Posts - MPN Voice | HealthUnlocked

MPN Voice

10,784 members • 14,980 posts

All posts for November 2017

MPN Voice Christmas Cards SOLD OUT!!!

The Christmas cards have been very popular this year and we have now sold out, and we are unable to obtain any further supplies of the cards. We would like...

The Christmas cards have been very popular this year and we have now sold out, a...

Mazcd

Partner•7 years ago

3 Replies

PV queries

Hi, there, I’m new here as I was diagnosed with PV in July, have Jak2 mutation and a massively enlarged spleen. My Haematologist is suggesting that I start on...

Hi, there, I’m new here as I was diagnosed with PV in July, have Jak2 mutation a...

Barb17

•7 years ago

6 Replies

MPN/MDS overlap

Hi, does anyone have MPN with high platelets (ET) and MDS overlap?

fjewell

•7 years ago

4 Replies

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Hives and rash

Hello, I wanted to see if anyone that has polycythemia vera had problems with hives and actual rash. I have little pimples something forming in groups of three...

Hello, I wanted to see if anyone that has polycythemia vera had problems with hi...

Kimmyk

•7 years ago

6 Replies

New Here

Hi, my 24 year old daughter has been recently diagnosed with E.T. She is reluctant to join herself, feels very isolated, that there is no-one can identify with...

Hi, my 24 year old daughter has been recently diagnosed with E.T. She is relucta...

Hillyk

•7 years ago

16 Replies

Living with MPNs conference: A fantastic event!

I want to add my heartfelt thanks to MPN Voice for organising the fantastic Living with MPNs event at the BMA on Saturday 18th Nov. Everything about the event...

I want to add my heartfelt thanks to MPN Voice for organising the fantastic Livi...

Susana7

•7 years ago

2 Replies

Demystifying Targeted Cancer Treatments

Anyone who found Dr. Adam Mead's presentation at the Living With MPNs Day as fascinating as I did, might be interested in a free online course hosted by Future...

Anyone who found Dr. Adam Mead's presentation at the Living With MPNs Day as fas...

Ovingite

•7 years ago

10 Replies

What a great London forum

What a great day the London forum was I learned such a lot by such great consultants .lt was lovely to meet so many lovely people and say hello to a few was...

What a great day the London forum was I learned such a lot by such great consult...

Poppy6060

•7 years ago

10 Replies

Living with MPN

Thanks to everyone who congratulated me on my patient talk. I was overwhelmed with the response from the audience. This was the first public speaking I have...

Thanks to everyone who congratulated me on my patient talk. I was overwhelmed wi...

EleanorPV

•7 years ago

11 Replies

So sorry I missed forum

I am so sorry that I had to miss the London Forum, but it has been a very busy weekend, with my Grandaughter Wren’s christening today and having to help out on...

I am so sorry that I had to miss the London Forum, but it has been a very busy w...

Superwoman

•7 years ago

1 Reply

Wow! What an event!

Yesterday's Living with MPNs event was a fantastic day that easily surpassed my expectations. Top class expert speakers, heartwarming patient experiences,...

Yesterday's Living with MPNs event was a fantastic day that easily surpassed my ...

Ovingite

•7 years ago

2 Replies

Essentially Thrombocythemia (Exon 10)

I was wondering if anyone else has an Exon 10 mutation as it seems very rare. It’s similar in characteristics as JAK2, I was diagnosed with Exon 10 (ET) June...

I was wondering if anyone else has an Exon 10 mutation as it seems very rare. It...

Raphael_UK

•7 years ago

14 Replies

MPN DAy IN LONDON

Hi everyone. As usual am being a total geek with this machine, Have posted several replies but they don't appear to have gone through. Just to say that I'm...

Hi everyone. As usual am being a total geek with this machine, Have posted seve...

Garden987

•7 years ago

1 Reply

PV in dogs

https://vcahospitals.com/know-your-pet/polycythemia-vera snip Polycythemia Vera By David Kerr, DVM. Edited by Robin Downing, DVM, CVPP, DAAPM. Medical...

https://vcahospitals.com/know-your-pet/polycythemia-vera snip Polycythemia Ver...

shiftzz

•7 years ago

2 Replies

Webinar

Thank you to all responsible for allowing us to sit in on the MPN seminar by the web. What an impressive line up of international clinicians along with our...

Thank you to all responsible for allowing us to sit in on the MPN seminar by the...

JSKly

•7 years ago

4 Replies

MPN day

Good morning everyone. Is anyone on watching the recording of the MPN day in London. I cannot get on it as the link is telling me it hasn’t started yet. Janet...

Good morning everyone. Is anyone on watching the recording of the MPN day in Lon...

