In the final weeks of her life, Dame Deborah James raised almost PS6.8 million for research into new treatments and to spread the word about the disease.
One area in cancer research was particularly important to her: personalised medicine.
Experts believe it is “one the most fundamental breakthroughs made in cancer medicine in recent years.”
This is about providing patients with tailored or individualized care, and not a generic approach to therapy.
This field is making great progress, thanks to advances in genetic testing and an increased understanding of how our bodies defend against cancer.
Although it doesn’t work for everyone, and needs to be refined, personalised cancer medicine has already given some people more years of life.
Sophie Umhofer, a 40-year old woman from Warwickshire who was diagnosed with advanced colon cancer at 36 years of age.
She had just celebrated the birthdays of her children when she spoke to me. It was a significant milestone for her as she hadn’t expected to be alive to celebrate it. Even though she was not there, she had written birthday cards for her children that they could open.
She said that the opportunity to receive personalised medicine made a big difference in her life, and “allowing me to be a mother again.”
Her aggressive bowel cancer had spread to her liver by the time she was diagnosed. She was given only three years to live.
She received conventional treatment, which included surgery to remove the largest amount of tumour possible and chemotherapy to kill any remaining cancer cells.
Sophie claims that chemotherapy which also attacks healthy cells left her feeling “like an eighty-year-old,” too tired and weak for the role of parent she wanted.
It was not working for her and her family after several months.
Sophie’s NHS doctor tried an alternative approach as a last resort. A personalised medicine, originally created to treat skin cancer, was offered by Bristol Myers Squibbs for free.
Sophie said to me, “From what my doctor told me, I shouldn’t be alive right now.” It was like night and morning.
“I felt like a failure as a mother during chemotherapy. I used to drag myself around my house on weekends just to be near my children, and then would fall asleep.
“I reached a stage where I was unsure what the point of being there was.”
She says that she felt energized again after switching to personalised treatment.
“I had some side effects that were difficult. “But now I’m able to be a mom again.”
Sophie’s most recent scans have shown no evidence of active cancer. She will continue to have regular screenings to ensure she is free from the disease.
Ipilimumab (and Nivolumab) were the drugs Sophie received. They are an example of immunotherapy. These drugs, which increase or alter the immune system’s attack on cancer, proved so successful in Sophie and in other patients, that they are now approved for use in the UK for those with advanced bowel and kidney cancers.
A fundamental shift in how cancer is understood is what makes it possible to provide personalized treatment.
In the past, cancer was often viewed as one disease. However, many types of cancers, such as those of the bowel and stomach, were treated in the same way.
The genetics of individual tumors can now be mapped using medical technology – gene sequencing.
Even though they are both affected by the same type of cancer, a person’s tumor can look very different from another’s.
These differences have a significant impact on how cancers behave and respond.
Scientists can use these extra details to help them find new ways to fight cancer, or to choose drugs that are better targeted to each patient’s specific needs.
Genetic tests revealed that Sophie’s cancer was caused by a mutation or change called MSI.
Because of the mutation, her immune system was more aware of the disease than other tumors.
The problem was that it couldn’t attack them on its own.
This led doctors to immunotherapy, a personalized treatment that is now available.
It boosts the body’s immune system to detect, mobilize, and destroy cancer.
Our immune system can struggle to fight cancer because the tumours are constantly outsmarting us.
Sophie’s case was different. The tumour cells had tricked her immune system to treat the cancer cells as normal cells.
Ipilimumab was one of her immunotherapy drugs. It helped her activate special immune cells called T cells through a series of steps.
Nivolumab was then used to remove the “trick” that the cancer cells had created to fool her immune system.
The activated immune cells were then capable of identifying and attacking the cancer cells.
Professor Richard Wilson, a Glasgow University expert and advisor to Bowel Cancer UK, believes that immunotherapy is the most successful form of personalised medicine.
It offers a chance for a cure to a small number of patients who previously had limited options.
It can also help control the disease and give you extra years of life.
A variety of immunotherapies are being tested and refined in the hopes of making them available earlier to treat cancer.
Some people take their own immune cells and “supercharge” them to recognize cancer more clearly. The cells are then returned to the body to fight.
Prof Wilson said that this is the area where money from Dame Deborah could be used.
He stated that he wanted a greater variety of immunotherapies and targeted treatments to treat and cure more types of cancers. And, he added that there should be fewer side effects.
Our ultimate goal is to provide personalized care at every stage of our patients’ cancer journeys.
This would be ideal if it included personalized early detection and prevention.
Prof Wilson believes that genetic testing for cancers can be offered to all patients as a way to achieve this.
It is currently only available in limited circumstances, especially for those with advanced diseases.
Prof Wilson is a researcher for the Experimental Cancer Medicine Centres Network. Some tumours are subject to a panel of 300 gene test or more. This is something that Prof Wilson would love to see become a common practice.
This could lead to personalized prevention, where individuals have their genes mapped in order to determine their risk of developing cancer.
He says that targeted drugs and vaccines could be administered to them in order to prevent the development of cancer.
Although this is something scientists can only hope for, other advancements, such as radiotherapy, chemotherapy, radiotherapy, and imaging, are helping to improve the lives of patients with cancer.
The best thing people can do for now to reduce their chances of getting cancer is to live a healthy life and be aware of any signs that could indicate the disease.
This awareness is an important part of Dame Deborah’s legacy.
Prof Wilson said: “What an incredible job she did, using her illness for others.
“It is an amazing gift she leaves to humanity.”
Graphics by Visual Journalism Team
Deborah James, Dame: The Last Dance
A personal tribute to Dame Deborah James. We hear from her friends, colleagues, and fellow cancer patients following her passing.
You can watch the BBC iPlayer video now.