Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for March 2014

Important programme Radio 4!

Hi. For some time I have been campaigning for earlier pensions ( at 60 ) for men and women who have had a life limiting diagnosis of any kind. I was...

Hi. For some time I have been campaigning for earlier pensions ( at 60 ) for men...

LouisePRV

Volunteer•10 years ago

9 Replies

Well You Don’t Look Sick

A Phrase Commonly Heard by MPN Patients - http://www.pvreporter.com/well-you-dont-look-sick/

A Phrase Commonly Heard by MPN Patients - http://www.pvreporter.com/well-you-don...

PVReporter

•10 years ago

13 Replies

FUNDRAISING - CYCLING EVENTS IN 2014

Fundraise for MPN Voice – The Moonriders Cycle Series 2014 When you have an MPN you are encouraged to try as much as possible to keep fit and cycling is a...

Fundraise for MPN Voice – The Moonriders Cycle Series 2014 When you have an MPN...

Mazcd

Partner•10 years ago

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Hi, does the inside of anyone else's mouth peel?

I'm 19, i have ET and take Hydroxycarbamide.. It might be down to anything like a change of diet i guess but for the last 2 weeks the inside of my mouth has...

I'm 19, i have ET and take Hydroxycarbamide.. It might be down to anything like ...

Ffionllewelyn

•10 years ago

11 Replies

Does anyone else get excruciating pain at end of their fingers and sometimes v painful whole hand....connected to ET (Jak 2 pos(? Tinkerbell

Tinkerbell13

•10 years ago

32 Replies

Hello, I was diagnosed with ET in 2006 and then Breast Cancer in 2009. I was wondering if anyone else had a 2nd cancer diagnosis? Thank you.

Amacp

•10 years ago

11 Replies

Hi all, does anyone suffer from sore bones in their feet when standing up after lying or sitting still for long durations? Its new for me??

this has just begun for me in the past 2 months and Im unsure if it is related to the HU medication or ET. I have found the people on this site often have more...

this has just begun for me in the past 2 months and Im unsure if it is related t...

Seea

•10 years ago

14 Replies

Hi i'm 51yrs old Newly diagnosed with JAK 2 positive myeloproliferative Had a Tia in September 2013 With a platelet count if 850

I would like to find out more about this disorder , As its totally alien to me :) any advice Or info would be much appreciated

I would like to find out more about this disorder , As its totally alien to me ...

Phelpsy

•10 years ago

15 Replies

Southampton Patients' Forum - Friday 6th June 2014

Friday 6th June 2014, 10.30 am – 3 pm The forum will be held in the Heartbeat Suite, Southampton General Hospital, Tremona Road, Southampton, Hampshire, SO16...

Friday 6th June 2014, 10.30 am – 3 pm The forum will be held in the Heartbeat S...

Mazcd

Partner•10 years ago

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Manchester Patients' Forum - Saturday 28th June 2014

Saturday 28th June 2014, 10.30 am – 3 pm The forum will be held in The Christie NHS Foundation Trust, Oak Road, Manchester, M20 4BX. Please use the Oak...

Saturday 28th June 2014, 10.30 am – 3 pm The forum will be held in The Christie...

Mazcd

Partner•10 years ago

3 Replies

Interferon 2a or Pegasys----how different are they regarding effect on the body and possible molecular remission?

Hi everyone, I am 74 years old, have ET, Jak2 and exon12 negative. I have been on interferon 2a for 2 1/2 years and am sick of having painful legs and lower...

Hi everyone, I am 74 years old, have ET, Jak2 and exon12 negative. I have been ...

graymare

•10 years ago

2 Replies

Informal meet up

Hi everyone, there are now about 10 of us interested in meeting on an informal basis. So the next question is, where? Could you please email me and let me know...

Hi everyone, there are now about 10 of us interested in meeting on an informal b...

LouisePRV

Volunteer•10 years ago

13 Replies

sorry it's me again!just another rant...are MPD's definitely a form of cancer?

I ask this due to a rude comment i have had from someone on facebook - the joys of social media! this morning i logged on to see lots of photos of girls with...

I ask this due to a rude comment i have had from someone on facebook - the joys...

noodles26

•10 years ago

18 Replies

Newly diagnosed

Hello everyone my husband, 67 was diagnosed with MF out of the blue after blood tests, the doctor gave us a Macmillan leaflet and said he would see us in three...

Hello everyone my husband, 67 was diagnosed with MF out of the blue after blood ...

Armanimick

•10 years ago

16 Replies

hydroxycarbamide side effects

Hello! I have been switched from interferon to hydroxycarbamide...after 1 week on 500mg a day i felt much brighter within myself...until i went to my...

Hello! I have been switched from interferon to hydroxycarbamide...after 1 week ...

noodles26

•10 years ago

13 Replies

I have PRV treated with hydroxy + venesection. My platelet counts have fallen and are now below normal. Is this Myelofibrosis starting?

Does anyone have any similar past experience? Jane

jane13

•10 years ago

4 Replies

I have been on HU for 3 years and my hair is thinner. Does anyone know of any reason why I should not take a Folic Acid supplement? Thankyou

Mwalimu

•10 years ago

2 Replies

Lets talk about clinical trials. I am getting such good results now I'm taking ruxolitinib on the Majic trial ,but it takes dedication ....

As the side effects appear we have to learn to deal with them , So,,bloating ,food intolerance ,weight gain, swollen joints, breathlessness , Are some I have...

As the side effects appear we have to learn to deal with them , So,,bloating ,fo...

