THE first Hugh Forgie knew anything was wrong was when his legs became swollen on the plane journey home from Tenerife 15 years ago.
At the time the former competitive sportsman was only 46 and still super fit. The last thing he expected was to be diagnosed with a potentially deadly disease.
Mr Forgie, now 61, said: "I spoke to the doctor about it and he said 'it's probably just water retention but I'll take a blood test'. When the blood test came back it showed a high white blood count and they diagnosed then that I had CLL.
"I felt fine, I was doing a lot of cycling, so the diagnosis hit me like a rock to be honest."
Mr Forgie, who lives in Abington, South Lanarkshire, with his wife Margaret, was a keen runner and triathlete who later took up cycling and competed twice in shooting for Team GB in the World Championships. The odds of developing CLL at his age were tiny.
Initially he had his blood checked every six months at Wishaw General, but it was only in 2008 that the count of abnormal white blood cells started to rise rapidly.
Mr Forgie underwent chemotherapy but doctors stopped the treatment after two rounds as his immune system was not recovering. He contacted Dr Mike Leach, Scotland's only CLL specialist at the time, and was taken on as a patient at the Beatson in Glasgow.
In 2011, his count spiked again and he was put though another round of chemotherapy.
Mr Forgie said: "They were expecting me to get about five or six years of remission after that, but within two or three year, the leukaemia came back again.
"They found I had a TP53 mutation, which means that the leukaemia has become immune to chemotherapy. So that option was out the window."
At first, medics attempted a life-saving bone marrow transplant but, despite steroids, Mr Forgie's count would not stay down long enough to allow the procedure to go ahead.
"It wasn't good news because there wasn't much left," said Mr Forgie.
However, in 2014 a new drug - ibrutinib - became available. Although it does not kill off leukaemia cells, it can reduce them to a manageable level.
For a while it worked, but after two and a half years Mr Forgie's leukaemia cells became immune to it as well and, with his immune system failing, he also suffered shingles and developed pneumonia in both lungs.
In February this year - with all other options exhausted - he became one of only seven people in Scotland to be placed on venetoclax.
He said: "Since I've been on venetoclax I've not had any problems whatsoever. In fact I'm out exercising every day.
"It's keeping me alive so I'm pretty happy. I take every day as it comes. When I was first diagnosed I thought 'if I'm here next year I'll be quite happy'. Now 15 years later I'm still here.
"Having said that, a lot of my friends who've had CLL are dead. I think I've been a bit lucky."
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