MDAnderson

My initial visit to M.D. Anderson is in the books. It was a two day event.

I don’t have as many answers as I’d like to have at this point, but I think my family is feeling optimistic about the possibilities of progress.

The first day consisted of meetings with liaisons, nurses, insurance people, blood draws, and the dreaded bone marrow biopsy.

I was disappointed that I had another biopsy since I had one just a month and a half ago, but I guess they just wanted to get their own opinion. And they needed to see where things stand.

The second day consisted simply of a meeting with the doctor. Easy enough. No poking, prodding, or any of the things that I’ve grown to associate with these kinds of trips.

My mom made the trip down from Wichita Falls in support. I’m glad that she came. Katie, residing in San Antonio, met us in Houston. I was thankful to have her there. I know my dad wanted to be there, but he took a job as an aerospace welder for the air force and is in the process of being deployed overseas.

All of that made being in Houston a lot easier. Naturally. I’m thankful for this life that I have and the people in it. I don’t know how anyone can live without a loving support system.

For the sake of time, I’ll communicate what I learned. I have a gene mutation called t315i. My doctor described the cell mutation as a change in one of the receptors allows medication to bind to it, which then prevents the formation of abnormal white blood cells.

Here’s a layman’s illustration.

Picture a baseball glove as a protein receptor. Gleevec, my former oral chemotherapy, happens to be a softball. When a cell mutates, it’s the equivalent of a small protrusion in the webbing of the glove.

In this example, a second generation drug can still be caught, much like switching from a softball to a smaller baseball. The t315i gene mutation, however, is like having numerous protrusions in the webbing of the glove. Not even a baseball can be caught.

My oncologist says they also call this mutation “the gatekeeper” for that exact reason. It’s not even worth trying. No known FDA-approved medications work. That’s why I’m at MD Anderson.

At this point, I still don’t know what kind of treatment I’ll endure. They sent off for another test to confirm that I do, in fact, have the gene mutation UT Southwestern told me I have.

Once that information comes back, they’ll look at the results of all of the tests and see where I currently stand. Then, my oncologist will formulate a game plan.

I do know that I’ll enroll in a clinical trial. My doctor said there are a couple to choose from and that he wants to put me on the one that has shown the most positive response in patients with drug resistant leukemia.

I’m lucky that a new trial will start in a month. If I’m not a candidate for that trial, he said there is a second trial available, but that I would have to spend a month in Houston while receiving treatment. I’m hoping the first option works out. Typically, a clinical trial lasts for six months.

As much as I know about my next steps, I still feel like I don’t know anything. That’s a little frustrating. But I’m thankful. I’ve remained thankful. My prayer has been that this process increases my gratitude, so that “in all things, I give thanks”.

If you’re reading this, thank you for your support, encouragement, prayers, words of hope and inspiration.

I remember talking to a friend whose father recently learned of his diagnosis of lymphoma. I told her to embrace the experience, whether it be bad or good, hard or easy, to just be present.

In this moment, I’m living the experience. My goal is to share that experience in this blog.

Thank you.

Posted in: cml

8 thoughts on “MDAnderson”

  1. You shall be in my prayers. If you ever need support from a stranger I am here buddy.

    Just keep us faithful readers updated c:

  2. Hi Justin, I can't recall how I got to your blog, only that I was wandering around a friends Facebook page and your name looked familiar. Of course, I clicked and am glad I did. It's so very pleasing to find such a positive person and one that lives in the moment. I know we went to the same high school but don't really remember you, and doubt you remember me. But, you made me smile today so I wanted to say thank you and best wishes in all things.
    P.S. Keep up the blogging, you apparently learned SOMETHING in school….your posts are wonderfully written and fun 🙂

    -Lindsay Wisecup

  3. Wow, thank you for the encouraging words Lindsay! Yes, your name is certainly familiar, but I can't remember if you were c/o '00 or '01? I'm glad you enjoyed my blog writing. Thanks for leaving a note.

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