from Ann Wills

Mail on Sunday 23.6.19  “STILL THE NHS ISN’T WARNING BOWEL CANCER PATIENTS THAT THEIR CHEMO CAN KILL THEM”  by David Rose.

Lynn Stevens was diagnosed with bowel cancer last year.  Tests revealed it was at an early stage & hadn’t spread.  After successful surgery this year, she appeared to be  clear.  But ‘just to be safe’, doctors at Worcestershire Royal Hospital, advised chemotherapy to wipe out any cancerous cells that might linger. They said it was a ‘belt & braces’ approach to slightly increase her chances of long-term survival.  So in March, Lynn had her first & only dose of intravenous fluorouracil, a (fluoride)drug prescribed  to 1,000s of patients.  4 weeks later she died aged just 66 - not from cancer but poisoned by the drug.  Her husband Chris said “Her last weeks were agony. Her entire digestive tract was burnt, as if by acid.  No one warned us this might happen, yet her death was avoidable.”   Like some 1 in 20 people in UK, Lynn’s body didn’t produce DPD liver enzyme.  Normally this causes no ill-effects, but its absence makes fluorouracil (5FU) & the tablet form capecitabine,potentially lethal to cancer patients.  Their bodies can’t excrete the toxic drugs which stay in the body, wreaking havoc.   There’s a simple blood test costing just £60 for DPD deficiency in some NHS areas, but chemo patients are often not told of it, nor warned of the chemo risk.   There have been almost 1,600 reported cases of serious adverse consequences due to fluorouracil & capecitabine poisoning since 2000.  303 patients died.  But staff involved appear unaware of the dangers.  3 days after the chemo, Lynn couldn’t eat because of the burns & could not swallow cold water.  But no-one seemed to recognise the symptoms.  It wasn’t until about 14 days later that she saw a professor who suggested it was probably caused by the chemo & DPD deficiency.   Lynn died less than a month after her first chemo.  Her husband said  “I don’t want the cause of her death to be recorded as cancer, but extreme chemotherapy toxicity, because that is what killed her.”   The NHS promised Mail on Sunday that a letter telling hospitals to warn patients would be sent out & that a warning card would be ready by the end of 2018.  This has not happened.  When NHS England was quizzed last week, it said it was up to individual hospitals.  The NHS admitted there may be no specific warning given to patients.

Ann