What’s Next?

As many of you know, and have been so kind as to continue encouraging and praying for me, last Friday was hard. The Lord has been so incredibly gracious to me these past years in helping me to stay positive and joyful throughout this journey. But every once in a while, when things continue to go the wrong way, you just need a day to regroup. Friday was mine.

In keeping things in perspective, I am not dying…today, or next month. “You look so good!” Yeah, well thanks! Tell my cells! I have friends, and folks I meet at MDA, who are on the brink of death. My heart breaks for them. I understand! And I understand that I am not there yet, this time. Where I am is in an ever-declining state of an incurable disease. Cancers with masses that can be removed and then the area radiated and treated with chemo can be “cured.” Leukemia is a blood cancer. You can’t cut it out, radiate it, and be done with it. It’s just different. It affects your whole being at its core, at the cellular level. Much has been discovered just in the six plus years since I was diagnosed. There are drugs and treatment plans that are being used now that had never even been heard of six years ago. So there is a great deal of hope for the future. But one has to live long enough to get there.

I have already used up several of the protocols that are available to me. I have had a stem cell transplant (which bought me two years of remission) and had two of the major chemo drugs utilized for my disease. I could conceivably have used them one more time in the future, but since I have 17p deletion, I am chemo resistant, so chemo is pretty much off the table except for anything other than a pre-treat drug. It’s not going to work long term. I have had the CAR T-Cell Trial, but that didn’t work…other than keeping me in minimal residual disease status (MRD) for a year or so, but it did not achieve remission. Over the last couple years, my numbers have continued to steadily climb/decline, and my team decided to move forward with the Donor Lymphocyte Infusion (DLI)…one last summer and a second in December. Neither has worked. My numbers continue to go the wrong direction.

The only options I have left are the CAR NK (Natural Killer) Trial which is a very new trial utilizing cord blood rather than my own or my donor’s. The second option is to wait until my numbers meet the specifications of the Leukemia Dept for treatment (I’m almost there) and go on one (or more) of the targeted Leukemia drugs (Ibrutinib, Venetoclax, Zydelig). The thing about those is that they are not designed to bring you to remission. They just keep you from dying…which is a good thing. But most CLL patients are much older than me when diagnosed. If I had been 70+, had been through all I have been through, had bought six years, and then was being offered a drug that could possibly give me 2-5 more years, then I would be all over that. But I was 50 at diagnosis. I am now 56. I am looking to buy a couple decades, not just a couple years! I need to try everything I can to achieve remission…even if it’s scary.

Which brings me back to the CAR NK Trial. I wrote my doctor team last Friday afternoon, thanked them for the amazing care they all have provided me over these past years, but let them know that on that particular day I felt a bit hopeless. My numbers continued to creep in the wrong direction but weren’t yet (by one point in one area) in the range of treatment for the Leukemia Dept. It is difficult to determine “fatigue” when I have been dealing with it ever since the stem cell! And I have never had issues with my platelets. God has just protected me from that the whole time! And if my goal is remission, the only real option at this point is to reconsider the Trial. Before I had the second DLI, there had only been three people who had entered the trial and one had died. Not good odds. Since then, more have joined, with better odds.

“The goal of this clinical research study is to learn if giving genetically changed immune cells, called CAR-NK cells, after chemotherapy will improve the disease in stem cell transplant patients with relapsed (has returned) and/or refractory (has not responded to treatment) B-cell lymphoma or leukemia. Also, researchers want to find the highest tolerable dose of CAR-NK cells to give to patients with relapsed or refractory B-cell lymphoma or leukemia. The safety of this treatment will also be studied.
This is an investigational study. The making of and infusion of genetically changed NK cells and the drug AP1903 (if you receive it, explained below) are not FDA approved or commercially available for use in this type of disease. They are currently being used for research purposes only. The chemotherapy drugs in this study (fludarabine, cyclophosphamide, and mesna) are commercially available and FDA approved.
Up to 36 patients will take part in this study. All will be enrolled at MD Anderson.”
ClinicalTrials.gov

So for those of you who are into details, there you go. That’s it in a nutshell. I got word today that they are going to contact my insurance company for pre-approval just to have it ready and on the table for when my body recuperates from the DLI. (You have to wait a certain amount of time between treatments.) This one is a bit scary, and I will have to be in the hospital for a few weeks. The pre-treat is pretty intense, but I just don’t see any other options at this point. Go big or go home.

So that’s it, my friends. Until then, they continue to check my numbers every two weeks. They are trying to figure out why my knees went south again. And we continue to take each day with joy and a thankful heart. Joy comes in the morning. I just had to get past Friday.


Let all that I am praise the Lord; with my whole heart, I will praise his holy name. Let all that I am praise the Lord; may I never forget the good things he does for me. He forgives all my sins and heals all my diseases.
He redeems me from death and crowns me with love and tender mercies.
He fills my life with good things. My youth is renewed like the eagle’s!
Psalm 103:1-5