That party didn’t last long. Just had my May scans and good news is: my body is in the clear! Bad news is my brain is not. Fan-fucking-tabulous.
But!... (and thank god there are “buts” to these stories)…we may have a solution. A new ROS-1 targeted therapy that gets into the brain. Okay, okay, now we’re talking.
I always knew there was a strong possibility that cancer cells could take refuge in the brain, since my drug could not get pass the blood brain barrier. They call it the “brain sanctuary effect.” But I sort of ignored that…out of sight out of mind? Well now it’s literally in my mind…how fucking ironic.
Now, at this point you know I’m not one to dwell on the why…I’m more one to dwell on the “let’s fix this now…purty please.” I have a few options and I’m pretty sure I know which one I’m going to go with…a new ROS-1 drug that is more potent and gets past the blood brain barrier. This new drug is in Denver with a ROS-1 expert (Dr. Doebele) and would be in a pill form like my Xalkori drug. My back-up tools include some form of radiation, but I’d rather hold off on that. College was too expensive to get crazy with brain radiation.
My docs/ team seem pretty confident in these new targeted therapies that are emerging, including the one I am going to switch to. So I guess my job is to just believe in it? I feel like the “Precision Medicine Era” has just begun and so far medical advances have kept up with me, let’s just hope that they continue to. Better yet, I should probably get my ass moving with raising funds for research just so I can keep these options coming.
So what’s next? Well, like my normal ridiculous self, one of my first questions to my doctors was, “Can I still go to Kauai for a week and then Chicago and then can we take care of business?” And they said yes! My tumor bulk is quite small and I don’t have any symptoms so we can scan again when I return and then make Denver plans.
I would move to Denver for a short while ...maybe a month? I honestly don’t know, but I am so glad it’s Denver because one, I get to live with Kels and B-don, and two, I love Denver. Breweries and hikes for days. And I may enroll in some bio classes while I’m there for some healthy distraction.
If all goes according to plan and this drug works beautifully then I still plan on getting a full-time job and being normal and boring.
So does this suck? Yeah. But in my head I have to think of this as a detour, otherwise I’ll go mentally insane. My nurse practitioner said, “We will get you over this pothole and back on track.” And my oncologist said “Just think of this as a new and improved Xalkori.” My oncologist, Dr. Reckamp, is amazing and was running around like crazy for 48 hours, before my appointment, researching the next best ROS-1 drug and I’m quite pleased she found something. You’re the best. Also shout out to Team Corey and the Bonnie J. Addario Lung Cancer Foundation fam and my LC peeps. I’ve got one hell of an army. Love you all. Talking to other young adults that have been through this has also helped tremendously. <3
Lastly, here are some nitty gritty deets for my ROS-1/ ALK peeps. The name of the drug is RXDX101 or Entrectinib. I’m doing the trial that doesn’t require measurable disease in the body (since I’m NED everywhere else). So far the drug is known to be more effective for ROS-1 than ALK. And it’s not just for lung cancer. Assuming that my enrollment goes smoothly, I’ll gladly share my experience with this hot new drug as far as side effects and effectiveness etc.
I’m surprisingly doing okay and just got back from San Francisco Bay to Breakers and leave for Kauai in 4 days with friends and fam. The day after my Hawaii trip, I’ll be going to Chicago for ASCO. Traveling is my best friend/ greatest distraction.
I feel the love, positivity, and support already. And for me, sympathy is nice, but encouragement is even better. Ciao.
I'm known for making very rational decisions after diagnoses. Right after starting Xalkori I went to Vegas. This time I opted for Bay to Breakers. Health at its finest.