I am no researcher, oncologist, or genetic counselor–just a wife trying to do my best to understand my husband’s condition and act as his advocate. Still, one thing I’ve been forced to learn about is how specific genetic mutations can affect patients with myelofibrosis (cancer/scarring of the bone marrow). We get the genetic mutation information from his bone marrow biopsies, which usually happen twice a year (might be more than that in 2025 because of the medical trials he’s been participating in).

I pledge to share what I learn, even if it’s worrisome. If I share only the rosy side of things, this blog will not fulfill its purpose of sharing news of R’s condition and educating people about the disease in a way that’s not too difficult to understand. R has the JAK2, ASXL1 and TET2 mutations. You can see from the graphic above that 4% of all MF patients have those three in combination. Here is a summary of information I found about the ASXL1 mutation in particular. It’s something we must contend with when making decisions about R’s ongoing care, and an area where we look to his physicians for conclusions and recommendations.

I don’t post this to be an alarmist, but we can be fully informed and hopeful simultaneously. More than anything, we are hopeful and confident that R will come out of this ordeal with new donor stem cells that make him healthy again! Stem cell transplant date still TBD. Love to friends and family near and far who support us with their care and concern.

And with every blog post, I usually write something positive about R, so why change now? Despite how tired he usually is, he’s been working on his cars when he can, cleaning out our side yard and planting seeds for our summer vegetable garden. He is a SUPERMAN to everyone in his orbit!