Posts - MPN Voice | HealthUnlocked

MPN Voice

10,832 members•15,126 posts

All posts for October 2020

Night sweats

Hi I’m on Hydrea with ET does anyone get night sweats

Windy51

•4 years ago

15 Replies

Should we shield again if we are given another letter? What’s the current advice from MPN experts now we are seven months into the pandemic?

With UK Covid numbers rocketing once again, there has been murmurings in the news re shielding again. Maz, now we are seven months into Covid 19, please could...

With UK Covid numbers rocketing once again, there has been murmurings in the new...

SDJD

•4 years ago

8 Replies

Flu jab and blood thinners

My son (35) has just had his flu jab and was asked if he was taking blood thinners - not something I've ever been asked before. A quick search found that...

My son (35) has just had his flu jab and was asked if he was taking blood thinne...

Ovingite

•4 years ago

9 Replies

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Suggestions for weight gain diet with MF

MF is starting to bite. I've lost 7-8 lbs in two weeks, plus bone pain, very low HGB, etc. I've been researching weight gain diets for both bulk and muscle...

MF is starting to bite. I've lost 7-8 lbs in two weeks, plus bone pain, very lo...

RobinBrum

•4 years ago

12 Replies

healthy diet

am back here again just wondering i got told stress me out to have a healthy lifestyle and diet, does diet mean has in eat like veg salads fruits to had into...

am back here again just wondering i got told stress me out to have a healthy lif...

Jody00

•4 years ago

18 Replies

Flu jab

First time I've had a flu jab done couple days ago said I would get like mild flu like symptoms awoke up this morning and yes ive got the flu lol I didnt think...

First time I've had a flu jab done couple days ago said I would get like mild fl...

Jody00

•4 years ago

25 Replies

Migraine with aura

Hi everyone, I just was curious if anyone with ET has experienced migraines with auras? I have not been diagnosed but have an appointment with a hematologist...

Hi everyone, I just was curious if anyone with ET has experienced migraines wit...

kase28

•4 years ago

19 Replies

Specialist consultant

I came across a post listing the location of MPN consultants can't find it now would anyone have details of UK based ones and how you get a referral . After...

I came across a post listing the location of MPN consultants can't find it now w...

ciye

•4 years ago

3 Replies

Pegasys having positive impact at last

i am 53 , have ET, Jak2 mutation and it’s s really good news today, 12 months ago my platelets were at 1500, and my consultant advised to start on Pegasys. I...

i am 53 , have ET, Jak2 mutation and it’s s really good news today, 12 months ag...

Suebon

•4 years ago

12 Replies

right ear,lightheadness headaches ,new mole

Hi been doctors today with right ear being block with having headaches,light headness dizzy back pain ,so far said my right ear his block to use olive oil then...

Hi been doctors today with right ear being block with having headaches,light hea...

Jody00

•4 years ago

8 Replies

Platelets slowly rising to 681 over a few years.

New to this site. Found this site while searching for platelet information. What a great site and resource. I am 48 years old and recently went in for my...

New to this site. Found this site while searching for platelet information. Wha...

mother2britton

•4 years ago

10 Replies

NEXT MATES – ZOOM CAFE CATCHUP - REMINDER - SUNDAY 11 OCTOBER – From 6 & 7 PM (Two x2 Meeting Schedules)

Evening everyone... My apologies if this message is short notice on this occasion... But... I do have a really great excuse... But ask me later at the meeting,...

Evening everyone... My apologies if this message is short notice on this occasio...

socrates_8

•4 years ago

6 Replies

Calr type 1 means what?

Today I was told that I have an ET type 1 calr mutation . I wasn’t aware of what type my calr mutation was. I have been trying to google it and it seems to be...

Today I was told that I have an ET type 1 calr mutation . I wasn’t aware of what...

Bohus

•4 years ago

6 Replies

Spleen slightly enlarged on the upper side of normal. UPDATE on results.

Hi Everyone, I'm panicking a bit as I got my spleen ultrasound results and I've been told my spleen is slightly enlarged on the upper side of normal....

Hi Everyone, I'm panicking a bit as I got my spleen ultrasound results and I've ...

EmeraldA

•4 years ago

31 Replies

Any advice?

Hi everybody! I have been on hydroxyurea for two years now. It is not keeping my platelets at a level where my oncologist is comfortabke with. They are...

Hi everybody! I have been on hydroxyurea for two years now. It is not keeping my...

Dawn79

•4 years ago

10 Replies

Can clopidragel cause liver injury

I am 40 years old male. Recently I hv been diagnosed with pv and as i hv stomach injury so doctor gave me clopidragel 75 instead of aspirin along with periodic...

I am 40 years old male. Recently I hv been diagnosed with pv and as i hv stomach...

Spa1981

•4 years ago

2 Replies

Slightly high Platelet, 418 according to my physician

Hi, I am 50 years old and my doctor just did thorough blood work check on me at my annual appointment. Everything was "perfect", according to her. Except for...

Hi, I am 50 years old and my doctor just did thorough blood work check on me at ...

