Has Everyone Who's Been Diagnose With An MPN Had A Bone Marrow Biopsy Done?
Is a baseline bone marrow biopsy standard in the diagnosing of a MPN or for monitoring it?
Dear Cindy2,
A bone marrow biopsy is a standard for diagnosing essential thrombocythemia and primary myelofibrosis, and even for polycythemia vera
A responsible hematologist will never put a… read more
Ocular Migraines
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
Dear MJGee
I experienced an ocular migraine the day I suffered a mild heartache in November of 2017 which led to my diagnosis of ET Jak2+. Since, I experience about 6 a year. I also, started with… read more
Which Supplements Or Vitamins Do You Take?
Also with the iron, it is better absorbed if you drink OJ when you take it.
Does Anyone Have Ringing In Their Ears Intermittently With PV?
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?
What’s The One Thing That's Helped You Most With Fatigue?
I center in on raising hemoglobin by selecting foods that do so. Raisins, Dates, OJ, Oranges, Apricots (unsulphured,) Pom juice.
What MPN Symptoms Do You Have That You Didn’t Expect?
Itching + burning toes.
When Did You Start Taking Drugs To Decrease Platelets?
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 was 52 when I got diagnosed with ET and my platelets were around 600. My hematologist immediately started me on hydroxyurea. I had originally been having terrible headaches before my diagnosis and… read more
Who In Your Life Best Understands How Having MPN Affects You, And How Do They Support You?
Mine came from Norway and Germany
Posible Side Affect Of Hydroxurea?
Does anyone take Hydorxueria before bedtime? I was taking it once a day in the morning & a few months ago started taking 2 times a day--AM & PM. Have developed dreaming every night--wondering if related to the Hydroxy.
We are all different. I notice that Genette had no trouble with HU. For two years I had no trouble with once a day, but I have had problems all year when med team has wanted to gradually increase to… read more
Why Are Doctors So Reluctant To Use The Word Cancer In MPNs Or To Dismiss Quality Of Of Life Impact?
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
lol... Just an old expression!