Posts - MPN Voice | HealthUnlocked

MPN Voice

10,647 members • 14,731 posts

All posts for May 2021

New to site

Hi I am glad to have found this site I have ET, diagnosed about 10 years ago only been taking Aspirin but now my doctor wants me to start taking...

Hi I am glad to have found this site I have ET, diagnosed about 10 years ago on...

indy22

•3 years ago

11 Replies

Tears and Fears

Hi, all. Well it finally happened! I broke down in tears in front of my hematologist. I always prided myself on my independence and my ability to handle...

Hi, all. Well it finally happened! I broke down in tears in front of my hematolo...

Cja1956

•3 years ago

58 Replies

COVID JAB

Hi everyone how is everyone going with the jabs they have had I haven’t had one and still scared to I already have ET if I gave it I might get a double lit and...

Hi everyone how is everyone going with the jabs they have had I haven’t had one ...

Windy51

•3 years ago

27 Replies

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Interferon Injections tummy feels bruised.

Hello I have been on the Interferon Injections for over five months, once a week. I have noticed my tummy has become sore when I push down and feels slightly...

Hello I have been on the Interferon Injections for over five months, once a wee...

vegas22

•3 years ago

6 Replies

Vit D deficient

Recently I asked the question is it possible for my ET to be worse over time? I’ve felt slowly worse not wanting to get up, Itchy scalp morning headache, low...

Recently I asked the question is it possible for my ET to be worse over time? I’...

Wyebird

•3 years ago

14 Replies

Zink and rising platelets

Hi , I wrote a post three month ago when my platelets had risen for the first time in 2 years , I spent days wondering what may have been the causes, I...

Hi , I wrote a post three month ago when my platelets had risen for the first ti...

Dbh1962

•3 years ago

6 Replies

Bosipy results and bloods test done

Hi had my results today over phone from few weeks ago and it is lichen planus everything seems fine the cells from biospy looks okays so just going call me in...

Hi had my results today over phone from few weeks ago and it is lichen planus e...

Jody00

•3 years ago

2 Replies

Prof Harrison appt - done and went well!

Thank you SO much to all who responded to my post about how nervous I was about my appointment with Claire Harrison. As you all said, she was lovely and very...

Thank you SO much to all who responded to my post about how nervous I was about ...

Otterfield

•3 years ago

9 Replies

Research to investigate how patients with MPN and also CML respond to vaccination against Covid-19

Researchers at Guy's and St Thomas' NHS Foundation Trust are carrying out research to investigate how patients with MPN and also CML respond to vaccination...

Researchers at Guy's and St Thomas' NHS Foundation Trust are carrying out resear...

Mazcd

Partner•3 years ago

17 Replies

Health professionals need educated

Currently in hospital as having a bad time with my dystonia. Unfortunately no one knows what it is, so having to explain which is fine as I know its very rare...

Currently in hospital as having a bad time with my dystonia. Unfortunately no o...

Avamia94

•3 years ago

8 Replies

ET diagnosis JAK2 positive

Hi I’m new here and last week received a diagnosis that I was jak2 positive and have ET. Came as something of a shock and I don’t think the consultant handled...

Hi I’m new here and last week received a diagnosis that I was jak2 positive and ...

Cb1001

•3 years ago

6 Replies

ET CALR

Hi guys! I am feeling anxious tonight. I have some question for you. Is it anybody Who has ET with CALR and had it for a long time and not progressed to MF?...

Hi guys! I am feeling anxious tonight. I have some question for you. Is it anyb...

Johan2021

•3 years ago

14 Replies

jak 2 positive

hi, i have recently been told i have jak 2 poitive and i have an appointment for june 10th to see hematologist, no one has told me anything, i have only spoke...

hi, i have recently been told i have jak 2 poitive and i have an appointment for...

doglover49

•3 years ago

18 Replies

University Hospital NHS Integrated Cancer Care

I’ve got a phone appointment with Cancer department a next month . Really pleased as I can discuss taking HU with some supplements And have the approved / co...

I’ve got a phone appointment with Cancer department a next month . Really please...

Mostew

•3 years ago

5 Replies

Searching for ET specialist

Hi everyone, I've been diagnosed with ET 8 years ago. However, Im from Tbilisi, Georgia and, unfortunately, I don’t have any haematologists specialised in MPN...

Hi everyone, I've been diagnosed with ET 8 years ago. However, Im from Tbilisi, ...

Kiziria

•3 years ago

3 Replies

My adult contacts are now eligible to receive to covid 19. Vaccination

Has anyone else received the letter from their gp stating that because I may have lower protection from the vaccine given that I am immunosuppressed my...

Has anyone else received the letter from their gp stating that because I may hav...

john0084

•3 years ago

8 Replies

PV risks v PV symptoms

OK, the consultants and drugs manage the health risks, is there any research on getting rid of the symptoms?

