Questions & Answers

Diagnosed just in May 2020 with PV. All my counts, Hematcrit, WBC's & Platelets are in good range. Recently developed intermittently ringing in my ears. Anyone else have this & is there any treatment for it you've found?

Is a baseline bone marrow biopsy standard in the diagnosing of a MPN or for monitoring it?

I've been wondering how cognizant we are of the absolutely necessary precautions related to its use. Hydroxyurea is poisonous, you know. These are some general directions from pharmacy flyers, and I've added some cautionary suggestions from my own experience, for whatever its worth.

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Proper Use:

Wear disposable gloves when handling the bottle or medicine. (I really doubt that many do this. I also believe that the container shouldn't be stored with other medications.)

I’m new to the site and just received positive JAK2 mutation results - discovered via a high platelet count at my regular annual physical. I’m in my mid-60s, in excellent health other than high platelet levels (800s), and all other blood levels and markers are normal and I had no symptoms. My hematologist suspects ET, but I will meet with him next week for confirmation & a full consultation and review of treatment options. The only other remarkable issue I’ve had over the past few years are… read more

Patient Power has a good article that I wanted to pass along. I think this is a frustration for most of us at one time or another. The title is:

Eight Ways to Improve MPN Doctor Communication

https://www.patientpower.info/slideshow/ways-to...

And the answer is:
Things that can lower your platelet count include:

quinine, which is found in tonic water.
alcohol.
cranberry juice.
cow's milk.
tahini.
That's why I always have a nice cold beer or two after a sweaty day volunteering with Habitat for Humanity. LOL. Doctors will tell you no alcohol. I say live and enjoy your life.

Many of you were so kind to reassure me about the bmb that was in the planning stages a few months ago. I am 87 years old, diagnosed with PV in 2019, did well on hydroxyurea and aspirin for four years, maintaining hct level within target range, and only two phlebotomies during that time. Stopped taking the HU in January of 2023 due to likely side effects of HU (swallowing difficulty, hoarseness). Referral to ENT specialist with trial of omeprazole and anti-reflux diet because doctors doubted my… read more

Hey lovely people, hope you’re all doing great
I want to know when did you start to take drugs to lower platelets counts? How long after diagnosis and at which platelt count? What drug did u take
Also state if you have any condition other than MPN that increase your risk.
I am on anagralide and aspirin as my platelets are over 900 but i want to ask my doctor to stop the anagrelide and only stay on aspirin.
Want to know your experience.
I am 51 wit ET (CALR+) and i also have high cholesterol… read more

I began thinking about the tremendous changes a diagnosis of an MPN brings to one’s life. For me as an old nurse, but one who always tries to keep abreast of what’s going on in the medical world, it was a shock to be told after routine annual labs that I was being referred to an oncologist due to my CBC being “out of whack,” with the likelihood of a blood cancer that I had never heard of. Then came the very painful bone marrow biopsy with confirmation of the JAK2 mutation pointing to… read more