Sunday 11 December 2016

John Savage on clinical cancer trials: 'People think I'm a guinea pig, but I get very good care during my treatment'

Ireland is at the forefront in carrying out trials on cancer drugs, ensuring that patients are more likely to survive. But cuts in funding threaten our status as a top research centre. Our first report as part of a major seven day series

Published 12/09/2015 | 02:30

John Savage: It was a difficult decision for me - whether to continue with another new treatment but I'm glad I did. I'm glad I'm here.
John Savage: It was a difficult decision for me - whether to continue with another new treatment but I'm glad I did. I'm glad I'm here.
Dr. Ray Mc Dermott , Clinical Lead at ICORG and Consultant Medical Oncologist at St. Vincents Hospital and Tallaght Hospital. Pic Steve Humphreys

Until recently, the hopes of cancer patient John Savage of just staying alive seemed quite remote. Due to renal cell cancer, he has had to have one of his kidneys, and up to half his liver, removed.

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The cancer that started in his kidney eventually spread to his lungs and his hip, and initially he did not respond well to drugs.

The former chef and lecturer, now 67, even had to think about whether he would continue with chemotherapy treatments.

After considering giving up on drugs that could have heavy side effects, he made one last throw of the dice. He agreed to take part in a clinical trial for the new cancer drug Cabozantinib.

Like many new cancer drugs, it is a targeted therapy, aiming to attack the cancer cells without damaging normal tissue.

John took the drug for a few months and then, almost as if by a miracle - and 17 years after he was first diagnosed- the cancer that had been spreading on his lungs was halted, and the tumour even contracted in size.

"I'm in good form and I have a reasonable lifestyle," he tells Review. "I can look after myself, lead an active lifestyle and get around a bit."

The Wexford man is one of the thousands of Irish cancer patients who have been involved in clinical trials of drugs before they are released onto the general market.

Ireland is at the forefront when it comes to carrying out trials on cancer drugs.

According to pharmaceutical companies, it can cost more than €1bn to develop a new medicine, and the trial process can take up to 15 years.

"People think I'm a guinea pig, but I get very good care during my treatment," says John.

Like other patients, he has had to weigh up the risks of taking a treatment that had not been fully tested.

Ultimately, with his cancer spreading, he felt he had little alternative.

The trials on new medicines here have helped to ensure that Irish patients get access to some treatments years before they are available in other countries.

There are 20,000 new cases of cancer in Ireland every year, and the numbers are likely to increase with an ageing population, but increasingly it is no longer a death sentence for patients.

The latest figures show that the majority of patients will survive beyond 10 years and for certain common cancers, such as prostate and breast, the news is much better.

"The research that is going on in Ireland has helped to ensure that the five-year survival rates for cancer in Ireland have gone from 40pc 15 years ago to 60pc now," says Robert O'Connor, head of research at the Irish Cancer Society.

Ireland has been at the forefront in developing immune-stimulating drugs called checkpoint inhibitors, which have revolutionised the treatment of some cancers. The drugs work by activating the body's immune system to kill its renegade cells. One of these drugs, ipilimumab, has had a dramatic effect in increasing survival rates among those with the deadliest forms of skin cancer.

Cabozantinib was the third drug that John took in clinical trials after his cancer came back in 2011. It was a shock for him when his cancer returned in the summer of that year. He had been feeling unwell before the wedding of his son Sean, and he went to the doctor on the day after the wedding. He was told he needed immediate treatment.

"When I went in for an operation I honestly did not think I would come back," he says. His liver operation took 10 hours.

The tumour on his lung which accompanied his liver problem initially did not respond to treatment until he started taking his third drug on clinical trials in 2013. He had tried previous drugs as part of trials, and suffered side effects.

"It was a difficult decision for me to take - whether to continue with another new treatment, but I am glad I did. I am happy to be here."

John's oncologist at St Vincent's Hospital was Dr Ray McDermott, clinical leader of ICORG (the Irish Clinical Oncology Research Group). With the help of consultants such as Professor John Crown, ICORG has been instrumental in attracting clinical trials of some of the most advanced medicines to Ireland.

Dr McDermott says patients have to go through rigorous safety checks before they start the tests.

"You have to do a careful evaluation, because in the early stages you don't what the effects will be."

If it is someone like John, they may be prepared to put up with risks, because their options are limited.

Clinical trials by pharmaceutical companies may carry certain risks but their one big advantage is that patients, insurers and the HSE generally do not have to pay for the drugs.

Dr McDermott predicts that when John's drug Cabozantinib is released in Ireland it could cost between €4,000 and €5,000 per month.

There are real concerns among many oncologists that the cost of some of the newer drugs are becoming unsustainable.

Dr McDermott also warns that there is a threat to the quality of research in this country from government cutbacks. The drugs companies pay for much of the research carried out by ICORG and there is also a grant from the Irish Cancer Society, but 50pc comes from the State through the Health Research Board.

"The plan is to cut our funding by 20 pc, and I would be extremely concerned that we'll not be able to maintain our research at the same level," says the oncologist. "It is good to get funding from industry, but there are other types of research on the management of patients that are also crucial."

Alleviating the effects of cancer is not all about drugs. Using funds from its Movember appeal, where men grow moustaches to raise money, researchers will carry out a study into the effects of exercise on prostate cancer patients.

"There is good evidence that men with advanced prostate cancer who go on exercise programmes certainly feel better and survive longer," says Dr Stephen Finn, a cancer scientist at Trinity College. "As part of the Movember appeal there will be trials to see the effect of exercise.

"The evidence suggests that it has to be mixed type of exercise. By doing exercise you change hormones in the body. Some of those hormones drive cancer."

While prostate cancer survival rates have soared to over 90pc, great strides have also been made in screening and treatment of breast cancer since the 1990s. This week it was reported that new research into the breast cancer drug Copanlisib, funded by the Irish Cancer Society, is to take place in Ireland. When used with other therapies, it acts as a signal blocker that may halt the spread of the disease.

Irish researchers played a key role in studying the effectiveness of Oncotype DX test, which helps women diagnosed with breast cancer avoid unnecessary chemotherapy. The test works by analysing a woman's genes, and gauging whether she needs the aggressive treatment.

Increasingly, scientists are studying the genetic sequences of patients. With this knowledge they are able to work out which drugs work for each individual.

Robert O'Connor of the Irish Cancer Society says the way in which scientists see cancer has changed dramatically.

"Cancer is becoming a large collection of rare diseases rather than a small number of conditions with one-size-fits- all treatments. Individualisation and personalisation are the buzz terms in the field at the moment."

While Irish treatment is at the cutting edge for certain types of cancer, particularly breast, prostate and melanoma, there is room for improvement in other areas.

"We are lagging behind in treatment of other types such as pancreatic and oesophageal cancer," says Dr Ray McDermott.

There are also some shocking inequalities in terms of the cancer's impact on different social groups.

"In some less well-off areas death rates are three times higher than in richer areas," says O'Connor.

Depending on which area they live in, patients can also wait up to a year for a colonoscopy - a test for bowel cancer.

As a patient who has done clinical trials, John is constantly monitored with tests and scans to see what the effect of his treatment is.

He has no doubt at all that the treatment has helped to save his life.

"I also hope that the trials will help others who take the drugs in the future."

The Irish Cancer Society and Trinity College Dublin have teamed up to host Cancer Week Ireland, which runs from next Monday until Sunday. Full details of programme at www.cancerweek.ie

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