Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for March 2019

Life goes on

Blood test today and then Pharmacy for more Hydrea!!! All I do is try to drink enough water every to keep my blood going. So went to Karaoke Monday night....

Blood test today and then Pharmacy for more Hydrea!!! All I do is try to drink e...

•5 years ago

Oxford Forum on 24 th April: you can stay overnight at the venue, the Said Business School

Hi I’ve just discovered that the Said Business School where the forum is happening has comfortable -looking b and b accomodation available, with free...

Hi I’ve just discovered that the Said Business School where the forum is happen...

Rachelthepotter

•5 years ago

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ET and Left sided headache.

I have ETdiagnosed last July and suffer with headache on the left side which comes and goes throughout the day for a couple of weeks or so. The pain is in the...

I have ETdiagnosed last July and suffer with headache on the left side which com...

•5 years ago

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Venesection control

Hi all I’m PV Jak2+ . Currently I am on 12 hydroxy a week , aspirin. My platelets have come down slowly from 1600 to around 600 and hopefully will fall...

Hi all I’m PV Jak2+ . Currently I am on 12 hydroxy a week , aspirin. My platelet...

•5 years ago

Using T-Cells To Fight MPN - CALR And JAK2 Vaccine

Being developed by the Danish team at Copenhagen University hospital. Professor Mads Hald Anderson was my contact and the project lead. The good folks in the...

Being developed by the Danish team at Copenhagen University hospital. Professor ...

•5 years ago

Headache and phlebotomy

Did phlebotomy reduced your headache ?

Did phlebotomy reduced your headache ?

•5 years ago

Ginseng & hydroxyurea

It's been over a month since I started taking Ginseng and it seems to be helping with the fatigue a little and every bit counts. 1,000 mg of Panax...

It's been over a month since I started taking Ginseng and it seems to be helping...

•5 years ago

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Confused

I was discharged from hospital appointments last year, after a year of blood tests and wait and see approach. After a BMB, I was told no evidence of an MPN....

I was discharged from hospital appointments last year, after a year of blood tes...

•5 years ago

CALR Mutations promising targets for immune therapy ?

Dear fellow MPNers, I just wanted to share this interesting research (https://www.ncbi.nlm.nih.gov/pubmed/28676668) particularly relevant to those of us with...

Dear fellow MPNers, I just wanted to share this interesting research (https://ww...

•5 years ago

New to MF

Hi I have et and recently been told It has progressed to MF. I'm to see my consultant on Monday to get the results from my bm sample n blood work. and talk...

Hi I have et and recently been told It has progressed to MF. I'm to see my consu...

•5 years ago

Pegasys

Just come out of appointment with haematologist and platelets now in 770s and I’m 62 so high risk! He wants me to start Pegasus. I’m a bit scared to say the...

Just come out of appointment with haematologist and platelets now in 770s and I’...

•5 years ago

Fermented foods

Is fermented milk and yoghurt ok to use? I've read there's lots of health benefits but also read it has vit k2 in it so not sure if it's good for ET as read...

Is fermented milk and yoghurt ok to use? I've read there's lots of health benef...

•5 years ago

Frustrated

I am 46 and was first diagnosed with ET in March 2016 I live in the UK. In March of 2017 my red blood cells were rising and diagnosis was changed to PV. I...

I am 46 and was first diagnosed with ET in March 2016 I live in the UK. In March...

•5 years ago

Platelets keep disappearing. Any one else have this?

Post PV MF diagnosed mid 2017. Ruxalotinib from end 2017 until Jan 2019. Now on Pacritinib trial and into my 7th week. Hopefully heading towards transplant...

Post PV MF diagnosed mid 2017. Ruxalotinib from end 2017 until Jan 2019. Now on ...

•5 years ago

Operation v ET

Just wondering has anyone on this forum had a joint replacement and later found out they had ET. I had a hip replacement 21 years ago and a year later found...

Just wondering has anyone on this forum had a joint replacement and later found ...

•5 years ago

Discontinue Hydroxyurea

Had a visit with a new Hematologist who is a recognized expert in MPNs. He has recommended a different tx approach for my Polycythemia Vera. Based on my...

Had a visit with a new Hematologist who is a recognized expert in MPNs. He has ...

•5 years ago

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