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nohrt4me (Jean) avatar

ET progression

Blood Cancers & Disorders | Last Active: 7 hours ago | Replies (13)

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Profile picture for nohrt4me (Jean) @nohrt4me

@eloise999 Very welcome! I'd be interested if others have docs with the same info about progression. Usually docs focus on clot prevention, and progression is ignored.

There is sometimes so much apprehension and fear mongering around HU in the group that I start wondering if I am a dupe for taking it. So my doc's info was helpful.

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Replies to "@eloise999 Very welcome! I'd be interested if others have docs with the same info about progression...."

@nohrt4me my doctor has not said anything to me about progression, although I saw in his written notes that he thinks I will have slow progression. Of course, since he did not tell me that, I don’t know why he believes so. I am on HU too. It has lowered my platelets and did it quickly. However, I know what you mean about the negative comments about HU. Unfortunately, all our options have serious side effects. However, HU usually works well and is tolerated, and it is inexpensive and readily obtained. I hope I can stay on it for a long time.