Posts - MPN Voice | HealthUnlocked

MPN Voice

10,531 members • 14,550 posts

All posts for September 2016

FIRST LINE PV SURVEY

We want to hear patients’ views on a new study for patients with polycythaemia vera (PV). Researchers in the UK have teamed up with those in France to design a...

We want to hear patients’ views on a new study for patients with polycythaemia v...

Mazcd

Partner•8 years ago

4 Replies

ET sufferer.

I'm new here and I have been suffering from ET for the last 2 1/2yrs. It have been taking 1500gms of Hydroxycarbonmide daily and some days I feel exhausted...

I'm new here and I have been suffering from ET for the last 2 1/2yrs. It have be...

Diam

•8 years ago

6 Replies

Just been diagnosed with Polycythemia Vera

Only just signed up following confirmation last week that I have Polycythemia Vera and the JAK 2 blood test came back as negative. I have been suffering...

Only just signed up following confirmation last week that I have Polycythemia Ve...

James1731

•8 years ago

17 Replies

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Diet and MPNs

Hi all, I was wondering if any of you have changed your diet to vegetarian or vegan and if so, have you seen any change in your condition or your overall...

Hi all, I was wondering if any of you have changed your diet to vegetarian or ve...

HelenK

•8 years ago

9 Replies

Hydrea and Patelet Counts

As my platelet count climbed over and up from 700 I got my diagnosis of ET. Went to Standford for bone marrow test and found Jak2 positive. I'm 70 and also...

As my platelet count climbed over and up from 700 I got my diagnosis of ET. Wen...

Jerrymohler

•8 years ago

19 Replies

Difficult day

Hey everyone, having a difficult day. I was coping ok with the new MF diagnosis..not pondering too hard, focusing on nothing changing yet, watch and wait......

Hey everyone, having a difficult day. I was coping ok with the new MF diagnosis....

Mrs_Average

•8 years ago

14 Replies

Bmb

Hi to all. Just a query. Re Bmb . How long did you have to wait for the result of a bmb. I had another one a few weeks ago , I was climbing the walls after 4...

Hi to all. Just a query. Re Bmb . How long did you have to wait for the result ...

Stevesmum42

•8 years ago

8 Replies

Great North Run - DONE!! :-)

Well that was an experience I will never forget - brilliant atmosphere and support by everyone there! Thank you to all that sponsored me, you are fab :-)...

Well that was an experience I will never forget - brilliant atmosphere and suppo...

Chrissie2885

•8 years ago

7 Replies

Good morning

Feeling very proud this morning & very emotional, sitting having a brew with my grandson fast sleep on me . He came to cheer me on yesterday This is what got...

Feeling very proud this morning & very emotional, sitting having a brew with my ...

Phelpsy

•8 years ago

4 Replies

Well 13:1 mile in the bag

What a experience simply amazing The spectators were just fab , handing out cake , sweets , water & hosing you down the kids were handing out jelly baby's ,...

What a experience simply amazing The spectators were just fab , handing out cak...

Phelpsy

•8 years ago

26 Replies

Bone Marrow Biopsy after SCT

I read everywhere that standard practise following a SCT is to undergo a bone marrow biopsy (as a reminder my SCT was following a syndrom including...

I read everywhere that standard practise following a SCT is to undergo a bone ma...

crapaud

•8 years ago

3 Replies

Don't ever consider ,giving up the day job !

One of the most important ways to combat this awful blood disorder ,is to keep a very positive state of mind ,Just always remember ,you don't die with MPN....

One of the most important ways to combat this awful blood disorder ,is to keep a...

Twinkly

•8 years ago

12 Replies

GNR today

We found each other ,through 57,000 ppl Pure luck x

Phelpsy

•8 years ago

15 Replies

MPN & Medical exemptions?

Hi everyone... :) I am hoping that this might prove an interesting topic for our discussions and that some of you might be able to assist me and my efforts in...

Hi everyone... :) I am hoping that this might prove an interesting topic for ou...

socrates_8

•8 years ago

10 Replies

3 Days to go >>>>>>🏃👟🏅🏃❤️ Mo Farah im coming to get you 🎖😜

Yekkkkks I'm getting a wee bit nervous you could say , , ive signed up for my end results to pop up on Facebook 😜 Also I have an app when my numbers entered...

Yekkkkks I'm getting a wee bit nervous you could say , , ive signed up for my e...

Phelpsy

•8 years ago

6 Replies

Does anyone else get severe itching on their jaw? Peculiar I know!

I haven't ever posted here - but have been quietly reading and learning from everything for many months! I was diagnosed with pv a year ago (jak 2+). I am on...

I haven't ever posted here - but have been quietly reading and learning from eve...

Pauline43

•8 years ago

4 Replies

Interesting video

All, I recently subscribed to the /MPN subreddit on Reddit. While it's somewhat a ghost town, I did see this video there. It was a little complex for my...

