Frank Dowling was told he told he would be dead by last Christmas due to the pervasiveness of his cancer. But in a clinical trial his cancer was reduced by 90% and he is due to start a college course, writes Noel Baker.
TWO different days this week give a good insight into two very different avenues in Frank Dowling’s life at the moment — a life he thought would be extinguished just a year ago.
On Wednesday the 63-year-old graphic designer enjoyed an induction day at University College Cork, where he is shortly to begin a four-year architecture course. According to his wife, Gail, he had a swim in the morning and was due to paint a wall in the garden.
Yesterday Frank, from Glanmire near Cork City, attended treatment in hospital, a trip he makes every two weeks and during which the cancer drug nivolumab is given intravenously as part of a two-year clinical trial.
A year ago Frank was not expected to be around for Christmas, but the drug treatment has reduced his cancer by 90%. Last May, nivolumab and another cancer drug, pembrolizumab, became national news when oncologists criticised delays in funding the treatments and warned patients could die if the drugs were not made available.
The HSE had said that due to the high cost of the drugs, they needed to be assessed to determine value for money and patient benefits, and given the costs, a decision on whether to acquire those drugs would have to be approved by government departments.
There was much hand-wringing, particularly given the closure of a compassionate access scheme to the medicines for new patients. As of yesterday, the assessment process was still ongoing, while discussions on the broader issue of the cost of medicines rumbles on in the background.
Frank, a father of two sets of grown-up twins, believes he is living testimony as to the potential benefits of the drugs. In fact, he fully believes he would have died many months ago had it not been for the chance to try nivolumab.
In January last year, he was a fit, hill-walking male complaining of pains in his groin. His wife freely admits to joking about man flu — but it wasn’t man flu.
A massive tumour was detected on one of Frank’s kidneys on January 21 last year, his father’s birthday. Within days, the family were told the cancer had spread to Frank’s lungs. They were told to make the most of the time he had left.
Since the chemotherapy or operation options were out “he wouldn’t have got off the table”, Gail says.
Frank began treatment with two conventional drugs. They made no impact, and the cancer had spread to the liver. “By the end of August the whole thing was falling apart,” Gail says. “He had ferocious nausea, he was vomiting his brains out morning, noon and night.”
The family had been in continuing discussions with oncologist Dr Conleth Murphy about the possibility of accessing a new drug, nivolumab, under compassionate access and clinical trial, even though at this stage Frank was dealing with Marymount Hospice. A bed had been assembled downstairs in his home as everyone considered end of life. “I always saw it as a one-way ticket,” Frank says. However, his application was approved, and last October the clinical trial began.
“I was very lucky to get on it and B, I was very lucky when I did get on it that it worked,” he says.
The family celebrated his birthday around Halloween, and Frank was still around come Christmas — “what we thought would be our last Christmas [together]”, Gail says. New Year’s rolled around, and Frank received the results of a scan in the first week of January.
“We were told that the results were phenomenal, the cancer was 50% gone,” Gail recalls. She had noticed that instead of shuffling his feet when moving, Frank had been lifting his heels.
By Easter, Frank drove down to Schull, and another scan showed a further 40% reduction in his cancer. Frank was talking about applying for the architecture course — a complete transformation from just a year before.
Gail says one nurse told her Frank was the first person she had seen discharged from Marymount in 24 years.
Gail says that while her own mother believes Frank’s recovery is “a miracle”, her husband is certainly an outlier. Nivolumab is understood to work for around 25% of those who take it, and in those people the rate of reduction of the cancer is usually nothing like the huge improvements experienced by Frank. He himself says: “It was a slow realisation that it was working.
“I am a bit of a guinea pig,” he says.
“There is a little bit of guilt in being one of the people being treated with nivolu-mab when so many other people out there would welcome the opportunity, but then, there is no reason why it is going to work on them.
“My opinion is that the drug companies should lower their price and come some part of the way to meet the Department of Health, and that the Department of Health has a duty to citizens to come some part of the way on this.”
He says he had a bucket list drawn up in the darkest days but that “we didn’t get very far down it”, and it has since been shelved. The new course is four years but his treatment is due to stop in October next year — a deadline he is conscious of.
At the very least, the Dowlings have stopped fearing the march of time. “We must be optimistic,” Gail says. “We don’t know what tomorrow brings, but we have today.”
“I like to get on with life now,” Frank says. “As I see it, I’ve been given a second shot.”
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