Questions & Answers

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

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?

I noticed that both my hematologists avoid to use the word cancer when talking to me. When I got the diagnosis, the hematologist downplayed ET so much, despite the fact that I was in fever, pain and had so much brain fog I had to take a nap during the appointment. All these are ET symptoms, but apparently not for my doctor. So I was fine in his eyes. Being young was the reason
This was very detrimental as my partner thought and still thinks that ET is a bit like a headache, nothing scary, and… read more

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

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.

*************************
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.)

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 wanted to pass along a good article with slides that just appeared on WebMD:
https://www.webmd.com/dvt/ss/slideshow-dvt-bloo...

I have PV, having fortnightly phlebotomy's and are taking 1000mg hydroxyurea daily. I have been taking HU for 3 weeks now, but my hematocrit levels are still at 61%. How long would you expect it to take to start decreasing your levels? I guess it is a bit of an open ended question, but what have others experienced out there, to give me an idea. Much appreciated.

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.