Meet clinical trial participant Diane
Diane sadly passed away earlier this year. She had taken part in a Phase 1 clinical trial.
Here Diane shares her clinical trial experience with us from an interview for International Clinical Trials Day 2016.
Hi Diane, tell me a bit about yourself.
I am a 51-year-old mum of four who has recently retired from Lancashire Constabulary. I became a patient at The Christie in Manchester over 14 years ago when I was diagnosed with breast cancer at the age of 36. It wasn’t unexpected as I had a strong family history of the disease and soon after discovered that it was a genetic fault and I was in fact a BRCA2 carrier.
Why did you go on a clinical trial?
Following intensive surgery, I opted to go on a clinical trial which involved chemotherapy and radiotherapy. I remained cancer free until 2008 when it returned. It was a day I had always dreaded but somehow knew would come, as my cancer was aggressive and I knew from watching my mum struggle, it was going to try and beat me too.
As breast cancer was always part of my family I was always interested in being a part of the research and learning about every aspect of my disease, as it could be a huge game-changer in my family’s future health. Once I had come to terms with the fact that I wasn’t going to be cured, I set about trying to “live” with my particular type of disease. Always thinking about the lack of understanding and choices of treatment my mum was probably faced with, I had to try and find the very best cutting edge treatments that were being trialled.
How did you get onto a clinical trial?
During my treatment I had heard about PARP inhibitors, which had been proven to be effective for my particular type of cancer. I asked my Oncologist if they were available and he couldn’t believe I’d heard about it. He said he would investigate and within a few days I got a phone call telling me The Christie were trialling it and would I like to take part. I was lucky enough to be part of trials involving existing chemotherapy treatments and in September 2010 I embarked on my first Phase 1 Trial for an unlicensed drug. I had done as much homework as possible on my disease and just felt that this was the right treatment for me to try at this time, recognising that I was very lucky to be accepted and that the trial was available to me.
What is it like being on a trial?
I thought it would be scary but in fact it was such a relief, despite the fact that I didn’t know how it was going to effect me, or whether in fact it was going to give me any quality of life. I was so lucky that the trial it did in fact give me 3 years of being able to get on with my busy life with my husband, 4 children and my career.
Being a clinical trials patient has its ups and downs and can be intense at times, but the Phase 1 team are expert at guiding me through and helping me manage side effects, at the same time as gathering all their important data which will form part of future cancer treatments – it’s such a privilege to be part of something that is so much bigger than just me. I continue to marvel at how fast things are moving forward in research, and even though I am a small part of it by trying these new treatments, it gives me hope for the future.
Would you recommend a trial for other patients if it is suitable for them?
I wouldn’t hesitate in recommending a patient to speak to their Oncologist about clinical trials - “you don’t get if you don’t ask” is always my motto. Find out as much as you can about your cancer and then whether there are any trials available. However, you do have to fit certain criteria for each trial so it is never a done deal and you have to be realistic.
It is important to follow strict guidelines with new drugs, but I have always felt in safe hands with the Phase 1 Team “our hospital family”, who will spend as much time as is needed to talk me through every step of the protocol attached to each trial.
What does being on a clinical trial mean to you?
To know that you are contributing towards future cancer treatments that can have far reaching effects on others, gives me such a worthwhile feeling, and of course, I am also keen to invest in my family’s future, as they are all going to be effected by this hereditary disease in years to come. I want the doctors to learn as much as possible about our hereditary disease whilst I am alive, so I am always happy to put myself forward for appropriate drug trials in order for them to do their invaluable work.
Having been a new Phase 1 trial since 2015, I am currently having an 8 week break. I am realistic that there won’t be a cure for me and that I am living with this disease but I have already beaten the odds with my prognosis. I continue to hope that many people in the future will benefit from the knowledge gained from research and clinical trials that I have been so very lucky to be a part of.