Last September Wynn and I flew to Boston for a patient forum to learn about the next steps in lung cancer treatments for folks with ROS1 mutation driven disease. The information we learned was supposed to be the foundation to build the framework for a plan - what I need to do the day I learn that Xalkori is no longer working. Since I returned from Boston, things have continued to go well for me. So well, that thoughts of formulating a concrete plan started to drift from my consciousness.
The Fire:
The results from my January tumor marker testing returned last week. The CEA value was normal at 2.5 ng/mL, but my CA19-9 was 2409 U/mL, (normal is anything below 35 U/mL.) In the months of September through December, my CA19-9 values were 10-15 U/mL, so 2409 was an alarming rise. My oncologist called me at home, in the evening, to let me know. His first suggestion was to repeat it, as soon as possible, because he was concerned about a lab error. He told me that this elevated value wasn't consistent with the normal CEA result nor my reassuring CT scans, done just 8 weeks before.
Hearing that my CA19-9 was 2409 left me speechless. My heart fell to my stomach. I found it difficult to tell Wynn that there was a possibility that my cancer had started to return. Despite knowing that this day would one day come, we were so sad. I said to Wynn, "I'm afraid." He said to me, "What can I do to help?" (I love my husband.) I didn't sleep well that night thinking about how I'd meant to have figured out a plan, but had procrastinated. I started my "To Do" list somewhere between 2:00 and 4:00 AM.
The next day, after stopping at the lab, I went to work. It's good to work at the hospital where I get my care. At lunch time I walked to the Interventional Radiology office. Knowing that if my cancer was growing again, I'd need another biopsy, I stopped in to ask how big a tumor needed to be for an accurate biopsy. The interventional radiologist pulled up my most recent scans and said that 8 weeks ago there would be nothing he could "hit" to biopsy because the tumors were too small. He recommended repeat CT scanning if my second CA19-9 confirmed the 2400 value so there could be clinical correlation between the blood tumor markers and the size of my tumors on imaging. In general, I learned, a biopsy would have to wait until a tumor had grown to at least 1 centimeter in size.I reviewed my notes from the Boston patient forum. I had written in the margin, "Make consult appointment with ROS1 expert." A couple days ago, I contacted one of them, and have started making plans to travel to Colorado to see him in the next few months.
From the time I learned that my CA19-9 was 2409 until I learned the results of my second blood test was nearly 2 days. (It felt like 2 years.) It turned out that there was a lab error. My doctor had my second blood sample sent to two labs for retesting. One to the original lab and the other to another reference lab. Both returned within normal limits, 25 U/mL and 18 U/mL.
The Drill:
I now realize that doing well on Xalkori had lulled me to a place of inertia. I had some vague plan about making a plan, but not until I thought I was in trouble did I actually start talking to key people and asking necessary questions. So, even though it was stressful having to wait 48 hours worrying whether or not my cancer was active again, it lit a fire under me...it was the heat I needed to feel to remind myself that I had work to do. I now have some idea how I'll feel when I'm told that my cancer is really growing again and I am on track to gather important information I'll need to take the next steps, without wasting time. This last round was a practice run...a fire drill, of sorts. 
