September 17, 2015

On September 17, 2015 by Michelle Love

What a week this has been! We were at Duke on Monday and Tuesday for the initial portion of the CAR-T cell clinical trial. BJ’s white blood cells were collected on Monday. He had an early morning on Tuesday too, with fluids, anesthesia, a bone marrow biopsy and a spinal tap to collect a sample of fluid. We were able to start the trip home and arrived around 7pm. On Wednesday, he had an 8am appointment at his regular oncology doctor at the Levine Pediatric Hem/Onc clinic in Charlotte, where he had blood drawn for labs and then an infusion of 2 chemo drugs. Last night, he developed a fever and was admitted to Levine Children’s Hospital. He’s feeling better today, but we’ll be here tonight too, just so they can make sure the fever doesn’t come back overnight.

BJ’s leukemia is growing fast without being treated with chemo for several weeks. Labs from Monday at Duke showed 6% leukemia cells in his peripheral blood. On Tuesday, there were 12%. Wednesday, there were 17%. Just to explain what that means… BJ’s type of leukemia originates from inside his bone marrow, so when those leukemia cells multiply enough, the marrow becomes crowded, and they spill out into his (peripheral) bloodstream along with normal red and white blood cells and platelets. When there are leukemia cells visible under a microscope in his bloodstream, there are many, many more in his bone marrow. I’ve mentioned MRD in earlier posts…MRD is a measure of the percentage of leukemia cells in the bone marrow. BJ’s leukemia is too aggressive and resistant to the chemo he’s had over the past 3 years of this fight. With all of the treatments he’s had since his relapse in May, he was not able to get to a point of 0.1% MRD. (Which is why this clinical trial at Duke is so exciting!) When you start talking about MRD, it’s because you can’t see any leukemia cells in the bloodstream under a microscope. So 17% leukemia cells in the blood stream is very concerning. The percentage will be much higher in the bone marrow. Since he developed the fungal infection, he has only had intrathecal (in the spinal fluid) chemo, during a spinal tap. He will have to continue to get chemo treatments until about 2 weeks before he goes back to Duke to get his CAR-T cells. (CAR-T cells are the modified version of his own white blood cells that were collected Monday – that will find and destroy those leukemia cells.)