Last updated: February 2023
First let me start by saying how grateful I am to have options. Although I wish the best option would just slap me in the face and say “Pick me!”
Time to make some decisions
My cancer is driven by a ROS1 mutation. It is very rare and represents about 1% of the NSCLC population. There is only one FDA approved drug for ROS1, Xalkori, and I’ve been on it for 4 years and 10 months. For an unknown reason, I am an exceptional responder and was NED (no evidence of disease) for over 4 years until last September.
Two axillary lymph nodes tested positive for cancer so we had them surgically removed in December. My recent CT scan showed 3 new small tumors in my right lung. They are very small, 6mm, but they’re there. It’s likely my cancer is becoming resistant to my wonder drug and I need to make some decisions.
Diving into the research
I immediately went into research mode and talked to several very knowledgeable ROS1ders and emailed several oncologists for their expert opinion. I love my oncologist, but he is not a lung specialist. I told him I’d like input before we make a decision and he is very open to their suggestions. Now I wait…..
I have received two recommendations and I’m waiting for one more before discussing what to do with my doctor. My options appear to be chemo or lorlatinib through an Expanded Access Program. This would require me to drive 4 hours each way for treatment. There is also a clinical trial that should be enrolling patients in the next few months, but not right now. This would be a 2-hour flight for treatment. In order to get into a trial my tumors need to grow to at least 10mm. Wait for them to grow? Ugh!
I realize I am not the average patient. I have been a dedicated advocate for those living with lung cancer for 5 five years. In that time, I’ve had the honor of meeting many great oncologists across the U.S. and I am blessed to be able to reach out to them when I need it. So many patients don’t have that luxury, let alone feel like they’re part of their medical team.
Weighing the options
The last few days have been full of endless talking, reading, and emailing to gather as much info as I can to take the next step. How do I choose when my 2 main options seem equally effective? We never know how we’re going to respond to a treatment, what if I choose the wrong one?
I try to always be optimistic, but I’m also a realist. The worst-case scenarios run through my head. I need to push those away and focus on moving forward. I really like my drug and I’m not ready to part ways with it, but I’m grateful I have options. Please pray we choose the right one.
What healthy habits do you use to improve the quality of your life?