Tomorrow morning I fly out for another Monday PET-CT scan at University of Colorado (CU) in Denver. Tuesday I start cycle 35 of Xalkori on my clinical trial (cycle = 4 weeks). If my Tuesday clinic visit reports a clean scan, I’ll be almost 30 months NED on this targeted therapy.
Because my injured left shoulder is so inflamed, I asked my oncologist if I should have a CT instead of the usual PET-CT this time (inflammation shows up hot on a PET scan), but he says he will just ignore that shoulder. Since I had a detailed MRI of that area a couple of weeks ago when diagnosing my shoulder problem, I’m not concerned a metatasis might be missed. I do wonder how my shoulder will feel after having my arms over my head in the scanner for over 20 minutes, but that’s not a big concern either.
While at University of Colorado, I’ll also be meeting with a CU communications staffer (to discuss cancer center public relations), a molecular pathologist (to discuss ways to explain benefits of genomic testing), and Lung Cancer SPORE members (to discuss a SPORE project). I’m really enjoying my work and friendships with all of them, and love getting to learn about cutting edge science from those who are doing the research. Alas, Dr. Camidge is away on travel, so I won’t get to work on any videos with him this trip.
Interesting projects are definitely worthwhile distractions at scan time. I’ve been so busy with lung cancer advocacy and travel (26 days out of the last two months) that I haven’t had time to feel any conscious scanxiety. However, I still haven’t packed, completed household pre-trip tasks, or written items with impending deadlines, and I’m moving slower than usual. I find myself having difficulty thinking beyond my next cup of coffee. It’s sunny and clear outside, but gray and fuzzy inside my head. So maybe I’m not yet entirely immune to scanxiety’s influence.
Then again, the brain fog could simply be lack of sleep due to Seasonal Affective Disorder (the sun is up 16 hours of the day right now in Seattle), time zone tango, and travel schedules. The source of the fog doesn’t really matter, I suppose, as long as I warn my family of its presence. Otherwise they may wonder why the dirty dishes are in the microwave instead of the dishwasher.
All best wishes to you on your journey. Your successful treatment is a beacon of hope for others and, as a Buddhist, I will think of you while chanting for continuance of good news.
I think of you as someone I like very much beyond the cancer.
I will be praying for you in Florida…very hot here now….and summer has just begun….
I am cancer free after beating the 4th time…jumped to my top lung after they took out the bottom lobe because it came back there too…still alive and well..they keep fixing me HOORAY..I wish everyone could be fixed. I hope I never get it back again. Wishing you good luck
Kathy Hanley from Florida
I think your journey is amazing. I do have a question. I have NSCLC Adenocarcinoma and a KRAS positive. I could not find what yours was exactly. I wish you well on this journey that we all are taking and not knowing where it leads.
Wow, 30 months of treatment? That has to be hard. But congratulations of 30 months NED. Would love to hear about your meetings with everyone. When is genome testing recommended? When regualar chemo doesn’t work? Hope your shoulder feels better soon. Safe journey!
Actually, I’m starting my 50th month of treatment. I’ve only been NED for 30 of them.
I have been on XALKORI since Feb. Only side effect is swollen legs. How about email@example.com
I have occasional swollen legs (edema), the cool strobing effect in my peripheral vision when I go from dark to light, and intermittent GI issues (constipation/diarrhea). It’s far more tolerable than chemo! Hope it Xalkori continues to work well for you!