“In Malaysia, there are 300-400 new cases of CML annually, although the actual number may be higher due to under-reporting, especially among older patients,” said Dr Chang Kian Meng, consultant haematologist and transplant physician.
“Most patients can’t believe it when they hear they have CML, especially when they look and feel healthy. The next thought is usually, ‘Did I cause this? Could I have prevented it?’
“In truth, apart from high doses of radiation, the exact reason why some people develop it and others don’t remains unclear.”
Despite its frightening name, the outlook is much more hopeful. “With treatment, most can live 20 years or more – a huge leap from just a few decades ago, when survival was only three to four years,” Chang said.
For Najha Johari, a wife, mother and insurance professional, it began 10 years ago with vague but troubling symptoms: bruises in odd places, weight loss, and relentless fatigue.
“I lost 10kg in just two months, and I was so tired. Once, I even fell asleep in my car while waiting at a traffic light,” she recalled.
One day, after playing with her young son, she suddenly felt breathless and noticed a hardness in her abdomen. A medical check revealed an enlarged spleen. Blood tests and a bone-marrow biopsy confirmed CML.
“When I heard the diagnosis, I was very emotional and fearful. Working in insurance, I had some idea of what leukaemia meant. I even sought a second opinion, but in just hours my white blood cell count surged extensively.
“The doctor told me delaying treatment even one day could put me at risk of a stroke,” she shared.
Despite her fear, Najha’s instinct was to fight. “Once I got past the denial, I was ready to start treatment right away. Deep down, I held on to the hope that one day, I wouldn’t have to rely on daily medication – that I could live my life more freely, with the disease under control but not controlling me.”
Treatment with dignity and discipline
CML treatment is centred around tyrosine kinase inhibitors (TKIs) – targeted medications used worldwide for over 20 years.
“There are several types of TKIs, each with its own benefits and side effects. Choosing the right one depends on many factors, such as the patient’s age, overall health, and any other medical conditions,” said Chang.
“Just as important is sticking to the treatment plan – timing really matters, and sometimes patients may need to adjust their mealtimes to make sure they take their medication regularly.”
For Najha, this became a daily discipline. “I take my tablets at 6am and 6pm, fasting at least two hours before. I plan my meals carefully so I can still eat dinner with my family.”
While treatment brought relief, it also came with challenges. “At first, I had bone pain, dull skin and hair loss. Over time, things improved, but it made me even more determined to one day be treatment-free.”
For patients like Najha, the ultimate goal is treatment-free remission (TFR) – the stage where they can safely stop taking daily medication with the disease under control. It means being able to live more freely, without the constant reminder of pills, while doctors continue to monitor their health closely.
“TFR does not mean a cure,” Chang explained. “It means patients who have achieved stable and consistently low blood-test results for at least three years may be able to stop taking daily medication. But it still requires long-term monitoring and commitment.
“Today, about 50% of CML patients reach the milestones needed to attempt TFR – a possibility unheard of two decades ago.”
For some, TFR offers freedom from side effects and the burden of lifelong treatment. Still, it is not a path for everyone.
“The decision depends on the patient’s goals, preferences and readiness,” said Chang. “And it works best when there are open communication and a strong doctor–patient partnership.”
Strength in community
Reflecting on her journey, Najha remembers the loneliness she first felt. “It seemed like no one understood what I was going through, so I’m grateful that I found a patient community in Max Family Society Malaysia.
“Now, I want to give back by supporting new patients who are scared and looking for reliable information.”
She has also made lifestyle changes by exercising more to reduce cardiovascular risk and staying positive with the help of her family.
Today, almost 10 years on, her perseverance is paying off. “My test results have been stable for more than two years, and I’ve been placed on the TFR waiting list at my government hospital,” she shared.
“I am truly blessed. Not everyone may see it this way, but I’m grateful to my family, my doctor, and the patient community for walking this journey with me. With their support, I’ve been able to stay focused on my goal of being treatment-free.
“Being diagnosed with CML changed my life, but it also gave me perspective. I’ve learnt that with the right treatment, guidance and support, you can live a life full of love, purpose and hope.”