Dr Andy Tang Sing Ong, Consultant Haematologist and Transplant Physician, together with chronic myeloid leukaemia (CML) survivor Azizul Adzhar, share how equitable access to treatment, monitoring, and specialist care are transforming CML from a once life-threatening diagnosis into a long-term, manageable condition.
CML: A Cancer Increasingly Managed as a Chronic Condition
CML is a slow-progressing blood cancer that affects the bone marrow and accounts for approximately 15% of all leukaemia cases.1 Unlike many cancers, it often develops quietly, with few symptoms in its early stages.
“CML advances gradually and many patients feel perfectly well at the beginning,” explained Dr Tang. “Because early symptoms are vague or absent, it is often discovered incidentally through routine blood tests that show abnormal white blood cell counts.”
That was the case for Azizul Adzhar, now 34, whose life changed unexpectedly in late 2018.
“I went for a routine blood test, and suddenly my whole world changed,” he recalled. “When the diagnosis was confirmed, I felt shock, fear, and confusion. I was healthy, active, and had no known family history of leukaemia. I kept asking myself, ‘How could this happen?’”
Early Challenges and Learning to Live With CML
The first few months following his diagnosis were challenging. During the initial period of investigation and treatment, Azizul experienced health setbacks that required hospitalisation, and his mobility was temporarily affected.
“At one point, I needed a wheelchair and had to take time off work,” he said. “That was a really testing time for me, both physically and emotionally.”
Dr Tang emphasised that while the early phase of diagnosis and management can be overwhelming for some patients, today, CML carries a very different outlook from past decades.
“With appropriate intervention and disease monitoring, most people with CML can have a similar lifespan to non-CML patients,”2 he said. “This is why we increasingly talk about CML as a chronic condition – one that patients can integrate into their daily routines, make long-term plans around, and in some cases, work towards being free from treatment.”
For Azizul, understanding the disease became a turning point.
“At first, I didn’t really understand what CML was, and that made my fear worse,” he said. “Once I started learning more, I became less anxious. I came to see that my condition was something I could take control of and move forward with.”
To support him on his journey, Azizul was introduced to the Max Family Society Malaysia, a patient advocacy group dedicated to assisting individuals with CML and other rare cancers. “Seeing other patients at different stages of their journey gave me confidence and helped me understand what was possible,” he said. “It gave me reassurance and courage. I knew I wasn’t alone.”
However, confidence alone is not enough. Living well with CML ultimately depends on having access to effective treatment and receiving ongoing care.
Treatment Access: The Foundation of Living Well
The backbone of CML treatment is tyrosine kinase inhibitors (TKIs), targeted therapies that block the abnormal protein driving the disease. A recent advancement within this class of medication is the development of Specifically Targeting the ABL Myristoyl Pocket inhibitors, otherwise known as STAMP inhibitors.
“TKIs have completely transformed CML outcomes, with up to 80% of patients achieving medical milestones that make treatment-free remission, TFR, a possibility,”2 said Dr Tang. However, access goes beyond medication alone.
“Outcomes for people living with CML depend greatly on access to regular blood tests, including specialised tests that detect changes in the cancer gene, as well as care from experienced specialists and a reliable treatment plan,” Dr. Tang noted. “Without these in place, even the most effective therapies may not deliver their full benefit.”
For Azizul, this meant committing fully to treatment from early 2019, guided by clear advice from his care team and supported by regular follow-ups.
Discipline and Everyday Realities
Living with CML requires sustained adherence and lifestyle adjustments. His treatment regimen demanded strict discipline that included fasting before and after each dose.
“This meant restructuring my sleep, meals, and daily routine,” he explained. “During Ramadan, it was especially challenging.”
For three consecutive years, Azizul carefully adjusted his fasting schedule, eating in the early hours of the morning, delaying his meals after breaking fast, and planning his day around prayer times so he could take his medication correctly.
“It wasn’t easy,” Azizul reflected. “But I knew if I wanted to get better, I had to commit to the routine.”
Over time, he regained confidence in his physical abilities. He returned to exercise, explored new sports, and gradually pushed his limits. “It made me realise that my body was stronger than I thought.”
Life Goes On, Even During Treatment
Importantly, Azizul did not put his life on hold. In 2020, while still on long-term treatment, he made the decision to get married after discussing his condition and future plans with his doctor.
