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MPN Voice

10,436 members • 14,384 posts

All posts for May 2018

Patients’ forums 2018

We are very pleased to announce that we have now confirmed patients’ forums around the UK and in Dublin, which we are very excited about. Patients’ forums are...

We are very pleased to announce that we have now confirmed patients’ forums arou...

Mazcd

Partner•6 years ago

24 Replies

Acute Coronary Syndrome associated with Polycythemia

This is a long post so please forgive me. 2 weeks ago I was at the bingo when I suddenly had very bad pain in my left shoulder. It also felt that someone had...

This is a long post so please forgive me. 2 weeks ago I was at the bingo when I ...

jillydabrat

•6 years ago

13 Replies

MPN meetings

Hello I just wondered if there are going to be any MPN " get togethers" this year in London or anywhere else?

Hello I just wondered if there are going to be any MPN " get togethers" this yea...

hall2

•6 years ago

4 Replies

Want to take advantage of all our features? Just log in!

New forum member

Hello and thank you for allowing me to join. I was diagnosed with MF on the 21st of May this year so I am still in the early stages of it sinking in! I am 53...

Hello and thank you for allowing me to join. I was diagnosed with MF on the 21st...

Graham7694

•6 years ago

10 Replies

Fasting

A lot of people are fasting now and have reaped many benefits. I am adrenal deficient. Could fasting be harmful or helpful.

A lot of people are fasting now and have reaped many benefits. I am adrenal defi...

Peg1949

•6 years ago

5 Replies

Myeloid leukemia

New approach.... https://www.knoxnews.com/story/news/2018/05/29/cancer-cure-used-treat-myeloid-leukemia-found-oak-ridge-national-lab/636292002/

New approach.... https://www.knoxnews.com/story/news/2018/05/29/cancer-cure-used...

Gesha

•6 years ago

3 Replies

MPN New Zealand Information and Support and MPN Australia & NZ Myeloproliferative Neoplasm Support Community - Facebook Groups

Hi everyone, For those of you on here that are are in Australia and New Zealand I just wanted to let you know that are now two great Facebook Groups for people...

Hi everyone, For those of you on here that are are in Australia and New Zealand ...

Wentry

•6 years ago

20 Replies

Hydro and sun

Hi was wondering if everyone know if you can #enjoy the sun # more after stopping hydro. I stopped it almost one week ago. ( been taking it for 2 months one...

Hi was wondering if everyone know if you can #enjoy the sun # more after stoppin...

Elab

•6 years ago

9 Replies

Jak2 mutation!

Morning all, i’m Back after 3 weeks to see my Haemotologist on Monday, he’s questioning the results from my Jak2 test and has repeated them (results of second...

Morning all, i’m Back after 3 weeks to see my Haemotologist on Monday, he’s ques...

Trocken

•6 years ago

11 Replies

ET Jak2 and high blood pressure

Hi everyone, Is high bp common for those of us with platelet disorders? I’ve been on 40 mg Lisinopril but now it’s not working and doc has added Propanol 60 mg...

Hi everyone, Is high bp common for those of us with platelet disorders? I’ve bee...

DH65

•6 years ago

15 Replies

3 Day Headaches

I have been on Hydroxycarbamide since I was diagnosed with ET Jak2+ last October. My platelets were measured at a healthy 314 two weeks ago and overall things...

I have been on Hydroxycarbamide since I was diagnosed with ET Jak2+ last October...

Mica11

•6 years ago

12 Replies

ET

Has anyone ever tried stopping HU after blood is normal and iron is normal

Petsch

•6 years ago

35 Replies

Spleen size

After several years of stable enlarged spleen it has recently jumped from 16cms to 19cms despite 15mg Jakavi twice daily. I am in the process of trying to get...

After several years of stable enlarged spleen it has recently jumped from 16cms ...

beetle

•6 years ago

13 Replies

Tingling and pins and needles

Hi all, I have PV, my bloods are currently good, my pcv being .39 & platelets in low 400's. I am anaemic because of venesections and take aspirin. I'm...

Hi all, I have PV, my bloods are currently good, my pcv being .39 & platelets in...

johoho

•6 years ago

6 Replies

Prefibrotic Primary Myelofibrosis

Has anyone been diagnosed or know how quickly prefibrotic Primary Myelofibrosis will develop to Myelofibrosis. I am new here and been diagnosed couple days...

Has anyone been diagnosed or know how quickly prefibrotic Primary Myelofibrosis...

Elab

•6 years ago

13 Replies

TET2 mutation?

I have been told my last bone marrow biopsy was positive for Jak2 which I have heard off but not TET2? Does anyone else have this mutation or know what it...

I have been told my last bone marrow biopsy was positive for Jak2 which I have h...

Joall

•6 years ago

16 Replies

Venection help please?

I have secondary polycythaemia and would like to know how you manage to get a venesection? I have hormone injections (testosterone every two weeks since 2002)...

