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One Step Closer To Freedom – 3 Month Ponatinib PCR Results

In my last blog post, I shared that my new clinical trial drug, Ponatinib, showed a complete cytogenetic response. What that means is that out of 20 bone marrow cells examined, 0 were leukemia cells. The official report states:

Twenty normal male metaphases are analyzed. No apparent abnormal clone is
identified.

To be honest, I still can’t wrap my head around it. I hoped for a 60-70% response rate at 3 months, but I never expected 100%.

Hello, best case scenario. My name is Justin Ozuna. Thanks for showing up, I really needed you. Here, let me pull up a chair. Sit down, let me give you a massage. Do you like my big screen? Here’s the remote. I just went to the store, do you want a drink? Is the temperature to your liking? It’s so hot outside. Please stay. Make yourself at home.

Maybe I got lucky? Maybe the bone marrow aspirate (liquid) they examined was the perfect cross section of cells, enough to get my hopes up, but not an accurate reflection of my prognosis.

Having exhausted three other drugs, you can imagine my reluctance to get too excited. The “yeah, but” voice of doubt just finished six months of Insanity and is now shredded. It has killer abs and always rocks a sleeveless tee. I mean, it’s even taking mirror shots and posting them to facebook. The cat is obnoxious.

If the three weeks it took to hear the results of the cytogenetic report were the longest of my life, imagine how long it was to receive the results of my PCR test, which examines over 100,000 cells!

Before Ponatinib, my PCR results were +100%. That means that practiclly every cell they looked at showed to have an abnormal chromosome (leukemia). It’s no wonder that I was being prepped for a bone marrow transplant. That’s like showing up to a test,  getting every question wrong, and then setting the school on fire as you walk out.

Look at it this way, I was Hulk Hogan in Wrestlemania 8. Leukemia was Sid Justice and Papa Shango. Towards the end of the match, they unfairly teamed up to take me out. They were winning, bigtime. I was caught up in the ropes with little hope. My friends, family, and strangers asked God for my healing. Suddenly, the music sounded. From a place we aren’t able to see, The Ultimate Warrior, representing Ponatinib, sprinted down the aisle and came to my aid. It changed everything:

(Fun fact: As a little Hulkamaniac and Ultimate Warrior fan, this video still gives me chills)

After three months on Ponatinib, only 0.182% of +100,000 cells they examined are leukemia cells. ZERO POINT ONE EIGHT TWO! Isn’t that crazy? Even after taking a steel chair to the back, Ponatinib was like, NO, we’re clearing the ring. The cellular response has been overwhelming. It’s truly unbelievable.

What a roller coaster ride this journey has been. So many lows, so few highs, I’m just so happy. I’m so thankful, so grateful, so happy. Did I mention happy? I thought I’d be able to put my feelings into words. Maybe eventually, I will. As for right now, I’m just filled with joy.

When I couldn’t see, walk, or get out of bed, I said God is good. Maybe faithful is a better word. God is faithful to see me through, to teach me things I wouldn’t have otherwise known, experience a side of empathy I might have otherwise been blind to, to show me that, despite my sometimes feeble thinking, I do have a purpose.

Although my circumstances change, they’re just a sideshow. What really matters are the lessons I’ve learned along the way. Those are the promises we’re told will be fulfilled. A coin can change a circumstance, only God can provide an understanding heart.

I’m finally heading in the right direction. Dr. Cortes believes that it’s reasonable to expect a Complete Molecular Response within the next 3 to 6 months. In layman’s terms, it would be akin to remission. Remission isn’t used in the CML world because, unlike tumors, it’s nearly impossible to examine each individual cell in the body. Whatever you want to call it is fine with me!

Thank you all for your kind, encouraging, supportive words over the past year. I know it’s been a whirlwind. If it’s been exhausting to hear about, it’s been even worse to endure. For the first time since January of 2006, I think I’m starting to see the finish line.