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The greeting Kong Kok Seng gives his former oncologist if he bumps into thevisiting specialist at the National Cancer Centre (NCC) is "Hi, I'm stillaround!" Eleven years ago , the oncologist, then with the NCC, had diagnosed Kok Sengwith leiomyosarcoma, a cancer affecting the soft muscle tissue of his rectum. He had also given him only a couple of months to live, because of the extent ofthe disease.  Kong Kok Seng, 46, currently on his second cancer drug trial, with Dr Vijay Sethi, chair of the ethics committee. The panel oversees the safety of allcancer patients taking part in research trials. |
It was a devastating diagnosis. But Kok Seng, now 46, has defied all odds andsurvived more than a decade. He puts this "borrowed time" down to his havingtaken part in two trials for experimental cancer drugs. Back in 1995, things were much bleaker. "There were no drugs available for my kind of cancer then," says Kok Seng, whois married to Yvonne, a financial adviser. When he was first diagnosed withcancer, their son Sean was aged two and daughter Samantha was just six monthsold. Three years later, doctors realised that what Kok Seng had was notleiomyosarcoma but a gastrointestinal stromal tumour (Gist), which wasdiscovered only in 1998. It did not change the deadly outlook much. Only 10 to 15 new cases of Gist are seen at the NCC each year. Kok Seng, or Joey as everyone calls him, was 35 at the time of diagnosis and aconsultant engineer for an oil company. He is now a house husband. His ordeal began as a mix of symptoms: constipation, diarrhoea, passing blood,cramps and fatigue. The family doctor he had gone to dismissed it as piles, and Joey was neverexamined for an entire year. He is not sure what made the doctor finally examine his rectum, but when hedid, he "felt something not too good", and sent Joey promptly to the SingaporeGeneral Hospital (SGH), where the NCC is co-located, for "further tests". A colonoscopy (a test using a flexible tube to examine the colon and rectum)revealed that the "something" was "the size of a fist". Unfortunately, he began "bleeding badly" after the test - and doctors had tooperate. He was told to expect a scar but woke up to see a colostomy bag instead. Colostomy is a surgical procedure that brings the end of the large intestinethrough the abdominal wall. Stools moving through the intestine drain into abag attached to the abdomen. That was not the worst. Five days after surgery, he was told that the tumour had been resting againstthe bladder and could have spread. Doctors decided to save his bladder andopted to slice away just the cancerous areas. Unable to accept his fate, Joey consulted 10 other doctors, all of whom gave nohope. In the next five years, Joey went under the knife five more times to removemore of the cancerous tumour. Each time he begged the surgeons to leave hisbladder intact. It was in year five of his illness that doctors held out some hope. Joey hadbeen through the mill by then. The cancer had spread to his liver, a quarter ofwhich had to be removed. But experimental new drugs for liver cancer had become available by then and hewas asked if he wanted to take part in a clinical trial. He jumped at it. He says: "When you are still alive, you have the chance to try." He was on the first trial drug for 31/2 years. Consistent with trial protocol,he was never told what it was called. The drug worked well and the tumour in the liver shrank. When he stoppedresponding, more than three years later, another drug had come online. Joey went on a second trial for that new drug, even though one of its possibleside effects is that it may harden the arteries and cause a heart attack. He said: "I'd rather keep having surgeries and die on the operating table thansuffer a slow, lingering cancer death." Against the warnings of friends about being a guinea pig, Joey says he cannotafford to pay for cancer drugs being used now. He said: "I know someone who is paying $13,000 a month to treat his livercancer. If I didn't go on the trials, I wouldn't be here." The regimen for the latest trial involves 28 days on the drug followed by atwo-week rest. Other side effects: fatigue, mouth ulcers, and yellowing of theskin. As the drug company will be granted approval this month or the next to put thedrug on the market, Joey knows they may start to charge for it. He says: "Then I will have to go on another trial." A scan done last week revealed 10 spots of cancer in his liver. The largest is30mm - about the "size of a golfball". He says: "Doctors don't give me a timeframe any more. At the end of the day,God is in control." He adds: "I've tested the drug and I can only say that if I can save someoneelse, I'm happy."
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