Clinical trials are the engine of cancer research. Virtually every cancer treatment available to people with cancer today is the direct result of a clinical trial. People with cancer who make an informed decision to participate in a clinical trial provide the gift of information that has helped scientists and doctors develop new ways to slow, halt and prevent cancer.
The following stories highlight the personal experiences of our consumer representatives who have participated in a clinical trial. Each story gives insight as to what their lives have been since completing active treatment and what survivorship means to them. We hope these offer encouragement and support to help patients and their families suffering from blood cancers.
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Travelling through the UK and Europe in November 2006, it was cold as you would expect that time of the year and I picked up a respiratory infection, that to say the least, was persistent. After returning home and multiple packets of antibiotics, which seemed only to take the edge of the infection, a blood test revealed some abnormalities.
I was diagnosed with Acute Myeloid Leukaemia (AML) in the week before Christmas 2006; as a fit and relatively healthy individual this came as a shock. I failed induction chemotherapy and progressed to an Allogenic Bone Marrow Transplant on 5 April 2007 with my brother, my only sibling, as my donor.
Pulmonary Graft versus Host Disease has diminished my lung capacity significantly; long term steroids depleted my muscle tone developed previously from being a daily walker. Other things changed in my life, my ability to work full-time and fatigue like l had never experienced, to mention a few.
Today my efforts are directed to returning to my previous level of fitness through walking and gym, working part-time and most satisfyingly using my Blood Cancer experience in my role as a Consumer Representative to ALLG.
In addition to activities with ALLG, I also work with Cancer Australia, The Leukaemia Foundation, The Alfred Hospital Positive Change for Life Program and Southern Melbourne Integrated Cancer Services (SMICS) as a Consumer Representative.
The contributions I make to the ALLG and each of these organisations are many and varied and are done in the hope that through my experience patients diagnosed with a Blood Cancer travel that well worn path, just a little bit easier.
As a result of my employment l became familiar with reviewing and understanding clinical papers, trials and studies. I have participated in many clinical trials as a patient through my treatment for AML and understand the processes and follow-up required from patients.
The benefits of participating in Clinical Trials are many and varied. Importantly often participation in trials allows patients access to drugs prior to their general availability. The drugs and protocols offered to patients during clinical trials come at no cost and participation in trials for some patients may give them opportunities and hope, that may not have been accessible otherwise. Participation in a Clinical Trial also means regular and careful attention from Health Professionals in addition to the care offered by your own Specialist. Contributing to research today in this way, may also mean saving lives in the future and giving hope to other patients.
All of this would not have been possible without the care I received from my own Specialists, family and friends whose unflinching support during this difficult time, never wavered.
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Prior to my cancer diagnosis, I had not thought much about cancer – why should I? I was invincible, I had reached the prime of life – my career and personal life were fulfilling – I had everything to live for. Then WHAM! I was diagnosed with mantle cell lymphoma a rare form of non hodgkins lymphoma. Before I knew it my whole world had changed. Fortunately for me medical research was my saviour – I was told by medical experts that if I had been diagnosed 12 months earlier I would not be here today. Treatment was a struggle, and even with treatment my median survival didn't look good.
Now 10 years on from stem cell transplantation, with thanks to medical research, new drugs and techniques I have once again reached a point where my life is fulfilling. I have a whole new outlook on life, now with the realisation none of us are invincible – cancer doesn't care who it strikes.
I became involved with the ALLG, because the bottom line is "I owe my life to cancer research". Having travelled the cancer journey, I want to help make the road less bumpy for those who must reluctantly follow. In fact, I want to help improve this critical area of cancer research, so that we can one day wipe out this insidious disease.
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You always remember the date of diagnosis – it is a bit like a birthday – it comes around every year. So, the 2nd December 1999 remains embedded in our lives. I was told that I had Chronic Myeloid Leukaemia.
From a small eye infection which did not respond to anti-biotic cream – so after 2 weeks I had a blood test and bingo, 2 days later found out I had leukaemia. In hindsight, I did have bruising, was very tired (but working in a cafe and catering company) I thought tiredness went with the territory.
A bone marrow extraction confirmed the diagnosis.
The feelings at diagnosis are common for all cancer patients – shock, horror, why me – my wife cried in the arms of the haematologist, we drove to a park and I lost it!! I did not really feel sick and certainly did not look sick! Not overweight, fit healthy, and in fact a bit guilty that I had such a serious disease with little or no symptoms and certainly no visual signs!!
On 1 March 2001 I underwent a Bone Marrow Transplant – my donor was an American woman.
Eleven years on I do feel physically and mentally great, back in the gym, have muscle, am fit and healthy, but I do suffer from some peripheral neuropathy in both feet which affects my balance slightly. But after all that my body has endured, this is "small fry".
As a former cancer patient who underwent a clinical trial I am now a member of an august group of people and it is now my job to promote, engage and encourage access to cancer research and clinical trials.
My goal and focus is to ensure that cancer patients and their families' word is heard and delivered at the highest government level. My other priority is to ensure politicians are aware that a lot more can be done at little or no cost to improve the lot of cancer patients!
I am a committed and passionate advocate for people affected by cancer as a regular speaker at medical conferences and seminars (nationally and overseas) on cancer policy, advocacy, clinical trials and related issues. I contribute to booklets and research papers as an Associate Investigator, edit consumer booklets for the Cancer Council and advise on government policy on cancer, cancer services and the value of consumer involvement.