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.
881 questions
Why I Feel Extreme Fatigue All The Time That Prevents Me To Do Any Work And Government Wont Aprove Invalid Pension?
A myMPNteam Member asked a question 💭
A myMPNteam Member

Fatigue is a staple of MPNs and it is explained away and dismissed, although it can be disabling
https://onlinelibrary.wiley.com/doi/epdf/10.100...

"Prominent symptoms include fatigue (92.7%), early… read more

posted April 12
Question About High Platelets In PV With Upcoming Surgery
A myMPNteam Member asked a question 💭

I have PV and have platelets in the 1000 range. My oncologist says no worries until it reaches a million. But I'm having a major surgery soon. Anyone know why high platelets are not important? Thanks

A myMPNteam Member

Tbat is very high and anesthesiologist might not clear you for surgery..

posted April 2
Does Anybody Have A Problem With Itching After A Shower My Itching Gets So Bad If I Could Step Out Of My Skin I Would Et And High Platlets
A myMPNteam Member asked a question 💭

It tends to last for about 15 hours

A myMPNteam Member

Hi
I have tried many antihistamines alone or in combination for my itching, without too much success. The only thing that really worked is to have 1g beta-alanine 30 min before the bath (shower),… read more

posted March 24
How Long Can We Live With Primary Mylofibrosis??
A myMPNteam Member asked a question 💭
A myMPNteam Member

As long as we are proactive

posted March 25
Why Is Plateletpheresis Not Done Regularly For ET/PV
A myMPNteam Member asked a question 💭
A myMPNteam Member

I’ve never heard of it

posted March 21
Hi I Gave ET With Jak2 Mutation M On Hydroxycarbamide 500 Mg My Platelets Are Still High How Long Would You Think I Will Be Taking This For
A myMPNteam Member asked a question 💭
A myMPNteam Member

There is no cure however Pegasys Interferon can lead to remission

posted March 21
Any Extra Precautions In Sun On Hydroxyurea? I Like To Go Out In The Sun And Sunbathe And Watch Softball Games. But Now I’m Afraid.
A myMPNteam Member asked a question 💭
A myMPNteam Member

I’m walking fear with most nowadays bc of the ET

posted March 21
Q.will Hydroxyurea Cause Stomach Ulcers 2. Will Hydroxyurea Will Get Fever Which Makes Discontinuing Of Drug
A myMPNteam Member asked a question 💭

How many weeks we can see results from hydroxyurea
Is anagrelide is going to stop
Hydroxyurea will lead anaemia for using of drug
At what conditions hematologist stop hydroxyurea
We have only option hydroxyurea so
Thank you
How to treat ulcers caused by hydroxyurea

A myMPNteam Member

if you start on pegasys ask to take both and see how your body react the better it works the more you can take less HU , this means lots of bloodvalue control

posted March 24
Hi Guys How Long After Diagnosis Of ET Did You Get A BMB Or Do You Actually Need One?
A myMPNteam Member asked a question 💭
A myMPNteam Member

Kelly I would ask for one sooner to get confirmation of the diagnosis. My husband was initially told he had ET because that’s what his symptoms pointed to. But when they did his BMB he was diagnosed… read more

posted April 1
Can I Take Cod Liver Oil With Vit. A?
A myMPNteam Member asked a question 💭
A myMPNteam Member

Thank you.

posted March 22
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