UAB and The Running People

Hey everyone!

Here’s an update on the phase 1 drug trial I am participating in at University of Alabama at Birmingham (UAB). I will warn you, it may be like reading a medical journal, but we have done our best to explain it in simple terms.

Nivolumab: is a monoclonal antibody, which is called a biological drug. Monoclonal antibodies are large proteins made by your body or they can be artificially created in a laboratory. Nivolumab is artificially created. It binds to and blocks a protein in your body called Programmed cell death protein 1 (PD-1). PD-1 blocks the activation of T-Cells, which is bad because we want T-Cells to be activated.

Basically, Nivolumab is the drug that gets your own immune system revved up; like how they turn an everyday Chevy Impala into an Impala with a nascar engine. I get Nivolumab, every two weeks, through an iv infusion at Birmingham. Which means we will been spending every two weeks in the Iron City.

Epacadostat: is a chemical drug that STOPS a protein (enzyme) in your body called IDO1. IDO1 plays a role in blocking your immune system. 

For example, when women get pregnant, their bodies try to fight off the foreign thing (the fetus) and would immediately abort it. The neat thing about the miracle of birth is that the fetus, at an early stage, produces this IDO1 enzyme that blocks the mother’s immune system from aborting the baby. So, if the fetus didn’t produce that enzyme, they’d automatically be aborted by the mom’s immune system. Cancer uses the same IDO1 protein to hide from the body's own immune system. Epacadostat is IDO1 inhibitor, which means it will, hopefully, tear down the cancer's shield and expose it to my revved up immune system.

Nivolumab is FDA approved for other types of cancer, but isn't for brain cancer. The reason being, most cancers, in other parts of the body, can withstand T-Cells (cancer fighters) rushing in all at once, but the brain has nowhere to expand due to the skull. This can cause brain swelling, which results in more frequent seizure activity, which results in more steriods, which results in halting the trial for a while. Whew, that is a set of dominos I surely don't want falling.

It is still in a phase 1 (out of 4 phases, with the 4th one being FDA approval), because combining these two drugs has never been done before, and I am only UAB's 4th glioblastoma patient. The novelty of it is exciting, but at this stage, they don't really know the side effects - I am their so called "test subject". They know it will most likely cause more frequent seizure activity and some rashes, but outside of that, they are still finding out the side effects.

So, with the knowledge of how all of this actually works, we set off for UAB for day one of the trial..

Recap of Day 1

We got to the hospital at 7am central time. First, they drew blood to have lab work done to make sure everything looked ok before I got my infusion. As we were waiting on the blood work results, we met with Dr. Saleh (pronounced Sah-Lee), who is the Doc running this trial. We like Dr. Saleh a lot. He told me, “I’ve been waiting to be famous for a while. I do think that you just may be my guy.”  :) You can totally tell he believes in this trial and has a lot of faith that it will help me.

After Dr. Saleh left and we got the green light from the blood work, I received the infusion of Nivolumab (pronounced nev-vol-lou-mab - finally asked the nurse how to say it). The actual infusion only took 30 minutes. I also had to take the other drug (Epacadostat) orally. I'll take this drug (3 pills) twice a day - so I'll be taking it with all of my other meds. I'll take it every single day. So, why are we here for 8 hours? Well, the first two times (Day 1 and Day 15) are long days because every two hours, they’re drawing blood from me to check/measure things like when the drug peaks in my system, etc… These measurements are strictly for the drug company.

The rest of the appointments should take around 3 hours. (30 minutes for the infusion and the rest is blood work and waiting on the results).

The first appointment was last Wednesday (5/4), and all in all, I feel great! It took me a few days to get to used to the new oral drug I take (epacadostat), but other than that, all is good. Dr. Saleh did say that it may take a few infusions for the Nivolumab to start working (since it is basically changing my cellular structure) and so I won't feel the possible brain swelling for approximately six more weeks.

So, that's kind of it in a nutshell, albeit a big nutshell!

If you are still reading this, I applaud you haha, but I do want to mention that our company, Bellhops, put on an AMAZING fundraiser for me, called Homers for Heroes. It was a bracketed home run derby, with 16 local businesses, that went off without a hitch. For all those who came, I can't thank you enough. The love and support from this community and surrounding communities is truly amazing. I am always in awe at how generous and kind people can be.

I promise, last thing, I listened to a book called Born to Run on audible, and it talks about this tribe in Mexico called 'the running people' or tarahumara. The book talks about how they can run for hundreds of miles at a quick pace and could (actually, proven in the book) outrun the top ultra-marathon athletes in sandals that they call huaraches . This little, poor tribe could have all the sponsorship money that the sport has to offer if they chose to run in the big ultra races. But they don't run in the big races. Instead, they live in little caves in Copper Canyon and choose to be like ghosts. Why? Because they just love to run. They don't want the attention or sponsorship money. They live a quiet life and depend on their community for survival. What's mine is also yours is their mentality, and it's ingrained into their being. If I have excess corn, it is also yours. If I have extra chia seeds, you take them. 

What an amazing thing to read about people like this that still exist in this day and age when consumerism is all around us. They are so selfless, when we are so selfish. The Tarahumara are more Christ-like than we will probably ever be. 

Philippians 2:3-4:  

"Do nothing from selfishness or empty conceit, but with humility of mind, regard one another as more important than yourselves; do not merely look out for your own personal interests, but also for the interest of others."

Whether it's the continued prayers or donations, you all have been like the Tarahumara to me and my family, and for that, we can't thank you enough.

much love,
Nathan


Here are some pics from the fundraiser:

Jack-a-roo

Me, Jack and Liz

Me and my Dad

The two guys on the ends (Brett Carroll and Branton Phillips) won it for us. Cameron Doody won the day by putting this whole thing together, which was a HUGE undertaking.

My sis and mom