POLL: It's a miracle I have my life back ... now I want this drug to help others
ASK Dr Colin Clayton what dominated his thoughts in the days before he started treatment for his cancer, he would have answered: "Early retirement."
Some days he would return home from the morning appointments at the GP surgery and go straight to bed.
Other times, he was so exhausted that his wife, Marcia, would have to ring up her husband's partner at the practice – to tell him Colin could not come in to work.
But, three years after he was first diagnosed with life-threatening blood cancer myelofibrosis, Colin's hospital consultant sent a letter to London to make inquiries about a special drug.
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"It was this promising new treatment called ruxolitinib and I'd never heard of it before," said Colin, 52, of Swanwick.
"So I was in two minds about taking it but I went down to London – this was in July 2012 – to find out more about it.
"I met a professor there called Claire Harrison and she applied to the local cancer drugs fund for me to get the drug – but this was turned down.
"The next step was the central fund but, again, that was turned down. In the end, the manufacturer, Novartis, supplied me with the drug.
"By the time I was on the third dose, I could feel all my vitality coming back to me – it was like it was charging my batteries.
"Ten days later, I was driving to the top of the Derwent Valley and went on an eight-mile walk. At first, I wouldn't let myself believe it was actually working. But it was – and it was a real miracle."
Marcia, 52, said: "When Colin started taking the drug, I got my husband back. It was like he was a new man.
"He'd always been so outgoing and loved bike-riding, hiking and horse-riding. Getting his energy levels back meant he could do all those things again.
"When you have three children and a family life to live, there's so many things you want to do together and it was wonderful we could do them all again."
Although Colin, of Brackendale Road, was never able to get the £43,000-a-year ruxolitinib on the NHS himself, he was still very disappointed by a recommendation from health watchdog National Institute for Health and Clinical Excellence – or NICE.
It said the NHS should not be legally obliged to fund the drug because, while it was "clinically effective", it could not be "considered a cost-effective use of NHS resources".
But Colin has already written a 14-page document which he has sent to NICE, stating exactly why he does not agree with their recommendation.
Colin, who has been told he will be supplied with the drug by Novartis until it no longer benefits him, said: "There are three main symptoms of myelofibrosis – fatigue, itching and having an enlarged spleen. And, to have all these things disappear – and to get your life back – is the most amazing experience.
"To refuse to make ruxolitinib available on the NHS would be to say to everyone with myelofibrosis that their cancer is not worth treating."
Colin – who has children Matthew, 23, Rachael, 22, and Lauren, 18 – was first diagnosed with a blood condition called polycythaemia in 1994.
As a GP at Leabrooks Medical Centre, in Greenhill Lane, he knew this was a precursor to myelofibrosis and was not surprised when he was diagnosed with this in 2009. In 2011, he was also told he had chronic myeloid leukaemia – a cancer of the white blood cells – and is taking other medication for this.
Colin said: "Although I was not surprised to be diagnosed with myelofibrosis, I knew how rare it was. Only 450 people a year are told they have it and, as a GP, I've never seen anyone with the condition professionally.
"At the moment, the only options for people with this condition are bone marrow transplants – which only 1% of people are eligible for – transfusions and antibiotics.
"I don't know another cancer which is untreatable by the health service."
Colin said he had worked out that, if everyone in the country paid 50p a year, the £30 million it raised could pay for ruxolitinib for the 450 people diagnosed with the cancer each year in the UK.
He said: "This is the first effective treatment for myelofibrosis – giving relief of symptoms and a chance of increased longevity. I have no idea how many people in this country are suffering from the condition and not getting very effective treatment.
"But, if I could – for example – have everybody's change from buying a cup of coffee each day for a week – you could soon make up the amount that is needed. I have no idea what my long-term prognosis is and I don't want to know – but I want to fight for others so they can have this wonderful drug."
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