BobbyBlack

•4 years ago

7 Replies

Essential Thrombocythemia and Alcohol

I know this has come up a few times but I'm still confused. I'm recently diagnosed, I'm 43. All my appointment have been on the phone which makes it a bit...

I know this has come up a few times but I'm still confused. I'm recently diagnos...

queeniethequeen

•4 years ago

34 Replies

Great news - funding from the National Lottery Community Fund

We are delighted to have been awarded funding from the National Lottery Community Fund. Like many charities we are facing challenges to our funding because...

We are delighted to have been awarded funding from the National Lottery Communit...

Mazcd

Partner•4 years ago

18 Replies

Burning legs

Hi .... Does anyone with PV experience burning sensation in the legs... many times itching with it. ???? I’ve had it many times over the past 6 months or so...

Hi .... Does anyone with PV experience burning sensation in the legs... many tim...

Hidden

•4 years ago

6 Replies

A new mole on my face

Hi just wanting to ask am 41 years old and other week a woke up with a new mole on my face its got bit bigger and on top like a scabbing onit feels scabby to...

Hi just wanting to ask am 41 years old and other week a woke up with a new mole ...

Jody00

•4 years ago

5 Replies

High Potassium

Hello everyone Hope you are all well. Can anyone help me please? I have ET and my potassium levels are creeping up and concerned my kidneys will be affected....

Hello everyone Hope you are all well. Can anyone help me please? I have ET and ...

Mich10

•4 years ago

28 Replies

Eeerrrr ,, am I in the right place?

Hi everyone 😊 I'm sorry to be a pain but I was looking for support for long term covid ,,, I don't think I've come to the right place,, can anyone help point...

Hi everyone 😊 I'm sorry to be a pain but I was looking for support for long ter...

Hidden

•4 years ago

2 Replies

Blood counts

But fed up got essential thromboycemia jak2 poss since jan this year my bloods playlets were going down now they’ve gone up last blood test so upped my hydra...

But fed up got essential thromboycemia jak2 poss since jan this year my bloods p...

Chel1

•4 years ago

10 Replies

Taking Vitamin D with ET

Morning all, thought I would ask this question of you knowledgeable peeps. Just wondering if it’s alright to use a 10mcg Vitamin D spray into your mouth...

Morning all, thought I would ask this question of you knowledgeable peeps. Just ...

Superwoman

•4 years ago

6 Replies

Liquid biopsy

https://onlinelibrary.wiley.com/doi/10.1111/bjh.17087 Did you test your genes for this method? Can you talk me about it?. Thanks

https://onlinelibrary.wiley.com/doi/10.1111/bjh.17087 Did you test your genes f...

SoledadBarcelona

•4 years ago

1 Reply

Mouth sores

Hi again friends, So I've been on hydroxurea for over a month now 2 /500mg daily I'm not sure if it's the meds or the mask we have to wear now but I'm...

Hi again friends, So I've been on hydroxurea for over a month now 2 /500mg dail...

Lorid68

•4 years ago

9 Replies

Anyone with experience of both aspirin and Clopidogrel (Plavix)?

My hematologist wanted to change my Aspirin to clopiogrel instead. I am not familiar with this drug. I am very cautious with new drugs and would like to ask...

My hematologist wanted to change my Aspirin to clopiogrel instead. I am not fami...

Bohus

•4 years ago

16 Replies

Been taking Exjade to my detriment

Chose to try Exjade after being told I had large iron levels due to transfusions. Was offered a choice of wait and see, think about it or just start. I am...

Chose to try Exjade after being told I had large iron levels due to transfusions...

skodaguy

•4 years ago

5 Replies

Hair Thinning

Hi guys, Have recently been losing quite a bit of hair in the shower, I would say about 3 x as much as usual when I wash my hair. My hair has always been...

Hi guys, Have recently been losing quite a bit of hair in the shower, I would ...

Mackydee123

•4 years ago

20 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for October 2020

Night sweats

Should we shield again if we are given another letter? What’s the current advice from MPN experts now we are seven months into the pandemic?

Flu jab and blood thinners

Suggestions for weight gain diet with MF

healthy diet

Flu jab

Migraine with aura

Specialist consultant

Pegasys having positive impact at last

right ear,lightheadness headaches ,new mole

Platelets slowly rising to 681 over a few years.

NEXT MATES – ZOOM CAFE CATCHUP - REMINDER - SUNDAY 11 OCTOBER – From 6 & 7 PM (Two x2 Meeting Schedules)

Calr type 1 means what?

Spleen slightly enlarged on the upper side of normal. UPDATE on results.

Any advice?

Can clopidragel cause liver injury

Slightly high Platelet, 418 according to my physician

Essential Thrombocythemia and Alcohol

Great news - funding from the National Lottery Community Fund

Burning legs

A new mole on my face

High Potassium

Eeerrrr ,, am I in the right place?

Blood counts

Taking Vitamin D with ET

Liquid biopsy

Mouth sores

Anyone with experience of both aspirin and Clopidogrel (Plavix)?

Been taking Exjade to my detriment

Hair Thinning

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