Hungry for Life

Many of you know that I recently went on my First Descents kayaking trip. Rather than describe the experience in words, I'm going to attempt via pics.
Just know that First Descents is an organization that brings together young adult cancer survivors (aka the most incredible people you will ever meet) for a week of white-water kayaking (or some other grand adventure).
And if you really can't stand a story without words, here are the words I wrote down on the plane home to capture the feelings (picked up this habit from Tanzania...when I was too lazy to write a journal entry (so everyday), I would write down a few words or bullets.)

G-String, Snaps, Stoner, Creamed Corn, This Guy, Stitch, Smooth, Patch, Irish, Homewrecker, Mama Bean, Chef Vigetti, Chef Winks, Mayor, Rut-Roh, Bun Buns, Gnomeo, Squirt, Blunt, Omlette, T-Cell, I love you all. 

One of the worst side effects from cancer that no one warned me about is a sense of loneliness. You guys erased that and make it so much easier to go through this as a single youngin. Such a magical week of adrenaline, laughter, happiness, and love. 

Holy rash almighty.

Below is a graphic image for mature audiences only. Consider yourself warned.

Did your screen break?

Now the rash is completely gone. I REPEAT IT'S GONE and not contagious. But how bad was that? I know I'm being dramatic but I've never had hives before and that was god awful and beyond itchy.

It only lasted about 3 days and started to disappear after I took steroids, but we don't really know what it was from. Top contenders for cause: 1) my new drug 2) a new pho place I tried (I'm not making a joke here. I seriously am leaning towards the pho as the cause). I am still on my drug now and have no sign of a rash, soooo que? nini? what?

Entrectinib looks good so far. I had a scan after a month of taking the pills and everything looked the same...so it stopped tumor growth and I'm looking for some shrinkage (mind out of ze gutter) in the following months. Dr. Ou says he is happy so far, so I'm happy. 

Side effects include fatigue, constipation (why do I always get the constipation side effect!), sore mouth (<weird one...sometimes it feels like I've been chewing all day but it doesn't hurt at all), and sensitive skin (give me dat sunscreen). I just got stimulants to get rid of the fatigue feel and I luvv them. But I don't take one everyday. You know I like you when I take a stimulant for you...just kidding, don't ever believe that. (But do know that I love you when I take a stimulant and a laxative for you.) 
I will admit this drug is not for the faint of heart, but what cancer treatment is?

Having too much fun at the 8 hour blood draw day. My hospital is across from a mall so I would literally go back and forth between a blood draw and shopping, with the catheter thing hanging from my arm, no shame. But those days are done, yeah! 

Now some sad news. I had to make a last minute switch from the full marathon run to the half marathon last weekend. ;(((. My most recent blood draw showed that my red blood cell count (hematocrit) was too low to do the full. I sort of wish I knew this before I did the 20 mile training run. Health comes first so I had to play it smart and downgrade to the half. To those of you who donated to my Addario Lung Cancer Foundation Crowdrise fundraiser page, THANK YOU THANK YOU  THANK YOU. You make me feel so special and give us lung cancer survivors such hope for this disease and future treatments. So much is happening in lung cancer treatment right now. Let's keep the acceleration going. Again, it gives us so much hope..especially for us youngings who like to have lots of drug options laid out. Together the SF Marathon ALCF team raised over $18,000 for lung cancer research. WOOT WOOT.

Video of the weekend made by the talented Bunny Ethan Sanchez.

https://www.youtube.com/watch?v=2Q6lEskT6Oc

Peace, lovin', & J Boogs.

Ps. Next on fun trip list: Oregon for a week long First Descents white water kayaking trip with other young adult cancer survivors. #cancercamp #round2 !

Short, sweet, sassy update: picked Entrectinib

I have decided. Very rare words to escape my mouth.

I am switching targeted therapies! I am going to switch to Entrectinib (aka rxdx-101) that is available at UCI with Dr. Ou. We’re feeling quite confident in this drug and I expect smooth sailing. But! I have back ups too. Dr. Ou has two other ROS-1 inhibitors that also get pass the BBB, so that’s comforting (PF-3922 & one from Daiichi Sankyo<from Japan, may be more promising than 3922, we shall see).  For those of you late to the game, I am leaving crizotinib aka xalkori because although it was very effective at clearing my cancer (still clear from the neck down), it does not get into the brain and I had a pleasant little guy pop up on my last brain MRI. I could have done some form of radiation to take care of it, but I like the idea of covering everything by switching to Entrectinib.....And, fun perks, I probably won't experience bloating or heart rate drops on this new drug. 
Dr. Ou is a fellow golden bear…roll on you bears…and is fantastic/ genius. If any of you ROS-1er’s out there (regardless of cancer type) are considering a drug switch, I’d be beyond happy to share the new info I gained from Dr. Ou on ROS-1 inhibitors.

Since it is conveniently available 20 minutes from my house, I don’t have an excuse to go to Denver…boo.

More updates: I am now 84% sure I am doing the full marathon in July….I told you decisions are not my forte. I just applied for a job in Palo Alto…fingies crossed. Kauai was AMAZE. ASCO in Chicago was CRAZE. And life overall is pretty good. I’m feeling very detailed this morning.

Health wise I’m fairly pleased because I keep having options pop up and options are good, options are very good.

K BYE.

Good news! Say what?!

Oh, what fun it is to ride on this twisted f'ed up train! New children rhyme.

So...today I met with a neurologist (gamma knife specialist/ brain surgeon) to go over my brain MRI. And good news kids. He said the original radiologist "was quite generous with the amount of tumor in your brain." Case in point, one of the "tumors" is in fact a vein...he was able to trace it via two different scan angles side by side. Am I in the clear? No. There's a spot that is for sure a very small tumor. But he said he can gamma knife (target radiation) it with over 90% success. And if these other suspicious spots grow, indicating they are lesions, he can do the same. But overall he made my heart soar by telling me I'm actually in a pretty good place. And I have more options.

I’m leaning towards his interpretation of the scan since he has been studying them for 20+ years. I had no idea they were that hard to read.

I can stay on Xalkori and zap any brain spots. Or I can switch to that newer, more potent drug in Denver that gets into the brain. Fun part is, I have some time to decide. I'll do another brain scan the last week of June to better decide what is a lesion and what is not. Then we can formulate a plan. He said I won't be in danger anytime soon. Woot woot.  

What I cannot do is run marathons. Boooooo. I've been training to do the San Francisco July marathon, but he flat out said no. Aitey doc. I told him if he finds me a job that won't be a problem. I tend to only obsessively work out when excessively bored.

Cheers sistas and brothers. I love to keep it interesting. The plan is to be continued. Kauai in 2 days. Peace.

Practiced my modeling while waiting for the famous neurosurgeon for an hour and a half.

Initiate round 2 drug. Ding ding ding!

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.