Stagnant

Instead of giving you bits and pieces the thought was to wait until after yesterdays added-on HemOnc appt with my AML chemo team until I had more definitive info to share/update you....


Breifly - The July chemo saw cell recovery start at Day 23. However in the past 13 days since there has been slowly growing concern as it became apparent there was no cell improvement. (because my current WBC's are 0, my Neutrophils are 0 - the 2 most critical measuring points - the 0's should be sufficiently self explanatory). As last week rolled-out, several times my RN expressed mild surprise then mutual concern when 4 separate results continued to support the above. The Bone Marrow Aspiration (BMA) originally scheduled for a few weeks away, she re-scheduled for yesterday. With the addition of last Wed's result she re-schedule the BMA even sooner - to last Friday Sept 19th. Obviously if the BMA was twice re-scheduled to sooner each time there was now concern, at least to a mediocre degree.


Kate and I met with the team yesterday (day 36) for the BMA results. The team was pleased and announced no residual disease present. 2 additional reports were not yet available. Having entered into the 2nd round of chemo already in Remission I found it didn't make sense residual disease would be a concern, even scientifically possible. They continued; though concern they were confidant I was right on the cusp of cell recovery. Even as I feel weaker I kinda think this may be possible from other physical indications I'm experiencing. I also believe they are now acutely aware to project confidence, encourage trust again, perhaps reduce concern, as I had lit significant fire the previous week to simply get the Transplant Consult finally scheduled. An example was offered using a random day 49 that would cause a higher level of alarmed concern. I was also disappointed there were no available results showing baby WBC blast cells, baby RBC's, baby Neutrophils, baby platelets developing in the marrow, and potentially why not. Were we perhaps too aggressive? Should we have waited another week or 2 in between ? He replied maybe yes. But maybe the disease would return. We would keep the New Patient DLI Oct appt, but watch and wait in the meantime, breath held. He suggested I inquire with the DLI/Transplant team about cell recovery levels in order to proceed w/ DLI. Also briefly mentioned: if still no cell improvement nearing the day "49" example, would a synthetic medication encouraging Neutrophil growth be used ? Ultimately I shared my concern if cell recovery showed no improvement period how would this reflect upon any future Transplant should the DLI fail ? Surprisingly, bluntly, he responded next step would be directly into a Mini Transplant, without DLI...at all. We didn't expect that answer. Albeit it makes medical sense. Wow.