Skye333

•7 years ago

10 Replies

Questions to ask at my first appt.

Hi All, I am 38 and was recently diagnosed with JAK2+ and Primary Myelofibrosis. I have my first appointment with a Dr at UCSF. What are the most important...

Hi All, I am 38 and was recently diagnosed with JAK2+ and Primary Myelofibrosis....

Spectabilis

•7 years ago

3 Replies

Too Iron Deficient?

Hi guys, just wandering if anyone could tell me anything about their experience with this. At last count (July) my ferritin was 16.1, but hasn't been measured...

Hi guys, just wandering if anyone could tell me anything about their experience ...

lizk1993

•7 years ago

30 Replies

Travel Issue

Can anyone help with another concern re ET. I know in regards to treatment it is left up to our Haematologist and his advice. We were due to fly to Eastern...

Can anyone help with another concern re ET. I know in regards to treatment it i...

wotan10

•7 years ago

8 Replies

MPNs and Wine

Has anyone had any problems with Wine, having to restrict intake? Obviously not an ideal supplement to HU or Interferon and all depends on level of consumption...

Has anyone had any problems with Wine, having to restrict intake? Obviously not ...

Paul123456

•7 years ago

6 Replies

Hello from a newbie with E.T.

I am a 60 year old lady who was diagnosed 3 weeks ago with E.T. after 12-18 months of, as I thought, weird, periodic and unrelated symptoms. Burning...

I am a 60 year old lady who was diagnosed 3 weeks ago with E.T. after 12-18 mont...

Mica11

•7 years ago

39 Replies

Interesting video..

Saw this some time ago, helps to explain PV... https://www.youtube.com/watch?v=tuYwvFvsmSY

Saw this some time ago, helps to explain PV... https://www.youtube.com/watch?...

shiftzz

•7 years ago

1 Reply

Blood tracking Excel

I have made available a version of my spreadsheet,see below. Its a start that fellow members can use to track their blood results.. Its not perfect, but, its...

I have made available a version of my spreadsheet,see below. Its a start that f...

shiftzz

•7 years ago

23 Replies

Friend or not a friend??

Hi Folks, I was out with a friend this week, she is a bit or rather a complete health freak!!! Which I except, but she started spouting on about my treatment...

Hi Folks, I was out with a friend this week, she is a bit or rather a complete h...

Superwoman

•7 years ago

24 Replies

Von Willebrand and MPN

Does anyone else have this condition as well as ET/PV? Wondering if it increases haemorrhage risk but decreases stroke risk.

Does anyone else have this condition as well as ET/PV? Wondering if it increases...

Paul123456

•7 years ago

1 Reply

Receding gums

Hey everyone! This may be a strange question but has anyone with an MPN (I have PV) had or have an issue with receding gums, now I know the usual suspects and...

Hey everyone! This may be a strange question but has anyone with an MPN (I have ...

Hidden

•7 years ago

9 Replies

6th monthly blood test

Hi all fellow ET followers I have just received my blood results. I was very happy to see my platelets have come down slightly to 620 from 667, only small but...

Hi all fellow ET followers I have just received my blood results. I was very hap...

Hidden

•7 years ago

5 Replies

Consultation /GP Notes

In Leicestershire,after every consultation, the note sent to your GP are also sent to the patient...In their views all notes should be transparent.. I now have...

In Leicestershire,after every consultation, the note sent to your GP are also se...

shiftzz

•7 years ago

23 Replies

Blood Tracking 2

Picture of the book supplied by Leicestershire NHS to record your blood results etc.. A really good idea...

Picture of the book supplied by Leicestershire NHS to record your blood results ...

shiftzz

•7 years ago

22 Replies

Cramps and Vibro Plate

Does anyone else use one of these as a massage aid. Really flows the blood through the legs and relaxes muscles before bed. Someone posted that cramps worse by...

Does anyone else use one of these as a massage aid. Really flows the blood throu...

Paul123456

•7 years ago

2 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for November 2017

MPN Voice Christmas Cards SOLD OUT!!!

PV queries

MPN/MDS overlap

Hives and rash

New Here

Living with MPNs conference: A fantastic event!

Demystifying Targeted Cancer Treatments

What a great London forum

Living with MPN

So sorry I missed forum

Wow! What an event!

Essentially Thrombocythemia (Exon 10)

MPN DAy IN LONDON

PV in dogs

Webinar

MPN day

Questions to ask at my first appt.

Too Iron Deficient?

Travel Issue

MPNs and Wine

Hello from a newbie with E.T.

Interesting video..

Blood tracking Excel

Friend or not a friend??

Von Willebrand and MPN

Receding gums

6th monthly blood test

Consultation /GP Notes

Blood Tracking 2

Cramps and Vibro Plate

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