NHS isn’t warning bowel cancer patients that their chemo can kill them
The NHS still isn’t warning bowel cancer patients that their chemo can kill them – despite eight months passing since the alarm was raised
- Lynn Stevens was diagnosed with bowel cancer after a routine test screening
- After successful surgery in January this year, Lynn appeared to be in the clear
- Doctors advised a course of chemotherapy, to wipe out any rogue cells
- On March 21 Lynn had her first and only dose of intravenous fluorouracil
- Less than four weeks later, she was dead, aged just 66 – poisoned by the very drug that was supposed to prolong her life
Poisoned: Lynn Stevens died a month after a single dose of chemotherapy
Lynn Stevens was no stranger to hard-won battles. As a young woman, the former machinist took part in a landmark 1968 strike for equal pay for women at Ford’s Essex factory – as later shown in the hit film Made In Dagenham, starring Miranda Richardson and Bob Hoskins.
And when, late last year, Lynn was diagnosed with bowel cancer after a routine screening test proved positive, she knew she was in for a difficult time, but also that the odds were stacked in her favour.
Tests revealed it was at an early stage and had not spread beyond the bowel – boosting her chances of a full recovery.
After successful surgery in January this year, Lynn appeared to be in the clear.
But just to be safe, her doctors at the Worcestershire Royal Hospital in Worcester advised a course of chemotherapy, to wipe out any rogue cancerous cells that might be lingering.
‘They said it was a belt-and-braces approach, which would slightly increase her chances of long-term survival,’ says her husband Chris, 66, a retired photographer from Evesham, Worcestershire. ‘She had a lot to live for. So she went for it.’
The couple, who had been together since their teens and married for 47 years, were otherwise fit and active and hoped to enjoy many more years together.
So, on March 21, Lynn had her first and only dose of intravenous fluorouracil, a drug prescribed each year to thousands of patients with bowel and some other forms of cancer.
Less than four weeks later, she was dead, aged just 66 – not because of her cancer but because she had been poisoned by the very drug that was supposed to prolong her life.
‘Her last weeks were agony,’ Chris says. ‘Her entire digestive tract was burnt, as if by acid. She had constant nausea and diarrhoea, and couldn’t process food. No one warned us this might happen. Yet as I know now, Lynn’s death was avoidable.’
Like an estimated one in 20 people in the UK, Lynn’s body did not produce a liver enzyme called dihydropyrimidine dehydrogenase, or DPD.
Normally, DPD deficiency causes no ill effects. But for cancer patients, its absence renders both fluorouracil (also commonly known as 5FU) and capecitabine, the tablet form of the same drug, potentially lethal.
Their bodies cannot process and then excrete the toxic drugs after they have done their work of killing cancer cells. So the chemicals stay in the body, wreaking havoc.
Lucky: Richard Bingham, with his wife Becky, was tested for DPD deficiency after getting ill
Shockingly, there is a simple blood test for DPD deficiency, which costs just £60 but is available on the NHS in only a few areas, such as Dorset. But most patients given bowel cancer chemotherapy are never told about it, nor warned of the potential risk.
Last October, when The Mail on Sunday published our first investigation into the chemotherapy side effects that killed patients like Lynn, health chiefs at NHS England promised to take immediate steps to protect and warn anyone offered chemotherapy for bowel cancer. Yet nothing seems to have been done.
There have been almost 1,600 reported cases of ‘serious adverse consequences’ attributed to fluorouracil and capecitabine poisoning since 2000. Of these, 303 patients died – yet many doctors fear cases could go unrecorded as healthcare workers may not be certain the chemotherapy caused the death.
Telltale signs to look out for
DPD is an enzyme made by the liver. It helps the body to break down two common chemotherapy drugs –fluorouracil, or 5FU, and capecitabine, which is also known as Xeloda. These are used as a treatment for a number of different cancers, including those in the breast, bowel and stomach.
Between three and five per cent of the population are believed to have a DPD deficiency. Without enough of the enzyme, these chemotherapy drugs build up in the body and cause more severe side effects than usual. In some cases, these can be life-threatening.
Those with DPD deficiency usually develop severe side effects after the first few doses of fluorouracil or capecitabine. They can also occur in those without DPD deficiency, so patients taking these drugs are advised to contact their doctor immediately if they experience the following, or any other worrying symptoms:
- Breathlessness
- Diarrhoea
- A sore mouth
- Feeling or being sick
- Peeling or blistering of the skin
Meanwhile, many staff involved in bowel cancer chemotherapy appear still to be unaware of the dangers. ‘We were told nothing before Lynn was given the treatment,’ says Chris. ‘No one even mentioned DPD deficiency or its risks.’
It took just three days after her fluorouracil infusion before Lynn began to fall ill. She could not eat because of the burns, and could not swallow cold water. She had severe diarrhoea and the inside of her mouth, says Chris, ‘looked like it had been seared with red hot coals’.
Two days later, he raised the alarm with the Worcestershire Royal Hospital’s oncology unit. There Lynn was given a saline drip to deal with dehydration, and offered a yogurt for her burnt throat.
In fact, her symptoms were classic signs of fluorouracil poisoning. But Chris says no one seemed to recognise this. ‘There was still no mention of DPD deficiency, or the fact it might be the chemo making her ill.’