I have secondary polycythaemia and would like to know how you manage to get a ve...

Ashto70

•6 years ago

3 Replies

MDS/MPN overlap

I was diagnosed 2 years ago with ET Jak2 +, plus PMF after a BMB. Since then I have been on HU and all of my bloods are ok, although a bit anaemic. I have just...

I was diagnosed 2 years ago with ET Jak2 +, plus PMF after a BMB. Since then I h...

Stephen399b

•6 years ago

9 Replies

Can anyone tell. Me what calr is

I was diagnosed in 2014 with JAK2 ET. Earlier this yawn I saw an MPN specialist who took another blood test and told me I have CALR and it was the "least...

I was diagnosed in 2014 with JAK2 ET. Earlier this yawn I saw an MPN specialis...

Garden987

•6 years ago

12 Replies

Good video re MF

Encouraging discussion of new combo drugs and first mention I’ve seen of BCL-2 inhibitors which sound exciting. The interviewee says that whilst there is no...

Encouraging discussion of new combo drugs and first mention I’ve seen of BCL-2 i...

Paul123456

•6 years ago

6 Replies

Help needed pls

I have been diagnosed with ET Jak+ 3 months ago. I have been taking Hydro for 3 months ( 500g once a day) and now my platelets gone down from 1200 to 600....

I have been diagnosed with ET Jak+ 3 months ago. I have been taking Hydro for 3 ...

Elab

•6 years ago

11 Replies

MF (an acronym I often used, It'll never mean the same again!).

So finally I have gotten round to writing this post, it's about the third attempt! the last one got most the way through and my finger twitched left on the...

So finally I have gotten round to writing this post, it's about the third attemp...

P-O-T-S

•6 years ago

31 Replies

Has CBT helped anyone?

Long post, so don't get bored :) I was diagnosed with PRV Jaq2+ back in 2014 after having a stroke in 2012 - Although I hadn't felt 'great' health wise since...

Long post, so don't get bored :) I was diagnosed with PRV Jaq2+ back in 2014 aft...

Kari1961

•6 years ago

16 Replies

Autoimmune Disorders that May Coexist with MPNs

This article has drawn a great deal of interest since publication 2 day ago. I hope you will find it equally interesting. FYI, I won't be able to respond to...

This article has drawn a great deal of interest since publication 2 day ago. I h...

PVReporter

•6 years ago

1 Reply

Aching in legs after venesection

Hello , just a quick question. Why do I experience bad aching in my legs after venesection ? Every time I go about a week later my veins become extremely...

Hello , just a quick question. Why do I experience bad aching in my legs after v...

Kwebb

•6 years ago

4 Replies

Jak2 Neg, ? Familial PV

Thankyou all for your messages of support. I saw the consultant today & My Jak2 test is negative so the dr says its not PV. My sons and my blood tests are not...

Thankyou all for your messages of support. I saw the consultant today & My Jak2 ...

Vicky_b

•6 years ago

12 Replies

The perfect wine for us MPNers?

I know we should probably be cutting back on the booze (not that I’m very good at taking on board that bit of advice) but couldn’t resist this bottle given the...

I know we should probably be cutting back on the booze (not that I’m very good a...

Timjonze

•6 years ago

16 Replies

Travel with Interferon plus other things

I was diagnosed with CALR ET two years ago and was on Hydroxrea and the last 6 weeks have been on Pegasys. I have a couple of queries: When you travel with...

I was diagnosed with CALR ET two years ago and was on Hydroxrea and the last 6 w...

AnitaJ

•6 years ago

6 Replies

High blood pressure

Hi all, I was diagnosed with Polycythaemia a year ago. I was initially treated with Asprin, followed by venesection . Three months ago I started...

Hi all, I was diagnosed with Polycythaemia a year ago. I was initially treated w...

paddy67

•6 years ago

2 Replies

And so we have the answer......

We’re just getting more intelligent by the day!

Sand-Dancer

•6 years ago

15 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for May 2018

Patients’ forums 2018

Acute Coronary Syndrome associated with Polycythemia

MPN meetings

New forum member

Fasting

Myeloid leukemia

MPN New Zealand Information and Support and MPN Australia & NZ Myeloproliferative Neoplasm Support Community - Facebook Groups

Hydro and sun

Jak2 mutation!

ET Jak2 and high blood pressure

3 Day Headaches

ET

Spleen size

Tingling and pins and needles

Prefibrotic Primary Myelofibrosis

TET2 mutation?

Venection help please?

MDS/MPN overlap

Can anyone tell. Me what calr is

Good video re MF

Help needed pls

MF (an acronym I often used, It'll never mean the same again!).

Has CBT helped anyone?

Autoimmune Disorders that May Coexist with MPNs

Aching in legs after venesection

Jak2 Neg, ? Familial PV

The perfect wine for us MPNers?

Travel with Interferon plus other things

High blood pressure

And so we have the answer......

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