I got a Jak2 VAF update Dec 3. It was 3%, down from 5% a year ago and 14% at start. The latest reading of 3% is a 79% reduction from baseline. See following post for my actual % data. I converted it to the units from Fig 1A of the Rux report here and made a plot, the red line.
acsjournals.onlinelibrary.w...
My plot shows a faster reduction while on Bes and shallower on Rux. This is consistent with what we've discussed, IFN starts fast and levels out, Rux holds a more continuous slope. Interesting that the slope is quite similar to the blue trial results for the Rux period. Next year's result will be esp interesting, if it follows Fig. 1 my reductions will stop. Conversely if it continues down like this I'll be in the <2% zone that has been called "deep molecular response". I'm actually 3-4 weeks into the flat period of Fig. 1 blue, (~week 148) so maybe I'll get lucky and keep at it thru this period. But the Bes period may confound this timing.
HCT 43.8, Plt 400, Lymph 1.06(Low) Neut 6.62(High). This puts the N/L ratio at 6.24 which is prognostically undesirable for almost everything. I suspect it's from my ongoing Sjogrens deterioration and maybe leftovers of a cold I had.
I asked my Dr what if VAF goes to undetectable. He said we could try pausing the Rux. If I still have no non-driver mutations maybe that would work. We also had different recollections of why he ordered a higher dose of IFN than I wanted. He thought I was not getting blood counts on lower doses. But my plots show that 50mcg of Bes was enough. In fact he was pushing for max VAF reductions. Regulars know why I care a lot about this.
I asked Dr how his various other Rux pts are doing on VAF reductions, he said no one else asks for this test.
I may elect to switch to HU if it allows me to get into a Sjogren's trial or other access. We don't make choices or be too busy, we rather set priorities.
