New to Pegasys for ET - advice please!

Welcome, @lourdene. There are many members here living with essential thrombocythemia with JAK2.
Specifically, I believe @nohrt4me @mortysdad @starchild have experience with Pegasys (peginterferon alfa-2a) and may be able to offer suggestions about cost and this drug.

Lourdene, given your 30 years experience with ET, you may also be interested in these related discussions:
– People living with ET and taking Hydrea: Anybody setting records? https://connect.mayoclinic.org/discussion/anybody-setting-records/
– I have JAK2 ET and MPN: Anyone else have these symptoms? https://connect.mayoclinic.org/discussion/jak2-et-and-mpn-symptomscause/
- High platelets, Jak2, ET, and pre-fib new diagnosis https://connect.mayoclinic.org/discussion/high-platelets-jak2-et-and-pre-fib-new-diagnosis/

May I ask what concerns you about taking Hydrea (hydroxyurea)?

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.

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

Lourdene, I'm in an almost identical position to you, having had high platelets for decades but just this fall diagnosed with JAK 2. I've been stalling, as I am fairly symptom free at present, and I wanted a Christmas and birthday season without the weight of deciding or stress of experiencing new drugs. A recent second opinion also convinced me that I had to take one of the less than perfect "medications" for the condition. The Mayo doctor I saw said it might be a good idea, since ingesting chemo products repels me, to try interferon. I will look into the cost and see if my local doc is amenable. The Mayo doc said that interferon has the advantage of disrupting JAK2's disruption in the marrow, as well as stopping further disease progression, if taken at moderate doses at least two years past reaching a maintenance ideal point for both hemocrit and platelets. My understanding is that Interferon will work more slowly, but that slow and steady is an advantage if you can hack the side effects. I will certainly try to keep up with your posts. I'll add my experience in the new year.

I am also on MPN Voice…healthunlocked.com. There have been quite a few Pegasys discussions. It also good to hear other voices discuss their treatments.
Eileen

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 ...)

I think in the United States some insurance companies make you do step therapy…hydroxyurea first before switching to Pegasys for ET. HU is inexpensive and Pegasys is very expensive.

My hematologist mentioned the possibility of Myelofibrosis…so I was very relieved with ET JAK2 diagnosis. I had no hesitation starting HU. I am 78 and this is my first year taking HU. I researched all possible treatments and they all have side effects.

Happy peaceful 2023! Eileen

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.

Nobody WANTS to go on meds. I get it. I took a week off work when I started HU because I thought I would be sick and disfigured. Didn't happen.

There are days when I feel resentful about having a chronic condition or wonder what unknown thing I did to cause it. Americans beat themselves up a lot for being sick. Lots of us have friends and family who are happy to denigrate our doctors' treatments because they read some stuff on the Internet or talked to somebody with a community college degree in business who runs a quack infusion clinic. My sister in law kept asking me why I was taking the HU if it wasn't making me better.

I think we all need to be aware of the cultural and familial factors that create fears and reluctance to accept our situation and trust our doctors.

Well said! The Chemo word has always been scary.