Myeloproliferative Neoplasms Questions and Answers | myMPNteam

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Real members of myMPNteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
993 questions

Anything We Myleofibrosis Patients Can Take To Mitigate The Fatigue?

A myMPNteam Member asked a question 💭
A myMPNteam Member

See a Functional Medicine practitioner. I highly recommend Pegasys Interferon.

posted June 29

Has Anyone Heard How The Clinical Trials Of Rusfertide Are Going?

A myMPNteam Member asked a question 💭

Am Anemic From Meds. What Can Be Done?

A myMPNteam Member asked a question 💭

Have ET with JAK 2.

A myMPNteam Member

I will❣️…..remember it’s your body and you make the final decision!

posted June 24

Has Anyone Benefited From An MPN Specialist Versus A Regular (for Lack Of A Better Word) Hematologist/oncologist? How?

A myMPNteam Member asked a question 💭

One of our members suggested it, and I want to explore it. Benefits/drawbacks? Anything change from your original treatment? Thanks!

A myMPNteam Member

I completely understand that. The ones I found were all 4+ hours away from where I live. Thankfully my insurance will cover them but the drive isn't fun. But, I think it will be worth it.

posted 13 hours ago

Are You Frustrated With Finding Effective Treatments For MPNs?

A myMPNteam Member asked a question 💭
A myMPNteam Member

Steve, Excellent videos. Thank you
I think a basic takeaway aside from the complex mechanism of hepcidin function which reduces the absorption and release of iron for RBC production, is the reason… read more

posted June 26

How Is Allel Burden Determined, Pathology From BMB Or From CBC?

A myMPNteam Member asked a question 💭

The thought I’m having is that cytoreduction meds lowers burden. If this is true, does that not suggest that it also helps with disease progression? “No meds reduce disease progression” confused.
Maybe burden reduction is achieved with Ropeginterferon 2B = cure?

A myMPNteam Member

It is a genome test. Mine was done here: Myeloid Malignancies Mutation
and Copy Number Variation Panel
by Next Generation Sequencing
Very interesting and took about 2 weeks to show up in my test… read more

posted June 21

Does JAK2 ET Affect Bone Density?..if So, Is There Any Point Doing Anything?

A myMPNteam Member asked a question 💭
A myMPNteam Member

I have seen a specialist, Dr. Rocco, she recommends several medications that can stop the progression and rebuild density
Abaloparatide/Tymlos Teriparatide/ Forteo Romosozumab/Evinity
Stop the… read more

posted June 15

I'm Looking For Other Patients Of Dr. Perkins At Medical City. I've Been His Patient For PV For About 10 Years And Believe He Is Experience

A myMPNteam Member asked a question 💭

I have a mild case of PV with few symptoms that are treated effectively with Jakafi.

A myMPNteam Member

Minimal symptoms

posted June 14

What Is The Difference Between Flavix And Aspirin?

A myMPNteam Member asked a question 💭

Today I went for a check-up at the specialist hospital and the doctor changed my medication. Instead of taking Aspirin 81, the doctor gave me Plavix 75.
In Vietnam, the quality of medical care, especially the attitude of doctors, is a very big problem. When I asked the difference between Plavix and Aspirin, the doctor did not answer.
So, if you have ever had your doctor change your medication, please let me know! Thank you very much.

A myMPNteam Member
I can refer to many articles on the web but I want your real experience
Thanks for reading my… read more

posted June 14

How Do I Message Someone On My Team?

A myMPNteam Member asked a question 💭
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