Category: Uncategorized
-
The Plan Comes Together
The faculty at Fred Hutch/University of Washington decided R should get bone marrow stem cells from a young, closely matched 9/10 unrelated donor instead of his 69-year-old brother, a 10/10 match. HOW IS A DONOR CHOSEN? The deciding factor is how closely the donor’s immune system matches the patient’s. Doctors…
-
To Transplant or Not? Depends on Insurance…
We had an appointment with Dr. Rachel Salit at Fred Hutchinson Cancer Center in Seattle this morning. We went in thinking that we wanted to move ahead with R’s bone marrow stem cell transplant, because he’s developed a new high-risk gene mutation called NRAS. This mutation means the disease is…
-
Why He Looks Fine and Platelet Donation
The photo of R in the tiny orange car was taken a few days ago. R went down a roller coaster carved into the side of a mountain in Leavenworth, WA. Does he look sick to you? I know. He’s having a blast and feels few symptoms associated with myelofibrosis…
-
The Time Has Come
Friends, it’s time. We didn’t expect it this soon, but hey, we’re gonna roll with it. R recently underwent another bone marrow biopsy, which revealed that he has developed a new gene mutation called NRAS. Studies show this mutation means that Acute Myeloid Leukemia is around the corner. He has…
-
What About Genetic Mutations?
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…
-
The Latest + NIH Impacts on Research
The image above is from part of an article in the April 27th New York Times. The headline reads: Medicine Spares Cancer Patients From Grisly Surgeries and Harsh Therapies It’s worth sharing because funding for cancer research is at risk and this affects us all. The article goes on to…
-
New Drug Trial
I haven’t written in a while, but there hasn’t been much to share–until recently. For those of you who have been following along, you know the spleen plays a big freaking role in this cancer. Here’s a little refresher: People with Myelofibrosis have a bone marrow problem. Bone marrow is…
-
Hurry Up and Slow Down
The one thing I thought we’d have after our appointment today is a clearer plan—primarily when it will happen. How much time do we have with life as we know it, and what happens next?
-
MD Anderson Consult
On October 15th, R and I saw a doctor at MD Anderson Cancer Center in Houston. The doctor seemed well-versed in R’s health history, including lab work results (blood counts), spleen size (still much too big), gene mutations (JAK2 and ASXL1), the level of fibrosis (scarring) in R’s bone marrow,…
-
Drug Trial Postponed X 2
R went in for his monthly drug infusion last week and was told they could not go ahead with it because his neutrophils were too low. The trial drug can lower a person’s neutrophils, so if they’re already low, they don’t want to risk lowering them further. Neutrophils are the…
Myelofibrosis--A Personal Journey 