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Polycythemia Vera: Just been diagnosed

Blood Cancers & Disorders | Last Active: 6 hours ago | Replies (427)
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@christina3444

Hello. Please trust what you are feeling. No one else knows you like you!
And, get an order for a blood test to determine if you have the JAK 2. Your GP can order that.
I consider myself lucky that of all the diseases and conditions that could have afflicted me as I got older, I have PV. That may sound odd but, so far, I take two capsules a day of Hydroxyurea and have a phlebotomy every two or three months. I take a low dose aspirin to help prevent blood clots. I get tired and have to pace myself but compared to so many people suffering from catastrophic illness, disease, Im OK. I was scared at the beginning because of the unknown but that’s expected. Google has its place but as I’ve said to a lot of people, a little knowledge is a dangerous thing.
You sound like a smart woman who has gone through a lot and come through it. This is just another challenge and with the right medical team you will get through it just fine.

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Replies to "Hello. Please trust what you are feeling. No one else knows you like you! And, get..."
momoffivetoo | @momoffivetoo | 4 days ago

I tried to get my gp to order it, but he said it’s outside his scope and I have to wait for the hematologist to order it. 😩

I’ll be honest - I have thought the same thing. I’m scared, but I have confidence that the doctors will give me proper care and get me through this! I lost my sister a few years ago to endometrial cancer; she died just 11 months after diagnosis (she was 46). It was a quick and painful death, so if I do have PV, I’m grateful it’s not something much worse. My husband of 30 years has said he’s not going anywhere, and we will get through every stop of this together!

Thank you again for your candid conversation!

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barnettnancy5 | @barnettnancy5 | 3 days ago

Cristinia, I also feel lucky that of all cancers I could I acquired PV. My husband died of Pancreatic cancer and endured terrible pain and wasting.
I am newly diagnosed and took my first dose of Hydroxy urea yesterday.My doctor is starting me very slowly 500mg every other day. Except for elevated Hb Hct Plts and +JAK2 I really am symptom free. I just turned 80 and feel optimistic that I will do well.
I wish you all well and will follow along with you . I will also seek your advice as my treatment advances and the need arisrs.

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