Participants

Chemotherapy/TACTIC clinical trialOn 29 August 2012, I was diagnosed with cholangiocarcinoma, in other words, liver cancer, at the age of 41. I was told by the doctors that I had roughly six to 12 months to live and that I should get my affairs in order.I was like ‘What are you talking about? I’m a non-drinker’. When I was first diagnosed, I was someone who wouldn’t even take a pain killer. The cancer in my liver was initially 10cm x 12cm – the size of a grapefruit. I was in absolute agony. I couldn’t eat. I went from 108kg down to 80kg in about three weeks.

In 2014 I took part in a trial calling for healthy volunteers seeking new ways to tackle lifestyle related health conditions such as Diabetes, Cardiovascular Disease and Obesity.  I found it fascinating and I learned things about my physiology that you normally wouldn’t have access to.  For example my true resting metabolic rate was tested and that was something I was always curious about in terms of managing my weight. The rate wasn’t what I’d fantasised at all, in fact my personal myth was dispelled and a normal metabolic rate was revealed.

After having part of my bowel removed to take out the cancer, I was referred to an oncologist who explained that the standard treatment for my situation was a program of chemotherapy with 12 infusions of the chemicals over a 24 week period.  He gave me a long list of possible side effects to take home and read.

I’m in perfect health – so I signed up as a healthy volunteer to a clinical trial testing an Ebola vaccine.Until recently I was the Chief Executive Officer of the Victorian biotechnology industry association and a passionate advocate for medical research, biotech and clinical trials in Australia.As a spokesperson promoting the value of clinical trials and for years working in companies and organisations undertaking trials, I had no idea of the volunteer experience.  So this year I decided to be a healthy volunteer to deepen my understanding, to personally make a commitment to Australian tri

My current clinical trial is a lifesaver for me.I was diagnosed with Gleason 8 prostate cancer at age 57 in 2003. A radical prostatectomy failed to lower my PSA of 6 even though all scans were clean.Then followed 12 years of continuous Lucrin hormone treatment. My PSA dropped to near zero but then rose again to reach 70 in June 2014. At this time scans finally revealed a tumour in my right pelvic lymph node. At the same time I qualified for a clinical trial involving two new drugs, Enzalutamide and Abiraterone.

I was 32 years old and still breastfeeding my youngest child when I found a lump in my left breast.  Subsequent tests identified the lump as Oestrogen receptor positive Invasive Ductal Carcinoma breast cancer, and my whole world was turned upside down.  After receiving treatment including Lumpectomy surgery, four months of Chemotherapy and 7 weeks of Radiotherapy, I was clear of cancer.  However, being a young woman without a family history of cancer and no lifestyle associated risk factors, although statistically my chances of survival were very good, I still felt that I wasn’t in control

I started as an apprentice plumber.  I know where my exposure was.  As an apprentice, I worked on a lot of housing commission - they were all fibro houses back then.  I renovated over 100 fibro houses at Chester Hill, Greenacre, and Jannali.  I had to cut the fibro sheets with a grinder so we could put the plumbing in the walls.  I was always cutting those sheets.  Even though I wore a mask for what I considered was just nuisance dust, we didn't know it was a danger. I may not have had the mask on all the time. The dust was everywhere.

On 15 March, 2002, I was diagnosed with MS and my world changed immediately.  From being an active physical person all my life, I was on a journey to being physically challenged in the use of my right leg and right hand. My neurologist has treated me with the latest of drugs to delay my progression and in November 2014 told me about a trial for a new drug.  She explained the drug was developed in New Zealand and targets a different set of immune cells, called myeloid cells, than other drugs currently in clinical trials.

I was away visiting family over a long weekend, when I first found a lump in my breast.

I was a young mum at the time and although I knew nothing about breast cancer, deep down I knew something was wrong. I remember feeling the dread and being too scared to even tell my family.

When we arrived back home, I made an appointment to see a doctor and he confirmed all my worst fears.

Since my diagnosis, I have channelled my efforts into becoming a consumer advocate for clinical trials and helping women who face the same anxieties as I did.

At the age of 57 I was diagnosed with Breast Cancer (60mm Grade 3 Invasive Ductal Carcinoma with 2/26 axillary nodes involved – ER++ and HER-2 positive) and underwent a mastectomy. My treatment was to follow the path of thousands of women around Australia – Chemotherapy, Herceptin, Radiotherapy and Hormonal Therapy.  At the time, I felt like Alice in Wonderland; I had fallen down the rabbit hole, but not into a magical world, but onto a personal journey of pain and, at on occasions, mental despair.  Always in the back of my mind was the question “Will it come back – wilI I make it”.It was a