Another Bump in the Road

I’m tired, my hip’s sore, and I really don’t want to talk about this right now…but I know there were many who prayed for me today and I want to share at least what I know at the moment. I won’t have the important results back for one to two weeks. My regular labs are hovering around the same as they have been. Lymphocytes up, neutrophils down. Platelets hanging in there.

The news that threw me for a loop today was that the trial (CAR NK) that I had already been approved for (by MDA and by my insurance company) may no longer be available to me due to my previous participation in the CAR T-Cell trial. Dr. H said that the lead NK trial doctor has gone back and forth regarding my eligibility because the product used to develop the chimeric antigen receptor (CAR) in the Phase 1 T-Cell trial is the same as that of the CAR NK trial. They have seen situations where patients have had second CAR trials, and the subsequent trial did not work because the patients had developed antibodies to the antigen so it didn’t “take” the second time. They are concerned/convinced that the same thing would happen in this situation. So it would be pointless to subject my body to two strong pre-treat chemotherapy drugs when my body will most likely reject the antigen (CAR).

It took us quite a while to wrap our heads around this trial in the first place and get to the point that we were ready to move forward…and we were finally comfortable with our decision, should the bone marrow biopsy comes back as expected. And then WHAM! Time to rethink again! Dr. H is going to re-present my case AGAIN to the team to make certain of their concerns. She also reminded me that the Phase 2 CAR T-Cell trial is still on the table. It uses a different type of product (not mice) in the preparation of the CAR so I would not have the same risk of rejection. I had thought that Phase 2 was only for lymphoma and ALL patients, but that was for standard care. It is still available as a clinical trial for CLL. So there’s still a possible option for me to achieve remission. Sigh.

All of this to say it’s been quite a day. I am thankful for my friend, Deidra, who drove me, talked with me, and kept me sane! I am ever thankful for my medical team who answers my endless questions, even after I get home. I am thankful for my husband and family who loves and upholds me and helps me remember stuff! And I am thankful for my God who calms the waves when the storm rages and carries me when I just can’t take another step until I am filled with His strength to once again journey on.

“God is our shelter and strength, always ready to help in times of trouble.”
Psalm 46:1

“The righteous call to the Lord, and he listens; he rescues them from all their troubles.”
Psalm 34:17

“Whoever goes to the Lord for safety, whoever remains under the protection of the Almighty, can say to him, “You are my defender and protector.
You are my God; in you I trust.”
Psalm 91:1-2