Posts - MPN Voice | HealthUnlocked

MPN Voice

10,992 members•15,371 posts

All posts for June 2016

Day +1 SCT.....

Hello everyone, I had my stem cells yesterday from a 26 year old German woman, for which I am overwhelmingly grateful. Words can't express how I really feel....

Hello everyone, I had my stem cells yesterday from a 26 year old German woman, f...

Jane65

•9 years ago

33 Replies

Newly diagnosed and new to the site

Hi All, I just wanted to introduce myself and say hello. I was diagnosed with ET in April and have been lurking on the site for a bit. I really appreciate all...

Hi All, I just wanted to introduce myself and say hello. I was diagnosed with ET...

Hidden

•9 years ago

25 Replies

A bright new day

Morning all! Whichever way you voted, hope you're feeling bright and breezy this morning. Love from a gloomy old Lake District. x

Morning all! Whichever way you voted, hope you're feeling bright and breezy this...

Loubprv

Volunteer•9 years ago

1 Reply

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Chimerism levels

Hello Maz et al, Is there any feedback on my question raised a couple of weeks ago concerning acceptable/attainable chimerism levels and their possible...

Hello Maz et al, Is there any feedback on my question raised a couple of weeks a...

crapaud

•9 years ago

11 Replies

I am back!

Hi folks, somehow my account was blocked and banned and was told that it could due to spam. Anyway, my account has reinstated. Thanks to Maz!! Would like to...

Hi folks, somehow my account was blocked and banned and was told that it could d...

swess

•9 years ago

12 Replies

Gastric varices and flying?

Hello again, I'm pleased to report that after my husband was transferred to St Thomas' hospital, they managed to stabilise his bleeding varices and ruled out...

Hello again, I'm pleased to report that after my husband was transferred to St ...

Seashell226

•9 years ago

3 Replies

New Introduction

Hi Everyone, I have to say I'm so glad I found this list. I don't feel so alone now. I am in the US California. I have ET with JAK2 positive since about 2005,...

Hi Everyone, I have to say I'm so glad I found this list. I don't feel so alone ...

DH65

•9 years ago

12 Replies

Night Sweats

Hi everyone. I know we are enjoying some nice warm weather (ssshhhh don't let the weatherman hear) but for the last week I have been having sudden night...

Hi everyone. I know we are enjoying some nice warm weather (ssshhhh don't let t...

jillydabrat

•9 years ago

9 Replies

That's for the Manchester forum

Morning Maz and Alisia, just to say thanks so much for organising yet another super forum. Don't know how you do it! This one was even better than the last,...

Morning Maz and Alisia, just to say thanks so much for organising yet another su...

Loubprv

Volunteer•9 years ago

4 Replies

Good day to you all ❤️

Just a update on my Great North Run training I've managed to get two runs this week , doing ok , I'm hoping to do more this week , Its not a walk in Park it's...

Just a update on my Great North Run training I've managed to get two runs this ...

Phelpsy

•9 years ago

16 Replies

Et treatment options

Hi All, I am 46 and have ET jak2+ . I was diag 6 years ago and my platelets have stayed around 600-700. Treatment has been low dose aspirin up to now....

Hi All, I am 46 and have ET jak2+ . I was diag 6 years ago and my platelets have...

Loubielou

•9 years ago

13 Replies

Sun and hydrea

Does anyone experience nausea from spending time in the Sun while taking Hydrea? Also my feet are so sore and burning on the ball of my foot and one of my...

Does anyone experience nausea from spending time in the Sun while taking Hydrea?...

spikesnana

•9 years ago

8 Replies

Will leaving the eu affect our access to myeloproliferative medication?

I have been wondering about this all day. I am on pegasus interferon which is produced in the EU. I understand it is an expensive injection and not always a...

I have been wondering about this all day. I am on pegasus interferon which is pr...

noodles26

•9 years ago

4 Replies

Is it me ?

Hi folks, Has anyone else had a problem accessing there MPN posts? If I want to read or reply I have to keep signing in for each post, all really strange, is...

Hi folks, Has anyone else had a problem accessing there MPN posts? If I want to ...

Superwoman

•9 years ago

6 Replies

ET

Hi I have ET and taking baby aspirin and hydroxy. I seem to have developed pain in my big toe! Does anybody know if I am allowed to take ibroprofen with the...

Hi I have ET and taking baby aspirin and hydroxy. I seem to have developed pain ...

retromicky

•9 years ago

11 Replies

1 rare disease apparently isn't enough! And considering Interferon

Hi all, I had another appointment yesterday which fell at rather good timing as some of my symptoms were returning, mostly fatigue. Platelet count only at 460...

Hi all, I had another appointment yesterday which fell at rather good timing as...

JLTINA

•9 years ago

9 Replies

Chris's

Two things. 1. It is long time no hear from Jedireject; have I missed anything? 2. Going to Mpnvoice forum in Manchester on Saturday. Anyone else going? The...

