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

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742 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?

A myMPNteam Member

I had my first one in 2008 to diagnose ET. My second one is in 2019 when I was diagnosed with MF. I’ve had 3 more since.

posted 22 hours ago
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

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 💭
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?

A myMPNteam Member

yes, I have had it for some time and its is worse now. Hearing Aids help

posted December 1, 2023
What’s The One Thing That's Helped You Most With Fatigue?
A myMPNteam Member asked a question 💭
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 💭
A myMPNteam Member

Itching + burning toes.

posted January 31
Who In Your Life Best Understands How Having MPN Affects You, And How Do They Support You?
A myMPNteam Member asked a question 💭
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.

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 💭
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
Anyone Taking Pegylated Interferon For An MPN And If So How Bad And How Long Did The Side Effects Last?
A myMPNteam Member asked a question 💭

I have PV and am JAK2 positive. I was diagnosed two years ago and have been taking 1500mg Hydrea/per day for almost a year. It has been keeping by blood work and symptoms under control. I am under 60 and have concerns about staying on Hydrea long term. I just had a telemedicine appointment with a doctor at Johns Hopkins who also expressed concern about the long term use of this medication, particularly for me since I am also BRAC2 positive. We discussed two other options such as Jakafi or… read more

A myMPNteam Member

Update. The Jakafi/Pegasys combo is so effective, that after 17 months, my dose is going all the way down to 10mg/day Jakafi and 9 mcg/every TWO weeks. That's 10% of my original Pegasys dose! Wow… read more

posted February 15 (edited)
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