There’s a Game of Jenga at the Fork

It’s true. Strategerizing my way forward now is starting to feel like Cancer Care Jenga. Jenga is the game where you build a tower of wooden blocks, then, with thoughtful consideration (or not), pull the blocks out one at a time and restack them on top until the whole thing comes tumbling down. One decision affects the next decision and so on and so on. Failure to think through consequences and potential instability can cost you the game.  You see where I’m going.

I am just back from a couple of really long days talking to really smart people about what comes next for me. After more than two years of no news (was good news), we have news (that’s not awesome news, but has potential). To review: A lesion in my heart lining (pericardium) is now about 3.7 cms, about twice as big as it was at the beginning of the year. It causes shortness of breath, fatigue, pain during exercise (more on that coming up), and it’s kind of gross in the CT images. At least one small tumor is growing right into the opening in one of my vertebrae, pressing against the nerve, occasionally causing breathtaking pain that can usually be dampened with 600mg of Aleve. Twice a day. The story board had me getting proton beam radiation therapy  

for both the heart and the spine, then trying to get into a new systemic treatment program since the milciclib maleate appears to be less effective. (I told you this was coming. Some of you didn’t believe me.) Things went Jenga after that.

Dr G has no Next Great Trial for me this time. He is running an Anetumab study. Anetumab binds to mesothelin, a protein that’s over-produced in some cancers. Then, the Trojan Horse thing starts: Anetumab can enter a tumor cell undetected, leading to tumor cell death. His trial is even targeted to Thymic Carcinoma, BUT exclusion criteria includes more than one previous line of therapy and I’ve had three. His next promising trial for me MAY start in December. Over at the NIH, they’re running a mesothelin-targeting trial (which I also can’t get in to, same reason), but also a less restrictive trial that I AM trying to get in to. It’s a trial of LMB-100, a similar drug that acts the same, mostly for pancreatic cancer but also broadened to include Thymic Carcinoma. In other testing, TC tumors expressed mesothelin 70 or 79 (I can’t remember) percent of the time, so I have good odds of getting into the trial. One other thing I have working for me is that the Pembrozilumab (Keytruda) trial that I was on for three months before it gave me Diabetes may actually increase the good effect of LMG 100. Doctors have seen patients respond better to a second immunotherapy treatment, maybe because the immune system has been poked one time already. It supposedly works with chemo, too, but thankfully, that’s not on my table.

I also had a consult, etc at the (University of) Maryland Proton Therapy Center in Baltimore. I met with Dr Chuck Simone, who knows his way around Proton Therapy and, more impressively, Thymic Carcinoma. I really liked him and really everyone at the Center. All super nice and compassionate and upbeat. Dr Simone suggested cyber knife radiation for my spine tumors. It delivers 100-percent of the radiation to the tumor, and just a sweeping pass of radiation to everything else, which is a good thing since I’ve had radiation close to that area before. He talked about potential risks, and said he didn’t want to paralyze me, which made me burst out laughing and confused him greatly. He could do proton therapy treatment for the tumor on the heart, but would rather not. His opinion is to wait and see IF I get into the mesothelin trial and IF it would work quickly and IF it might shrink the heart tumor on its own, no need for radiation. I like the way he thinks.

(Also in our meeting:

Dr Simone: Which comes first when you run, the feeling of the stake through your heart or shortness of       breath.

Me: Stake through the heart.

Dr S: Ah, good…. Then you keep running.

Me: Well, yeah.

Dr S: I see what we’re dealing with.

So. I have a biopsy scheduled for a week from Monday. Results will come in Wednesday. I’ll start Cyber Knife radiation for the tumor(s) giving me back pain on Tuesday. If I get in to the trial, there’s a 2-week washout period for the body to clear both radiation and the milciclib. Then I’d go back to the NIH and start the trial, which requires me to be in MD for about 8 days, come home 2 weeks, go back 8 days, then I’m basically finished except for CT scans. If I don’t get into the trial, proton therapy is back on the table. I’d hope to add that on concurrently, but worst case, consecutively with the cyber knife treatment, and I could be there for up to another 5 weeks. I’d also have to start looking for another trial, maybe at IU in Indy. Maybe I wait for December and Dr G’s new trial. Maybe Dr Rajan and Dr Alewine have something else up their sleeves. If this, then that. If not this, then what? Welcome to my Jenga life.

How do I feel about all this? Blessed beyond belief. It’s often almost unbelievable to me that my friends, doctors, and former doctors will work so hard SUCCESSFULLY  to find me something that will work to keep the beast at bay. I’m thankful every day that I have the resources and the time (and reporter instinct) to chase down every lead. And I’m in wonder at how adaptable I am forced to be, and I’m ok with it. My previous life in Orlando was scheduled down to the last minute. It loosened up and got MUCH more spontaneous when I moved to Park City and prepared me well to slip into the Jenga lifestyle. I don’t know what’s ahead when I get back from shooting some stories for Ivanhoe in Portland and Seattle next week. But it’s all so interesting and it all moves forward. And, as my sister-in-law showed me after running her first marathon last week (Chicago), forward is a pace. #Defy #Forwardisapace

 

PS If I had any doubt about my Jenga revelation (I didn’t), it was validated at the Capitals game, which they lost to the dastardly Penguins Wednesday. #ALLCAPS

https://www.nhl.com/capitals/video/caps-play-jenga/c-53402703