At 43, Kumaran Rengiah is still collecting running medals. His longest race is a half marathon. The medals tell a hopeful story, but not an effortless one: they were earned while living with chronic myeloid leukemia (CML) and organising his days around treatment, tests and uncertainty.
The contrast with late 2015 is stark. Kumaran was working full time, studying on weekends and travelling to see his wife and young daughter when unexplained weight loss, severe fatigue and back pain began to interfere with daily life.
“I kept thinking, this should not be happening to me. I was active and had so many responsibilities. I had a family and people relying on me, but suddenly my mind went from a very high place to a very low one,” he recalled.
A blood test found an unusually high white blood cell count and he was referred to Hospital Ampang. Even then, disbelief made him wait almost a week before seeing a specialist. After CML was confirmed, he wrote down every question he could think of: Was it hereditary? Could he still hug and share meals with his family? How long would he live?
For several months, he kept the diagnosis from his wife and mother to protect them. When he finally told his wife, fear gradually became practical support; appointments, meal planning and making treatment part of the family’s routine.
“My wife and daughter are my pillars. When I come home and see them, that is the real world for me. They give me a reason to keep moving forward,” Kumaran said.
This year’s World CML Day theme, From Access to Monitoring: 25 Years Forward for Every CML Patient, marks 25 years since the first targeted therapy helped transform CML into a condition many patients can manage long term. The campaign stresses that progress depends on access to diagnosis, treatment, molecular monitoring, reliable information and patient-centered care.[1]
Dr Haris Abdul Rahman, Consultant Physician and Hematologist, has witnessed that change across his career. Tyrosine kinase inhibitors (TKIs) changed the outlook by targeting the abnormal process that drives CML. Today, he said, the conversation can extend beyond survival to quality of life, future plans and, for some patients, treatment-free remission (TFR).
At the recent Malaysian Society of Hematology Scientific Meeting, that progress became deeply personal. Dr Haris reconnected with a former CML patient he had not seen for almost 10 years. She was volunteering at the Max Family Society Malaysia booth, chatting with and encouraging other patients. The encounter showed him how far CML care has come over the past two decades: years ago, the priority was helping patients survive; today, many are getting on with life and even supporting people who are just beginning their journey.
“We no longer think only about survival. We think about living with CML, and now, for selected patients, whether treatment-free remission can be the next milestone,” Dr Haris said.
TFR means that a carefully selected patient who has achieved a sustained deep molecular response stops TKI treatment under close medical supervision, with frequent molecular testing to ensure that major molecular response is maintained and treatment can be restarted promptly if necessary.
It is not a cure, a casual break from medication or an end to medical care. About 40% to 50% of eligible patients remain off treatment after a TFR attempt. When molecular recurrence occurs, about 90% to 95% of patients who restart treatment regain their previous deep molecular response.[2]
The possibility is meaningful to Kumaran because daily treatment requires planning. His prescribed routine involves medication twice a day, 12 hours apart, with fasting requirements around each dose. The evening dose can be difficult when meetings run late, work becomes absorbing and meals must be timed carefully.
“Work gets busy and the tendency to forget is there, so I have to plan my time and food around the medication. After a few months, the routine becomes a habit, but you still have to keep working at it,” he said.
After a decade of treatment and regular polymerase chain reaction (PCR) blood tests, Kumaran hopes TFR may one day be possible, but he remains guided by his doctor: “If the doctor says I can, I would welcome the opportunity. If the doctor says I cannot, then I continue with the medication.”
Preparing for TFR: what patients can do now
TFR is not suitable for everyone. Eligibility depends on clinical selection, time on TKI treatment, a sustained deep molecular response, access to high-quality testing and willingness to attend frequent follow-up. Exact criteria and schedules must be decided by the treating team.[3]
According to Dr Haris, patients do not need to wait until they are eligible to start preparing:
- Start the conversation early. Tell your doctor about your long-term goals and ask what you would need to achieve before TFR could be considered.
- Take treatment exactly as prescribed. If side effects, work or family pressures make adherence difficult, tell the healthcare team rather than stopping or changing treatment independently.
- Know what your PCR results mean. Ask what your BCR::ABL1 level indicates, including whether it reflects a deep molecular response and, if so, how long that response has remained stable. The pattern over time matters.
- Plan for monitoring. Follow-up is most frequent during the first year after stopping treatment and continues long term. Patients should consider the time, travel and access required before attempting TFR.
- Prepare for either outcome. Some eligible patients choose to remain on treatment; others attempt TFR and later restart therapy. Neither choice nor molecular recurrence is a personal failure.
For TFR to be safe, patients need specialists, reliable PCR testing, timely results and a team able to respond if molecular levels rise. Malaysia already has excellent hematology expertise and good molecular testing facilities in many centres. Dr Haris said the focus now is on continuing to strengthen referral pathways and access so that more patients can benefit from these advances, wherever they live.
He believes stronger referral networks, ongoing training and better logistics for transporting blood samples can help extend access more widely. Equally important is clear information that helps patients ask questions and participate in decisions. “The partnership between the patient and the healthcare team is the core of everything,” he said.
Kumaran found that partnership through his doctors, family and the Max Family Society Malaysia. Seeing other patients smiling, asking questions and getting on with their lives challenged the bleak picture he had formed when he first heard the word ‘cancer.’
“I looked around and thought, they are doing fine. Maybe I can too. You are not alone in this journey. With the right information, you can take the right action and keep moving forward,” he said.
TFR remains a hope rather than a promise for Kumaran. Yet the man who once feared he might not be there for his family is still a husband, father and runner, proving that hope can coexist with discipline, doubt and difficult days.
His message to someone newly diagnosed is simple, “Do not give up. Get the right information, follow your doctor’s advice and keep going.”
Questions to take to the next appointment
What do my PCR results show? Have I reached a deep molecular response, and has it been stable? Could TFR ever be suitable for me? If I stopped treatment, what monitoring would I need and am I ready and able to commit to it?
This awareness feature brings together the lived experience of Kumaran Rengiah, a CML patient from the Max Family Society Malaysia, and clinical insight from Dr Haris Abdul Rahman, Consultant Physician and Hematologist.
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, Kumaran Rengiah is still running, working and raising his family. His story shows what medical progress can make possible, and why hope for treatment-free remission depends on access, monitoring and partnership){kind=link}