Patient Spotlight: Vangie Lim, Gold Coast, Queensland, Australia
We interviewed member and fellow ALK patient, Vangie Lim, about her journey with lung cancer and her experience participating in a unique clinical trial that is currently only open in Australia. Vangie is also very active in advocacy and is the founder of The Evangeline Lim Lung Cancer Foundation, the first lung cancer nonprofit in Australia to be founded by a patient, aiming to promote lung cancer advocacy and research and to provide patient support.
1. Can you tell us a little about your journey with lung cancer?
I am on my fifth year in my lung cancer journey. I consider myself very lucky as Crizotinib was available in Australia when I was diagnosed and when I progressed after 14 months, Alectinib had just been approved. The Alectinib benefit only lasted 22 months, and as my luck continues, there was a trial on Lorlatinib alternating with Crizotinib, in which I enrolled. It has been 15 months now and I am hoping for many more years in the trial. The side effects have been minimal on all TKIs so far.
2. You are enrolled in the ALKTernate clinical trial that is currently only open in Australia. This is quite a unique trial in that patients alternate treatment between a 3rd generation ALK inhibitor (Lorlatinib) and a 1st generation ALK inhibitor (Crizotinib). Can you tell us a little about what it entails and what prompted your decision to enroll in it?
The aim of the study is to use two drugs to delay cancer progression. Rather than waiting until one of the medicines stops working and then switching to another, we alternate (switch back and forth) between Crizotinib and Lorlatinib in a planned way throughout the study. Apparently, new research has suggested that switching back and forth like this between the two drugs may lengthen the time for which Lorlatinib keeps working and may prevent the cancer from becoming resistant to the new drug.
I decided to join because I wanted to be handled by a team as well as by someone studying ALK lung cancer rather than an Oncologist who does not specialize in my particular cancer. I was also hoping that alternating would help me stay on Lorlatinib longer.
I also wanted to be connected to other medical specialists who I may need later, like Radiation Oncologists. I need the best of the best to save my life!
3. Do you feel that participating in this clinical trial has changed the course of your disease? What would you say are the biggest advantages and the biggest disadvantages of participating in a clinical trial?
The disadvantage is that it costs money, time, more exposure to radiation and carries some risks. I did not have brain mets when I joined, but I have one now (maybe it’s because I was on Crizotinib alone for a month??). On the other hand, is it a sacrifice that may be well worth it if I get to stay on Lorlatinib longer? Only time will tell. I also have the advantage of taking a break from Lorlatinib side effects, like getting rid of my body fluid/weight.
One of the advantages of being in the trial is that I am being monitored more closely. They make sure I get the medical attention I need when I’m in trouble as soon as possible. They helped me when I had pleural effusion in the beginning and when I had brain mets.
4. What would you like the ALK community to know about participating in clinical trials? Have you found there to be any misconceptions about clinical trials, and is it something you would recommend an eligible patient to consider
I definitely recommend enrolling in a clinical trial if it is the right one for you. You get to meet the specialists who may help you now and/or in the future. This is my first trial and my medical team has been so good to me. I feel that I am in good hands as opposed to a 15-minute consult where the Oncologist closes my file and may not think about me anymore.
Let us hope that we are all in good medical hands.
Interview by: Christina Weber