“My doctor explained what I needed to know, and I was honest with my wife, then fiancée, from the beginning,” he said. “She understood the treatment routine I needed to follow and supported me unconditionally.”
These goals reinforced his determination to stay disciplined. “Knowing I could still make plans for my future gave me even more motivation to stay on track.”
Treatment-Free Remission: Progress Enabled by Access
Azizul’s discipline and the sacrifices he made brought desired results. In CML, consistency in treatment can lead to a deep molecular response (DMR), a state where the disease is extremely well controlled, with very low or undetectable levels of leukaemia cells in the blood.
Achieving and maintaining a DMR is what makes TFR possible. For eligible patients, TFR allows treatment to be safely paused under close clinical supervision while maintaining deep molecular remission and keeping the disease under control.
“About one in two patients may be able to try TFR, but it depends on how well they respond to therapy and whether they meet certain requirements,”2 Dr. Tang explained. “To be eligible for TFR, patients need to reach specific treatment goals, stay in deep remission for at least two years, and continue regular check-ups to catch any return of the disease early.”3
After four years of consistent treatment and regular testing, Azizul achieved TFR in 2022, allowing him to pause TKI treatment under medical supervision.
“When I was told I no longer needed to take daily medication, it felt incredible,” he exclaimed. “I immediately called my parents and my wife to share the great news.”
Beyond the emotional relief, stopping treatment also eased the financial burden of long-term care, an often-overlooked aspect of living with chronic cancer.
Thriving, and Giving Back
Today, Azizul remains under regular monitoring and continues to do well. Since achieving TFR, he has embraced life with renewed purpose. Last October, he completed a 21-kilometre half marathon and is now training for a full marathon.
“For me, finishing the race was symbolic,” he said. “Just like treatment, you won’t get to the finish line without discipline and commitment.”
He is now an active member of Max Family Society Malaysia, where he supports newly diagnosed leukaemia patients through educational workshops and peer-sharing sessions, drawing from his own experience to guide others.
“I can’t afford to be afraid anymore,” Azizul said. “I want to lend my strength to new patients. I want them to know that it’s okay to feel scared, but with commitment, support, and the right care, they can live well. TFR is possible!”
From Survival to Longevity
As CML care continues to evolve, Dr. Tang believes that beyond celebrating individual success stories like Azizul’s, there is a need to remove barriers and improve access to treatment for all patients.
“Equitable access to treatment, monitoring, and structured care pathways benefits not only patients, but the health system as a whole,” he said. “This means enhancing early disease control, supporting appropriate TFR adoption, and optimising resource use so that we can improve quality of life while reducing prolonged healthcare costs.”
The message is clear: for people living with chronic cancers like CML, thriving is possible, but only when access is inclusive, care is continuous, and systems across the broader healthcare ecosystem are built to support life beyond survival.
This educational piece brings together the lived experience of a CML patient from the Max Family Society Malaysia and clinical insight from a haematologist to highlight a growing shift in cancer care, from simply surviving to living well with CML and other forms of rare cancers.
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References:
- Wan Puteh SE, Mohamad Selamat E, Aizuddin AN, Tumian NR, Sathar J. Inequality in Drug Utilization among Chronic Myeloid Leukaemia Patients in Malaysia: A Cost-Utility Analysis. Asian Pac J Cancer Prev. 2022;23(12):4253-4260. Published 2022 Dec 1. doi:10.31557/APJCP.2022.23.12.4253
- Apperley, J.F., Milojkovic, D., Cross, N.C.P. et al. 2025 European LeukemiaNet recommendations for the management of chronic myeloid leukemia. Leukemia 39, 1797–1813 (2025). https://doi.org/10.1038/s41375-025-02664-w
- A Systematic Review on Second Treatment-Free Remission (TFR) Attempt in Chronic Myeloid Leukemia (CML): Can it be Applied in Clinical Practice? Çiftçiler, Rafiye et al. Clinical Lymphoma, Myeloma and Leukemia, Volume 23, Issue 1, 8 – 14
- Saifullah HH, Lucas CM. Treatment-Free Remission in Chronic Myeloid Leukemia: Can We Identify Prognostic Factors?. Cancers (Basel). 2021;13(16):4175. Published 2021 Aug 19. doi:10.3390/cancers13164175
