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lourdene (@lourdene)

New to Pegasys for ET - advice please!

Blood Cancers & Disorders | Last Active: Feb 5 8:49pm | Replies (20)

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Good question! I have been going over this in my mind for a couple of weeks. At first I felt that taking a chemo drug for a disease that has been stable for 30 years makes no sense. Then when I learned more about JAK2 I accepted that I am high risk and I have to do something. I am more afraid of the side effects of HU, although I realize that Pegasys has side effects too. But it’s not chemo! But now I am wondering if I made a too hasty decision, given the cost of Pegasys, the fact that HU seems to be a more common treatment and my concerns about injecting myself with a refrigerated product when I like to travel. But I just got a text that the Pegasys will be available tomorrow so I have to put this decision behind me.

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Replies to "Good question! I have been going over this in my mind for a couple of weeks...."

I understand your fear. I am 78 and was just diagnosed June 2022 through extensive labs and bone marrow biopsy. I have ET JAK2.

The hematologist put me on 500 mg Hydroxyurea daily. I started getting daily headaches and a first ever vertigo attack. Hematologist told me to stop HU for a few weeks while I saw ENT. I had various negative tests so she started me back on HU 500 mg every other day. I think my body is starting to adjust to HU. Last lab my platelets were 498. I see her on January 3. I am hoping I can continue on every other day.

There is a lot of information on Pegasys on this website. Good luck with your decision, Eileen