Texas Forever? Not Now

But not really. Let’s see where do I start. I had my most recent infusion- lucky number 7.

This one seemed to hit a little harder, I guess the medicine is accumulating but still okay. Side effects are all the same with cramping currently sitting a top the leader board. But I know that as I write this some new cool side effect will pop up so I’ll keep you posted.

Let’s start with some good and back up a bit. Last year I had an eye exam and it was pointed out that I had a spot or freckle in my eye. (Didn’t know that was a thing did you?) Well it’s still there but the size hasn’t changed so it’s another thing to monitor but no one seems concerned so that’s good?

Anyways the big news this time was around Texas. To recap- the plan was to wait for my scan in December and reevaluate where I’m at. If there was continued growth and we felt that the medicine wasn’t doing its job I’d be traveling to MD Anderson in Texas for a new plan.

Well my oncologist figured he’d save me a plane ticket south and actually spent some time communicating with MDA. He spoke with their generally oncology, kidney cancer center and they also met to discuss me as a case study.

Yay. So while I’m grateful for my MDA board room fame and not having to fly to Texas now I’m not sure the news is all that great. I’ll try my best to break it down:

• Currently: On Opdivo infusions once a month and daily Cabometyx pills

• If the current treatment doesn’t work we have a few next possible steps.

• Plan B: Bevacizumab aka Avastin plus Erlotinib aka Tarceva.

  • Avastin aims to starve the cancer and prevent growth. It’s administered via IV.

    • Frequency and duration TBD.

  • Tarceva is a daily pill that is “a first generation, selective, reversible inhibitor of the epidermal growth factor receptor tyrosine kinase binding with high affinity to the common mutations occurring.”

    • Pretty sure we all got that, no explanation needed.

• Plan C: Lenvatinib aka Lenvima plus Pembrolizumab aka Keytruda.

  • Lenvima is a daily pill that is a tyrosine kinase inhibitor aimed to prevent cancer cells from growing and spreading.

  • Keytruda is administered via IV every 3 or 6 weeks and is immunotherapy that essentially ruins a cancer cells hiding spot.

• Plan D: Brigatinib aka Alunbrig. This drug is a lung cancer drug not tested yet for kidney cancer.

  • Daily pill that may have promise to target my specific genetic mutation of my cancer.

  • I didn’t read too much after that as there were statistics for survival and those can be pretty traumatic, soooooo no thanks buddy.

  • The catch here is that since there is no clinical trial or proven effectiveness against kidney cancer, insurance more than likely would not cover this drug. Good news is I can score it for the low cost of $15,000 a month!

LET’S HEAR IT FOR AMERICA!

So this is good bad news. Not my favorite appointment but I do appreciate the extra leg work my oncologist did. I look at it from a high level and very simplified- Plan A is usually your best plan, so turning to subsequent plans is not really a good sign…?

It is what it is or whatever cliche thing I’m going to tell myself to ignore any panic attack inducing thoughts. I get to do that one thing I love most in the game of cancer- sit around and fuckin wait.

Sometimes waiting is good but for this…..

So that’s the update. Not great, not horribly, just what it is. I’ve been trying to find peace where I can- music, writing, talking, orange skies in the morning- and it’s worked to some extent.

But that’s it today folks.

-Joe