My world shattered just days after I celebrated my 34th birthday with my husband and 3 year old daughter.
I woke up in the morning with a sore left shoulder, and felt a small unusual lump above my left collarbone. While the doctors in my family assured me that the swollen lymph node was probably a result of a chest infection (I had been coughing for a few weeks after all), they nevertheless sent me to have an ultrasound of the lump.
Two days later, my dad (a doctor) told me the most horrifying news of my life – primary lung cancer.
The next few days were a whirlwind of scans and tests, and an emergency surgery to drain 1.5 liters of fluid from around my heart. I found out that I had a very rare form of lung cancer caused by the genetic rearrangement of the ROS1 gene. I was relieved to learn that there was a targeted therapy (Crizotinib) available for ROS1, but it cost AUD$7,400/month for the medication as it is neither subsidised by the government nor private health insurance in Australia. I began treatment and celebrated the positive news at 6 weeks post-treatment that the medication had shrunk my tumours.
Unfortunately, celebrations did not last long as I received the unexpected news that my liver enzymes began to rise to a life-threatening level. I had to stop the medication to allow my liver to recover. Not taking the medication meant regrowth of shrunken tumours, and as my liver recovered my coughing returned. After several painful months of unsuccessful attempts to reduce dose to a tolerable level, I finally had to stop taking the medication completely.
My family and I were devastated.
I was blessed to have been accepted in a Phase 1 clinical trial for a new targeted therapy (Lorlatinib) opened in Australia for ROS1 NSCLC. Even though the trial is in another State in Australia, I have been flying there once every 3 weeks for over 1 year now to participate in this clinical trial. I am thankful that the tumours have shrunk and remained stable, and I have experienced very little side effects. While there are times when I wonder when my tumours might develop a resistance and worry about what treatment options might be available when that time comes, there are also times when I appreciate that living with these uncertainties constantly reminds me that life is not certain after all and it should never be taken for granted.