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MPN Voice

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All posts for December 2018

New MPN Book by Prof. Claire Harrison.

Has anyone read “Managing MPNs” by Ruben Mesa & Prof. Claire Harrison.?

Raphael_UK

•6 years ago

14 Replies

Merry Christmas from Maz

I just wanted to say thank you to all of you who are part of this forum, you are all lovely people and the support you show to others is amazing, so well done...

I just wanted to say thank you to all of you who are part of this forum, you are...

Mazcd

Partner•6 years ago

42 Replies

ET and Mild Executive dysfunction.

Hi. Diagnosed with ET CALR Type 1 June 2018. I will be 60 tomorrow. I have been on a 4 year journey to find out what has been causing all sorts of bodily aches...

Hi. Diagnosed with ET CALR Type 1 June 2018. I will be 60 tomorrow. I have been ...

CalrType1

•6 years ago

19 Replies

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Does anyone know whether you can take vitamin B12 whilst taking hydroxycarbamide?

I have read that vitamin B12 can help anaemia and some cancers, I've been taking hydroxycarbamide for nearly a year, is it safe to take vitamin B12?

I have read that vitamin B12 can help anaemia and some cancers, I've been taking...

lizl

•6 years ago

7 Replies

Exercising with PV & Fast Heart Rate

Greetings All, I’m wondering if anyone is having issues with exercising. My labs are almost normal now after 3 months of HU and 2 venesections. After a slow...

Greetings All, I’m wondering if anyone is having issues with exercising. My lab...

BluePeony

•6 years ago

9 Replies

Lesson learned I guess!

My son, daughter in law, and 2 grandchildren are visiting for couple of days before Christmas. I had menus planned and all it was was pick and mix for tea...

My son, daughter in law, and 2 grandchildren are visiting for couple of days bef...

beetle

•6 years ago

13 Replies

Treatment not working

Hello everyone, I was on Hydroxyurea for a couple of months after my platelets reached 900 and it helped at first but after a while my platelets count kept...

Hello everyone, I was on Hydroxyurea for a couple of months after my platelets r...

Wadz

•6 years ago

20 Replies

So much fatigue .....

I was diagnosed with ET and then PV. Lately i have been very short of breath and the fatigue is so great i have to constantly fight to get anything done when...

I was diagnosed with ET and then PV. Lately i have been very short of breath an...

fran57paul

•6 years ago

23 Replies

Is it my imagination?

When I was diagnosed this summer with polycythamia vera I remember looking online and didn't see a page from NHS and macmillan for polycythamia, now they both...

When I was diagnosed this summer with polycythamia vera I remember looking onli...

john0084

•6 years ago

3 Replies

https://www.sanger.ac.uk/ From eye drops to potential Leukaemia treatment.

I am speechless and full of hope for the future.

Kelly2

•6 years ago

5 Replies

Very good results on RuxoPeg combo in Myelofibrosis patients (we also see similar findings in PV).

ASH 2018 interview with Dr. J.J. Kiladjian, hope you find it informative - https://bit.ly/2PNFWP8 Best, David - PV Reporter

ASH 2018 interview with Dr. J.J. Kiladjian, hope you find it informative - https...

PVReporter

•6 years ago

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Sad News from Sweden

I have just received some sad news that my Swedish friend mentioned below has just died from complications following an operation for a peptic ulcer. He was...

I have just received some sad news that my Swedish friend mentioned below has ju...

catkinspolymer

•6 years ago

14 Replies

Helping with baby that’s had inoculations today .

Looking after baby who has just had 3mth injections any precautions necessary?

Looking after baby who has just had 3mth injections any precautions necessary? ...

ET500

•6 years ago

8 Replies

Christmas Message 2018 from MPN Voice

Hello everyone 2018 has been another amazing year for MPN Voice, and all because of your fantastic support. Forums – we held 9 forums around the UK and...

Hello everyone 2018 has been another amazing year for MPN Voice, and all because...

Mazcd

Partner•6 years ago

16 Replies

Cramp Pains With Pegasys

Hi, I have MPL / ET. Ive been on Pegasys 90 mcg, for 4 weeks - Previously on HU for 2 years 6 months. I have been getting severe muscle cramps since being on...

Hi, I have MPL / ET. Ive been on Pegasys 90 mcg, for 4 weeks - Previously on HU ...

Raphael_UK

•6 years ago

15 Replies

How long for JAK2 results?

I've posted previously and I am still waiting for my JAK2 results some 6 weeks later. My GP is fab and she sent some chasers last week. The waiting is...

I've posted previously and I am still waiting for my JAK2 results some 6 weeks l...

RedSunrise

•6 years ago

8 Replies

Platelets 500

Hello. I am 33 and suffer from anxiety. I recently went to the Er for what I thought was a heart attack. It turned out to be a panic attack. Anyway while there...

Hello. I am 33 and suffer from anxiety. I recently went to the Er for what I tho...

Hidden

•6 years ago

13 Replies

I am terrified. Does it get easier?

