Posts - MPN Voice | HealthUnlocked

MPN Voice

10,722 members • 14,843 posts

All posts for September 2019

Blood work with a possible change in doctor's

I don't post on here very often so here goes. I started a new GP and Oncologist/Hematologist this year. Prior doctor allowed phlebotomy when HCT was at 44.6....

I don't post on here very often so here goes. I started a new GP and Oncologist/...

Alex9621

•5 years ago

12 Replies

Update on swollen ankles and feet

Just thought I would post an update on my swollen feet, ankles and painful legs. My GP got me to keep a record of my blood pressure without taking my blood...

Just thought I would post an update on my swollen feet, ankles and painful legs....

Maisie10

•5 years ago

3 Replies

Breathing difficulties

From last 2 years, I'm facing blood disorder my red blood cells increases every month along with subtypes and HB, I have wasted my blood almost 12 bottles of...

From last 2 years, I'm facing blood disorder my red blood cells increases every ...

Ethicalthinker

•5 years ago

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ET & Osteoarthritis

Is there any link between ET or any MPN & Osteoarthritis I’m 48 & have ET, started getting swollen & painful finger & thumb joints which I believe may be...

Is there any link between ET or any MPN & Osteoarthritis I’m 48 & have ET, star...

Melaniem59

•5 years ago

23 Replies

Does anyone suffer intense pressure headaches when flying?

This is a new situation for me, and has happened during my last 3 flights. The headache is so intense I cannot open eyes and feel I may pass out. My...

This is a new situation for me, and has happened during my last 3 flights. The ...

UKZA

•5 years ago

12 Replies

How did you find out that you had PV?

Just curious how others on here found out that they had PV. The first opportunity I had for diagnosis was missed at my GPs surgery when they ignored abnormal...

Just curious how others on here found out that they had PV. The first opportunit...

Transporter

•5 years ago

14 Replies

New paper on current understanding of MF and impact of mutations

Bit hard work but very interesting update re MF https://www.nature.com/articles/s41408-019-0236-2

Bit hard work but very interesting update re MF https://www.nature.com/articles/...

Paul123456

•5 years ago

16 Replies

Breathing difficulties

From last 2 years, I'm facing blood disorder my red blood cells increases every month along with subtypes and HB, I have wasted my blood almost 12 bottles of...

From last 2 years, I'm facing blood disorder my red blood cells increases every ...

Ethicalthinker

•5 years ago

2 Replies

Slowly increasing numbers

Hello Everyone, I have done my CBC reports yesterday and send to hematologist and doctor still stand on wait and watch approach My numbers are...

Hello Everyone, I have done my CBC reports yesterday and send to hematologist a...

Vigiindia

•5 years ago

6 Replies

Help with anemia

I have Myelofibrosis with hemolytic anemia. Haven’t started Jakafi. Spleen is starting to enlarge. Any ideas of how to control the anemia while taking Jakafi?...

I have Myelofibrosis with hemolytic anemia. Haven’t started Jakafi. Spleen is st...

Jerrymohler

•5 years ago

9 Replies

Cheque presentation for MPNVOICE

Myself and my son Conor who has Polycythemia Vera had the pleasure of meeting Claire Harrison and presenting a cheque to MPNVOICE following Conors Charity...

Myself and my son Conor who has Polycythemia Vera had the pleasure of meeting C...

Greenbus99

•5 years ago

30 Replies

A GOLDEN CURE...

Post by MPN-MATE Admin » Tue Sep 10, 2019 9:29 am https://www.mpn-mate.com/forum/viewtopic.php?f=3&t=80 Long ago, in the mythical past of more...

Post by MPN-MATE Admin » Tue Sep 10, 2019 9:29 am https://www.mpn-mate.com/for...

socrates_8

•5 years ago

13 Replies

Shower difficulties

I find warm water on my skin really painful. I lower the shower temp down as low as it'll go, but the water still feels like red hot needles. I have to stand...

I find warm water on my skin really painful. I lower the shower temp down as low...

lynnieb

•5 years ago

4 Replies

Low Dose Thalidomide

My haemo has floated the idea of low dose thalidomide in combination with prednisone as a potential treatment for my advanced myelofibrosis. I have read a...

My haemo has floated the idea of low dose thalidomide in combination with predni...

47Robert

•5 years ago

8 Replies

Viruses on HU, what about Anagrelide?

Some of you mentioned getting infections while on HU (hydroxyurea, hydrea) are people on Anagrelide getting more infections than they normally think they...

Some of you mentioned getting infections while on HU (hydroxyurea, hydrea) are p...

Osteomyelio

•5 years ago

5 Replies

Trouble with post signing in

Hi to all does any one have to sign in every time to read post ?

westlieght

•5 years ago

6 Replies

Medication on flights in hand luggage

ET JAK2 Has anyone taken there medication on holiday in there hand luggage on a flight abroad.

ET JAK2 Has anyone taken there medication on holiday in there hand luggage on a ...

Mycancerconcern1

•5 years ago

18 Replies

BMB Update

Hi folks! I first wrote on here about a month ago and was overwhelmed with all the replies you good people sent - thank you so much. One or two asked me to...

