraculously, there is no evidence of active cancer in me.
It was good luck, determination and a research focused oncologist who have enabled me to survive well past my ‘sell by’ date by taking part in this trial. I want every other advanced cancer patient to have the same opportunity as I had, but we need to educate patients and review eligibility criteria to make that happen.