R went in for his monthly drug infusion last week and was told they could not go ahead with it because his neutrophils were too low. The trial drug can lower a person’s neutrophils, so if they’re already low, they don’t want to risk lowering them further.

Neutrophils are the most common type of white blood cell, making up 50-80% of all white blood cells in the body. They are produced in the bone marrow and released into the bloodstream to travel to sites of infection. Once there, they attack, ingest, and digest microorganisms. Neutrophils also help start the tissue repair process.

The normal range is 1.8-7.0. The cutoff for NOT getting the infusion is 1 or less. R’s were at .85 last week. They asked him to try again this week assuming his neutrophils would have recovered by now.

He went this morning and his neutrophil count was .52, lower than last week. Once again, they sent him home. The two vaccinations R had on Monday (flu and Covid) MAY be the culprit, but that’s a guess. A steady decline in white blood cells (including neutrophils), red blood cells and platelets is problematic. R’s red blood cells and white blood cells drop almost every time they do the lab work. I keep a spreadsheet tracking all his numbers and can see trends over time.

The nurse practitioner will speak with the doctor about it. She may want R to go through another bone marrow biopsy which will give more definitive information. It’s important to know WHY R’s blood counts keep dropping. She may decide to stop the drug trial altogether and start R on a different one or switch/add medications to what he’s already taking.

It could also mean R is getting closer to needing a stem cell transplant. With his unusual gene mutations (chronicled in previous posts) he is more likely to develop acute myeloid leukemia (AML), which has a poor prognosis, especially for patients over 60. No AML! No AML!

We hope to hear back today or Monday on what next steps are.

We leave for Houston soon to get a second opinion on October 15th from a specialist at MD Anderson Cancer Center. We have lots of questions!

The best thing going for R right now is how healthy he feels. It’s such a disconnect to have his blood work pointing to disease progression when he’s feeling good. He’s even started working out again. The only thing that’s impacting him is increased fatigue, but he still has more energy than me! He doesn’t feel the fullness in his abdomen much anymore because his spleen has reduced in size…still too big but smaller than before. Hooray! My husband is Superman! And despite all the uncertainty and stress, he’s still the most thoughtful and loving person in my world.

It’s hard to know what to make of all this, and it’s clear the doctors don’t have all the answers either. I’ll keep you posted.