Muller APL Update

September 15th, 2023

Camping in July – it’s doable!

We had good news last week of bone marrow biopsy, showing that the PML-RARa (the mutated bad stuff in bone marrow) is at 0%, ZERO!! NONE! That’s down from 67% on admission, and 5.5% on discharge.

Blood testing is now down to twice a week, and as of yesterday’s blood test, there’s now the first two days straight of “normal” hemoglobin! It’s a trend!

Platelets are stabilizing in normal range after the previous cycle of arsenic (yes, that’s right, IV ARSENIC TRIOXIDE!) and ATRA.

And neutrophils are up again, recovering in this ATRA only stretch from the arsenic IV/ATRA combination, and I expect neuts will be suppressed in October.

How does this treatment work, and why the ups and downs? It’s because the arsenicn IV/ATRA combo is what hits the bone marrow and wipes out that PML-RARa. During and after that 2 weeks of arsenic/ATRA for a bit, everything is suppressed and so after a month of that treatment, there’s a month of recovery with 2 weeks of only ATRA and 2 weeks off everything. This cycle goes back and forth goes on for 8 months, each cycle 28 days. We’re now in cycle 3, ATRA only and 2 weeks off starting next week, then back to arsenic IV/ATRA combo.

The inpatient phase, 5 weeks worth, is called “induction,” which induces remission, and after that there’s a long, but necessary “consolidation” phase, which locks in remission. We’re almost 3 months post discharge, with a week and a half off of treatment right after discharge, and another week off waiting for the biopsy results (the ZERO% good news biopsy) just before the start of this cycle, so now we’re on Cycle 3, and looking now at completion in February or early March. There’s no bone marrow biopsy contemplated until the end of Cycle 8 then, whenever, depending…

ALL of this is GOOD NEWS, the best possible scenario for Acute Promyeletic Leukemia.

On the other hand, Alan’s shedding his skin like a snake! So yeah, a side effect, along with losing some of what hair he has left and a little appetite suppression, both minor impacts, but noticeable.

It’s been a long strange trip since May 19, 2023, and now about half way through treatment, so far successful. Who would have though… but that first bruise caught my attention, and the next day, whew, off to the ER, then by ambulance to Mayo Rochester…

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