Twinkly

•10 years ago

4 Replies

Geron’s Clinical Trials of Imetelstat put on Hold - http://www.pvreporter.com/geron-clinical-trials-imetelstat-put-on-hold/

FDA asks Geron to Halt Development of Imetelstat

PVReporter

•10 years ago

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Is there any problem with coming into contact with chickenpox if you have PRV and are on Hydroxycarbamide

liarose

•10 years ago

4 Replies

Ocular Migraine and PV

I'm 54 years old and was discovered with PV 7 years ago.I'm on hidroxiureea 1pcs./2 days and hydration. Unfortunatelly for arround 14 years I sufer for Ocular...

I'm 54 years old and was discovered with PV 7 years ago.I'm on hidroxiureea 1pcs...

cata

•10 years ago

18 Replies

MPN Fatigue Trial

The MRF (myeloproliferative neoplasm related fatigue) Project is the 2nd phase of a fatigue trial being run by Dr Ruben Mesa, The Mayo Clinic in Arizona,...

The MRF (myeloproliferative neoplasm related fatigue) Project is the 2nd phase o...

Mazcd

Partner•10 years ago

7 Replies

Exemption from Prescription Charges

Hi, Has anyone else had difficulty obtaining one of these? My GP has refused to sign as says in his opinion its not a cancer. Paul

Hi, Has anyone else had difficulty obtaining one of these? My GP has refused to...

Paul42

•10 years ago

21 Replies

Swollen hands

To cut along story short the wife had a flat tyre and was around 5 miles away called me to tell me she could not get the wheel off no matter how hard she tried...

To cut along story short the wife had a flat tyre and was around 5 miles away ca...

sparko35

•10 years ago

10 Replies

Platelet levels coming down!

I have ET and I've been to the hospital this morning and my platelets were down again to 385. The heam said I was heading for being normal - that's something...

I have ET and I've been to the hospital this morning and my platelets were down ...

lizzziep

•10 years ago

14 Replies

New video on why you should help newly diagnosed

Here's the story of a Houston, Texas doctor who was treated for advanced cancer, survived, and is now a passionate volunteer helping others one-to-one:...

Here's the story of a Houston, Texas doctor who was treated for advanced cancer,...

andrewschorr

•10 years ago

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PV Hangover!

Morning! Does anyone else wake up and feel hungover?I haven't touched a drop of alcohol and yet feel like i've had one too many cosmo's! I've been on...

Morning! Does anyone else wake up and feel hungover?I haven't touched a drop of ...

noodles26

•10 years ago

13 Replies

Do you worry about being in a crowded venue ,full of germs .im going to NEC to show my dogs at crufts this week ,am I taking a chance ??...

Since we have limited immune systems damaged by these MPD problems .Do we take chances going into such crowded venues with air conditioning ,so many coughing...

Since we have limited immune systems damaged by these MPD problems .Do we take c...

Twinkly

•10 years ago

4 Replies

Hi everyone, We seem to be a growing band of happy followers. Does anyone like the idea of meeting up somewhere sometime other than a forum?

I live in Cumbria but am very happy to travel, thinking relaxed venue...... Louise

I live in Cumbria but am very happy to travel, thinking relaxed venue...... Loui...

LouisePRV

Volunteer•10 years ago

32 Replies

Self Introduction and new MPN website

Hi guys, My name is David Wallace. I am based in the United States (N.C.) and have been a Polycythemia Vera patient since 2009. I created a website that you...

Hi guys, My name is David Wallace. I am based in the United States (N.C.) and ha...

PVReporter

•10 years ago

22 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for March 2014

Important programme Radio 4!

Well You Don’t Look Sick

FUNDRAISING - CYCLING EVENTS IN 2014

Hi, does the inside of anyone else's mouth peel?

Does anyone else get excruciating pain at end of their fingers and sometimes v painful whole hand....connected to ET (Jak 2 pos(? Tinkerbell

Hello, I was diagnosed with ET in 2006 and then Breast Cancer in 2009. I was wondering if anyone else had a 2nd cancer diagnosis? Thank you.

Hi all, does anyone suffer from sore bones in their feet when standing up after lying or sitting still for long durations? Its new for me??

Hi i'm 51yrs old Newly diagnosed with JAK 2 positive myeloproliferative Had a Tia in September 2013 With a platelet count if 850

Southampton Patients' Forum - Friday 6th June 2014

Manchester Patients' Forum - Saturday 28th June 2014

Interferon 2a or Pegasys----how different are they regarding effect on the body and possible molecular remission?

Informal meet up

sorry it's me again!just another rant...are MPD's definitely a form of cancer?

Newly diagnosed

hydroxycarbamide side effects

I have PRV treated with hydroxy + venesection. My platelet counts have fallen and are now below normal. Is this Myelofibrosis starting?

I have been on HU for 3 years and my hair is thinner. Does anyone know of any reason why I should not take a Folic Acid supplement? Thankyou

Lets talk about clinical trials. I am getting such good results now I'm taking ruxolitinib on the Majic trial ,but it takes dedication ....

Geron’s Clinical Trials of Imetelstat put on Hold - http://www.pvreporter.com/geron-clinical-trials-imetelstat-put-on-hold/

Is there any problem with coming into contact with chickenpox if you have PRV and are on Hydroxycarbamide

Ocular Migraine and PV

MPN Fatigue Trial

Exemption from Prescription Charges

Swollen hands

Platelet levels coming down!

New video on why you should help newly diagnosed

PV Hangover!

Do you worry about being in a crowded venue ,full of germs .im going to NEC to show my dogs at crufts this week ,am I taking a chance ??...

Hi everyone, We seem to be a growing band of happy followers. Does anyone like the idea of meeting up somewhere sometime other than a forum?

Self Introduction and new MPN website

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