Hi. I am new here. This is my first post. I am a 35, 36 next month, year old male living in Florida. Over Thanksgiving I experienced tingling in my right...

Hi. I am new here. This is my first post. I am a 35, 36 next month, year old ...

Rancor114

•6 years ago

29 Replies

emergency contact information

I was at the forum in Glasgow ( thank you Maz and team ) and picked up the emergency contact card to fill in and carry. Maybe members don't know about or it...

I was at the forum in Glasgow ( thank you Maz and team ) and picked up the emerg...

nanmc

•6 years ago

1 Reply

Critical illness claim

Hi, all Just wanted to say a massive thank you, to all of you that have posted on here regarding claiming on their critical illness insurance. After reading a...

Hi, all Just wanted to say a massive thank you, to all of you that have posted ...

M4rl3ym00

•6 years ago

8 Replies

Myelofibrosis

My ‘crossover’ MPN has transformed to Myelofibrosis ( confirmed by BMB) and my new consultant has decided that the only medication is Ruxolitinib. Can...

My ‘crossover’ MPN has transformed to Myelofibrosis ( confirmed by BMB) and my ...

skipperL

•6 years ago

24 Replies

Persistent cold symptoms with Pegasys?

One great side effect of being on Pegasys for the last 3 years is that I’ve had hardly any colds, as interferon helps combat the cold virus. More recently,...

One great side effect of being on Pegasys for the last 3 years is that I’ve had ...

AndyT

•6 years ago

5 Replies

ET, running, fatigue

I am ET JAK2+ aged 62 on 9x500mg Hydroxy. When I was diagnosed with ET, I started to look after my health like never before. I have been walking every day...

I am ET JAK2+ aged 62 on 9x500mg Hydroxy. When I was diagnosed with ET, I star...

Searcher56

•6 years ago

13 Replies

Still High platelets on meds

Has anyone been on hydroxyurea 2 pills a day and still have platelets high? I’ve been on it a year and half and my platelets are 999,000 ! Starting 3 pills...

Has anyone been on hydroxyurea 2 pills a day and still have platelets high? I’ve...

ggrana

•6 years ago

22 Replies

3mth checkup

Went for my 3 mth checkup and everything is where the Dr wants it in the numbers Have no complaints Go back in March. Thank you all for being here hit the...

Went for my 3 mth checkup and everything is where the Dr wants it in the numbers...

rkhabtec

•6 years ago

10 Replies

Need advice, PV symptoms?

Hi everyone, I’m new here but hoping I may bother you for some advice and hopefully talk me off the ledge of hypochondria? My doctor is on vacation and I feel...

Hi everyone, I’m new here but hoping I may bother you for some advice and hopefu...

Sick_and_tired247

•6 years ago

16 Replies

Does Pomegranite help with anaemia

I have ET and take HU (10/week) and asprin. Also iron tablets as I am a bit anaemic. Someone has suggested pomegranite juice? I have looked on various websites...

I have ET and take HU (10/week) and asprin. Also iron tablets as I am a bit anae...

Stephen399b

•6 years ago

20 Replies

FLU JAB AND VENESECTIONS

Flu Jab. Probably a coincidence but had my first flu jab last week a couple of days before my venesection. Within another couple of days developed the worst...

Flu Jab. Probably a coincidence but had my first flu jab last week a couple of d...

michele777

•6 years ago

12 Replies

Haemacrit up

Hello fellow mpn'ers. I haven't written for a while, i do check out the posts. Maybe the lonliness I feel with this spreads out and keeps me to myself. I was...

Hello fellow mpn'ers. I haven't written for a while, i do check out the posts. M...

Mal42

•6 years ago

17 Replies

Mpn forum

Glasgow did us proud. Another informative and successful forum organised by the MPN voice team.

Glasgow did us proud. Another informative and successful forum organised by the ...

EleanorPV

•6 years ago

5 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for December 2018

New MPN Book by Prof. Claire Harrison.

Merry Christmas from Maz

ET and Mild Executive dysfunction.

Does anyone know whether you can take vitamin B12 whilst taking hydroxycarbamide?

Exercising with PV & Fast Heart Rate

Lesson learned I guess!

Treatment not working

So much fatigue .....

Is it my imagination?

https://www.sanger.ac.uk/ From eye drops to potential Leukaemia treatment.

Very good results on RuxoPeg combo in Myelofibrosis patients (we also see similar findings in PV).

Sad News from Sweden

Helping with baby that’s had inoculations today .

Christmas Message 2018 from MPN Voice

Cramp Pains With Pegasys

How long for JAK2 results?

Platelets 500

I am terrified. Does it get easier?

emergency contact information

Critical illness claim

Myelofibrosis

Persistent cold symptoms with Pegasys?

ET, running, fatigue

Still High platelets on meds

3mth checkup

Need advice, PV symptoms?

Does Pomegranite help with anaemia

FLU JAB AND VENESECTIONS

Haemacrit up

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