Saturday, September 19, 2015

I'm winning this war.....

This was a pretty big week for me.

I will start with the clinical information about "The War"

So I had a CT Scan on Tuesday and I got the results back on Wednesday.
50% overall reduction in cancerous tumor size!!!!!
Dr. Eaton was very pleased and surprised with this progress.
I reminded him that I am no ordinary fella, and I am am here to "Kick Ass and Take Names".

Pulmonary Embolism:
The blot clot in my lung has dissipated, it is gone.
Despite this finding I will continue to have to give myself a shot of Luvonox daily to prevent any further clots from happening in my body.  I still have to watch myself to avoid getting into any situation in which I might bleed because my blood wont clot right now, and a small thing could become life threatening.

Speaking of clotting... Platelets are the component of your blood that allows it to clot.
My platelets were low this week, too low for me to get chemotherapy.
Dr. Eaton pushed my chemotherapy back to next week to give me a chance to recover.

Red Blood Cells/Hematocrit:
As it turns out chemotherapy messes with lots of things.
Red blood cells carry oxygen throughout your body and chemotherapy causes havoc here.
The results of my blood work showed that my hematocrit level was down to 24%.
This is 21 points down from my normal 45% and is the magic number for a blood transfusion.
Thursday morning I went back up to SCCA and got a unit of blood... man do I feel better after that.

Genetic Mutation:
A really exciting piece of news is that the results came back from genetic testing of my tumors and it turns out I have the mutation: CD74-ROS1 fusion.
In the words of my oncologist "This is good news." Only 1-3% of adenocarcinoma patients have this mutation.
The best aspect of this news being that it is 'actionable' with a drug called Crizotinib. Approximately 70% of patients with this mutation have a prolonged positive response to Crizotinib. 
This will be another weapon in my back pocket for t
he fight.

Whats Next?
Per the protocol for the clinical trial that I am on, my treatment for the next phase will take me down to just 1 type of Chemotherapy (Pemetrexed).  I will stay this course for the next 6 weeks; then I will have another CT scan.  If things are continuing in a positive direction I will continue with the Pemetrexed until it is no longer effective. 
Once Pemetrexed is no longer working we will make the choice between the clinical immunotherapy drug MK-3475 or Crizotinib (mutation drug).
Here is a quick review of the immuno-therapy drug: MK-3475 Video

Mountain Bike Ride:
One big part of my week was a mountain bike ride on Monday with some friends down in the Portland area at Sandy Ridge.  After I had planned this ride several weeks ago, I realized I was probably in over my head with regards to my physical limitations and the effort required.
                          Nevertheless.....I'm a knucklehead so I went forward with the plan.
In the parking lot at the beginning of the ride I informed my homies that I was in doubt of my abilities and that if at any point I said I needed to turn around, there was to be no argument and that they were to continue without me.  I thought this was agreed upon . . . 20 minutes and 3/4 of a mile into the 3.5 mile climb, I knew it wasn't gonna work out for me.  Little did I know that my hematocrit level had dropped 24%.
I tried to stop. No dice from the crew so I tried to keep going again, this only lasted for another 5 minutes before I had to stop again.  We discussed the situation and the suggestion came up to tow me to the top with inner-tubes, I was very opposed to this idea but after a few minutes I cashed in all pride and ego and submitted to the plan.  Chris Distefano towed me with an inner tube and Jimmy Smith helped with the push, they got me to the top and I got to let loose on the downhill all the way back to the parking lot.  That is a lot of love those boys showed me, Sean Bolland and Nate Mendel rounded out the crew. 
MTB Crew 

Coupla Dirtbags
Rock Show:
I closed Monday night out with a Foo Fighters concert.
Straight up...... the best rock band in the world.
If you need a lesson in how to open a rock show, here it is: All My Life
Big highlight was seeing my friend Nate getting it done with a "Hold Fast" sticker on his bass.

Nate "Doing Work"

Acevedo Sighting
I am going to close this post with a short story about an interaction I had this week with a Rad Racing alumni. 
Tuesday evening, Rad alumni Sean Worsech,  reached out to me and we had a pleasant exchange. I hadn't seen him in awhile and we were catching up.  After a few messages I inquired about exactly what he was up to.  It was at this point that he bravely disclosed to me that he was a heroin addict and had struggled for years.  He told me that my battle had inspired him to get the help he needed and to get clean.  He said he made this decision right about the same time that I started chemotherapy, and that if I could do what I was doing... then he could get his shit together.  As of our communication on Tuesday he was 80 days clean.
I have to say that I was blown away by this news, but at the same time sooooo proud of him.
I am sharing this with you at this time because Sean has publicly disclosed this information on Facebook and I want to share a powerful example of one of several positive things coming out of this whole cancer experience and Sean's story goes straight to the top.
1.  You never know the private hell that people are going through, slow down and give folks the benefit of the doubt.
2.  God is powerful and there is no limit to his power and grace.

In closing I want to say thank you for all the support and prayers.
I will win this war, I am thankful, blessed, and fortunate.

Big Daddy
Rock Star Bella in the Newspaper this week


  1. Such terrific news, great friends, and a tremendous God. Romans 8:28 We will keep praying, you keep fighting! Jana Crollard

  2. Powerful sharing! Thank you!

    1. You never know the private hell that people are going through, slow down and give folks the benefit of the doubt.
    2. God is powerful and there is no limit to his power and grace.

    Of course you are winning this war!


  3. Greetings from a fellow ROS1er! I'm glad to hear you are doing well. I hope you will join our Facebook group, where over 50 ROS1ers from around the world have joined together to exchange experiences with this mutations. We also have a website: Best of luck, and I hope to hear from you soon! Tori Tomalia