“We join trials because we want to live”

Posted on Mar 11, 2013 Last Updated Sep 17, 2013

Source: The New Paper on Sunday (20 January 2013)

“At that point, I would have tried anything. What did I have to lose by trying a new drug? Others might think participating in clinical trial is like being a guinea pig, but I see it as a new hope, one last chance for a miracle…Even if I died, at least I did everything I could to fight death.” – Mr Tay Khiang Boon (right), 54, who has multiple myeloma, a deadly form of blood  cancer

Others might take clinical trial drugs to make money.
But for this cancer patient, it represents hope when all seem dire and lost. Says Mr Tay Khiang Boon, 54, wryly: “We are the other lab rats,who undergo the trials because we want to live.” The slim, tanned man’s eyes sparkle as he speaks to this reporter. It is hard to believe that he was on the brink of death just two years ago. He does a large part of the housework in his four-room flat in Chai Chee, where he and his wife Angie, 52,and their two daughters, a staff nurse and pharmacist, aged 24 and 26, live. He goes walking in the parks twice a week, and is even strong enough to work as salesman in a lighting shop on weekends. You would never suspect that he has multiple myeloma,a deadly form of blood cancer. Multiple myeloma is cancer that starts in the plasma cells in bone marrow. Plasma cells help your body fight infection by producing proteins called antibodies. When infected with cancer, the plasma cells grow out of control in the bone marrow and form tumours in the areas of solid bone.The growth of these bone tumours makes it harder for the bone marrow to make healthy blood cells and platelets. As the cancer cells grow in the bone marrow, it causes pain, most often in the ribs or back. Kidney failure is also a common side effect. The cancer is currently incurable, although its symptoms can be treated, says Mr Tay.He discovered his condition in 2006 and braved more than 10 cycles of chemotherapy and two stem-cell transplants before he returned to work as a salesman in a lighting shop in 2008. He had a relapse in 2010,and this time, the cancer drugs did not work. Says Mr Tay: “My body had become resistant to them.”  Doctors tried to use other existing drugs, but those too did not work. “I was at a loss. What could I do? There were no more drugs to help me.”At his lowest point, he spent six agonising days lying on a hospital bed in the National University Hospital,on the brink of death. There were many tubes poking into his veins, and a “face mask” was attached to force him to breathe. Mr Tay says: “My blood plate let count was very low, I had to undergo blood transfusions every day. “I was so pale,my skin was grey and I looked like a corpse. “I also had to be put on many drips because my immune system was weak from the chemotherapy. “The doctors told my family to be prepared for the worst.” Fortunately, his attending doctor knew of one drug that was not yet on the market. This drug was so new, it didn’t even have a name, only a codename–SCH727965. But it could be used to treat blood cancers, and was available on a trial sponsored by its creators. Mr Tay’s doctor asked if he wanted to be enrolled in the trial. He says: “At that point, I would have tried anything. “What did I have to lose by trying a new drug? “Others might think participating in clinical trial is like being a guinea pig, but I see it as a new hope, one last chance for a miracle. “I told myself that I was not the unfortunate one to try the (new) drug, but given the opportunity to try a medical ‘breakthrough’. “Even if I died, at least I did everything I could to fight death.” His wife tells TNPS that she was a little worried when she learned that he was opting for a drug that had not been used on many other people. Adds Mrs Tay, a sales promoter: “It was really going into the unknown.I really didn’t know what would happen to him,and really didn’t want to think about what could have happened. “In the end, I supported him because we tried everything else,and nothing worked.” So Mr Tay went ahead. He signed a form stating that he accepted the risks of having a new drug administered to him. He also went through several tests and many blood transfusions before he could participate in the trial. He says: “My doctor warned me that there might be side effects. But at that point, I didn’t care about the side effects. “All I cared about was saving my life and looking after my family.”

Thankfully, the drug worked. Within the first cycle, his cancer cells had been halved.
Mr Tay says: “I was so happy. This new drug literally saved my life.” There were side effects, however. Mr Tay experienced diarrhoea, watery eyes and a runny nose while taking the drug. But he says: “To me, these symptoms were very mild. I’ve experienced side effects from other drugs that were much worse, so the diarrhoea did not bother me at all.” The drug which saved him is still not approved, but now has a name– Dinaciclib. After being on Dinaciclib, Mr Tay got better and was discharged after several weeks in hospital. He hopes his cancer can be fully cured one day. He says: “There will always be this fear of clinical trials. “Of course, clinical trial participants face more risks and potential side effects. But someone has to be the first to test the drugs, right?” Says one of his doctors, Associate Professor Chng Wee Joo from the National University Cancer Institute: “We are glad that Mr Tay managed to get access to the drugs that saved his life through the trials. “He is among the patients who have benefited from the development of new drugs which clinical trials have made possible.”