Posts - MPN Voice | HealthUnlocked

MPN Voice

10,588 members • 14,633 posts

All posts for June 2021

Video of the MPN Voice ‘Virtual’ Patients’ Forum – Manchester

Held on Monday 21st June 2021 The video of the forum is now available to view on the MPN Voice YouTube channel. You can also view videos of our previous...

Held on Monday 21st June 2021 The video of the forum is now available to view on...

Mazcd

Partner•3 years ago

12 Replies

cancer

i have never done this before so i hope you can relate lol. i was always active and 4 yrs. ago it changed me and i try to understand, maybe there are others...

i have never done this before so i hope you can relate lol. i was always active ...

luekemia1234

•3 years ago

3 Replies

Deleted by mistake and

Looking for webinar on MPN

Sunnylesser

•3 years ago

3 Replies

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Concerns about long-term risks/effects of daily aspirin

Hi, I've been lurking on the forum for a few months and am so thankful to have found this site at the beginning of my MPN journey. I'm a 30-year-old female in...

Hi, I've been lurking on the forum for a few months and am so thankful to have ...

Lucy2022

•3 years ago

24 Replies

Pre MF info?- Vitamin D and immune cells stimulate bone marrow disease

https://www.sciencedaily.com/releases/2019/02/190208094330.htm?fbclid=IwAR3NqS_acR5UYGEpDbieQZGdlXX2mWpOVvVF-Z7idgiuT1fSifD8U9Q82HU

https://www.sciencedaily.com/releases/2019/02/190208094330.htm?fbclid=IwAR3NqS_a...

Magentas

•3 years ago

35 Replies

SLIGHTLY RAISED PLATLETS, BILURUBIN AND LDH

Hi, I had vision change a couple of months ago so went to the optician's and they referred me for blood tests as my vision is perfect my first bloods came back...

Hi, I had vision change a couple of months ago so went to the optician's and the...

Staceylou841

•3 years ago

1 Reply

Has anyone else been in a similar situation with a higher than Normal Platelet count ?

I have been seeing a haematologist for 3 years now , it was discovered that I had a higher than normal platelet count on an incidental finding for something...

I have been seeing a haematologist for 3 years now , it was discovered that I h...

Hamburger21

•3 years ago

6 Replies

ET

Bad weekend with ET had a bad weekend. Nightmares and screaming in sleep. Bones/joints ached all over, even laying in bed over night. This morning Experiencing...

Bad weekend with ET had a bad weekend. Nightmares and screaming in sleep. Bones/...

HazeBlue

•3 years ago

31 Replies

ET jak2 giving blood

I used to donate blood before I was diagnosed with ET, my question is can I still donate blood and actually organs as well, or not ??

I used to donate blood before I was diagnosed with ET, my question is can I st...

Bazzak

•3 years ago

20 Replies

Flying risk with ET

Hi everyone. Has anyone been advised not to fly with platelets up the 1500 mark? I’ll ask doc ASAP but was just wondering. Thank you x

Hi everyone. Has anyone been advised not to fly with platelets up the 1500 mark?...

DoubleF79

•3 years ago

17 Replies

ET

I was diagnosed with ET 12 years ago I am on hydroxyurea 2000mg a day I have been as well as expected but the last year I feel like I am deteriating. I...

I was diagnosed with ET 12 years ago I am on hydroxyurea 2000mg a day I have bee...

JeniMac

•3 years ago

14 Replies

Recently diagnosed with MF

Hi Recently been diagnosed with MF at the age of 53, and the consultant at Guy's has proposed stem cell transplant later this year, has anyone had this...

Hi Recently been diagnosed with MF at the age of 53, and the consultant at Guy's...

67Red

•3 years ago

13 Replies

Transplant at age 68 or not

I've had myelofibrosis for about 30 years and been on ruxolitinib successfully for about 8 years. We have just moved to Scotland and my new consultant has laid...

I've had myelofibrosis for about 30 years and been on ruxolitinib successfully f...

Bullace

•3 years ago

24 Replies

Glyndale

been diagnosed with et 2 years ago take aspirin and recently started on iron tablets cos my hb was low,but now I am really fatigued, any advice.

been diagnosed with et 2 years ago take aspirin and recently started on iron tab...

glyndale

•3 years ago

6 Replies

Current status of ET treatment

couple of articles about how to treat ET and novel medicines in the pipeline...

Sam2022

•3 years ago

1 Reply

Antibiotics and ET

Hi l have suffered with a recurring earache and swelling in my lymph glands before a Thrombocythemia 2020 and subsequent diagnosis of ET and Jak2 2021. For a...

Hi l have suffered with a recurring earache and swelling in my lymph glands befo...

Hidden

•3 years ago

5 Replies

BMB Negative - so next steps?

Feeling a bit strange - history so far :- Dec - tried to give blood, been a donor for a long time, but got knocked back because haemoglobin was a “tad under”....

