Last Monday and Tuesday, September 8-9, I was in Denver for my clinical trial at University of Colorado Hospital (UCH). I had my once-every-eight-weeks PET-CT scan along with a once-every-six-months brain MRI.
I’m happy to report that both scans were clean. I’m now twenty months with No Evidence of Disease of metastatic lung cancer. That Xalkori is great stuff for those of us with ROS1 NSCLC!
I’ve been in my clinical trial for 22 months, and the trial has been running for over three years. The medical journal article summarizing trial results is due out sometime in the next two weeks. Judging from the response to Xalkori of several ROS1ers I’ve met online, I expect the news will be positive. Can’t wait to read it–I’ll probably hustle to the University of Washington Library and download it first chance I get. Yes, besides being a science geek, I’m an INTENSE science geek. One of those “complete response” lines on the waterfall plot will be ME!
The scanxiety for this visit was different than my previous visits to Denver. It’s been a very busy summer for me. As I posted previously, before flying to Denver I attended the Stanford Medicine X conference in Palo Alto September 4-7. I gave my speech on lung cancer stigma on the main stage Sunday morning, left the conference a couple of hours early to fly to Denver Sunday night, and had my clinical trial labs and scans Monday. I was so focused on the conference and my speech that I barely noticed any scanxiety –it was difficult to distinguish from the intensity that precedes my speaking publicly. The only real indication of any anxiety was my increasing inability to focus during the conference and three hours of lost sleep the first night in Palo Alto (although my husband might have a different perspective about my intensity in the days before I flew to Palo Alto).
A few other things were different about this clinic visit:
- On the day of my visit, I spent an hour talking with the American Lung Association of Colorado’s office about LUNG FORCE.
- A pleasant UCH oncology Fellow conducted my clinic visit. My primary oncologist Dr. Camidge came in to chat with us both for a few minutes afterwards–he knows I always have a list of questions for him. We talked about an exciting new clinical trial design at UCH for FGFR-positive NSCLC (more on that in a future post).
- UCH had recently installed new software for their MRI machine, so the report of my brain MRI was not available at the time of my clinic visit. However, Dr. Camidge and the Fellow both reviewed the scan itself and reassured me it was normal.
- After Dr. Camidge completed his clinic hours on Tuesday, he joined me, Dora (an online friend of mine who is also his lung cancer patient), and Dora’s husband Bill for a chat at a restaurant near UCH. How many world-renown lung cancer doctors do that? Well, yes, I did bribe him with a cup of coffee and a pastry. Here’s a selfie we took:
Something else was also new to me after this clinic visit. I had a headache after I arrived home. Since I’d just had a clean brain scan two days before, I knew the cause could not possibly be a brain met. Somehow this reinforced the feeling that I was more a normal person than a cancer patient at this point. Sometimes a headache is just a headache.
The brain MRI report appeared in our mail yesterday. It didn’t say much except “normal,” but a few terms were new to me. I was Googling the new terms when an infolinks box popped up with this message:
“Searching for T2 hyperintensities in white matter? Try Kelley Blue Book!”
Maybe Kelley Blue Book can tell me how my hyperintensities affect the resale value of my brain.