Monday, July 14, 2014

Week 11 - MK3475 at Mayo (Anti-PD1) & Cabo!

QUICK UPDATE WEEK 11
 
Well I have had a interesting week since I found out my cancer had progressed so quickly. I chose to quit treatment with the drug Yervoy since I developed 14 new tumors in 6 weeks and seek out a clinical trial drug. My friends who work at the Mayo Clinic had encouraged me to apply for a new clinical trial of Anti-PD1 (MK3475) in case I ran out of options. The new drug from Merek, has had better success than Yervoy, but is not yet approved for full use. I am patient #15 in Arizona and understand it has a 40% chance of helping me fight but long term effects and results are not known. It is a big gamble but really it is all I have left. I received the first dose Tuesday July 8th and then took off for a family vacation to Cabo the next afternoon.
 
I am hopeful but am more ill than I expected. I feel the new tumors when I breathe deeply and may be responsible for some of my stomach issues and all over body pains. I understand why people may use pot or pain pills! I am not eating much or sleeping great, am a little depressed but doing my best to stay positive while waiting for disease regression. Doctors told me I have 30 days to ?? depending on what happens in the next few weeks. Cross your fingers I do not get any more brain tumors or any new liver or lung tumors!
 
Thank you for ALL the support! Much Love & Never give up!
Jason & Erin
 
 My Mayo Support Crew
Fun in Cabo
My wonderful family in Cabo!

Sunday, July 6, 2014

WEEK 10 - Thank you, Positives, Scan Results & moving forward.

Hello all.

I will do my best to keep this as brief as possible so I don't lose my OCD friends to their phones.

WHIRLWIND
The past couple of months since diagnosis have been a complete whirlwind ride for us. So much has happened and so many people have gone way out of their way to help us out I don't even know where to begin. So I must first say THANK YOU! I always do my best and hope you know I see everything you have been there for. All the little things from $10 donations from strangers online to dinners, lunches, my friends checking on me daily when I am down fighting, fundraising, posts, shirts, and I could go on. Thank you to my local friends, far away friends and friends I have not met yet. Much love.

TRAVEL & BUCKET LIST
As you know Erin and I love to travel and play. Spontaneous vacations of 2-4 days at a time are our thing. We may do crazy things last minute or just find simple things to do. Most of our travel is within the USA due to logistics of being gone for more than a few days at time but we love it. My amazing group at CFNS came together and started a private fundraiser at CrossFit North Scottsdale to make sure we did some of the things on my bucket list. This was something so special you did for us that is holding Erin and I together more than you know. Love you guys for this.

Def Leppard Concert 7-5-14


PAY-IT-FORWARD
My friend Kelli Howard nominating me for CBS's PAY-IT-FORWARD. They came to CFNS and surprised me a couple weeks ago. Pat McReynolds tried to get me to cry many times but I fought it back like a champion. I wanted to say think you to Kelli and all my friends who came out on that special Friday.

http://raycomgroup.worldnow.com/story/25824701/friends-fundraise-for-scottsdale-trainer-with-devastating-diagnosis?autoStart=true&topVideoCatNo=default&clipId=10286629
 

FUNDRASIER & FAMILY VISIT
What an amazing weekend June 21st turned out to be! We had almost 80 athletes come together in the final hour for our first WOD Crawl which helped to raise awareness of Melanoma while raising medical funds to fight. Thank you to all the new people I met over that day!

I am also so proud of all our athletes from CFNS who had never competed. You came out smiling and kept smiling through a full day of workouts. So great!!

Thank you to our friend Josh from Power in Motion CrossFit, Brenda & Chad from Infinite Strength CrossFit and Tiffany from Wildfire CrossFit (along with our own affiliate CrossFit North Scottsdale - Lon & Mike) who came together quickly to host and run workouts for every scale and athlete. It was a total blast and was very well organized. Thank you to my business partner, Shane Edrington. He came through and got it done! 

Thank you to my family (Kathy, Robyn, Keith, Hannah, Penny, Luis & Jordyn) for coming all the way to AZ. We had a blast. Love you guys!



SCAN RESULTS 7-2-14
What you have been waiting for.

6 Weeks into my treatment (2 doses of Yervoy done) to stop this malignant Melanoma, I requested a new CT body scan due to the appearance of 3 new lumps. My great friends Stan and Maryanne along with my wife Erin came with me to support whatever news I was told.

News was not favorable. I have cancer almost everywhere.
Thyroid. Ascending aorta. Pancreas. Right & left kidneys. Right & left groin lymph nodes & right axillary lymph nodes. 13 new tumors. Many of them are 1-2" in size. I can feel them when I breathe deeply and swallow. Along with a few superficial ones around my body. FU CANCER! This doesn't yet include my brain since I wont have another MRI for a few more weeks. We hope nothing is there!

I am unfortunately not responding to the Yervoy but still took the 3rd treatment last week. I was encouraged to look elsewhere for help. The best option doctors tell me is ANTI-PD1. This drug is available at ONE place in Arizona right now. MAYO. But it is not "in-network" for insurance so I have applied for an exception to get this started ASAP. The process takes 7-10 days. Keep your fingers crossed I get approval Monday or Tuesday this week as they are on stand-by waiting. I may just walk in and use my medical fund you raised for me to get started ASAP! Seriously.

MOVING FORWARD
How do we move forward and smile everyday? How do we deal with the devastation that my body is failing me? I don't know, we just do. We say "we have today, lets make it the best".

Erin and I are faced daily with thoughts of the "what ifs" and I am mentally facing what needs to be done and arranged in as little as 3-6 months. This is a huge task that does not mean I have given up, it just means I am prepared for the worst and hope for a better outcome. I am pragmatic and need to have this ready, for me, as to not leave a heaping pile for Erin. I personally need to do this before I get another brain tumor or don't feel well enough to take care of it. This MAY NEVER happen, but most likely will. Malignant Melanoma is a nasty cancer that does not discriminate the weak from the strong or the rich from the poor.

Thank you for reading and spending time with me.

Best to you all,
Jason






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