December 13, 2018

Navigating our Journey

Earlier this week, I met with my leukemia doctor to go over the various treatment protocols that he presented to me last month. Paul and I had narrowed them down to two, one Standard of Care and one Clinical Trial. Based on how my various “counts” had been heading, Dr. W. and we were all prepared to start treatment sooner than later. And as it turned out, the two we had chosen were on the top of his list as well, especially the trial. However, it isn’t open for 2-3 more months.

But as we took a look at my labs this week, we were surprised to see that they had backed up a bit in each of the areas of importance. Just enough to buy me a little more time and be considered “stable” for the moment. Nothing ever seems to stay that way for long, but the timing was helpful, as I cannot move forward with either of the leukemia treatments until my lungs are clear. The medicine that I am taking for the fungal infection in my lungs counteracts with the main ingredient in both protocols…Venetoclax. So until my lungs are clear and I can get off of Noxafil, the prayer is that this sudden stable reading in my counts might hold strong.

While we were researching the various treatment plans, a sentence seemed to scream out and remind me of the reality of my disease.

“Relapsed or refractory chronic lymphocytic leukemia remains
incurable, despite advances in treatment over the past 5 years.”

Well, that about wraps it up! It went on to say that we (I) have increasingly developed resistance to therapies. (ie…a stem cell transplant that wore off, 2 DLI’s that didn’t work, 2 CAR T-Cells that didn’t work….) “Hence, additional treatments that have alternative mechanisms of action that are effective and have an acceptable side-effect profile are needed.” Thus, the introduction of a variety of monotherapies and targeted therapies. I realize that this is usually where I lose some of you, but many want to know the details.

The Standard of Care option is Venetoclax plus Rituximab. It is showing a 85% 2-year progression-free survival rate, with 17p del patients at 81.5%. Not bad!

The Clinical Trial option is Acalabrutinib/Venetoclax/Obinutuzumab. This is the one that Dr. W. is leaning toward but doesn’t open for a couple months. If my lungs take that long to clear, it might end up being the best option. Acalabrutinib is a newer version of Ibrutinib with supposedly fewer side effects, at least from what has been documented so far. The cool thing about this one is that after it has cycled, the A/V portion can be restarted again if necessary. That is not the case in most trials.

Both options have an extensive list of side effects such as neutropenia, low counts, nausea, diarrhea, rash…all the regular stuff. But I’ve been there, done that, have the t-shirt. The goal is to be here next Christmas and hopefully the one after that! My brother wants me to dance at his 50th wedding anniversary!! I’ll be happy to make our 10th then prayerfully our 15th!!! I am already defying the odds of my disease. I would really like to just blow this whole thing out of the water!! ☺ Only God!

My infectious disease doctor is doing another CT of my lungs on January 2 to check the status of the fungal infection. The problem is that they have no idea what it actually is or how I got it. I/we have been so incredibly careful and protective of where I go and what I do and I STILL got it! :/

So with joy and peace for each day, we will journey on, step by step. I wish each of you the Gift of knowing the One who is the giver of that joy and peace at Christmas and throughout the year.

“May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.”
Romans 15:13

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