When Carol Clarke was diagnosed with chronic myeloid leukaemia in 2000, she had no idea what her journey would be but she never thought her diagnosis would put her in the media spotlight.
When Carol became unwell at the age of 52, her doctor and a few friends thought it was the start of menopause. She started on hormone replacement therapy but when her symptoms continued, she went back to the doctor.
After two rounds of tests, Carol’s doctor told her he was 99 per cent sure she had leukaemia and a bone marrow biopsy then confirmed it.
I had never had anything majorly wrong with me so it was a big surprise.
As soon as she was diagnosed Carol says things moved quickly and she travelled from her hometown of Rotorua to meet her haematologist in Hamilton. Carol’s haematologist explained that a very exciting clinical trial had just started and that she was possibly eligible to take part.
I didn’t know what all the fuss was about with this particular trial but the excitement of all the haematologists involved made me think I should do it so I said yes straight away.
Carol had to undergo a lot of assessments to ensure she was ft for the trial and was then randomly selected to be one of the first New Zealanders to try the drug Glivec.
Although she had to wait a little longer for treatment to start she wasn’t worried and kept herself busy by continuing to work as much as she could.
Something just told me to wait and do the trial. I guess I didn’t know what I was missing out on so in a way ignorance was bliss!
After six months of taking Glivec, Carol was told she was in remission. It didn’t take long for the media and health community to hear about this new super drug for CML patients and Carol found herself as the ‘face of Glivec’ in New Zealand.
When news of my successful trial hit the Herald I had so many calls from everyone I knew. It felt very overwhelming.
Carol didn’t realise how serious the successful trial really was until her haematologist Peter Browett, who lead the trial in New Zealand explained it was the biggest breakthrough for CML in 25 years.
I think although it wasn’t great I got diagnosed, I was extremely lucky with the timing of it all.
When Carol was diagnosed she was told if her blood cancer was left untreated she would only live for another three to five years. Carol has now been in remission for over fifteen years.
After the success of Carol’s trial and many others, Glivec became a funded CML treatment and is now known as the wonder drug of the 21st century.
Glivec has resulted in dramatic improvements in outcomes and quality of life for CML patients. Patients who are diagnosed with CML can now live long lives living with CML as a chronic illness rather than an unfavourable type of cancer provided they take their regular medicine.
For Carol, taking medication daily has simply become a part of her everyday life.
Even though I have got on with my life, my condition is a huge part of me and it always will be.
Although she has been in remission for many years, Carol is an active member of LBC support groups and says she enjoys sharing her knowledge with other patients.
Carol is often known around her hometown as the go-to woman if anyone needs someone to talk to about a cancer diagnosis.
I’ll never walk away from that part of my life now because it has become a part of who I am.