Posts - MPN Voice | HealthUnlocked

MPN Voice

10,722 members • 14,843 posts

All posts for July 2019

Massive headache/neck-ache during flight.

I have ET CALR. Flying from Austria to Korea yesterday, I had a massive headache starting after 4 hours. It was on the right side of my neck and up the back of...

I have ET CALR. Flying from Austria to Korea yesterday, I had a massive headache...

Anag

•5 years ago

10 Replies

Would you like to help shape haematology research in Sheffield?

Do you have experience of a blood disorder as a patient, carer, relative or friend? Do you want to influence research into blood disorders in...

Do you have experience of a blood disorder as a patient, carer, relative or frie...

Mazcd

Partner•5 years ago

4 Replies

ET since 2001, now anxious about changes in blood counts

Hello, I am new here. I was diagnosed with ET in 2001 and, with a few ups and downs, it has mostly been stable on Hydroxycarbamide, Anagrelide and Aspirin...

Hello, I am new here. I was diagnosed with ET in 2001 and, with a few ups and do...

Otterfield

•5 years ago

16 Replies

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Visiting my Haem

I am now waiting for my turn in the hospital to see my Haem, getting result from last week's blood test result. Nervous!!!

I am now waiting for my turn in the hospital to see my Haem, getting result from...

Lifam

•5 years ago

2 Replies

Just to say hi

Hi everyone .. I was diagnosed with polycythaemia 14 years ago age 40. Managed with hydroxy carbamide and aspirin . All usually ok ..sometimes a bit of a...

Hi everyone .. I was diagnosed with polycythaemia 14 years ago age 40. Managed w...

redvanman

•5 years ago

6 Replies

Thanks for everything

Thank you to everyone on this site. I read the posts daily and have learned so much. The information is so important.

Thank you to everyone on this site. I read the posts daily and have learned so ...

milw532

•5 years ago

2 Replies

CAR T-cell Therapy

Interesting looking programme on BBC 2 in the UK tonight https://www.bbc.co.uk/programmes/m0006nzt

Interesting looking programme on BBC 2 in the UK tonight https://www.bbc.co.uk/...

AndyT

•5 years ago

7 Replies

Elevated platelets - help

Hi all, I’m new to this forum and need some help as I’m feeling a bit worried after googling why my platelets could be elevated. During my pregnancy my...

Hi all, I’m new to this forum and need some help as I’m feeling a bit worried af...

Georgiajen123

•5 years ago

10 Replies

Travel insurance

This is the travel insurance I was talking about at the mpn forum today https://www.nowtravelinsurance.com/?doing_wp_cron=1562420930.0074388980865478515625

This is the travel insurance I was talking about at the mpn forum today https:...

Avamia94

•5 years ago

2 Replies

Travel insurance

What's the best travel insurance plz

Hahag

•5 years ago

2 Replies

Critical Illness Pay out

Hi all, just wondering if anyone has had a successful payout with MLC life insurance re a Critical Ilness Policy for Polycythemia and Thrombocytosis?

Hi all, just wondering if anyone has had a successful payout with MLC life insur...

Stay05

•5 years ago

6 Replies

Taking hydroxycarbamide

I’ve never asked a question before, I have ET and take hydroxycarbamide. I take 3 tablets a day and my consultant says that taking them all at once in the...

I’ve never asked a question before, I have ET and take hydroxycarbamide. I take ...

Jane10

•5 years ago

13 Replies

Car-T Therapy - The War on Blood

'War on Blood' on Sunday evening BBC 2 looks like a good programme to watch. Will be interesting to see if this type of treatment can be used in future for......

'War on Blood' on Sunday evening BBC 2 looks like a good programme to watch. Wil...

MarkD6701

•5 years ago

2 Replies

Bone Marrow Biopsy

Hi dear friends, Please, can you tell me the meaning of this sentence "cellular bone marrow aspirate showing trilineage hematopoiesis"? Please tell me about...

Hi dear friends, Please, can you tell me the meaning of this sentence "cellular ...

Ethicalthinker

•5 years ago

2 Replies

High white blood cells

Hello, all, I had a check-up with my hematologist the other day. My concern was that for the first time in 11 years, my wbc was pretty high (16.3). They’ve...

Hello, all, I had a check-up with my hematologist the other day. My concern was...

Cja1956

•5 years ago

21 Replies

Light headed 😩

Hi everyone, I’ve had ET for two and a half years now I’m on hydroxy and aspirin but the past couple of days I’ve been feeling light headed for a couple of...

Hi everyone, I’ve had ET for two and a half years now I’m on hydroxy and aspiri...

dgk70

•5 years ago

5 Replies

Essential Thrombocythemia - Recent Diagnosis Interferon

Hello All, I was recently diagnosed with ET and have Googled the subject extensively (as most would do) I felt quite confident with the knowledge I acquired...

