Category: Uncategorized
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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…
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Damn Spleen!
R and I went to see a nurse practitioner at Fred Hutchinson Cancer Center in Seattle yesterday to discuss his newest symptoms: major leg and foot cramps, mostly at night (it’s horrible to watch him go through these) and rapid weight gain.
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A Match
A few things have happened since the last time I wrote—one is a medication change, and the other is news on a stem cell donor.
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Hope Springs Eternal
R saw Dr. Anna Halpern at Fred Hutchinson Cancer Center (Hutch) this week. She specializes in Myeloproliferative Neoplasms (MPNs). “MPN” is the umbrella term for a specific group of blood cancers. There are seven types of MPNs. The primary three are Polycythemia Vera, Essential Thrombocythemia and Myelofibrosis – all of…
Myelofibrosis--A Personal Journey 