Hi folks! I first wrote on here about a month ago and was overwhelmed with all t...

Blaablaablaa

•5 years ago

30 Replies

Just a quick question

Hope everyone is keeping well 😊 it has been a while since I have posted. Does anyone else have a MPN and an under active thyroid?? I would be really grateful...

Hope everyone is keeping well 😊 it has been a while since I have posted. Does ...

Nettie22

•5 years ago

14 Replies

Viruses

Morning MPN people. I have ET jak2 diagnosed in 2000 treated with Hydroxycarbamide. Having just picked up a tummy bug and it lasting a whole week, I would be...

Morning MPN people. I have ET jak2 diagnosed in 2000 treated with Hydroxycarbami...

Bobthecob

•5 years ago

28 Replies

Is Pegasys controlling your hematocrit?

Hi folks, first time posting here. If you have PV and are using or have used Pegasys in the past I'd really like to hear how it worked to control your...

Hi folks, first time posting here. If you have PV and are using or have used Peg...

jon1972

•5 years ago

8 Replies

Clinical trial

Hi everyone. I have myelofibrosis. I am on ruxolitinib at the moment but my platelets keeping dropping. My oncologist put me forward for a clinical trial I...

Hi everyone. I have myelofibrosis. I am on ruxolitinib at the moment but my plat...

Ven61

•5 years ago

15 Replies

Does anybody else have Polycythaemia Vera with CAL R and TET2 mutations? My doctors seem to be very confused..

Hey everyone, My name is Erik I’m new here and if anybody has any info they could share with me about this, as I was just diagnosed in December 2018, but...

Hey everyone, My name is Erik I’m new here and if anybody has any info they coul...

Emurr

•5 years ago

3 Replies

Anyone else wonder if stress has contributed to their MPN?

hello I am interested in mental health, and how health affects our emotional well being. Also fascinated by genetic tendencies, family tree history of illness...

hello I am interested in mental health, and how health affects our emotional wel...

Doggy1903

•5 years ago

15 Replies

Risk of rebleeding, vascular events and death after gastrointestinal bleeding in anticoagulant and/or antiplatelet users

Post by MPN-MATE Admin » Fri Sep 06, 2019 3:12 am https://www.mpn-mate.com/forum/viewtopic.php?f=3&t=74&p=164#p164 This is quite an interesting article...

Post by MPN-MATE Admin » Fri Sep 06, 2019 3:12 am https://www.mpn-mate.com/foru...

socrates_8

•5 years ago

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Scientists develop possible strategy for cancer drug resistance

Post by MPN-MATE Admin » Fri Sep 06, 2019 2:07 am Sept. 4, 2019 by National Institutes of Health https://www.mpn-mate.com/forum/viewtopic.php?f=3&t=73 Hey...

Post by MPN-MATE Admin » Fri Sep 06, 2019 2:07 am Sept. 4, 2019 by National Ins...

socrates_8

•5 years ago

11 Replies

ET

Klys

•5 years ago

1 Reply

Maybe myelofibrosis

Hello, all, So yesterday I I went to a new doctor who happens to be an mpn specialist. As some of you know, I have had ET for 11 years and have never gotten a...

Hello, all, So yesterday I I went to a new doctor who happens to be an mpn speci...

Cja1956

•5 years ago

41 Replies

High sugar levels

Hi had ET for 10 years,asprin and interferon 2a had bloods done last week raised sugar levels,have to see doctor tomorrow,worried i have dry mouth, having...

Hi had ET for 10 years,asprin and interferon 2a had bloods done last week raised...

Jbut

•5 years ago

8 Replies

MPN Voice Patients' Forums - Sheffield and Glasgow

We are very pleased to announce details for MPN Voice patients’ forums in Sheffield and Glasgow. You are very welcome to attend any of the forums...

We are very pleased to announce details for MPN Voice patients’ forums in Sheffi...

Mazcd

Partner•5 years ago

7 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for September 2019

Blood work with a possible change in doctor's

Update on swollen ankles and feet

Breathing difficulties

ET & Osteoarthritis

Does anyone suffer intense pressure headaches when flying?

How did you find out that you had PV?

New paper on current understanding of MF and impact of mutations

Breathing difficulties

Slowly increasing numbers

Help with anemia

Cheque presentation for MPNVOICE

A GOLDEN CURE...

Shower difficulties

Low Dose Thalidomide

Viruses on HU, what about Anagrelide?

Trouble with post signing in

Medication on flights in hand luggage

BMB Update

Just a quick question

Viruses

Is Pegasys controlling your hematocrit?

Clinical trial

Does anybody else have Polycythaemia Vera with CAL R and TET2 mutations? My doctors seem to be very confused..

Anyone else wonder if stress has contributed to their MPN?

Risk of rebleeding, vascular events and death after gastrointestinal bleeding in anticoagulant and/or antiplatelet users

Scientists develop possible strategy for cancer drug resistance

ET

Maybe myelofibrosis

High sugar levels

MPN Voice Patients' Forums - Sheffield and Glasgow

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