However, Lynn was stabilised and discharged. Then, within days, she was back in hospital on the oncology ward. ‘By then, she’d been seriously ill for ten days,’ says Chris. ‘The process was abysmal. It was not until two days after she went back to the ward that she was seen by a professor – who was the first person to suggest her condition was probably down to the chemo and DPD deficiency.’
On April 8 this year, Lynn was moved to intensive care. But it was too late. Chris says: ‘For the last week of her life she was unconscious, and heavily sedated. I suppose that was better. It meant she suffered less. Before that, she hadn’t been able to talk. But still she was fighting – the doctors told me five successive times I should say goodbye to her.
‘The care they gave was brilliant, but there was nothing they could do. By the end, she had about 20 lines going into her body. To see her like that was heartbreaking, and so unnecessary.’
Lynn died on April 17, less than a month after her first dose of chemotherapy. ‘I don’t want the cause of her death to be recorded as cancer, but extreme chemotherapy toxicity, because that is what killed her,’ he adds.
In America, an antidote to fluorouracil poisoning, a drug called Vistogard, has been developed. However, it costs about £25,000 per patient and is not available in Britain. In any case, it must be given within four days of the start of treatment.
Even for those who survive chemotherapy poisoning caused by DPD deficiency, the experience is horrific. Sussex estate agent Richard Bingham, 41, was diagnosed in 2016 with advanced bowel cancer which had already spread to his lungs.
He has endured many bouts of gruelling treatment, including several operations, and multiple courses of both chemotherapy and radiotherapy.
Richard Bingham, 41, was diagnosed in 2016 with advanced bowel cancer which had already spread to his lungs
Yet the worst experience of all, he says, came quite early after his first operation. ‘After the first couple of days of taking capecitabine tablets, I was curled up in a ball, with severe cramps, couldn’t keep anything down, and had dreadful diarrhoea. It steadily got worse, but I thought it was normal. I suppose I was being “brave”.’
After a week of suffering, Richard’s wife took him back to hospital, where he became delirious and had to be fed through a tube.
‘That’s when the vomiting really started – I was unable to keep even water down.
‘The diarrhoea got much worse and I became delirious. It was very traumatic for both of us.’
Of course, as Richard now knows, he is lucky to be alive.
‘It has left deep mental scars. It was only after I finally got home that my oncologist did a test and discovered I was DPD deficient.’
What’s the difference between an ECG and an EEG?
They are two commonly used hospital tests, but while they sound similar, an ECG and an EEG measure different things.
An ECG, or electrocardiogram, involves sticking 12 electrodes across the chest to determine the heart’s electrical activity and allows doctors to check for palpitations or faulty heart valves that might need repairing or replacing.
An EEG, or electroencephalogram, also uses electrodes – up to 20 – but they are attached to the scalp to measure electrical impulses in the brain. The EEG is the classic test for epilepsy.
This newspaper has been given details of other bowel cancer patients who have suffered the consequences of DPD deficiency in the period since we published our first article: a woman who survived in Scotland, and a man of 63 – whose family have asked us not to name him – with very early stage cancer who died in March after surgery, followed by fluorouracil and capecitabine, at Glangwili hospital in South Wales.
His son said: ‘No one ever sat us down and told us about this. Had he known, he would have had the test.’
Both his death and Lynn’s will be the subject of inquests.
But the immediate question is: why have NHS bosses been so slow to implement promised changes?
Last August, Stephen Powis, the director of NHS England, called for a ‘national alert card’ setting out the dangers to every patient and their carers, and agreed that there should be an investigation into whether DPD testing should be made available for all patients before being treated with either capecitabine or fluorouracil.
In October, an NHS spokeswoman told The Mail on Sunday that a letter, telling hospitals to warn patients that the side effects of the chemotherapy could be life-threatening, would be sent out by the end of that month.
They also claimed the warning card would be ready by the end of 2018. Neither has yet happened, and when a different NHS England spokeswoman was quizzed on the issue last week, she said it was up to individual hospitals to provide patients with a warning card about the side effects of chemotherapy ‘in general’.
The NHS admitted that there may be no specific warning about fluorouracil and capecitabine poisoning, and DPD deficiency. And as for DPD testing, its effectiveness is still being ‘investigated’.
The charity Bowel Cancer UK, which supports research and campaigns to save lives, is now demanding action. Chief executive Deborah Alsina told the MoS: ‘Toxic reactions to chemotherapy can have a devastating effect on patients and their families. Testing for DPD is cost-effective and relatively simple, as only a blood sample is required.
‘We urge NHS England to introduce routine DPD deficiency testing for all bowel cancer patients to help prevent them and their families having to go through this horrific ordeal.’
Meanwhile, Chris mourns his beloved wife and the years he feels were stolen from them. ‘We loved to travel: we’d criss-cross America for weeks at a time.
‘She loved to garden and walk the dog. We had a good life.
‘How can you give someone something so toxic without establishing whether it might kill them? It just doesn’t make sense.’
A spokesman for the Worcestershire Royal Hospital declined to comment on an individual case, but said: ‘We would like to express our deepest condolences to Mr Stevens for the tragic loss of his wife.’
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