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Polycythemia Vera: Just been diagnosed
Blood Cancers & Disorders | Last Active: 23 hours ago | Replies (399)Comment receiving replies
I was officially diagnosed with PV in Dec22 after developing high BP when I attempted to give blood( irony not lost). Routine bloodwork at my GP revealed'thick blood,' which led to PV diagnosis by hema/onc and have been getting regular phleb. I have the JAK2 and wonder how that mutation even happens.I just saw a second hema/onc today, seeking more information. I am curious as to what medications, diets have been helpful. I had NO idea anything was wrong and want to do my part in staying healthy. Thanks!
Replies to "I was officially diagnosed with PV in Dec22 after developing high BP when I attempted to..."
Welcome!
When I was diagnosed, with PCV and Jak 2 positive, the first thing they did was a bone marrow biopsy. My only symptom was itching after bath and shower. I have a phlebotomy every 3- 6 month and 2 baby aspirin a day as needed to keep numbers down. My oncologist suggested chemo drugs to help with symptoms but said it would not cure the disease. I chose to just have phlebotomy’s and 2 baby aspirin a day. So far, I’m doing fine, at times, I feel a bit fatigued but find a quick rest and then a walk, gets me back on track. Each person and body is different, so you need to listen to your own body and try different things. I’m not on any special diet but was told to stay away from liver. Good Luck, I’m 74 and plan on at least 10 more years of fun. Find a Dr you like and trust. I did get 2 different opinions from different medical facilities.
I agree with "welcome to your new world" @cmcj and this forum has been a game changer for me. Eases any anxiety I may have over different symptoms or just the need for moral support from others going through the same thing. I consider myself a young 60, very healthy with my diet (I'm GF & DF to reduce any inflammation which causes autoimmune diseases, rampant in my family) and pretty high level of activity.
The hardest part for me so far is the extreme fatigue, I don't do resting well. I have found I have to manage my activity and have had to reduce it greatly. However my goal is to find my "new norm" with what hemoglobin # makes me feel the best. I was brought down to 11 (I'm 5'2" 125) and it's definitely too low for me and my guess is I'm now anemic which is causing the fatigue. I'm really hoping that is it when I get my CBC done this Tues.
I've read and seen from this group that getting a Saline infusion after each phlebotomy helps with the down days that can occur after it.
I'm only on one low dose aspirin daily, no other meds and both my HemoOnc doc & GP both don't feel I need any meds now. I'm not even getting a bone biopsy for a couple years from my first evaluation with the HemoOnc doc.
I've been reading as much as possible, I'm ignoring all references to once diagnosed you have 14 or 20 years to live. It has got to ve different for everyone and I'm in the best shape and healthiest I've been my whole life besides the stupid PV 🙃
Stay strong and ask lots of questions like you're doing!
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Welcome to this "new planet" @cmcj. To help you connect with others, I moved your post to this existing discussion:
- Polycythemia Vera: Just been diagnosed. https://connect.mayoclinic.org/discussion/polycythemia-vera-1/
I did this so you can read previous posts and connect with fellow members who have had PV for several years or just starting their journey like @nypara66 @draney @pamdg @chella65 @jerrlin @beebo @csgreetings @wendy517 and many others.
You might also wish to use the search function to find addition discussions about JAK2 and polycythemia vera, including tips on healthy lifestyle, diet, managing side effects, and treatment options.