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New to Pegasys for ET - advice please!

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

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@nohrt4me

Not sure if this is standard of care nationwide, but most acute cancer patients get counseling before going on infused chemo. BUT if you are going on HU and you ask for a session with the chemo nurse in my health care system, they laugh in your face. (Literally happened to me.) I had a FB page for ET patients for awhile, and this experience was common.

As a result, you get a lot of scared patients reluctant to take HU. When you look at the package info or look up stuff on the Internet, that's also scary. If doctors want more compliant patients they need to provide more compassionate and clear education.

If you can afford it and your doc is willing to prescribe Peg, I say try it. It is certainly better than running a stroke risk. If you find you dislike the Peg side effects, you can fall back on HU.

In my case, I bit the bullet, took the HU, and, five years in, remain on a low dose with good platelet levels. I'm 68, my hair and nails are fine, I am not nauseated, no side effects to speak of. And I have not had a stroke or clot.

But I get why people are scared, and info from the cancer clinics needs to improve. (And don't think I haven't told my clinic that ...)

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Replies to "Not sure if this is standard of care nationwide, but most acute cancer patients get counseling..."

Thank you for your reply. That is encouraging. I’m reluctant to go on HU but will probably start around January 9th. I’m worried about the side effects. My platelets are 681. Next blood test January 3rd.

Hi, how much is Pegasus? What are the side effects and criteria to take it? Insurance covers it?
Many ppl say anyone with a blood disorder should see a MPN Specialist, I want to. Do you know anything about this?