Revealed: How hundreds are being killed by chemo meant to save them (it’s down to a little known side effect which can be avoided with a simple £60 blood test)
- Some genetic disorders mean patients can’t process chemo drug capecitabine
- Dihydropyrimidine dehydrogenase (DPD) means the liver can’t process the drug
- The deficiency is shared by five to eight per cent of the population
For West Sussex farmer Keith Gadd and his family, last year’s Father’s Day, June 18, was an unusually happy one. That April, he had undergone major surgery to remove a sizeable tumour from his bowel, but the operation had been a complete success: scans showed he was cancer-free, and he was rapidly regaining his physical fitness, able to walk miles and shift bales of hay.
He and his daughter Louise, son-in-law Martin and youngest granddaughter Daisy enjoyed a summer picnic on his land near Petworth. Afterwards, he hurried off to meet his wife Pamela and friends from their hiking group for afternoon tea and cakes.
Just over five weeks later, on July 24, 2017, Mr Gadd, 73, was dead – not because of the tumour, but from the side effects of the chemotherapy tablets he was given to reduce the chances of the cancer coming back.
Keith Gadd (far right) died last year from DPD poisoning. He is pictured here from left to right with his son Andrew, granddaughters Daisy and Georgia and Andrew’s girlfriend Lucy
The reason? An otherwise harmless genetic condition meant his liver did not produce an enzyme called dihydropyrimidine dehydrogenase – or DPD – and so could not process the chemo drug, called capecitabine.
His deficiency, shared by five to eight per cent of the population, could have been spotted by a cheap, simple test, but Mr Gadd was never offered it. For him, the tablets, which for most patients have only mild side effects, became a deadly poison.
DPD can help with digestion, but experts say most people with DPD deficiency have no symptoms and would never know – unless they needed capecitabine or 5FU (fluoropyrimidine), an intravenous form of the same drug. These chemotherapy drugs are toxic chemicals which help kill cancer cells, but in most people they are quickly broken down by the liver and excreted. With someone who is DPD-deficient, this doesn’t happen, so even a small dose can have very serious consequences.
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And as our investigation reveals, this means tens of thousands of cancer patients each year are potentially at risk of a ghastly but avoidable death.
Since 2000, under the official Medicines and Healthcare Regulatory Agency ‘Yellow Card’ monitoring system, doctors have filed reports of 871 cases of ‘serious adverse drug reactions’ and 233 fatalities, all caused solely by capecitabine.
Doctors say these figures are likely to be a fraction of the true total.
Now leading cancer specialists, patients, campaign groups – and the coroner who heard the inquest into Mr Gadd’s death – are calling for routine DPD testing.
Keith’s family say he was not warned of the possible threat to his life, and his decline was terrifyingly fast.
He first started taking capecitabine on June 29 last year. Over five days, his health deteriorated before his doctors, at St Richard’s Hospital in Chichester, advised him to stop taking the tablets. Six days later, on July 8 he was readmitted to hospital, and two days after that placed in intensive care in a Portsmouth hospital. Two weeks later, he died.
Keith (pictured) had started taking capecitabine on June 29 last year and after five days using the drug his health deteriorated
‘We had to watch Dad suffer as the drug ate away at him from the inside out,’ says his heartbroken daughter, Louise, 48.
‘Within 12 hours of starting the pills, he had severe nausea. The day after that, he had sores in his throat which were so bad that he couldn’t eat, along with terrible diarrhoea. Later he could barely walk, and found it difficult to breathe.’
Thankfully, Louise says, her father spent the last 15 days of his life in an induced coma, so was protected from the excruciating pain that characterised the earlier stages of his ordeal.
By the time he died, his body was covered in sores, and his eyes were filled with pus.
‘No one should have to see their loved one like that,’ Louise says. ‘The worst thing is, he would probably have lived a long time without this treatment. He was told it would only increase his chances of long-term survival by three per cent.’
With about 42,000 new cases each year, bowel tumours are Britain’s fourth most common cancer, and our second-biggest cancer killer. ‘I would guess between 7,000 and 10,000 patients receive capecitabine for bowel cancer in this country each year,’ says Dr Rob Glynne-Jones, medical adviser to the charity Bowel Cancer UK and a consultant at the Mount Vernon Cancer Centre in Hertfordshire.
Of these, he adds, about one in 200 will die from the side effects of capecitabine pills. Others – including one patient interviewed by this newspaper – develop life-threatening symptoms but survive.
