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People living with ET and taking Hydrea: Anybody setting records?
Blood Cancers & Disorders | Last Active: Mar 28 11:40am | Replies (63)Comment receiving replies
Though I was diagnosed with ET, and JAK2 this summer, I still hesitate to take Hydrea because of my age (nearly 81) and CBC numbers are still in 600s. Does anyone know what statistics are of life expectancy of those who do not take a chemo drug? Have any studies been done re. this? What exactly is low risk and high risk? Any input you have will be appreciated.
Replies to "Though I was diagnosed with ET, and JAK2 this summer, I still hesitate to take Hydrea..."
International Prognostic Score for ET
Patient age less than 60 (0 points)
Older than 60 (1 point)
Prior thrombotic event
No: (0 points). Yes: (2 points)
Cardio vascular risks factors
No: (0 points). Yes: ( 1 point)
JAK2 V617 mutation detected
No: (0 points). Yes: (2 points)
Low risk is 0-1
Intermediate is 2
high is 3-6
Eileen
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Hello, Pumpkin. I'm 85, ET, CALR + and have been taking Hydrea for a little over five years, but just started the switch to Anagrelide. This morning as a matter of fact. The reason for my switch is a small ankle ulcer that has been slow to heal, but is now a week or two away from being cured. At this late date of 37 weeks of wound treatment--there was discussion about calling victory and declare the excellent treatment I received at two separate wound doctor facilities a success--there is little likelihood that Hydra is now much of a factor. It is likely, however, that it did play a major role in the ulcer materializing in the first place. Turns out there is a slight chance that an ulcer will develop in Hydra user very near the five-year mark for those who are taking a gram a day. Mine arrived right on schedule. Had I known about it, I would have requested a smaller dose and shouldered the risk because there doesn't seem to be much evidence to support the '450 platelets or bust' approach of many Hematologists. As to numbers, I've yet to find any trial that establishes a linear relationship between platelet count and circulatory accidents. However, common sense would, of course, suggest that if platelets are the cause of such events, then the more platelets we have, the greater the likelihood of a bad outcome. Over my five-year dance with Hydra, I became a wall flower (COVID didn't help). At any event, the fatigue induced by the Hydra was such that it became harder and harder to get motivated, and I slowly but surely stopped doing things I had done much of my life. The drug I'm switching to, Anagrelide, is, as you likely know, NOT a chemo drug, and I expect to become more active once the transition from Hydra is complete. I pass this along as my experience only, and, if I've read it once I've read it a thousand times, WE ARE ALL DIFFERENT, and react differently to the drugs. So take this with a shaker full of salt and I wish you well.