Tasigna and myeloproliferative neoplasms | myMPNteam

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Allele Burden With JAK2

A myMPNteam Member asked a question 💭

I see some of you talking about your allele burden though my hematologist has never mentioned that to me. How can I find that out?Is there a separate test for that? I did test positive for JAK 2 through blood work and had a bone marrow biopsy. Would my allele burden appear in one of those?

A myMPNteam Member

In my experience, the various mutations and corresponding VAF is from something called a Rapid Heme Panel. I had this test as part of the several investigative tests that were performed before I was… read more

Does Anyone Here Know If JAK2 Inhibitor Meds Work If You Are JAK2 Negative? Just Curious...I'll Ask My Doc Next Visit As Well.

A myMPNteam Member asked a question 💭
A myMPNteam Member

May all be well!

Why Are You Constantly Fatigued?

A myMPNteam Member asked a question 💭

I have PV

A myMPNteam Member

Dear Ruth,

I am lucky to have access to information and to be in a community of people with other types of chronic illness who share a lot on information and new research. As they share with me, I… read more

I Have ET With JAK2 +9.4%. What Does 9.4% Mean? Does It Give Any Indication Of My Propensity To Platelet Overproduction? And Prognosis?

A myMPNteam Member asked a question 💭
What Is a JAK2 Mutation? Read Article...
A myMPNteam Member

Thank you, Tatiana!

You are so knowledgeable. I asked my specialist at a recent appointment Whether my percent of mutated alleles that are JAK2 positive Have any correlation to the severity of my… read more

I Have ET And I Repeatly Get Shingles I Have Had The Shingrex Vaccine But Still Getting Them Has Anyone Else Experienced This

A myMPNteam Member asked a question 💭
A myMPNteam Member

Dear Kathyryn,

Shingles being the reactivation of varicella-zoster virus (VZV), the same virus that causes chickenpox, it is usually linked to our immune system being a bit dysfunctional. MPNs can be… read more

Brain Fog

A myMPNteam Member asked a question 💭

I have been diagnosed with ET 4 months ago, my platelets are at 900.000, I have what I'm guessing is brain fog. Anyone every have it? Is it due to being under stress? This weekend, Easter, I forgot single things, a lot!!! I'm a little stressed. Is it just stress and my ET? Does this new symptom mean my platelets are increasing? Is this what brain fog is? Worrying a little bit if simple things I forget.

A myMPNteam Member

If that is an option, take it. You can get support for cognitive dysfunction and that makes life easier.

Has Anyone Had Ringing/humming In The Ears? It’s Continuous And Has Been Going On For A Few Weeks?

A myMPNteam Member asked a question 💭
A myMPNteam Member

Hi Edna,

Tinnitus in ET and PV is considered to be due to too many blood cells (platelets in ET and red blood cells in PV) in the blood vessels
"ET may also cause hearing problems, such as tinnitus… read more

I Was Diagnosed In 2013 With ET. Biopsy Confirmed The Jak 2 Mutation. Is This MPN Condition Classified As Cancer?

A myMPNteam Member asked a question 💭
Conditions Related to Myeloproliferative Neoplasms (MPNs) Read Article...
A myMPNteam Member

I also was told by a doctor that it wasn’t cancer. She told me to ignore anything on the internet. Found a second doctor who listens and helps so grateful it is treatable

Does Anybody Has Ringing In Ears With ET??

A myMPNteam Member asked a question 💭
A myMPNteam Member

I have continuous ringinging in ear and my doc says it's nothing to do with MPN. But I think it is because of low blood flow in head and neck
What could be the possible reasons of this ringing in… read more

Why Are Doctors So Reluctant To Use The Word Cancer In MPNs Or To Dismiss Quality Of Of Life Impact?

A myMPNteam Member asked a question 💭

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

A myMPNteam Member

lol... Just an old expression!