Sunday, February 22, 2015

NED Deets, Emotions, & Mardi Gras...your typical cancer components

Nitty Gritty Deets
Most of you know that I had my second scan February 9th and received a phone call that same day telling me I'm NED, No Evidence of Disease, aka clear scan. "Great job, Corey...your cancer appears to be missing." Why thank you doc, you just gave me a reason for a lifetime of celebration. Cheers.
Now, my first scan in mid-October (2014) was almost clear. I know, weird way to put it, but a spot on my knee lit up that we didn't think was cancer at the time, and we still don't think was cancer, but nevertheless I couldn't officially declare NED. 
But now I can! Get at me NED! Woot woot.

"Mom, give me your 'I'm so excited it's NED face.'" Spot on.

After this last scan, my oncologist even said that further down the road we can consider putting more time between scans......I never in a million years thought she'd say that. Quite pleased. For me it reinforced that she is confident in my future. 

Medical Deets for my ROS-1-er's and ALK cousins
 I take Xalkori (aka Crizotinib) twice a day, at the lower dose (200mg pills). I don't experience any major side effects. Maybe some bloating, but what girl doesn't. Exercising a lot + the Xalkori has lowered my heart rate, which constantly freaks out the nurses, (I'm at 44 bpm), but my doc said as long as you don't pass out we're keeping you at this dosage. Sounds good.
There has been some consensus that Xalkori is a better inhibitor for the ROS-1 pathway than the ALK pathway, the genomic alteration it was originally created for. So, I will happily stay on Xalkori to keep my cancer in remission but will keep up to date on the latest next generation drugs. 

"You're a'making me cry!"
It's crazy to reflect on the emotional roller coaster this cancer journey has taken me on. I didn't admit it out loud in the very beginning, but I wasn't sure I'd reach NED. You constantly have two sides chatting in the back of your mind..."Cor, you're definitely going to reach NED. You are going to find the right treatment at the right time and you're going to be okay." vs. "How the f*ck did this happen? I'm not going to test positive for a mutation...NED may never happen." Luckily for me, the positive thoughts started to completely eat away the negative thoughts once we figured out my treatment, and especially after the first scan. But, there's no denying that that first month was insanely hard. I remember looking at my parents asking them to keep telling me, "It's going to be okay. Yes, we will get rid of the tumors. We will find an answer." Having family and friends reinforce the positivity helped immensely. So thank you.

Next chapter please
Mom and dad, I love you, but now it's time again for me to move out and move on. Funny that I got a degree in Conservation and Resource Studies and Anthropology, when now all I want to do is work in the cancer world. 
I want to interact and help other patients with cancer, especially right after their diagnoses, when they have to do a crash course in cancerville and navigate through the latest breakthroughs.
I want to meet every youngster diagnosed with lung cancer and tell them that it's going to be okay. I can remember my first interactions with EmBen (fellow stage IV lung cancer survivor). Before I even met her, she told me through an email that I was a survivor and that I was going to be okay (and this was before we knew what my treatment would be...solid prediction Em). 
I want to meet every young adult diagnosed with cancer and give them a survival bag the day after they're diagnosed: Kris Carr's Crazy, Sexy, Cancer, Erin Zammett Ruddy's My (So-Called) Normal Life (<she even stopped her targeted therapy temporarily to have kids, brave), and a list of local Stupid Cancer meet-ups.
The unknown is the hardest part. You have to brave the internet in search of an answer, which means facing mind-numbing survival rates. Once you figure out what your treatment is though, (for me it was a phone call telling me I'm ROS-1 positive), you start to feel that life goes on. 

Oh yeah, and I survived New Orleans Mardi Gras. Call me a double survivor. (proof below)

After Nola was Boston, where I met Foundation Medicine's incredible, and extremely dedicated, Sales Team.
People, (mostly other physicians), always ask me how my first oncologist, at a local community hospital, knew to submit my tissue for genomic profiling at Foundation Medicine. I finally figured out how. I met Michelle, the FM representative who told my oncologist about the Foundation One test in the first place. Talk about coming full circle. 

As always, thanks fam and friends for all your loving and support. <3 <3 We're still winning. Current score: Team Beastie Girl/ Corndawg/ Cor/ Koko= 200,000 points. Cancer= negative 300,000. 


  1. Corey, a belated congrats on being NED! Funny how I keep running into that when I go to my favorite blogs... Could ATTITUDE be part of the reason?

    I've nominated your blog for the One Lovely Blog Award. You can get full details at my website,, February 9th entry.

    Now that you're NED, don't forget about us. Keep writing! You still have more to say.

  2. Dan,
    How have I not seen your blog until now!?
    Your attitude is seriously contagious. I love it.
    and thanks for the nomination.
    I will definitely be keeping up with you.