Posts - MPN Voice | HealthUnlocked

MPN Voice

10,992 members•15,371 posts

All posts for November 2014

MF to PV

I was diagnosed with MF in Feb 2012. A few months ago I was told the proper diagnosis should have been PV. I have scarring in my bone marrow. All of this...

I was diagnosed with MF in Feb 2012. A few months ago I was told the proper dia...

chillin

•10 years ago

8 Replies

PV Reporter Video Newsletter #8 - Dec 2014

Hi Y'all - Hope everyone had a nice weekend. Check out our latest newsletter #8 - Dec, 2014, this time it's in video format. One of my goals is to do more...

Hi Y'all - Hope everyone had a nice weekend. Check out our latest newsletter #8 ...

PVReporter

•10 years ago

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You are part of an e-patient revolution, see article

Please take a minute to read about how YOU are part of an e-patient revolution, no matter where you live. Best Wishes and happy Thanksgiving to US folks....

Please take a minute to read about how YOU are part of an e-patient revolution, ...

andrewschorr

•10 years ago

5 Replies

Want to take advantage of all our features? Just log in!

Good morning all , It was a very good forum at guys hospital ,on Monday evening , the hospitality was first class .the education was greaT

Food was good and staff were excellent ,,so polite .. We all seemed to learn a lot and as is usually the case friendship s were forged .in the chat circles at...

Food was good and staff were excellent ,,so polite .. We all seemed to learn a l...

Twinkly

•10 years ago

20 Replies

My coffee morning,

I'm enjoying my day off after a busy time Fundraising but hey ho I'm still on a high I'm sure I'll come down with a bang real soon , wish I could upload my...

I'm enjoying my day off after a busy time Fundraising but hey ho I'm still on a...

Phelpsy

•10 years ago

11 Replies

MY MPN COFFEE MORNING .

I'm still on a high what a wonderful day Such fun & lovely seeing old friends & family , all the hard work paid off making cards , cakes Raffle & Tombola I...

I'm still on a high what a wonderful day Such fun & lovely seeing old friends &...

Phelpsy

•10 years ago

15 Replies

Polycythemia Vera Pre-diagnosis Patient Report - Terry's Story

By sharing our stories, perhaps we offer “a dose of comfort” to the new or recently diagnosed. When they read of struggles that other patient’s experience,...

By sharing our stories, perhaps we offer “a dose of comfort” to the new or recen...

PVReporter

•10 years ago

3 Replies

Fundraising for MPN

Just thinking of all my MPN Buddies , I'm making cakes & cup cakes for my MPN Coffee morn on Saturday ,:) it's all coming together lovely , got 20 prize's for...

Just thinking of all my MPN Buddies , I'm making cakes & cup cakes for my MPN C...

Phelpsy

•10 years ago

10 Replies

So very looking forward to the forum in st Thomases hospital ,in London ,next Monday .are you coming ? .....

Don't forget to ask all those questions you always mean to ask on your clinic appointments , then you always forget ,, so take a few notes with you ,someone...

Don't forget to ask all those questions you always mean to ask on your clinic ap...

Twinkly

•10 years ago

12 Replies

At the talk last week about cancer ,I was amazed to hear about the chemicals in our tap,water systems .eastrogen is passed back by so many !

Thousands of us are useing this adertive now days ,it's given to animals too to make them produce more meat,or more milk ,or more eggs.so it gets into the...

Thousands of us are useing this adertive now days ,it's given to animals too to ...

Twinkly

•10 years ago

14 Replies

Pensions at 55 or 60 for those with a life limiting diagnosis

Hi everyone, I've been banging on about the above for months now but I'm a lone voice in the wilderness. I feel very strongly about this but I can't do it...

Hi everyone, I've been banging on about the above for months now but I'm a lone ...

Loubprv

Volunteer•10 years ago

9 Replies

Mood change

My husband diagnosed with PCV about 15 months ago and on aspirin and hydroxy which has recently been reduced to 3 x500mg a day. Over the last couple of months...

My husband diagnosed with PCV about 15 months ago and on aspirin and hydroxy whi...

Headinthesand

•10 years ago

14 Replies

Yesterday I visited the cancer help centre at Cambridge ,I was invited to a talk 13.11.14.at 5till8. By Pat Peat of cancer options.

This is a free talk at the centre to discuss the latest information to help with all types of cancer. Complimentary and alternative therapies , also...

This is a free talk at the centre to discuss the latest information to help with...

Twinkly

•10 years ago

9 Replies

Have to keep logging in.....

