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Polycythemia Vera: Just been diagnosed

Blood Cancers & Disorders | Last Active: Aug 26 12:21pm | Replies (395)

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@vanna1031

I’m awaiting my JAK2 V617F status and overwhelmed by so much information. I’ve had several episodes of left side abdominal pain over the years. It was long lasting and recently I was diagnosed with constipation in urgent care. My HCT was slightly elevated but the rest of my blood work was ok. My severe pain was relieved with laxative treatment but it still felt sore over the last 3months. Lots of gurgling and I self treated for trapped gas etc as I thought I was dealing with digestive issue. I also laid off milk and added fiber. That pain is much better but I saw my Doctor this week and my HGB (16.8) HCT (49.2) RBC (5.49) WBC 4.5 BUN 21mg. He ask me to return for some additional bloodwork which included Erythropoietin ( 2018 was 3.4) and I just received 2/2023 results of (4.7) & I’m waiting for JAK V617F. I had no idea what it was until I goggled it. I’m so afraid. In past blood work slightly evaluated readings I was told in dehydration. And retested several months in a row and I would get normal but on the high end readings. Was my abdomen pain a swollen spleen. Does anyone have any insight while I wait this all out. If my JAK is negative can I be relieved? If I took cold medicine (Sudafed ) the day before bloodwork would that effect my blood?

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Replies to "I’m awaiting my JAK2 V617F status and overwhelmed by so much information. I’ve had several episodes..."

Just wait for your results of jac2 once back and if positive they will put you on the appropriate medication it’s all overwhelming to start with and I know worrying

I tested negative for the jak2 went to the hematologist and he did more blood tests. he's tests also came back negative for bone marrow cancer. but now i have low iron never had that before. So now ever six weeks I get blood tested I feel like there just waiting to see where the cancer is going to pop up. So far no cancers but the stress and reading materials I'm starting to believe is just making matters worse. I see you take sudafed so did I for many years. It cleared up my sinuses and bronchial congestion. My doctor has said repeatedly not to take it. So I haven't taken it since last year my nose is always runny. I was diagnosed with polycythemia disease this summer. I also have long term lyme arthritis but that seems not a concern to the doctors. So after 7 months I'm still not sure what is wrong with me. Im sure this is little help but your not alone with worry