Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for May 2016

Newbie

Hi I have been a 'browser' here for a while but never posted for personal reasons. I am 64 (65 next week) and was 32 when I was diagnosed with ET. I think I...

Hi I have been a 'browser' here for a while but never posted for personal reason...

Wychwoodbabe

•8 years ago

7 Replies

So many soft fruits in season just now ,do try to eat lots of these super fruits fresh for breakfast ,give you energy for a busy day ,

Squeezey honey on your fresh strawberries ,( only English mind) .blueberries ,raspberries ,,are wonderful this time of year ..take care the fruit from Spain is...

Squeezey honey on your fresh strawberries ,( only English mind) .blueberries ,ra...

Twinkly

•8 years ago

3 Replies

New to listserve: interferon?

Hi Everyone I heard wonderful things about this list-serve and would love to connect with others with MPNs overseas -- I'm from Canada. I was diagnosed with...

Hi Everyone I heard wonderful things about this list-serve and would love to co...

Faye2011

•8 years ago

10 Replies

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

Falling platelet count.

Hi everyone just had my 4 monthly blood test and my platelets have started falling after being constant for 15 years on hydroxy. Have another blood test in 2...

Hi everyone just had my 4 monthly blood test and my platelets have started falli...

millycat

•8 years ago

7 Replies

Meet Andrew and Esther Schorr

Most people in the "cancer world" are familiar with Andrew Schorr, a MPN and CLL patient for over 20 years and his wife, Esther. They are also co-founders of...

Most people in the "cancer world" are familiar with Andrew Schorr, a MPN and CLL...

tclementi

•8 years ago

Be the first to reply

Myloyd Fibroses

Hello I have had ET, for 15 years now diagnosed with Myloyd fibroses stage intameadit2 my Heamatologist sent me to the BMT clinic & I was told I would not...

Hello I have had ET, for 15 years now diagnosed with Myloyd fibroses stage intam...

Norar

•8 years ago

25 Replies

Hello I am post ET,Now have myloyd fibroses intameadit2 I am going on Ruxolitinib tabs. Is there someone else with the same who can help

& advice anyone in same position or already tying the Ruxolitinib

Norar

•8 years ago

1 Reply

Any dietary advice for a new diagnosis of ET?

I am new here and have been diagnosed with ET JAK2+, 3 months ago. My platelets were 666 (!) and have now dropped to 576. I am on Clopidogrel, following a...

I am new here and have been diagnosed with ET JAK2+, 3 months ago. My platelets...

tessa46

•8 years ago

7 Replies

Successful critical illness claims PV

Hi all, i was in the process of updating my life/critical illness policy and my broker suggested I might make a claim under critical illness. I just wondered...

Hi all, i was in the process of updating my life/critical illness policy and my ...

johoho

•8 years ago

11 Replies

I'm really looking forward to my trip to London to the forum on July 11 th ..Iv been before and it taught me so much about my MPN. Problem !

Hi buddy's ! Hope lots of you are coming to London to the forum ! It puts a name to a face ,when we break off into our groups to chat .we get the chance to...

Hi buddy's ! Hope lots of you are coming to London to the forum ! It puts a na...

Twinkly

•8 years ago

8 Replies

MPN Voice Patients’ Forum – Llandudno, N Wales

Friday 30th September 2016, 1.30 pm – 5 pm, lunch and registration from 1 pm The Imperial Hotel, Llandudno, The Promenade, Vaughan Street, Llandudno,...

Friday 30th September 2016, 1.30 pm – 5 pm, lunch and registration from 1 pm The...

Mazcd

Partner•8 years ago

2 Replies

Is your Glass half full or half empty?

Am having a good day, no side affects at all the day after injecting PEG ( only taken a year) and is my glass half full or half empty ? Well actually mine is...

Am having a good day, no side affects at all the day after injecting PEG ( only ...

ourlife

•8 years ago

5 Replies

ET Sufferer

My name is peter and have ET CALR and just learning all I can about this been diagnosed 6 months

My name is peter and have ET CALR and just learning all I can about this been di...

peter552

•8 years ago

19 Replies

Need advice

I have ET, Jak2+, diagnosis last year platelets were around 800, before BMB and HU I had no symptoms well none that bothered me at all or even thought about...

I have ET, Jak2+, diagnosis last year platelets were around 800, before BMB and ...

mickey64

•8 years ago

4 Replies

Skin blemishes

Hi Friends,has anyone noticed they have tiny red dots on there skin,i have mostly on my arms,was wondering if ET doing it ? and should i be concerned ! best...

Hi Friends,has anyone noticed they have tiny red dots on there skin,i have mostl...

Hidden

•8 years ago

8 Replies

Read today's Sunday Times, main section page 10

Hi everyone, Suggest you read an article in today's Sunday Times, main section page 10 - you can probably find it online. Titled "Don't trust your cancer...

Hi everyone, Suggest you read an article in today's Sunday Times, main section p...

Loubprv

Volunteer•8 years ago

5 Replies

IT'S NOT QUITE ALL B S

BLOOOOOOD SHUGGGARS. Don't worry I'm not being rude I forgot to mention a couple of things last post , I'm now having to inject 20mg Insulin every morning due...

