New drug is a huge boost for cancer patients

A FIREFIGHTER battling a rare blood cancer has welcomed the decision to allow patients access to a new drug.

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Ally Boyle has wleocmed the approval for the treatment
Ally Boyle has wleocmed the approval for the treatment

The Scottish Medicines Consortium has given the go-ahead for doctors to prescribe Revlimid, or lenalidomide, to sufferers of myelodysplastic syndrome (MDS) .

Ally Boyle, an area commander with the Scottish Fire and Rescue Service, says the new treatment will "have a huge impact" on the lives of sufferers dependent upon regular blood transfusions to survive.

He explains: "This means people whose red blood cells are affected by this condition won't have to get transfusions every two to three weeks.

"It's a fantastic step forward for patients all over Scotland and beyond."

Ally, from Hamilton, was diagnosed with (MDS) seven years ago.

The term MDS describes a group of cancers where the production of blood cells by the bone marrow is disrupted, leading to severe anaemia, infections and bleeding.

He said: "I was tired all the time, but just put it down to being a bit of a workaholic.

"The doctors thought at first it was a virus, but after a bone marrow test, I found out I had MDS. At the time, my life expectancy was three years.

"I will need a bone marrow transplant in the future, which offers around 30% chance of a cure."

Despite the shock of his diagnosis, Ally, who lives with his wife and six-year-old daughter, was deter-mined to stay positive.

He said: "You just soldier on. I had great support from the fire service, who helped me organise a bone marrow transplant drive for the Anthony Nolan Trust.

WE recruited 5000 new donors and saved seven lives - a fantastic result."

Ally is about to retire as his condition means it is becoming increasingly hard to work. He is exhausted most of the time and suffers from nausea and severe headaches.

He said: "I'm devastated, as I love my job and would have loved to continue.

"But I am finding it too difficult to keep going. I would work one day, then have to take two days off to recover.

"Even when I was well and managing to work last year, I would go to bed as soon as I got home.

"To pick up my daughter from school, I would have to plan it, making sure I rested before I went, and when I came back.

"Now I am not working, I can manage my fatigue better and control exposure to infections, for example."

Ally's red blood cells are not affected by MDS.

He said: "I am lucky - I don't rely on blood transfusions."

His white blood cells are affected, which means he has little immunity to infection.

Ally said: "I have a friend who has had MDS for 20 years and she needs a blood transfusion every two to three weeks. That has huge complications in that there is a big build up of iron around her heart her body can't process.

"The news that the Scottish Medicines Consortium has approved this drug to help those patients is such a boost.

"It gives me heart, not just because it will improve the lives of so many people, but because of the way patients were given a voice in the process.

"MDS UK, the support organisation for sufferers of the condition, were involved along the way, and that's to be applauded. It's great news."

Dr Mark Drummond, consultant haematologist at the Beatson West of Scotland Cancer Centre in Glasgow, said: "Red blood cell transfusions are currently the cornerstone of disease management as there are no other medicines licensed for the treatment of this kind of MDS.

"Around 40% of patients are transfusion dependent when they are diagnosed and most patients become transfusion dependent at some stage.

"This places a real burden on patients and the health service so phys-icians are keen to see how new therapies, such as the oral treatment lenalid-omide, can lead to some patients managing their condition without blood transfusions for periods of time."

Sophie Wintrich, chief executive of MDS UK Patient Support Group, said: "While MDS is a rare disease, it imposes significant restrictions on the lives of patients and their families, and negatively impacts on their overall quality of life.

"We therefore applaud the SMC's decision to recommend lenalidomide as it will make it easier for patients in Scotland to access a treatment that will help to alleviate some of these constraints, by reducing the need for blood transfusions and therefore potentially also the frequency of tiring and long hospital visits."

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