Wednesday, January 21, 2015

The Fire Drill

The Preamble:
     For the past 22 months, I've been taking Xalkori, an oral targeted chemotherapy, to treat stage 4 adenocarcinoma of the lung caused by a ROS1 mutation.  Since being on Xalkori, cancerous tumors in my lung, liver and bones have not only regressed but have stayed, miraculously, stable.  I know this because every month I have blood drawn for tests which measure tumor markers, (CEA and CA19-9,) and every three-four months I have CT scans.  In the past, I've also blogged a lot about the uncertainty of how long Xalkori will work for me and how incredibly nerve-racking it is to not know when it will stop keeping my cancer at bay.  

      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 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.  




Tori Tomalia said...

Oh my, you scared me there for a minute. I'm so glad X is still working for you. I suppose a fire drill is good every once in a while!

Kris Patrick said...

So relieved for you!

Lisa said...

Oy - scared me, too! So glad it was just a lab error. I hope you learn lots in Colorado. xo

Luna O. said...

I know that You three know how these SNAFUs feel. Not to be a Pollyanna or anything, but in looking back on it, it really did feel like a practice run.

Anonymous said...

Great, but scary, read. This may be what it takes for me to get my head out of the sand having been on AZD9291 successfully now for 6 months. Gotta have a plan B ready.

Luna O. said...

Yup, Craig. You gotta have a Plan B, but it's so much easier to live with one's head in the sand. Great to know that AZD9291 is working well for you.