November 6, 2017

The Decisions Keep Getting Tougher

It’s been a while since my last blog post, so to catch up a bit, I had a DLI (donor lymphocyte infusion) this past summer and then a bone marrow biopsy last month to see it the DLI had worked. It didn’t. The biopsy also revealed that my 17p deletion has come back full throttle. For those who have been following this journey of ours from the beginning, you may recall that the 17p deletion issue was the defining point in moving forward with my transplant. It makes my disease a bit more ornery and difficult to manage.

We knew that a second DLI was on the table, but my doctor called a week or so ago and told us about two new trials that the stem cell team wanted us to consider…a 2nd Generation CAR T-Cell Trial and a CAR Directed NK (Natural Killer) Cells Trial (for B Cell Malignancies). We immediately began our research, becoming more and more concerned, confused, lacking confidence with any direction. During the past six years, we have always felt a strong leading from the Lord and from our own investigation that we were making the right decision. This time has been different. The options have been scary at best, toxic at worst.

This week we would be meeting with our team of doctors, hoping for answers to our many questions. We went armed. Today we met with my leukemia doctor. He is not my primary doctor but he is part of my team. Since I am a stem cell patient, the stem cell doctors act as my primary care team. Dr. W. was very helpful, answering many of our questions about the two trials, about why my 2015 trial didn’t work, and about the two drugs his team has available to me, even with 17p deletion, Ibrutinib and Venetoclax. He discussed the benefits, risks, and the PFS (Progression Free Survival). A third drug is also available, but it carries the high risk of morphing into Richter’s Syndrome, which is what helped take down my buddy Dave. Not even going there.

In a nutshell, it just doesn’t appear that either of the trials provide enough benefit versus risk at this point. While Dr. W is still more of a proponent of the drug treatment protocol, the average PFS is only about two years with any of them. Then I would have to switch drugs or go on another trial. So unless the stem cell team has something amazing up their sleeves on Wednesday, we are now confident in our decision to move ahead with the second DLI. I still have cells in the MDA freezer, my donor was/is beyond a perfect match (14 of 14!), and this round will be done with a higher dose of cells and without chemo. The goal is to get my donor cell count to 100% or as close as possible. They are currently at 84% of my T-cells and 48% of total cells. So we have some work to do. They need to take over and obliterate my bad guys. Or we’ll have to move on to Plan B. And that will mean revisiting all the above.

Sunday, as the Lord so often does, He spoke right to my heart through Pastor Dean. He spoke on Psalm 23 in such a way as I have never quite heard it before. Dean has a way of doing that. So does our sweet Lord. Take a moment and reflect on these words. And thank you for praying and for taking this journey with us.

The LORD is my shepherd, I lack nothing.
He makes me lie down in green pastures, he leads me beside quiet waters,
he refreshes my soul. He guides me along the right paths for his name’s sake.
Even though I walk through the darkest valley, I will fear no evil,
for you are with me; your rod and your staff, they comfort me.
You prepare a table before me in the presence of my enemies.
You anoint my head with oil; my cup overflows.
Surely your goodness and love will follow me all the days of my life,
and I will dwell in the house of the LORD forever.


  1. My dear, sweet Tamara,
    This morning during my much needed time with Our Father, I am reminded yet again how precious is this life on earth. Psalm 23 has always come at the perfect time in all situations in my life. It seems whatever the circumstance, there is a new message from our Creator. This is providence not coincidence. Seeking Him in all decisions will always be the right decision. You, my sister in Christ, have been such a testament to His grace and unconditional love. Many are praying for your healing and now to add to that, I am thanking Jesus for letting so many of us be on this journey with you. Your heart has changed me. Your Faith has encouraged me. Your gentleness has taught me, and your love has pierced my soul. Please know that this journey is not in vain. I believe with all my heart our Father has you all wrapped up in His arms, and loves to show you off to the rest of this uneasy world. You my dear are his priceless creation and I am so thankful to be apart of this time in eternity with you.
    May His light shine upon you all the days of your life.


  2. Hi Tamara. I am just praying. Your post on Facebook sent me over here. Troylene said it well: "I am thanking Jesus for letting so many of us be on this journey with you. Your heart has changed me. Your Faith has encouraged me. Your gentleness has taught me, and your love has pierced my soul. Please know that this journey is not in vain."