Just an aside but has anyone else had problems with the site recently? Although my 'keep me logged in' box is ticked I have to keep signing in every time I now...

Just an aside but has anyone else had problems with the site recently? Although ...

Hidden

•10 years ago

8 Replies

My T- shirt arrived , for my coffee morning .

Im having a coffee morning next week , it's to raise awareness & hopefully I make a few £ for MPN They have given me my life back , 14 months ago I was...

Im having a coffee morning next week , it's to raise awareness & hopefully I mak...

Phelpsy

•10 years ago

11 Replies

Back Pain

Does anyone else have problems with back pain, I thought I had jarred my back while on holiday 7 weeks ago but that seems to have cleared up, its only when...

Does anyone else have problems with back pain, I thought I had jarred my back wh...

Michael56

•10 years ago

2 Replies

Leukemia & Lymphoma Society Launches New Program to Halt Progression of Myeloid Blood Cancers

- The Leukemia & Lymphoma Society has initiated a program to fund research projects seeking to better understand and, ultimately, stop progression of certain...

- The Leukemia & Lymphoma Society has initiated a program to fund research proje...

PVReporter

•10 years ago

4 Replies

Anaemic

Hi Guys, I am still feeling awful after getting a pint of blood off which shouldn't have come off!!! My hct was borderline before a shoulder op and nurse said...

Hi Guys, I am still feeling awful after getting a pint of blood off which should...

Aime

•10 years ago

13 Replies

US MPN Town Meeting Available Live Online Saturday

This Saturday, wherever you are you can attend a free "town meeting" for MPN patients and caregivers and hear from top docs, an MPN nurse and oncology social...

This Saturday, wherever you are you can attend a free "town meeting" for MPN pat...

andrewschorr

•10 years ago

3 Replies

Big Toe Trauma Update

Having been to my GP, A&E, back to GP (practice nurse) then feeling at a loss as to what to do next, as no one could give me an answer as to what had caused...

Having been to my GP, A&E, back to GP (practice nurse) then feeling at a loss as...

sksar

•10 years ago

6 Replies

So depressed!

The only thing I ever really complain about is tiredness and even then it's 2 or 3 times a week at most, as I try to keep it to myself. I have been feeling...

The only thing I ever really complain about is tiredness and even then it's 2 or...

harleydavidson

•10 years ago

30 Replies

Does anyone get ET symptoms when their platelets are elevated?

Hi Everyone, I have ET Jak2 positive and take 2 x 500 mg Hu daily and aspirin. I was diagnosed in 2011 after presenting to my GP with a host of symptoms so it...

Hi Everyone, I have ET Jak2 positive and take 2 x 500 mg Hu daily and aspirin. I...

Hidden

•10 years ago

9 Replies

Any need of concern???

I recently had a full check over regarding my memory MRI & Mimsi ( not as sharp as I used to be & word finding ,Expressive Dysphasia And have Received a...

I recently had a full check over regarding my memory MRI & Mimsi ( not as sharp...

Phelpsy

•10 years ago

14 Replies

Newly diagnosed and taking aspirin

I just have a question for ET people. Is it possible to never have to take anything other than aspirin to treat ET, or eventually do sufferers have to onto...

I just have a question for ET people. Is it possible to never have to take anyth...

VKH422

•10 years ago

16 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for November 2014

MF to PV

PV Reporter Video Newsletter #8 - Dec 2014

You are part of an e-patient revolution, see article

Good morning all , It was a very good forum at guys hospital ,on Monday evening , the hospitality was first class .the education was greaT

My coffee morning,

MY MPN COFFEE MORNING .

Polycythemia Vera Pre-diagnosis Patient Report - Terry's Story

Fundraising for MPN

So very looking forward to the forum in st Thomases hospital ,in London ,next Monday .are you coming ? .....

At the talk last week about cancer ,I was amazed to hear about the chemicals in our tap,water systems .eastrogen is passed back by so many !

Pensions at 55 or 60 for those with a life limiting diagnosis

Mood change

Yesterday I visited the cancer help centre at Cambridge ,I was invited to a talk 13.11.14.at 5till8. By Pat Peat of cancer options.

Have to keep logging in.....

My T- shirt arrived , for my coffee morning .

Back Pain

Leukemia & Lymphoma Society Launches New Program to Halt Progression of Myeloid Blood Cancers

Anaemic

US MPN Town Meeting Available Live Online Saturday

Big Toe Trauma Update

So depressed!

Does anyone get ET symptoms when their platelets are elevated?

Any need of concern???

Newly diagnosed and taking aspirin

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