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, who is a doctor, told me the most horrifying news of my life – I had 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 subsidized by the government nor private health insurance in Australia. I began treatment and celebrated 6 weeks later that the medication had shrunk my tumors.
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 tumors and my coughing returned. After several 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. But then I was blessed to have been accepted into a Phase 1 clinical trial for a new targeted therapy (Lorlatinib) that 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 almost 18 months now to participate in this clinical trial.
I am thankful that the tumors have shrunk and remained stable and I have experienced very little side effects. While there are times when I wonder when my tumors might develop a resistance and worry about what treatment options might be available when that time comes, most of the time, I’m just grateful. I appreciate that living with these uncertainties constantly reminds me that life is not certain after all. Life should never be taken for granted. It is a momentary gift.