New Pill, New Job, New Me (jk, same me)

How is it 2019!? And how am I still here? Science baby! Which reminds me, I need to raise more money for our ROS1 Research. Or if you're feeling frisky and want to donate, click here: https://www.supportalcf.org/ros1/corey. It's good karma! And helps keep me alive :).

So it's been a while since we last talked and that's mostly because I unpublished my blog, lol? I was running into employment problems and couldn't risk the possibility of an employer googling and thinking, "hmm, do I really want to hire a cancer patient." Sad but true. Good news is I found a job! And they were already completely aware of my situation and they still wanted me! Go figure. And I am beyond excited to start it.

Alright, let's get to the juicy stuff aka what drugs am I on now (well, it depends on the night. jk jk). The answer brings another piece of good news! My tumors are shrinking & disappearing and it's oh so fun! After chilling with tumors for I think close to 3 years, they finally started to grow. It was awful. Probably my least favorite summer. To those that helped me through it, I love you more than you'll ever know.

Here are the dirty facts for my fellow cancer friends: I tried Brigatinib round April/ May '18 and it did not work. I should point out that I'm ROS1. Also, I did a Guardant test around April 2018 and it found I was ROS1 F2004V. Dr. Doebele had not heard of this variant yet but I think he wrote a paper on it. Trial and error is not that fun when it comes to testing cancer drugs but luckily the next one worked...

Lorlatinib! Or its new brand name is Lorbrena. Here she is.

It wasn't approved until recently, Dec. 2018 (or maybe November), so Dr. Ou was my saving grace (again) when he told me he had an opening in his clinical trial at UCI during the summer of '18. This meant flying to CA once a month ($ cha-ching!), getting the drug, and seeing the parentals, which was overall nice, especially once I found out it was working...which was right before the worst. scanxiety. ever.
Side effects are minimal compared to Entrectinib, at least for me. Everyone seems to be different. I have some fatigue and maybe a little cloudiness of the brain but I've still got it! I also quickly lost the weight I gained from Entrectinib which is nice. One side effect that almost everyone I know that's on the drug has is increased cholesterol. Dr. Ou said I could either go vegan or take Atorvastatin and he said this while laughing which I don't know why but I just love that. You may have guessed I went the Atorvastatin route.

This is the first time I've been on an FDA approved targetted therapy in years which naturally leads to..taking a trip to Europe! See ya later!

And before I go, here are pics of my friends who treated me in 2015 and 2019. <3 (still need to get a pic with my Colorado/ Anschutz squad)

Nurse Joni

Dr. Ou