Feeling a bit strange - history so far :- Dec - tried to give blood, been a dono...

Megabyte

•3 years ago

8 Replies

Newly diagnosed and looking for a very helpful post I would like to re-visit

I was checking through posts and answers to them a couple of weeks ago and found someone who had replied to another newbie on the site and so much of what this...

I was checking through posts and answers to them a couple of weeks ago and found...

Talllboy71

•3 years ago

5 Replies

Stepping out of antiquity: An update on emerging drugs for the treatment of polycythemia vera

Abstract Introduction: Polycythemia vera is a chronic hematologic malignancy frequently presenting with constitutional symptoms and associated with an...

Abstract Introduction: Polycythemia vera is a chronic hematologic malignancy fr...

Manouche

•3 years ago

2 Replies

426 platelet count

Hi i just got blood work done and my platlets are at 426 the emergency doctor said my blood work was fine . After a google search im all scared

Hi i just got blood work done and my platlets are at 426 the emergency doctor sa...

Deelove123

•3 years ago

12 Replies

Greater Understanding of PV, ET Drives Potential New Treatment Options

“Continued high-impact research may soon foster the development of disease-modifying therapies for PV and ET and satisfy this need for the optimal management...

“Continued high-impact research may soon foster the development of disease-modif...

Manouche

•3 years ago

7 Replies

Pegasys- How long to see results?

UPDATE! Week 13 of Pegasys and bloods today showing a definite downward trend in my platelets 🥳 Currently at 480 which is almost within normal range. Hi...

UPDATE! Week 13 of Pegasys and bloods today showing a definite downward trend i...

IrishSarah

•3 years ago

30 Replies

anaemia now high potassium

I went for blood tests today, one reason being my low haemoglobin but the nurse said it was also being tested for high potassium along with numerous other...

I went for blood tests today, one reason being my low haemoglobin but the nurse...

Hidden

•3 years ago

6 Replies

An Update (good news)

Hey, I owe a lot of people here a thank you for the support that was shown to me during the stressful and worrying time trying to find out what was going on...

Hey, I owe a lot of people here a thank you for the support that was shown to m...

HereForAWhile

•3 years ago

18 Replies

Abnormal bloods raised bulrubin,platletts, LDH

Hi, I had vision change a couple of months ago so went to the optician's and they referred me for blood tests as my vision is perfect my first bloods came back...

Hi, I had vision change a couple of months ago so went to the optician's and the...

Staceylou841

•3 years ago

2 Replies

Not taking

Re reading my last post it sounds like I started HU .. still havnt as the day before I had decided to take the plunge I felt much clearer and thought I’d wait...

Re reading my last post it sounds like I started HU .. still havnt as the day be...

Mostew

•3 years ago

21 Replies

Too hot!!

Hello everyone. I wonder how everyone is coping with the heat. Without the advantage of an air conditioned office I find it hard to cope with the heat and no...

Hello everyone. I wonder how everyone is coping with the heat. Without the adva...

Mrs_Average

•3 years ago

22 Replies

Extreme soreness and fatigue (PV)

Hi everyone… I find now that when I put in a full day of “busy” (I’m not running around) , by around 6 pm I am so fatigued and sore all over . For example...

Hi everyone… I find now that when I put in a full day of “busy” (I’m not running...

Hidden

•3 years ago

3 Replies

Antibody tests

This seems to be quite a hopeful development which would potentially show whether we have vaccine induced immunity. It was in the Scottish papers yesterday and...

This seems to be quite a hopeful development which would potentially show whethe...

DJK12

•3 years ago

5 Replies

Disappointed

My long awaited appointment with Integrative London Cancer Care hospital has been cancelled until August as Dr. Is off sick. I had to remind myself to be sorry...

My long awaited appointment with Integrative London Cancer Care hospital has bee...

Mostew

•3 years ago

13 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for June 2021

Video of the MPN Voice ‘Virtual’ Patients’ Forum – Manchester

cancer

Deleted by mistake and

Concerns about long-term risks/effects of daily aspirin

Pre MF info?- Vitamin D and immune cells stimulate bone marrow disease

SLIGHTLY RAISED PLATLETS, BILURUBIN AND LDH

Has anyone else been in a similar situation with a higher than Normal Platelet count ?

ET

ET jak2 giving blood

Flying risk with ET

ET

Recently diagnosed with MF

Transplant at age 68 or not

Glyndale

Current status of ET treatment

Antibiotics and ET

BMB Negative - so next steps?

Newly diagnosed and looking for a very helpful post I would like to re-visit

Stepping out of antiquity: An update on emerging drugs for the treatment of polycythemia vera

426 platelet count

Greater Understanding of PV, ET Drives Potential New Treatment Options

Pegasys- How long to see results?

anaemia now high potassium

An Update (good news)

Abnormal bloods raised bulrubin,platletts, LDH

Not taking

Too hot!!

Extreme soreness and fatigue (PV)

Antibody tests

Disappointed

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