A Real Life Accounts of Accessing Clinical Trials

Clinical trials

In 2018 I was diagnosed with secondary breast cancer in my liver, I was 44.

I knew the survival statistics were grim, so decided from the outset, in order to outlive the 2 to 3-year median I’d have to embrace experimental drugs and treatments.

I made this clear during my first oncology appointment, telling my doctor I was keen to sign up for clinical trials right from the start.

Fighting for Palbociclib

Fighting for Ibrance

Under NICE rules, I would not be eligible to receive the medication that I am currently taking for my metastatic breast cancer on the NHS. I have been on my current drug regime since 2017, I am feeling really well, my disease is stable, and my scans are clear.

I began taking Palbociclib over 3 years ago, badgering my Oncologist and accessing it through a free trial set up by Pfizer. The trial was designed to sway NICE into approving the drug for NHS use, despite it’s high price.

The Cancer Postcode Lottery

The cancer postcode lottery

I have been living with secondary breast cancer for 7 years, and am very aware that I’m one of the very lucky ones as the median life expectancy is 2-3 years.  The general public perception of breast cancer is that it’s ‘sorted’ – eg if you get it you will be fine.  But few people realise that when it metastases (spreads) to the organs as mine has, it cannot be cured. It is the biggest killer of women under 50 with over 11,000 women dying of it every year in the UK.  

Aren’t you a bit young to have a pacemaker

Aren’t you a bit young to have a pacemaker

Stage 4 breast cancer with a pacemaker

Most people know someone with a pacemaker, and chances are that person will be elderly. The average age of a first pacemaker implantation in the UK is 72, but pacemakers are actually fitted in people of all ages from newborn babies to the very elderly. I was 39 when I had mine, which was needed as a complication after heart surgery to replace my aortic valve and root.