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MPN Voice

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Antibiotics and ET

Hi l have suffered with a recurring earache and swelling in my lymph glands befo...

BMB Negative - so next steps?

Feeling a bit strange - history so far :- Dec - tried to give blood, been a dono...

Newly diagnosed and looking for a very helpful post I would like to re-visit

I was checking through posts and answers to them a couple of weeks ago and found...
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Stepping out of antiquity: An update on emerging drugs for the treatment of polycythemia vera

Abstract Introduction: Polycythemia vera is a chronic hematologic malignancy fr...

426 platelet count

Hi i just got blood work done and my platlets are at 426 the emergency doctor sa...

Greater Understanding of PV, ET Drives Potential New Treatment Options

“Continued high-impact research may soon foster the development of disease-modif...

Pegasys- How long to see results?

UPDATE! Week 13 of Pegasys and bloods today showing a definite downward trend i...

anaemia now high potassium

I went for blood tests today, one reason being my low haemoglobin but the nurse...

An Update (good news)

Hey, I owe a lot of people here a thank you for the support that was shown to m...

Abnormal bloods raised bulrubin,platletts, LDH

Hi, I had vision change a couple of months ago so went to the optician's and the...

Not taking

Re reading my last post it sounds like I started HU .. still havnt as the day be...

Too hot!!

Hello everyone. I wonder how everyone is coping with the heat. Without the adva...

Extreme soreness and fatigue (PV)

Hi everyone… I find now that when I put in a full day of “busy” (I’m not running...

Antibody tests

This seems to be quite a hopeful development which would potentially show whethe...

Disappointed

My long awaited appointment with Integrative London Cancer Care hospital has bee...

Advice wanted

Hello 1st time on this site but am feeling a bit more positive reading some of t...

just been diagnosed E>T

hi, this is my second time writing on here, just last week i have been diagnosed...

I haven't written in awhile

I have been on here in awhile. I do get on the forum often. I was diagnosed in ...

Ruxolitinib discontinuation in polycythemia vera:

« After discontinuation, only 4 patients (18 %) received subsequent cytoreductiv...

Holistic treatments

Hello is anyone having holistic treatments which have been beneficial? I have ha...

Help! Possible enlarged spleen?

41 y/o m, PV, JAK2+, pegasys 90mcg weekly and twice daily baby aspirin - history...

“I think we’ll cure leukemia in my lifetime”

“Is there anything else you’d like to share about leukemia treatment? I'm very ...

RUXOLITINIB

Two weeks ago I was lucky enough to be accepted for the drug Ruxolitinib. Previo...

Updated Phase 2 Data Supporting Long-Term Efficacy of Rusfertide in Polycythemia Vera

Summary of Results: Therapeutic phlebotomies were essentially eliminated and a ...

Is anyone concerned on the side-effect of taking hydroxyurea for long time?

Is anyone concerned on the side-effect of taking hydroxyurea for long time? I am...

Hydroxycarbamide and anaemia

I was prescribed hydroxycarbamide last November as my platelets were 870.They ha...

What does ‘high platelets’ mean? Please

Hi After blood test results the doctor phoned me to tell me the results show hi...

Freedom Day in the UK

Is anyone else worried about the relaxation of the current restrictions this mon...

TOWARDS A POTENTIAL OPERATIONAL CURE IN PATIENTS WITH POLYCYTHAEMIA VERA?

Conclusion A sizable proportion of patients with PV achieved operational cure af...

Treatment options in Scotland for PV....

Hi everyone. I'm looking for a bit of help please. I have PV, diagnosed in Jan ...
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