Thirty-three-year-old former customer care officer, Ms Looi, shares her journey with chronic myeloid leukaemia (CML) and how she regained control of life with her sister’s unwavering support.
For Life (FL): Tell us about yourself.
Looi (L): I am 33 years old and worked as a customer care officer in the private sector. My mother succumbed to lung cancer in January 2021, leaving behind my retired father, who is a psychiatric patient. I have a sister who is a year younger than me. She is my primary caregiver and my anchor.
FL: What symptoms did you experience that urged you to see a doctor?
L: In 2018, at 27 years old, I began experiencing severe stomach bloating, indigestion, and rapid weight loss. I attributed it to exhaustion and lack of sleep from balancing my full-time job and caring for my mother round-the-clock who had been diagnosed with Stage IV lung cancer a few months earlier.
Juggling work and caregiving duties had disrupted my eating and sleeping routines. I started to experience diarrhoea and occasional nose bleeds, with random bruises appearing on my arms and legs, without any signs of injury. These symptoms persisted for two to three months, and my sister became increasingly concerned and insisted I consult a doctor about my symptoms.
FL: How was your condition diagnosed? What treatments did your doctor recommend?
L: I decided to see a gastroenterologist about my diarrhoea. Upon examination, he noticed my spleen was enlarged. Concerned about the possibility of leukemia, he ordered an ultrasound and a series of blood tests. The blood results indicated abnormal cells consistent with chronic myeloid leukemia (CML), a less common cancer of the bone marrow and blood. I was promptly admitted to hospital for monitoring.
Subsequently, I was referred to a haematologist who recommended an oral chemotherapy medication to manage my CML. Unfortunately, the cost of the medication was too high, and my personal insurance didn’t cover it. The haematologist then directed me to a government hospital where I would be able to obtain the medication free of charge.
Upon arrival at the government hospital, I underwent bone marrow tests that confirmed my cancer was in the ‘accelerated’ or intermediate phase of CML. I was on the waiting list for the oral chemotherapy medication to treat my condition for six months, and during this time, I received basic outpatient care and had follow-up appointments with the haematologist every two months.
In July 2019, I finally started on the treatment. I continued to undergo regular bone marrow and blood tests to monitor my condition. Unfortunately, I suffered some side effects from the medication, including loss of appetite, vomiting, and an enlarged thyroid.
FL: Did you suffer any further complications to your condition?
L: In July 2021, I started to experience severe and sharp pain in my bones, especially my back. My face turned slightly yellow, and my sister and I suspected it might be jaundice. However, tests to assess my liver function returned normal results. A further round of blood tests, ultrasound, and magnetic resonance imaging (MRI) scans, revealed that there were stones in my gallbladder that were responsible for my back pain. This was another side effect from my chemo medication. Fortunately, my gastroenterologist was able to remove the stones in a laparoscopic procedure, so I didn’t have to undergo major surgery.
A few months later, I developed intense migraine-like headaches and vertigo. At first, I attributed it to side effects from the COVID-19 vaccine, as I had just taken my second dose a few days prior. However, as the headaches persisted, I underwent further investigation with the Ear, Nose and Throat (ENT) specialist and cardiologist but tests came back normal.
I later underwent a blood test, MRI scan, a computerized tomography (CT) scan of the brain, and lumbar puncture, but none of these showed anything abnormal. Days later, I underwent another brain CT scan, full-body MRI, and a lumbar puncture deep into my bone marrow. The results confirmed my fears that my cancer had spread to my central nervous system near my brain. My CML was classified in the ‘blast’ or advanced phase.
FL: What happened next? How has your cancer and treatment routine affected your life (work, family, social, etc)?
L: Following my latest diagnosis, I was prescribed four cycles of intravenous and lumbar chemotherapy. I commenced my treatments in March 2022. Things appeared to go smoothly until the third cycle of the treatment, when the lower part of my body started to experience weakness, causing mobility issues. I was no longer fit to work and had to go on long medical leave. I was very grateful my employer continued to employ me even through my hospitalisation.
In addition to developing ulcers in my mouth, I also suffered from a month-long fever due to lung infections caused by the chemo port that had been implanted into my chest to deliver treatment. In just three months, I was admitted to the hospital about five times not just to undergo the treatments but to manage side effects arising from them.
After my fourth cycle of chemo, I was advised to undergo a bone marrow transplant and started to look for a donor. Luckily, my sister was found to be a high match (50%) and she was willing to donate her bone marrow to me, despite her fear of needles. The transplant procedure took place on in April 2022.
Following the procedure, my treating physician prescribed me a novel oral chemotherapy medication to manage the blast phase of CML.
FL: What is your outlook on life and what are your hopes for the future?
L: I’m so thankful for my sister’s support throughout my cancer journey. We both believe in staying positive, and we’re optimistic things will improve. If my cancer stays manageable, I’d love to learn new skills, like picking up a new language and crafting. I also hope to share my experience with other cancer patients.
Photo courtesy of Ms Looi.
Following a long and courageous battle with cancer, Ms Looi passed away on 20 December 2023, at the age of 33. The For Life team expresses our deepest condolences to her family and loved ones.