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Prior to being diagnosed with PV in 2021 I was not having any fatigue, dizziness or brain fog. Now I have all of above. Do others have an opinion my symptoms are results of the hydroxurea or my PV. My suspicion is the drug.
Thanks 😎
Night sweats keep me awake. I also have nightmares most night.
Marjorie, I'm so sorry to hear you're having such a hard time sleeping. It's been a few weeks now since your surgery, and I pray for you every so often when I remember our conversations, hoping that… read more
Hello,
Does anyone have more than one mutation? I originally had just JAK2. However, now my blood is showing two other mutations..
JAK2 V617F
FBXW7
CALR
I just have JAK2.
My hematologist is thinking about switching me from hydroxurea to jakavi . I’ve been on hydroxurea for 2 years but my hematacrit and hemoglobin go up and down like a yo-yo. My doctor thinks Jakavi might give me more stable blood counts. However my research indicates a higher chance of skin cancers with Jakavi. Has anyone experienced more serious side effects while on Jakavi.
Just had my first iron infusion 2 days ago. Currently feeling worn out. Is this normal after an infusion and normally how long does it take to start feeling more energy. Last month my hemoglobin was 112 and hematacrit was .44.
Thanks. Hopefully I’ll feel better soon.😎
Not knowing if you have been diagnosed with gout in the past, but if so, then you know that usually the big toe is affected and becomes extremely painful, red and swollen. However, other joints can… read more
Im taking Jakafi. My pallettes are down to 300 so I still take the Jakafi for my spleen enlargement
Hi there!
Does anyone on here have the CSF3R gene mutation? I just did some research that connected it together with CNL. I would just like to hear your story.
I have the CSF3R gene mutation and was diagnosed with an early and evolving MPN in 2/22. It’s just my guess and hopefully will be finally able to get a proper diagnosis at Vanderbilt next week. I’m so ready to find out what I’m dealing with.
I appreciate any input, thank you! And I hope everyone has a wonderful Friday! 😊
Hi Faith2, thank you so much for sharing your story with me. It’s very encouraging to know I’m doing what needs to be done. I’ve had the GI bleeding as well with a number of trips to the ER and being… read more
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