Najha’s CML Journey: From Fear to Advocacy

For patients living with Chronic Myeloid Leukaemia, every diagnosis marks the start of a journey, one shaped by fear, resilience, and above all, hope

For Najha Johari, a wife, mother, and insurance professional, her Chronic Myeloid Leukaemia journey began nearly ten 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.

The turning point came after playing with her young son, when 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 her fears: it was Chronic Myeloid Leukaemia (CML), a type of blood cancer that begins in the bone marrow and affects white blood cells. While not as common as other cancers, it is not as rare as many might think.

“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 had surged extensively - from 268,000 to 280,000 cells per microlitre of blood, which is more than 25 times higher than the normal range. The doctor told me delaying treatment even one day could put me at risk of a stroke. That was my wake-up call,” 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. That possibility kept me going.”

“In Malaysia, there are 300 to 400 new cases of CML reported annually, though the actual number may be higher due to under-reporting, especially among older patients,” shared Dato’ Dr Chang Kian Meng, Consultant Haematologist and Transplant Physician.

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 their 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. 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,” explained Dato’ Dr Chang.

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 without compromising treatment.”

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,” said Najha.

Treatment-Free Remission: A New Milestone

For patients like Najha, the ultimate goal is what doctors call Treatment-Free Remission (TFR) - reaching a stage where they can safely stop taking daily medication, yet the disease still stays under control. It means being able to live more freely, without the constant reminder of pills, while doctors continue to monitor their health closely.

“Treatment-Free Remission does not mean a cure,” cautioned Dato’ Dr Chang. “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, especially younger patients or those hoping to start a family, TFR offers freedom from the side effects and the financial or personal burden of lifelong treatment. Still, it is not a path for everyone. “The decision depends on the patient’s goals, preferences, and readiness,” said Dr Chang. “And it works best when there are open communication and a strong doctor–patient partnership.”

Finding Strength in Community

Reflecting on her journey, Najha remembers the loneliness she first felt. “At first, it seemed like no one understood what I was going through. Meeting other patients from Max Family Society Malaysia was such a relief. Now, I want to give back by supporting new patients who are scared and looking for reliable information.”

She has also made lifestyle changes, exercising more to reduce cardiovascular risk and staying positive with the help of her family.

Today, almost ten 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 said with quiet pride.

“I am truly blessed. Not everyone may see it this way, but I’m grateful to my family, my doctor, and the Max Family Society Malaysia 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.”

Embracing Hope Together

Living with CML is not just about medication. It is built on partnership, discipline and the belief that milestones come when patients and doctors work together.

“CML today is not defined by fear,” said Dato’ Dr Chang. “It is defined by commitment, resilience and hope. With discipline and support, patients can live long, full lives, and embrace each milestone with dignity.”

Najha agrees. “Being diagnosed with CML changed my life, but it also gave me perspective. I’ve learned that with the right treatment, guidance and support, you can live a life full of love, purpose and hope.”