Hello All, I was recently diagnosed with ET and have Googled the subject extensi...

Threelions

•5 years ago

28 Replies

Are platelet disorders caused by a virus

I read in a book by Antony William, who is a self proclaimed "medical medium", that platelet disorders are caused by a virus. He has a very unusual approach...

I read in a book by Antony William, who is a self proclaimed "medical medium", ...

Searcher56

•5 years ago

17 Replies

Bone Marrow Biopsy

Hi dear friends, I hope you all are doing good! Please take a look at my attached bone marrow biopsy report and share your experience related to this I just...

Hi dear friends, I hope you all are doing good! Please take a look at my attache...

Ethicalthinker

•5 years ago

7 Replies

Critical illness claim

Just wanted to say a huge thanks for your advice re making a critical illness claim. Diagnosed with PV last year which followed on from ET IN 2004. Have heard...

Just wanted to say a huge thanks for your advice re making a critical illness cl...

Spam1979

•5 years ago

9 Replies

What questions should I ask the consultant?

I have an appointment this afternoon. The Drs suspect that I have Essential Thrombocythemia but I have not had a diagnosis. I have had a bone marrow biopsy but...

I have an appointment this afternoon. The Drs suspect that I have Essential Thro...

Notenoughbluefood

•5 years ago

14 Replies

MDM2 Inhibitor - trial targeting MF/PV

Looks interesting, similar theory to RG7388 which is currently being trialed Phase 2 in UK for PV patients intolerant to other treatments This Phase 1 trial...

Looks interesting, similar theory to RG7388 which is currently being trialed Pha...

Paul123456

•5 years ago

7 Replies

Eye sight

Hello, I cannot stress enough ( wish I knew this two years ago) If when you look at straight lines, whether it’s a window frame or a picture, if you are...

Hello, I cannot stress enough ( wish I knew this two years ago) If when you loo...

Yvette49

•5 years ago

5 Replies

Critical Illness Claim

Just to let you know, claimed on my critical illness cover. Advised today have accepted claim and made payment. Had no problems.

Just to let you know, claimed on my critical illness cover. Advised today have a...

Yorkstyke

•5 years ago

13 Replies

Depression is common and linked with early death in patients with blood cancers

Hey everyone, :D I believe that this to be a most pertinent article, because it was quite simply something that I really struggled w/ myself upon being...

Hey everyone, :D I believe that this to be a most pertinent article, becaus...

socrates_8

•5 years ago

6 Replies

Aspirin and sleepiness

Hi, Weird question but I started taking 75mg aspirin twice daily about a month ago (with haemo permission) as I found it controlled my ET symptoms better and...

Hi, Weird question but I started taking 75mg aspirin twice daily about a month ...

Turtles-all-the-way

•5 years ago

8 Replies

question about meds/dizziness

I am new to this forum. ET, jak 2 positive. Wondering if anyone had issues with their eyes (feels as if they don’t move together, which causes dizziness). If...

I am new to this forum. ET, jak 2 positive. Wondering if anyone had issues with ...

Bears23

•5 years ago

14 Replies

MCHC LOW

Hi I am new here I have had Labs that have been going up slowly since 2015(hematocrit hemoglobin RBC , Just received my new lab work back hematocrit was 47.2...

Hi I am new here I have had Labs that have been going up slowly since 2015(hemat...

Summer0

•5 years ago

7 Replies

A model of good MPN care

I recently had a crisis of confidence in the care my husband (who has PV) was getting. The nurse in charge of his case left the clinic and there seemed to be...

I recently had a crisis of confidence in the care my husband (who has PV) was ge...

MarybellM

•5 years ago

10 Replies

Itchy blood...?

Please excuse this post if it's super weird and nonsensical...Is blood itchy?? We (ET people) claim that itchiness is a problem, particularly after a...

Please excuse this post if it's super weird and nonsensical...Is blood itchy?? W...

Karol_Rua

•5 years ago

11 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for July 2019

Massive headache/neck-ache during flight.

Would you like to help shape haematology research in Sheffield?

ET since 2001, now anxious about changes in blood counts

Visiting my Haem

Just to say hi

Thanks for everything

CAR T-cell Therapy

Elevated platelets - help

Travel insurance

Travel insurance

Critical Illness Pay out

Taking hydroxycarbamide

Car-T Therapy - The War on Blood

Bone Marrow Biopsy

High white blood cells

Light headed 😩

Essential Thrombocythemia - Recent Diagnosis Interferon

Are platelet disorders caused by a virus

Bone Marrow Biopsy

Critical illness claim

What questions should I ask the consultant?

MDM2 Inhibitor - trial targeting MF/PV

Eye sight

Critical Illness Claim

Depression is common and linked with early death in patients with blood cancers

Aspirin and sleepiness

question about meds/dizziness

MCHC LOW

A model of good MPN care

Itchy blood...?

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