Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for March 2018

Blood tests.... nervous

At last I have my blood tests today for suspected Polycythemia. Dont like the look of the Barts Hospital haematological malignancy diagnostic form, sounds too...

At last I have my blood tests today for suspected Polycythemia. Dont like the lo...

•6 years ago

Anyone tried this??

1.Natto: Heart Health. A popular fermented soybean food prominent in the Japanese diet, natto is a must for anyone concerned about heart or circulatory...

1.Natto: Heart Health. A popular fermented soybean food prominent in the Japane...

•6 years ago

JAK2 result in- but they won't tell me what it is!!

I phoned the surgery yesterday and apparently the result came in a week ago. However receptionist wouldn't tell me what it is because the GP hasn't reviewed...

I phoned the surgery yesterday and apparently the result came in a week ago. How...

•6 years ago

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Newbie

Hi I'm just new here, I've been diagnosed with ET nearly 12 months ago. I was 47 when first diagnosed now 48. I was put on interferon 3 times a week then...

Hi I'm just new here, I've been diagnosed with ET nearly 12 months ago. I was 47...

•6 years ago

Lab results changed

Hello everyone, I’m new here, but I’ve been reading some of your stories and I applaud all of you for being brave, and compassionate.. I’ve been diagnosed with...

Hello everyone, I’m new here, but I’ve been reading some of your stories and I a...

•6 years ago

Hellooooo...

Evening all! I've been quietly loitering on here for a year or so having been diagnosed with ET in October 2015 but this is my first post. It's been very...

Evening all! I've been quietly loitering on here for a year or so having been d...

•6 years ago

Nervous

Diagnosed with Et in January Put on hydroxy and numbers have been dropping but I can’t get rid of this nervous jittery feeling. Have been to therapy still so...

Diagnosed with Et in January Put on hydroxy and numbers have been dropping but ...

•6 years ago

Lots of water?

I notice every one talks about the importance of water when on Hydroxyurea but I never heard of that in my 3 yrs on it. Info please?

I notice every one talks about the importance of water when on Hydroxyurea but I...

•6 years ago

Aspirin and hu

Is it necessary to take aspirin when on hydroxy. I think aspirin is causing side effects

Is it necessary to take aspirin when on hydroxy. I think aspirin is causing side...

•6 years ago

ET, PV, BMB

Hi everyone, Love this website, lots of helpful information and encouragement. Please keep being positive. Diagnosed a few months ago with ET but Blood counts...

Hi everyone, Love this website, lots of helpful information and encouragement. P...

•6 years ago

A very confused update

Hi all I posted on here recently regarding starting medication and Interferon in particular for my PV. Just to recap, I went for my usual 3 monthly clinic in...

Hi all I posted on here recently regarding starting medication and Interferon in...

•6 years ago

CBD Oil

For those that have asked the question before, CBD oil is on offer at Holland & Barrett’s at the moment. I know there’s a lot of debate about it but it is...

For those that have asked the question before, CBD oil is on offer at Holland & ...

•6 years ago

Recent blood tests

Hello everyone I went to see my haemo this morning to get results of latest raft of blood tests. My platelets have risen to 688, I'm Jak2 negative (is that...

Hello everyone I went to see my haemo this morning to get results of latest raft...

•6 years ago

Interesting trial, replacing need for Chemo in SCTs.

Very early days and I don’t know how applicable it could be to MPNs/MF. Will ask my Hem next time. Could be a game changer for us. Basically, if we live long...

Very early days and I don’t know how applicable it could be to MPNs/MF. Will ask...

•6 years ago

MPN Voice News

Patients’ forum Belfast CANCELLED– unfortunately due to the weather warnings issued for the UK we have had to very reluctantly cancel the forum in...

Patients’ forum Belfast CANCELLED– unfortunately due to the weather warnings is...

Partner•6 years ago

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MPort

Hi I have PV since 05. Went on interferon late 06. So fatigued glad to retire. It took a few years to get used to PV, venesections and interferon and then i...

Hi I have PV since 05. Went on interferon late 06. So fatigued glad to retire....

•6 years ago

Migraine meds suggestions?

Hello! I have ET, JAK2+, with platelets averaging 600K. I’m a low-risk patient and only on 2 x baby aspirin daily for blood thinning. The migraines and...

Hello! I have ET, JAK2+, with platelets averaging 600K. I’m a low-risk patient a...

•6 years ago

Treatment protocol for ET

Hi, new ET member - a bit confused over treatment! I was diagnosed nearly 2 years ago with possible MDS/MPN overlap syndrome with low risk essential...

Hi, new ET member - a bit confused over treatment! I was diagnosed nearly 2 year...

•6 years ago

I need your view

I have had an MPN for 25 years come June 2019. I want to have a party to celebrate but am I behaving in bad taste. Max a Million told me I would set a record...

I have had an MPN for 25 years come June 2019. I want to have a party to celebra...

•6 years ago

Effects worth side effects?

I started hydroxyurea on 2/14. within a couple of days my throat started to feel scratchy and kept getting more pronounced. By the 24th I had a very sore...

I started hydroxyurea on 2/14. within a couple of days my throat started to feel...

•6 years ago

BELFAST PATIENTS'FORUM CANCELLED

We are very sorry but we have had to make the decision to cancel the forum in Belfast on Sat 3rd March due to the bad weather. We will be re-arranging it and...

We are very sorry but we have had to make the decision to cancel the forum in Be...

Partner•6 years ago

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Venesection/ Increase HU

Since my PV diagnosis 2 years+ ago, I have been having venesections at every 8 weekly hospital visit as my level is always over the magic no of 450. My iron...

Since my PV diagnosis 2 years+ ago, I have been having venesections at every 8 w...

•6 years ago

Belfast Forum

Hi Maz. Just wondering if any decisions been made yet whether the Belfast Forum will be running on Saturday? Regards Mandy.

Hi Maz. Just wondering if any decisions been made yet whether the Belfast Forum...

•6 years ago

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