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nohrt4me (Jean) avatar

ET progression

Blood Cancers & Disorders | Last Active: 8 hours ago | Replies (13)

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Profile picture for eloise999 @eloise999

@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.

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Replies to "@nohrt4me my doctor has not said anything to me about progression, although I saw in his..."

@eloise999 Progression to MF or leukemia seems to be fairly infrequent, so most docs don't want to put it on the table front and center. I only pressed my doc about my chances for progression because of the pending open heart surgery. ET onset was 18 years ago for me, and it used to be a rule of thumb that people began to have more problems after 20 years. But I think that with better monitoring and treatment that has changed. Hopefully that's the case!