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Pancreatic cancer: Life-changing medication not given to 40% Pancreatic cancer: Life-changing medication not given to 40%
(5 months later)
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Mark Davies was just 40 when he was diagnosed with terminal pancreatic cancerMark Davies was just 40 when he was diagnosed with terminal pancreatic cancer
Mark Davies was just 40 when he was diagnosed with terminal pancreatic cancer
Two-fifths of pancreatic cancer patients are not being prescribed medication recommended to improve their lives, a charity has warned.Two-fifths of pancreatic cancer patients are not being prescribed medication recommended to improve their lives, a charity has warned.
A lack of awareness of pancreatic enzyme replacement therapy (PERT) means they are not being offered it.A lack of awareness of pancreatic enzyme replacement therapy (PERT) means they are not being offered it.
Without it, eating can be painful, resulting in little appetite and weight loss.Without it, eating can be painful, resulting in little appetite and weight loss.
The Welsh government said it expects PERT to be offered in line with professional guidance.The Welsh government said it expects PERT to be offered in line with professional guidance.
According to Pancreatic Cancer UK, half of people with the disease die within three months of diagnosis.According to Pancreatic Cancer UK, half of people with the disease die within three months of diagnosis.
Just 5.7% of people diagnosed with pancreatic cancer in Wales survive five years.Just 5.7% of people diagnosed with pancreatic cancer in Wales survive five years.
Hannah Davies, of Knighton in Powys, lost her husband Mark to the disease in 2020.Hannah Davies, of Knighton in Powys, lost her husband Mark to the disease in 2020.
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"Mark was a healthy 40-year-old man," the 38-year-old said."Mark was a healthy 40-year-old man," the 38-year-old said.
"He was a very, very hands on dad to our two boys, Freddie and Rupert."He was a very, very hands on dad to our two boys, Freddie and Rupert.
"He was a wonderful husband. Very lucky that we found each other in life.""He was a wonderful husband. Very lucky that we found each other in life."
Mark Davies, pictured with children Freddie and Rupert and wife Hannah, died from pancreatic cancer in 2020Mark Davies, pictured with children Freddie and Rupert and wife Hannah, died from pancreatic cancer in 2020
In March 2020 Mark began suffering stomach pains, tiredness and appetite loss.In March 2020 Mark began suffering stomach pains, tiredness and appetite loss.
Between April and June he called a doctor 19 times about his symptoms.Between April and June he called a doctor 19 times about his symptoms.
In July he went to hospital.In July he went to hospital.
A scan and biopsy confirmed he had pancreatic cancer.A scan and biopsy confirmed he had pancreatic cancer.
"He did confirm that due to the size of the tumour that it was inoperable, and that it would be terminal as well," Ms Davies said."He did confirm that due to the size of the tumour that it was inoperable, and that it would be terminal as well," Ms Davies said.
Pancreatic cancer makes eating painful because enzymes made by the pancreas to help us digest food don't reach the bowel.Pancreatic cancer makes eating painful because enzymes made by the pancreas to help us digest food don't reach the bowel.
PERT resolves this by replacing those missing enzymes.PERT resolves this by replacing those missing enzymes.
Without the drug, eating can be painful, resulting in little appetite and weight lossWithout the drug, eating can be painful, resulting in little appetite and weight loss
The change when it was first given to Mark was "unbelievable".The change when it was first given to Mark was "unbelievable".
Ms Davies said: "I remember, he had cheese on toast, simple.Ms Davies said: "I remember, he had cheese on toast, simple.
"This was a real foodie, who really loved his food."This was a real foodie, who really loved his food.
"But to see him sit there and have some cheese on toast and he was like, 'oh my God this is great, I'm able to eat this'.""But to see him sit there and have some cheese on toast and he was like, 'oh my God this is great, I'm able to eat this'."
"It gave us memories of being able to eat together as a family that we would never have had if he didn't have PERT medication.""It gave us memories of being able to eat together as a family that we would never have had if he didn't have PERT medication."
Despite costing just £7 a day only 63% of pancreatic cancer patients in Wales are prescribed PERT, according to Pancreatic Cancer UK.Despite costing just £7 a day only 63% of pancreatic cancer patients in Wales are prescribed PERT, according to Pancreatic Cancer UK.
The charity's Anna Jewell said: "It really seems to be awareness of needing to get these tablets to people with pancreatic cancer and awareness and understanding of the fact that they will become very malnourished and not be able to tolerate treatment if they don't get access to these tablets."The charity's Anna Jewell said: "It really seems to be awareness of needing to get these tablets to people with pancreatic cancer and awareness and understanding of the fact that they will become very malnourished and not be able to tolerate treatment if they don't get access to these tablets."
A lack awareness of means cancer sufferers are often not offered the drugA lack awareness of means cancer sufferers are often not offered the drug
Of those diagnosed with pancreatic cancer, 80% are at a stage when lifesaving treatment is not possible.Of those diagnosed with pancreatic cancer, 80% are at a stage when lifesaving treatment is not possible.
"But here we have something really simple," Ms Jewell said."But here we have something really simple," Ms Jewell said.
"A simple tablet that is available, that isn't costly, that can really make a difference, and a significant difference, in people's quality of life when they've been diagnosed with pancreatic cancer."A simple tablet that is available, that isn't costly, that can really make a difference, and a significant difference, in people's quality of life when they've been diagnosed with pancreatic cancer.
"So it's just so crucial that we get these tablets to people.""So it's just so crucial that we get these tablets to people."
Royal College of Surgeons pancreatic cancer lead Keith Roberts published a study in 2018 comparing patients who had PERT with those who did not.Royal College of Surgeons pancreatic cancer lead Keith Roberts published a study in 2018 comparing patients who had PERT with those who did not.
"It didn't matter what the scenario was," he said."It didn't matter what the scenario was," he said.
"If you looked at people having surgery, people having chemotherapy, people having no treatment at all, the survival was pretty much twice as long in the group that received PERT.""If you looked at people having surgery, people having chemotherapy, people having no treatment at all, the survival was pretty much twice as long in the group that received PERT."
Without it patients faced losing muscle and wasting away.Without it patients faced losing muscle and wasting away.
"A simple tablet that is available, that isn't costly," Hannah said"A simple tablet that is available, that isn't costly," Hannah said
"If you're not getting the goodness from your food how can you get through treatment and how can you fight this cancer?" said Mr Roberts."If you're not getting the goodness from your food how can you get through treatment and how can you fight this cancer?" said Mr Roberts.
The Welsh government said health boards and trusts should provide PERT in line with guidance from the National Institute for Health and Care Excellence (NICE) and as agreed by the NHS in Wales.The Welsh government said health boards and trusts should provide PERT in line with guidance from the National Institute for Health and Care Excellence (NICE) and as agreed by the NHS in Wales.
"The Wales Cancer Network has also raised awareness of the importance of PERT prescribing," a spokesman said."The Wales Cancer Network has also raised awareness of the importance of PERT prescribing," a spokesman said.