The results of the MPN Myeloid Panel are in. The good news is that I am negative for all of the non-driver MPN-related gene mutations (see list below). They did detect the two known mutations on this panel JAK2:c.1849G>T (aka JAK2v617f) and NF1:c5425C>T. One point of curiosity is that on this panel I show with a JAK2 mutant allele burden of 29% where a month earlier I showed with 26% on a different lab. The year before I was at 25%. Not sure of the significance of the 26% vs 29%, but suspect it is likely just an artifact of the variance between the different lab techniques (or within the margin of error). Will check with the docs on this.
I have had an oddity in that HCT has been steadily declining since my last venesection on 8/26. Went from 43.6 on 09/08, to 39.4 on 9/28, to 39.1 on 10/28. Will be getting another CBC next week. We will see what it is then. Platelets have also been running consistently on the high side of my normal range (in the 700s) with that one odd spike back in July to 903. My two hematologists are aware and not particularly concerned at this point. Plan is to continue the venesection-only treatment protocol and monitor. I remain asymptomatic from primary PV symptoms and feel fine. Well, fine for an old guy with systemic inflammation, osteoarthritis. a bum knee, a bad back etc. etc. 😄 At age 65 with PV and NF1 - I am fortunate to feel as good as I do! I will take my blessings as they come.
I have not had any repeat incidents of the visual migraines or hallucinatory palinopsia. Either the cortical irritation calmed down on its own or the Magnesium dosing is working. I will take it either way. I was still showing a Mg deficient despite the old Mg dose, so changed form and increased dose. Will reevaluate Mg and Folate (also still deficient) in the near future. I am just thankful that it does not appear that I will need to initiate treatment with anti-seizure meds. Hopefully that will stay the case. I am getting fitted with prism-lenses for the convergence insufficiency so that should help further improve my vision.
So - all in all good news. Thanks to all my MPN brothers and sisters for your interest and support.
LIST OF ALL GENES IN PANEL
ABL1 CUX1 IKZF1 NPM1 SF3B1
ASXL1 DNMT3A JAK2 NRAS SMC1A
BCOR ETV6 JAK3 PDGFRA SMC3
BCORL1 EZH2 KDM6A PHF6 SRSF2
BRAF FBXW7 KIT PML STAG2
CALR FLT3 KMT2A PTEN TET2 CBL GATA1
KRAS PTPN11 TP53 CDKN2A GATA2 MPL RAD21 U2AF1 CEBPA IDH1 NF1
RUNX1 WT1 CSF3R IDH2 NOTCH1 SETBP1 ZRSR2
ps. I really believe that the MPN Myeloid Panel and Mutant Allele Quantitative Analysis should be a standard of care for everyone with a MPN.