AN appeal has been launched to encourage people in Northern Ireland to get involved in helping influence cancer research here.
If you are living with or have been affected by cancer, or you are a relative or carer of someone with it, you are being invited to join the Northern Ireland Cancer Research Consumer Forum.
The strategy has been launched by the Northern Ireland Cancer Trials Centre (NICTC), formerly known as the Northern Ireland Cancer Clinical Trials Unit.
Members of the Forum will engage with scientists, doctors and other health care professionals on, for example, research ideas or studies to be undertaken. They will be looking critically – on behalf of other patients – at exactly what the patient experience would be if they were to take part.
They will have an opportunity to influence research and their own experience will help researchers improve the experience for patients who may enter a clinical trial.
The members of the Forum will meet together at least three times a year, and full training and support will be available.
Cancer survivor Margaret Grayson is the first person to take the NICTC up on its offer - diagnosed with breast cancer in 2004, she had a mastectomy, followed by chemotherapy and radiotherapy.
She is now chair of the Forum, and says: “Cancer research is important because it helps find new ways to prevent, diagnose and treat cancer.
“Personally, I have got so much out of being a consumer involved in research, I suppose in part it is my way of giving back for all the care and treatment I receive as a patient.
“Being part of the Northern Ireland Cancer Research Forum affords people, whose lives have been touched by cancer, the opportunity to share their experience, and in partnership with the researchers, actively influence cancer research here in Northern Ireland.
“Each person can bring their own unique experience, so please contact us and find out more about being a consumer involved in cancer research.”
The Northern Ireland Cancer Trials Centre also recently launched its new name, logo and website.
It is a co-ordinating centre for cancer clinical trials in Northern Ireland, based at Belfast City Hospital.
It is a joint project between Queen’s University Belfast and the Belfast Health and Social Care Trust, and its work is funded by the Health and Social Care research and development Division of the NI Public Health Agency, and by the charities Cancer Research UK and the Friends of the Cancer Centre.
Dr Richard Wilson, the Centre’s clinical director, said: “Our patients with cancer who take part in clinical trials are helping us to develop better and safer treatments. They also help us through translational research to identify who is most likely to benefit from a given therapy, and who is most at risk of side-effects.
“This allows us to develop personalized medicine specifically targeted to each individual and their cancer.
“Last year over 1,100 patients in Northern Ireland took part in our clinical trials or other high quality cancer research studies”.
One such patient is Allan Ardies from Bangor, who was diagnosed with malignant melanoma in 2008.
He noticed that a mole on his wrist which, in his own words had been there “forever”, had changed in shape and colour.
“A large black bubble, just like a full stop, had formed on the top”, said Allan and aware of the significance of these changes, he promptly had it checked out and removed in December of that year.
Whilst on holiday in July 2009, Allan found a lump under his left armpit, which was very painful. Further investigation revealed that the cancer had spread and in October he had surgery to remove the lump.
“All was successful and I was ready to be discharged from hospital, when I was told that X-rays taken prior to the anaesthetic revealed something in my lung,” he recalled.
A subsequent PET scan showed other areas of concern – lesions in skin, scalp, eyelids and lip.
“I had never been ill before,” said Allan.
“In fact I never visited my doctor.”
He began chemotherapy in November 2009, following the removal of lymph nodes under his arm.
“I tried to keep my life as normal as possible,” continued Allan. “I would have bloods taken on a Monday, then straight into work, chemo on Tuesday and back to work on Wednesday.
“Strangely I didn’t lose my hair – just my eyebrows!
“There was good news and bad news. Most of the spots on my skin had cleared but my lungs were not clear, so in March 2010 I was given a weekly drug to treat everything.”
Twenty-four cycles of chemotherapy followed and a second scan showed Allan’s lungs were not completely clear and more lesions had appeared on his skin. His body appeared to have become resistant to the drug.
Allan’s oncologist suggested he was referred for a clinical trial and when tests showed he was suitable, he began a trial with a combination of chemotherapy and a molecular targeted drug. This two-pronged attack has been very helpful so far and scans show all skin lesions have gone, but there are some remaining in his lung.
He has now finished his trial therapy and a close check is being kept on Allan every eight weeks. His energy is returning and he remains positive.
“I was told I had a one in 10 chance of this working,” he added.
“I know the cancer has not gone away, but it is under control.
“I am fortunate to have been able to take part in a trial, as it gave me the opportunity to not only help myself, but others who may come behind me.
“I feel I have accomplished something and the nonsense and trivia in life soon pales into insignificance when faced with a cancer diagnosis.”
n If you would like to find out more about getting involved in the Northern Ireland Cancer Research Forum, please get in touch with NICTC. You can find details at the website, www.qub.ac.uk/nictc, or contact Ruth Boyd, Cancer Research UK senior nurse at the NICTC on 028 9026 3903 or e-mail firstname.lastname@example.org.
Information about current clinical trials in Northern Ireland is available on the website at www.qub.ac.uk/nictc