Did my labs this week and my platelets were in the the 900,000's. Trying to factor in why they continue to go up but I have a feeling the Hydrea isn't doing the job anymore, especially with me taking 3 pills a day. I fear the long term side effects of the Hydrea and because if this community I'm no longer scared to try Interferon. I have been told from day one that they side effects of Interferon are "bad" but after hearing all your stories I think it might actually be a better fit for me. I see my Hematologist today and will discuss is with her. Any questions I should ask?
Still intend on meeting with the MPN Specialist at Stanford in Feb for a second opinion.
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Zeppelin11
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my original hematologist was not keen on starting interferon and I wasn’t about to take chemo for 20+ years. I switched to an mpn specialist and because I’m young and pretty healthy otherwise my new hematologist said besremi would be my first line treatment..
so I think you’re on the right track. Please let us know how you do once you’re on it. I am the same as you in age and mutation (CALR)
Like you, I was refractory to hydroxyurea. I was also intolerant of it with unacceptable side effects and risks with long-term use. I have done much better on the interferons. I started on Pegasys then switched to Besremi. While I have PV, I also experience thrombocytosis. It only took 8 weeks at 45mcg to bring PLT within reference range. I am very glad I opted for the IFNs. My only regret is that i waited so long to switch to them.
Pegasys is one of the two first-line treatment options for ET. HU is the other first-line treatment option. Many MPN Specialists now prefer the interferons to treat ET and the other MPNs. providing there are no clear contraindications, it should be your preference that drives the decision of which treatment option to choose.
Bear in mind that most hematologists have little experience with MPNs. Many have little experience with the current treatment options. The PEGylated interferons are much easier to tolerate than the older forms of IFNs. Some docs have not had the opportunity to observe this in their patients. You may want to consider a consult with a MPN Specialist to ensure optimal MPN care. Here are two lists.
In terms of questions, suggest starting with a statement. Assuming this is what you are saying - "Having reviewed the available information, I believe that Pegasys is a better treatment option for me than hydroxyurea." The question would be "Are there any clear contraindications to Pegasys in my case?" FYI - here is the list of contraindications and cautions. (note a caution is not the same as a contraindication)(caution = modify dosing and monitor response).
Contraindications / Cautions .
hypersens. to drug/class/compon.
pregnancy 1st trimester
myelosuppression
anemia, severe
leg ulcer
avoid: breastfeeding during tx and for at least 24h after D/C
Worth trying interferon. If it doesn’t suit you, you can always switch back. Maybe ask if you could start on a low dose like 45mcg to let your body get used to it and up it later. Good luck
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Interferon
Interferon
Switch from IntronA to Peg Interferon? Anyone had experience of this?
Change from Interferon to Pegasys 
