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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.
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I'm Thinking A Blood Test Would Show The Cause
A myMPNteam Member asked a question 💭

High platelets for 18months but still not able to identify the cause.Now going to have bone marrow biopsy, I'm just wondering if this is unnecessary pain or could this possibly show the cause.

posted September 23
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A myMPNteam Member

The symptoms you are indicating are all related to the MPN condition. I don’t think they know the exact cause but there are medications that might help

posted 3 days ago
Treatment For MPN Symptoms And Chemo For MPNs.
A myMPNteam Member asked a question 💭

Hate to bring up perhaps a touchy subject, but has anyone out there had experience with cannabis as a treatment for chemo side effects or even for MPN symptoms? Since I live in Maryland there is no longer legal issues, no particular stigma since majority of voters gave a go ahead on legalizing the product. For obvious reason, there is little to no hard data on this issue. Need to know what anecdotal info there is.

posted September 22
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A myMPNteam Member

Years ago a friend of my husbands was having chemo for his prostate cancer treatments side effects nausea and vomiting
He said one puff of the joint and he was good to go. I believe there is a place… read more

posted 3 days ago
Remove Spleen
A myMPNteam Member asked a question 💭

hi , once red the comparison between the spleen and a graveyard
if you remove it where are those dead bodies going
so removing the spleen does that not move the blood production ?

posted September 21
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A myMPNteam Member

MaryAnnYoung Thanks ,so stop of production of blood now i understand , what is the reason for spleen and liver to stop ?
because i understand all blood production in mf stops

posted 7 days ago
Thrombophilia Profile - 4G/4G Polymorphism In The PAI-1 Gene
A myMPNteam Member asked a question 💭

When you were diagnosed with a myeloproliferative neoplasm, did your hematologist/oncologist recommend a thrombophilia profile (pathogenic mutations for factor II, factor V, factor XIII, MTHFR, PAI-1 4G/4G or 4G/5G, etc.)
I found out that I have PAI-1 (Plasminogen-Activator Inhibitor-1) 4G/4G mutation, which means my body makes too much of an inhibitor of fibrinolysis, fibrinolysis, in simple terms, being the process that does not allow blood clots to grow or accumulate. If one has this… read more

posted September 21
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A myMPNteam Member

I also was only tested for JKAK2 mutation. That's a good idea to have further genetic tests as it will guide current and future therapies.

posted September 23
I Have A Lot Of Joint Pain. Sometimes It’s Really Bad At Night. How Do You Know If It’s From ET/PV Or Just Arthritis?
A myMPNteam Member asked a question 💭

I have terrible joint pain. In my hips ,knees wrists and fingers. It hurts a lot at night. I’ve read that MPN’s can cause inflammation but how would you know if it’s from the mpn or arthritis?

posted September 21
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A myMPNteam Member

no one seems to know! although, MPNs are known for their inflammatory effects. to me, it’s just one big ball of wax. i hurt like crazy at times!

posted 20 hours ago
Who's Taking Or Took Jakafi? My Doctor Told Me He Can't Take Me Out Off.
A myMPNteam Member asked a question 💭

Six months of Jakafi. Spleen only reduced 2cm. I want to stop taking it.

posted September 20
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A myMPNteam Member

Thank u Rspriggle1 for your respond

posted September 23
Is There A Way To Contact Another Member By Email Or?
A myMPNteam Member asked a question 💭
posted September 19
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A myMPNteam Member

Good question Pat
I’ve sent my email address to you . Frankly not concerned if other have thus.. we all share our health concerns !🤓

posted September 19
How Do I Edit My Profile. I Am From Canada..the Profile Says United States.?
A myMPNteam Member asked a question 💭
posted September 19
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A myMPNteam Member

Pat I just see on your contact “Toronto CA “ which suggests
California
For you .. my email address :
(Email address can only be seen by the question and answer creators)
Would love to connect .
read more

posted September 19
MPNs/ET Long Term Effects Undiagnosed And Untreated.
A myMPNteam Member asked a question 💭

I was diagnosed with Essential Thrombocytosis in May 2022
After speaking to my VA Doctor and Oncology Hematologist, I went on to a Veteran health site and found that the indicator (platelet counts near 800) had been ignored for over 10 years by multiple VA doctors only interested in my urinalysis results, obviously ignoring my blood counts
Anyhow, we filed a Malpractice/Failure to Diagnose suit against the Veterans Administration, and did just today receive a settlement which was merely a… read more

posted September 18
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A myMPNteam Member

I had high plalettes in 2004, no symptoms, no clotting, no diagnosed. I don't think military doctors knew about MPN in2004. Twelve years later i was given a PMF diagnosis. WOW... I'm now being… read more

posted September 20
How Do I Find A MPN Doctor In Minnesota?
A myMPNteam Member asked a question 💭
posted September 18
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A myMPNteam Member

Thank you Myrna for the great referral. I will check it out!

posted September 18
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