Capecitabine is also prescribed for some breast, stomach, pancreatic and oesophageal cancers. Dr Glynne-Jones says three of his own patients died from taking the drug: ‘I can still see their faces. I do feel quite uncomfortable that we don’t test all patients routinely for DPD deficiency. If you have to have this form of chemotherapy, I would make sure you get tested.’
The test, requiring a single blood sample, is not perfect because it does not spot all cases, but it costs just £60.
Sarah, who has asked The Mail on Sunday not to use her real name, was a healthy 69-year-old when she was diagnosed with a small bowel tumour last year. Treated at a London teaching hospital, she was prescribed simultaneous radiotherapy and capecitabine: for many patients, the drug makes radiotherapy more effective.
Sarah says she was warned there might be side effects – sore hands and feet, possible damage to her bladder and fatigue – but ‘DPD deficiency was not mentioned.’
Sarah was an outpatient, and went back home and started taking three capecitabine pills twice a day on December 4. She recalls: ‘From the second day, I felt extremely sick.’ The following day, she felt nauseous while she was having radiotherapy, and the nurse asked her oncology registrar to reassure her. Sarah’s sister Judith, who accompanied her to many of her appointments and took notes, says: ‘The registrar insisted, “You will not be feeling nausea at this stage. It is psychological, you are worried.” ’
Later, Judith says, it transpired neither the nurse nor the registrar was aware of DPD deficiency.
Sarah continued taking the tablets but her condition worsened swiftly. Soon she was unable to eat, and developed ‘uncontrollable’ diarrhoea. On December 16 she collapsed and was taken by ambulance to a local A&E, where her blood was tested – but not for DPD deficiency.
Finding nothing untoward, Sarah was sent home. She continued to deteriorate and her consultant finally advised her to stop taking capecitabine on December 20.
Next day doctors admitted her to hospital. On Christmas Day, Sarah was moved to intensive care. Only then was she tested for DPD deficiency, and found to be positive.
Sarah spent seven weeks in intensive care, finally going home in May, five months after she was admitted. Nearly six months later, she still needs round-the-clock help from a team of carers. ‘I would like to see this test done as a matter of routine,’ Sarah says. ‘It is vital that everyone concerned with caring for patients is aware of the symptoms of DPD deficiency. I’m alive, but I’ve lost my mobility. No one should have to go through this.’
There is one area where DPD testing already is routine – Dorset. Oncology consultant Dr Bryony Eccles began treating NHS bowel-cancer patients there two years ago after one of her patients died from taking capecitabine.
Dr Eccles is convinced that ‘testing reduces the risk’.
She and her colleagues have managed to obtain charitable funding to pay for testing throughout Dorset.
She also makes clear to every patient that capecitabine and 5FU do carry risks: severe nausea and diarrhoea should be red flags. She says: ‘It’s very important for doctors to be aware of the possible side effects – and to act accordingly if they appear.’ There are now signs of change. In May 2018, the Portsmouth coroner David Horsley held an inquest into the death of Mr Gadd and sent a report to NHS England raising concerns. He stated: ‘In my opinion, action should be taken to prevent future deaths, and I believe your organisation has the power to take such action.’
Professor Stephen Powis, NHS England’s medical director, replied in August. He agreed there should be a ‘national alert card’ setting out the dangers to every patient and their carers. And he agreed that there should be an investigation into whether DPD testing should be made available for all patients before they were treated with either capecitabine or 5FU.
Bowel Cancer UK is already convinced that it should be. Deborah Alsina, its chief executive, says it is vital that all cancer sufferers should be protected from ‘avoidable toxic reactions, which can have a devastating effect on patients’.
An NHS England spokesman said a circular telling hospitals to warn patients that the side effects of the drug could be life-threatening would be sent out later this month, and would be shared with other bodies involved in cancer treatment. The warning card would be ready by the end of the year.
John Knighton, medical director for the Portsmouth Hospitals NHS Trust, in whose care Keith Gadd died, said: ‘Our condolences and thoughts are with the family of Mr Gadd. As a designated cancer centre, we actively adhere to and follow national guidance and best practice. We have implemented the recommendations made by Professor Powis in his letter.’
Welcome as this may be for future patients, Keith Gadd’s family are still reeling. ‘We feel broken by his death,’ Louise says. ‘His post mortem showed he had no secondary tumours, so he would probably have lived for at least five or ten years. He was robbed of all that.’
That Father’s Day picnic in the shade of his favourite oak tree was the last one Keith and his family shared together – and that is where they scattered his ashes.
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