All, I recently subscribed to the /MPN subreddit on Reddit. While it's somewhat ...

Hidden

•8 years ago

5 Replies

Sitting here in the waiting room..

I'm waiting for my appointment post diagnosis with the hematologist/oncologist and am looking at everyone else here wondering if any of them have an MPN. No...

I'm waiting for my appointment post diagnosis with the hematologist/oncologist a...

Jennifer1974

•8 years ago

16 Replies

Doubtful of polycythemia

Hi...this is about my brother in law. He volunteered to donate one of his kidneys to his sister (My wife). When we discovered he has high hb -18.5, pcv-54,...

Hi...this is about my brother in law. He volunteered to donate one of his kidney...

Arneja

•8 years ago

11 Replies

Skin

Hi all This may sound really stupid but I have ET so can I please ask any fellow sufferers if you ever get 'sore skin'!? I know that sounds silly but i get a...

Hi all This may sound really stupid but I have ET so can I please ask any fellow...

Emhalliday

•8 years ago

8 Replies

Blood results

Hi so I was diagnosed with PV about 9 months ago. I've been having venesections only and aspirin, initially these were weekly then they have just started to...

Hi so I was diagnosed with PV about 9 months ago. I've been having venesections ...

Chris1919

•8 years ago

3 Replies

Venetoclax ~ Promising new drug

Hey guys... :) There are new reports about a new Australian drug developed in Melbourne called Venetoclax. It has been rushed into use in the US and in parts...

Hey guys... :) There are new reports about a new Australian drug developed in M...

socrates_8

•8 years ago

14 Replies

Over Three Years On Ruxolitinib For Pv and Life is Normal

Have been diagnosed with Pv since April 2012 and since June 2013 was lucky enough to get funding for Ruxulitinib. Well just wanted to report that this drug has...

Have been diagnosed with Pv since April 2012 and since June 2013 was lucky enoug...

nj4291

•8 years ago

18 Replies

Pleased to say...

I'm really pleased to say that after 5 weeks on Anagrelide instead of HU that my toes are healing really well, the open wounds have disappeared. They are still...

I'm really pleased to say that after 5 weeks on Anagrelide instead of HU that my...

lizzziep

•8 years ago

22 Replies

Me and my great grandson

This is me and my great grandson at his Christening yesterday obviously he's the gorgeous one .

This is me and my great grandson at his Christening yesterday obviously he's the...

Helen1952

•8 years ago

13 Replies

Rest period before the GNR On Sunday ,

Well I've ran my last run today before the big day , I'm feeling good not as fast as I would like but (hey ho) I'm very pleased with my progress , should take...

Well I've ran my last run today before the big day , I'm feeling good not as fas...

Phelpsy

•8 years ago

11 Replies

Kidney trouble?

I used to like a few pints, 4 or five on a Friday night, I then after I could not pass urine my stomach was very bloated and sore, sometimes would not recover...

I used to like a few pints, 4 or five on a Friday night, I then after I could no...

Adlon57

•8 years ago

2 Replies

Great North Run - Week to go :-)

Well it is all getting very close now, week tomorrow and it is the big day. I have done all I can now and will do my best to enjoy the day :-) Really looking...

Well it is all getting very close now, week tomorrow and it is the big day. I h...

Chrissie2885

•8 years ago

15 Replies

Nattokines or Neprinol

Does anyone take these supplements? If so, are you seeing any improvement in your quality of life?

Does anyone take these supplements? If so, are you seeing any improvement in you...

Midwesterngal

•8 years ago

1 Reply

Anyone heard of Promedior?

I've been researching clinical trials for MPNs and I came across a drug trial for PRM-151. It's currently in phase II ( looking at safety & efficacy in a...

I've been researching clinical trials for MPNs and I came across a drug trial fo...

Jennifer1974

•8 years ago

26 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for September 2016

FIRST LINE PV SURVEY

ET sufferer.

Just been diagnosed with Polycythemia Vera

Diet and MPNs

Hydrea and Patelet Counts

Difficult day

Bmb

Great North Run - DONE!! :-)

Good morning

Well 13:1 mile in the bag

Bone Marrow Biopsy after SCT

Don't ever consider ,giving up the day job !

GNR today

MPN & Medical exemptions?

3 Days to go >>>>>>🏃👟🏅🏃❤️ Mo Farah im coming to get you 🎖😜

Does anyone else get severe itching on their jaw? Peculiar I know!

Interesting video

Sitting here in the waiting room..

Doubtful of polycythemia

Skin

Blood results

Venetoclax ~ Promising new drug

Over Three Years On Ruxolitinib For Pv and Life is Normal

Pleased to say...

Me and my great grandson

Rest period before the GNR On Sunday ,

Kidney trouble?

Great North Run - Week to go :-)

Nattokines or Neprinol

Anyone heard of Promedior?

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