Two things. 1. It is long time no hear from Jedireject; have I missed anything? ...

MFBMT2011

•9 years ago

5 Replies

Facebook Live with Andrew and Esther Schorr

Recently, we asked the Patient Power Community to weigh in on how cancer drug costs affect their lives. Now, Patient Power founders, Andrew and Esther Schorr,...

Recently, we asked the Patient Power Community to weigh in on how cancer drug co...

tclementi

•9 years ago

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SCT go ahead

Hi MPN friends, I just wanted to let you know that I will be starting the process of a stem cell transplant next weds 22 June. I live in France and will be...

Hi MPN friends, I just wanted to let you know that I will be starting the proces...

Jane65

•9 years ago

26 Replies

Fundraiser Results

Hi I'm delighted to have the final amount raised for MPN Voice £400 , I'm delighted with that , xx Thanks to very special friends & family for there kind...

Hi I'm delighted to have the final amount raised for MPN Voice £400 , I'm delig...

Phelpsy

•9 years ago

8 Replies

Diagnosis via e-mail(!)

As I have written earlier, I have been through quite a lot since I went through pneumonia one year ago. I spent the whole last summer, taking blood tests at my...

As I have written earlier, I have been through quite a lot since I went through ...

Bittebitt

•9 years ago

2 Replies

Keep an eye on your feet!!

I posted a pic on here a couple of weeks ago of my horrible toe! What started as a scratch has ended up a real mess, and very painful with it. I went to the...

I posted a pic on here a couple of weeks ago of my horrible toe! What started as...

lizzziep

•9 years ago

11 Replies

Hello,new here.

My husband was diagnosed with ET and PRV in his mid thirties although his symptoms had been dismissed for years as anxiety.He's JAK2 positive and has been on...

My husband was diagnosed with ET and PRV in his mid thirties although his sympto...

Ericisadogg

•9 years ago

5 Replies

To make you laugh

Nothing to do with MPN but might give you all a laugh this morning. We went to a 70 th birthday BBQ last night, and all stood round admiring the hosts newly...

Nothing to do with MPN but might give you all a laugh this morning. We went to a...

Loubprv

Volunteer•9 years ago

11 Replies

Travel insurance

Hi I'm about to go on holiday and my travel insurance has expired...and of course since last year I've been diagnosed with PV. Anyone have any experience of...

Hi I'm about to go on holiday and my travel insurance has expired...and of cours...

Chris1919

•9 years ago

9 Replies

Anyone fancy sponsoring a guide dog puppy?

We've just sponsored a guide dog puppy called Biscuit for £9 a month. The biggest dread of my life is losing my sight and so I felt that the least I could do...

We've just sponsored a guide dog puppy called Biscuit for £9 a month. The bigges...

Loubprv

Volunteer•9 years ago

5 Replies

MPN Voice Nottingham Support Group - Wednesday 15th June - speaker is the bone marrow transplant nurse specialist

We are very pleased to announce that the speaker for the meeting on Wednesday 15th June will be Lynne Watson, the bone marrow transplant specialist nurse. The...

We are very pleased to announce that the speaker for the meeting on Wednesday 15...

Mazcd

Partner•9 years ago

7 Replies

My trip to Disney...

Hello, All! I had the pleasure of being a chaperone for some of our high school band members on a trip to perform at Disney World! It was a trying trip, to...

Hello, All! I had the pleasure of being a chaperone for some of our high school...

BeckyM4

•9 years ago

10 Replies

Safely home.

Two flights and I am safely back home. I hydrated constantly on the flights so that surely caused me to get up and walk to the bathroom several times. I...

Two flights and I am safely back home. I hydrated constantly on the flights so t...

Kinsalelady

•9 years ago

11 Replies

Great North Run - training update

Hello all, I hope this post finds you all feeling well. Just thought I would give you an update on my training. This week I have trained on 3 occasions and...

Hello all, I hope this post finds you all feeling well. Just thought I would giv...

Chrissie2885

•9 years ago

6 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for June 2016

Day +1 SCT.....

Newly diagnosed and new to the site

A bright new day

Chimerism levels

I am back!

Gastric varices and flying?

New Introduction

Night Sweats

That's for the Manchester forum

Good day to you all ❤️

Et treatment options

Sun and hydrea

Will leaving the eu affect our access to myeloproliferative medication?

Is it me ?

ET

1 rare disease apparently isn't enough! And considering Interferon

Chris's

Facebook Live with Andrew and Esther Schorr

SCT go ahead

Fundraiser Results

Diagnosis via e-mail(!)

Keep an eye on your feet!!

Hello,new here.

To make you laugh

Travel insurance

Anyone fancy sponsoring a guide dog puppy?

MPN Voice Nottingham Support Group - Wednesday 15th June - speaker is the bone marrow transplant nurse specialist

My trip to Disney...

Safely home.

Great North Run - training update

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