Category: Uncategorized
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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?
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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,…
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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…
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What’s In a Number?
It’s not ALL about the numbers, but they are a critical piece of the myelofibrosis puzzle.
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A Fork in the Road
The drug (Imetelstat)trial R continued at Fret Hutchinson Cancer Center in Seattle this week. Most of R’s blood work results remain stable–not normal, but stable.
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Myelofibrosis and Anemia
R went in for his monthly infusion of Imetelstat, one of the man drugs that’s being tested on patients with myelofibrosis. Surprisingly, they sent him home without the infusion.
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Drug Study Underway
A few people have asked how R is doing and if the drug study has gotten underway.
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Nerve Wracking 24-Hours
It’s been a weird 24-hours. An anxious 24-hours, honestly. But things aren’t as bad as they seemed yesterday.
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Enrollment in “Imetelstat Drug Trial”
Given the progression of the disease with the marrow scarring, Dr. Halpern asked R to consider joining a drug trial from the Geron Corporation, a biomedical company located in California (headquartered in the Philippines). The drug is Imetelstat.
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Potential Clinical Trials
We saw Doctor Halpern at Fred Hutchinson Cancer Center today to (1) have more blood tests and (2) discuss potential medical trials R might participate in. It’s always good to see the doctor. I read a lot about this disease and follow a super helpful Facebook group, all of which…
Myelofibrosis--A Personal Journey 