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MPN Voice
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PV SWEATING

Hi again everyone !! As I mentioned I have been diagnosed 2 yrs ago with PV jak2...

Jak 2 pos -protein shakes

Hi just wondered if anyone on here had protein shakes that they use with fitnes...

Going on hormones with ET

Question for all the females out there with ET.... I am 51 and thinking about g...
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Gene mutations positive or not?

Does anyone on here have ET or an MPN but their Jak2, CALR, And other mutations ...

Ulcers

Does anyone have a recommended medication for ulcers? My doctor prescribed Dakt...

Amalgams! Metal Fillings!

Today I answered a friend about my amalgam removal and the dispute regarding mer...

Loss of smell

Hello, all. About a year ago, I was riding in the car with my family and I sudde...

Oral discolouration

Hi all, Just wondering if anyone who has ET has ever experienced any black/dark...

Longterm Interferon treatment

Hi, I’ve been diagnosed with PV some 3 years ago. My current treatment is aspiri...

Hydroxyurea ( Hydrea) and vaccine safety

Hello , I am 60 years old and jak 2 positive PV . I am on aspirin and Hydrea ....

High Platelet Count

I had difficulty lowering my platelet count while I was taking Hydroxycarbamide....

Venesections and PPE

I went for my second venesection last Tuesday. Had the first of 2, three weeks a...

Scheduled Surgery

We have the surgery to remove the mass on my mandible scheduled for July 13. Wi...

Has anyone else had problems with bringing they're platelet count down? And finding the right treatment and dosage to do this?

Reading people's comments on here seeing others platelet counts, compared to how...

X39 patches

Hi everyone, I am wondering if anyone of you knows the LifeWaves X39 patches. Is...

Anyone with ET that has progressed to MF?

My symptoms have seemed to have progressed - more bone pain, night sweats, bloat...

MPN QoL Study Group MPN & COVID-19 Survey STILL OPEN

During the last few months we have been asking you to complete a number of surve...

First Trip to Shops Since Early March

So I decided to go to the shops today Though a tad apprehensive I have to say Wa...

Platelet number fluctuations

Does anyone see their platelet numbers fluctuate? Like jump down or up 100k in j...

Travel Insurance and ET

Has anybody tried to get travel insurance with an ET diagnosis. If so, have they...

MPNU/ET/Aspirin

Hello all It’s been a while since my last communication...hope everyone is doing...

COVID update, re: blood clots

This may not be so much new news for many but thought I would pass it along all ...

Peg, interferon

Hi all started peg about 10 weeks ago, previous i was on interferon 2a doing fin...

The Shielder’s Dilemma

Given our recent discussions about trust, control and children returning to scho...

Illuminating novel biological aspects and potential new therapeutic approaches for chronic myeloproliferative malignancies

Abstract This review reflects the presentations and discussion at the 14th post‐...

E T and potassium

Hi all. I was diagnosed with E T few months ago. Haematologist is waiting for Co...

Critical illness insurance

Has anyone in the UK, managed to get critical illness insurance cover after a h...

Weight gain on hydroxycarbamide

Has anyone put a lot of weight on with hydroxycarbamide. I've been on it for 2 y...

Pre-MF 31yr old

Hello, I am new here. 31 years old Got diagnosis pre-mf.. I've got no symptoms.....

Milburn.

Quick Summary: Age 80. Diagnosed with ET 12 years ago when had blood clot in toe...
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