Has Everyone Who's Been Diagnose With An MPN Had A Bone Marrow Biopsy Done? | myMPNteam

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851 questions
Has Everyone Who's Been Diagnose With An MPN Had A Bone Marrow Biopsy Done?
A myMPNteam Member asked a question 💭

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

posted July 3, 2021
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A myMPNteam Member

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

posted April 15
Ocular Migraines
A myMPNteam Member asked a question 💭

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

posted June 6, 2021
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A myMPNteam Member

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

posted January 29
Which Supplements Or Vitamins Do You Take?
A myMPNteam Member asked a question 💭
posted April 26, 2023
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A myMPNteam Member

Also with the iron, it is better absorbed if you drink OJ when you take it.

posted February 2
Does Anyone Have Ringing In Their Ears Intermittently With PV?
A myMPNteam Member asked a question 💭

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?

posted January 15, 2021
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A myMPNteam Member

I am now on OJJAARA and the tinnitus has increased more, or it simply changes with the blood counts. My hearing aids have the ability to add a tinnitus masker but that was more annoying than the… read more

posted March 11
What’s The One Thing That's Helped You Most With Fatigue?
A myMPNteam Member asked a question 💭
posted May 17, 2023
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A myMPNteam Member

I center in on raising hemoglobin by selecting foods that do so. Raisins, Dates, OJ, Oranges, Apricots (unsulphured,) Pom juice.

posted November 27, 2023
What MPN Symptoms Do You Have That You Didn’t Expect?
A myMPNteam Member asked a question 💭
posted September 27, 2023
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A myMPNteam Member

Itching + burning toes.

posted January 31
When Did You Start Taking Drugs To Decrease Platelets?
A myMPNteam Member asked a question 💭

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

posted March 27, 2023 (edited)
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A myMPNteam Member

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

posted April 5
Who In Your Life Best Understands How Having MPN Affects You, And How Do They Support You?
A myMPNteam Member asked a question 💭
posted June 10, 2022
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A myMPNteam Member

Mine came from Norway and Germany

posted August 8, 2022
Posible Side Affect Of Hydroxurea?
A myMPNteam Member asked a question 💭

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.

posted December 18, 2022
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A myMPNteam Member

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

posted November 27, 2023
In What Ways, If Any, Has Your MPN Affected How You Consume Alcohol?
A myMPNteam Member asked a question 💭
posted April 19, 2023
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A myMPNteam Member

I pretty much quit years ago anyway. MD Anderson claims 2 drinks daily for men and one for women are recommended maximums. They really recommend zero as alcohol is a gene splitter but they know that… read more

posted October 13, 2023
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