BLOOOOOOD SHUGGGARS. Don't worry I'm not being rude I forgot to mention a couple...

JediReject

•8 years ago

33 Replies

Another smile!

If you've never seen Dads Army you won't get it!

lizzziep

•8 years ago

10 Replies

To make you all smile.

😊😊😊😊

Loubprv

Volunteer•8 years ago

11 Replies

Entertain your friends, have fun and raise funds for MPN voice!

Hi everyone, I've just finished the first fund raising lunch in aid of MPN. I invited 11 friends, and charged them all £16. For that they got 2 courses and a...

Hi everyone, I've just finished the first fund raising lunch in aid of MPN. I i...

Loubprv

Volunteer•8 years ago

2 Replies

MPN experts Drs. Heaney and Mascarenhas discuss latest research and treatment news in event replay

Hello all, I just wanted to make sure you're aware that replays of Patient Power's MPN town meeting is now available. It's three hours of content from experts...

Hello all, I just wanted to make sure you're aware that replays of Patient Powe...

tclementi

•8 years ago

Be the first to reply

Good Luck to our Great Manchester 10k Runners on Sunday 22nd May

MPN Voice would like to say a huge Thank You to Sandie Ostler, Lesley Thompson, her husband Rob and her sister. Sandie is running in support of her Aunt who...

MPN Voice would like to say a huge Thank You to Sandie Ostler, Lesley Thompson, ...

Hidden

•8 years ago

1 Reply

Tremors

I've seen a few references here regarding "tremors ", I have noticed increase in tremors in my left hand when holding light items like papers. Is this...

I've seen a few references here regarding "tremors ", I have noticed increase...

Kerri2

•8 years ago

17 Replies

Neprinol AFD

Has anyone heard of this product? The information sounds like it can help with ET. I read about this on the Facebook Essential Thromocytosotis group. A lady...

Has anyone heard of this product? The information sounds like it can help with E...

130396

•8 years ago

4 Replies

Help for someone new

Has anyone heard from Moneab0987? As a new post from a 19 year old who must be scared ? There where not many replies , what can we say to help ? Maybee the...

Has anyone heard from Moneab0987? As a new post from a 19 year old who must be s...

ourlife

•8 years ago

9 Replies

ECP = WC UV

Rather a cryptic title but it represents Extra Corporeal Photopheresis my latest rounds of treatment at Manchester to tackle the Graft Versus Host where as the...

Rather a cryptic title but it represents Extra Corporeal Photopheresis my latest...

JediReject

•8 years ago

45 Replies

Hello! Second period of ET after 10 years without symptoms. The process is so slow...

Hi everyone. I am a PE teacher and Dean of Students at an international school in London, a career which appealed to me following diagnosis of ET aged 14 and...

Hi everyone. I am a PE teacher and Dean of Students at an international school ...

JLTINA

•8 years ago

9 Replies

GNR training out doors has started

Well it's official my first mile in the Bag Took 14 mins , I know I'm not Mo but hey ho I'm trying my Best for our Wonderful MPNvoice Who keep us afloat ❤️...

Well it's official my first mile in the Bag Took 14 mins , I know I'm not Mo b...

Phelpsy

•8 years ago

3 Replies

Blood clot prevention tablets

Does anyone have any experience of blood clotting tablets? I had a lower leg blood clot last summer during a hospital admission. On discharge i was changed...

Does anyone have any experience of blood clotting tablets? I had a lower leg bl...

Hidden

•8 years ago

3 Replies

Rising platelets

Hi all. Have just had my Heamo checkup today. Platelets been climbing over the last few months. Today up to 875. Am on 13 Hydrox a week and aspirin. So going...

Hi all. Have just had my Heamo checkup today. Platelets been climbing over the l...

Stevesmum42

•8 years ago

10 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for May 2016

Newbie

So many soft fruits in season just now ,do try to eat lots of these super fruits fresh for breakfast ,give you energy for a busy day ,

New to listserve: interferon?

Falling platelet count.

Meet Andrew and Esther Schorr

Myloyd Fibroses

Hello I am post ET,Now have myloyd fibroses intameadit2 I am going on Ruxolitinib tabs. Is there someone else with the same who can help

Any dietary advice for a new diagnosis of ET?

Successful critical illness claims PV

I'm really looking forward to my trip to London to the forum on July 11 th ..Iv been before and it taught me so much about my MPN. Problem !

MPN Voice Patients’ Forum – Llandudno, N Wales

Is your Glass half full or half empty?

ET Sufferer

Need advice

Skin blemishes

Read today's Sunday Times, main section page 10

IT'S NOT QUITE ALL B S

Another smile!

To make you all smile.

Entertain your friends, have fun and raise funds for MPN voice!

MPN experts Drs. Heaney and Mascarenhas discuss latest research and treatment news in event replay

Good Luck to our Great Manchester 10k Runners on Sunday 22nd May

Tremors

Neprinol AFD

Help for someone new

ECP = WC UV

Hello! Second period of ET after 10 years without symptoms. The process is so slow...

GNR training out doors has started

Blood clot prevention tablets

Rising platelets

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