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Polycythemia Vera: Just been diagnosed
Blood Cancers & Disorders | Last Active: 4 hours ago | Replies (400)Comment receiving replies
Thank you…just taking it day to day. I’ve had three phlebotomies so far. My levels were 18.5 and 58 before 3rd draw. They started at 21.3 and 68. My ferritin levels were only at 8 before I started. The fatigue and joints aching, have been my biggest side effects. My vision definitely has been affected, but that could just be age. Honestly, since last summer I was thinking all these symptoms were from starting menopause because my periods started to be a bit irregular. Lots of similar symptoms.
Replies to "Thank you…just taking it day to day. I’ve had three phlebotomies so far. My levels were..."
Heeey! This is the first time I’ve read someone compare the PV symptoms with those of menopause. I am in EXACTLY the same situation. Tingling, headaches, brain fog, flush face, all PV symptoms and all menopause as well. I guess in the end it doesn’t matter which is causing what, as long as we keep our blood counts in check. It really feels like we are being hit with a double play but we move forward. I was diagnosed in January. I’m 56 and began “The change” just over a year ago. I had 6 weekly phlebotomies and then monthly and now I’ve gone 8 weeks. On and off Hydroxyurea. When stopped platelets shot back up so I’m on them for life I’m told. Played with dosage and for 10 weeks I’ve been steady so hoping we got it right. Just 3 X a week which isn’t bad. Also it’s super cheap compared to the other medication that is offered if this one doesn’t work. I wish you luck and look forward to seeing you get this crap under control 😊
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I was just diagnosed in April and have had 5 phlebotomies. The crashing headaches stopped after 4 draws. The fatigue and achy joints is still with me and numbers are good, CBC yesterday I was at 12.8. I don't take meds other than a low dose aspirin daily right now. I do take Adderall for my ADHD which I need & it helps.
My oncologist told me at my first visit that I'd not likely need a bone marrow biopsy for a couple/few years. I did ask him about gummies the first visit, at least I believe so, I'll double check that next week when I see him. I like them to help me get better sleep at times, my brain doesn't like to shut off 😉
Hard to rest as a single Mom, I raised my 3 but they're all grown. My grands are 16&14. If at all possible ask for some help from family & friends. I'm blessed with many who help when I need it. My problem was asking.
My girlfriend knows I'm a visual person, she put together a color coded systems with magnets I put on fridge and if I have a purple day (very busy), I have 2-3 blue days following which are essentially resting. I don't like it but the hope is the days of rest needed get fewer and fewer. My idea of not doing much apparently to others is doing a lot 🙃
Good luck, ask away, this is a great group. It takes a village 💪 🙏 ❤️