OK, the consultants and drugs manage the health risks, is there any research on ...

shiftzz

•3 years ago

Be the first to reply

Interferon Cough

I'm convinced I have the 'cough' , consultant not convinced.. Anyone else have the same and what are your symptoms? Is it a productive cough Treatment?

I'm convinced I have the 'cough' , consultant not convinced.. Anyone else have...

shiftzz

•3 years ago

6 Replies

How can advances in polycythemia vera research help us to better understand AML?

During the Acute Leukemia Forum 2021, the AML Hub spoke to Jerry L. Spivak, Johns Hopkins University, Baltimore, US. We asked, How can advances in polycythemia...

During the Acute Leukemia Forum 2021, the AML Hub spoke to Jerry L. Spivak, John...

Manouche

•3 years ago

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Appt with Prof Harrison - getting nervous

I know this probably sounds silly but I feel nervous about my telephone appointment with Prof Harrison on Monday. I still get very anxious about having...

I know this probably sounds silly but I feel nervous about my telephone appointm...

Otterfield

•3 years ago

23 Replies

Update 5.0

I saw the MPN Specialist on Wednesday to review my status and treatment plan. I have been having issues that the doc agrees are likely related to chronic iron...

I saw the MPN Specialist on Wednesday to review my status and treatment plan. I...

hunter5582

•3 years ago

54 Replies

Special report on MPNs and vaccination

There is a very interesting report with advice from Drs Ruben Mesa, Claire Harrison and Richard T Silver on mpnforum.com . It arrived in my inbox from MPNforum...

There is a very interesting report with advice from Drs Ruben Mesa, Claire Harri...

Pauline43

•3 years ago

5 Replies

For how long you've had ET?

Hi everybody!I got few questions if you guys can share little bit from your stories.For how long you have had ET and what age you've been diagnosed? What about...

Hi everybody!I got few questions if you guys can share little bit from your stor...

Alexa445

•3 years ago

17 Replies

Update on previous post

Hello, I thought I’d give you all an update on my post about possible bone pain. Two weeks ago I was in agonizing pain in my lower back and leg. I couldn’t...

Hello, I thought I’d give you all an update on my post about possible bone pain....

Cja1956

•3 years ago

12 Replies

When vaccines are not enough

I thought this article from Blood Cancer UK was worth sharing as it shows the work being done to protect blood cancer patients from Covid where vaccines alone...

I thought this article from Blood Cancer UK was worth sharing as it shows the wo...

Ovingite

•3 years ago

1 Reply

GI bleeds

My wife has been on 3 anagrelide a day and 1 hydroxycarbamide every other day for quite a while now, they both work very well at keeping her platelets in the...

My wife has been on 3 anagrelide a day and 1 hydroxycarbamide every other day fo...

jointpain

•3 years ago

8 Replies

Low platelets after Covid vaccine

Hi I was at the Christies hospital yesterday to see Professor Sommervaille I’m on 1500 mg daily for ET/PV my platelets have never been under 400 Since 2015...

Hi I was at the Christies hospital yesterday to see Professor Sommervaille I’m o...

PhilReade

•3 years ago

31 Replies

Question please

Does anyone use a foot massager? I would like to buy one, but I don’t know if people with blood cancer and have had blood clots can us them. Thank you in...

Does anyone use a foot massager? I would like to buy one, but I don’t know if pe...

wendycu

•3 years ago

3 Replies

Biobank anti body test

Hi everyone, thought you might be interested in my results. I had Covid in December, my first vaccination 28 January and second vaccination 16 April, it was...

Hi everyone, thought you might be interested in my results. I had Covid in Decem...

eastwood1932

•3 years ago

9 Replies

HU ET

Well good news platelets are at an all time low 169..that's the lowest ever. Still recovering from a brain anyerisim..excuse the spelling but doing ok My...

Well good news platelets are at an all time low 169..that's the lowest ever. St...

heathermc

•3 years ago

5 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for May 2021

New to site

Tears and Fears

COVID JAB

Interferon Injections tummy feels bruised.

Vit D deficient

Zink and rising platelets

Bosipy results and bloods test done

Prof Harrison appt - done and went well!

Research to investigate how patients with MPN and also CML respond to vaccination against Covid-19

Health professionals need educated

ET diagnosis JAK2 positive

ET CALR

jak 2 positive

University Hospital NHS Integrated Cancer Care

Searching for ET specialist

My adult contacts are now eligible to receive to covid 19. Vaccination

PV risks v PV symptoms

Interferon Cough

How can advances in polycythemia vera research help us to better understand AML?

Appt with Prof Harrison - getting nervous

Update 5.0

Special report on MPNs and vaccination

For how long you've had ET?

Update on previous post

When vaccines are not enough

GI bleeds

Low platelets after Covid vaccine

Question please

Biobank anti body test

HU ET

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