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Newly diagnosed with Essential Thrombocythemia

Hi everyone. I was diagnosed with ET last week. I've been told to start Aspirin 75mg daily and peginterferion alfa 45 mcg injection once a week. I'm 46 and previously had bladder cancer back in 2002. My first follow up appointment is in a month.

What should I be asking of the haemalogist as my brain is a mush at the moment. I've had a good read of men voice which has been very helpful.

Just how draining are the side effects to peginterferion and what sort of infections do you all suffer from. I get a lot of urinary tract infections as I have ongoing problems with my urostomy.

Has anyone been to the patient forums that mpnvoice organise.

I'm sure this will be the first of many posts as I get my head around this latest medical challenge


2 Replies

Thanks for posting and sharing your story! I'm sure one of our members will respond soon. In the meantime, be sure to check out our videos here :https://www.patientpower.info/myeloproliferative-neoplasms


I don't have a real answer as I went the Hydroxeurea route. I had zero side effects while on it, though some people report they just cannot take it. Many people report nausea and flu-like symptoms while taking the interferon route, some pretty bad. There seems to be two camps of doctors, those that swear by interferon and perhaps more that go with Hydroxeurea. A recent study said that the results of one was no better than the other, though they seem to be studying the long term effects of interferon to see if it could be better.


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