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MPN Voice

10,722 members • 14,843 posts

All posts for October 2019

MPNers in Oxford : anyone like to meet up ?

Hi. I have just moved to Oxford, and have found this site very helpful. If anyone would like to meet up in person now and then, just for a chat and coffee...

Hi. I have just moved to Oxford, and have found this site very helpful. If an...

Rachelthepotter

•5 years ago

11 Replies

Are mcmillan really aware of mpn's?

I wonder because several people on the forum have stated these days they are better imformed now about mpn's but after a recent encounter in town i'm...

I wonder because several people on the forum have stated these days they are be...

Tico

•5 years ago

36 Replies

JediReject

Hi. Has anyone heard from jediReject? Or know how he’s doing? Thanks. Katie

katiewalsh

•5 years ago

1 Reply

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Hydroxycarbamide and muscle pain

Ever since I was put on hydroxycarbamide in Feb 2015 I keep getting mid to upper back muscle pain episodes. These seem to happen every time I get a cold. I...

Ever since I was put on hydroxycarbamide in Feb 2015 I keep getting mid to upper...

130396

•5 years ago

16 Replies

I have had PV Jak2 V617 positive for 4 years and just entered PV study RG7388 for Idasanutlin.

I am currently a patient participating in cycle 2 of the trial RG7388 Idasanutlin. I am currently 43 years old. Diagnosed 4.5 years ago through BMB, Jak 2...

I am currently a patient participating in cycle 2 of the trial RG7388 Idasanutli...

zocario

•5 years ago

15 Replies

MPN get together

Coffee with my ‘Blood Sisters’ Loved our chat as usual girls 😍

Sand-Dancer

•5 years ago

21 Replies

What’s people take on Pegasus

Pegasus anyone

Hahag

•5 years ago

4 Replies

New product for mouth sores

I haven’t tried this yet but it seems like it may help with the mouth sores we sometimes get. It does require a prescription. Proven Mucositis Relief Patients...

I haven’t tried this yet but it seems like it may help with the mouth sores we s...

DH65

•5 years ago

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PLATELET IS NOT NORMAL

Hello, i have a question regarding my mom’s condition. She told me her Platelet is 540, and hemoglobin is 95. Is that normal? What does it mean? What should we...

Hello, i have a question regarding my mom’s condition. She told me her Platelet ...

arabits

•5 years ago

6 Replies

New non live Shingles vaccine

There’s a new non live shingles vaccine called Shingrix - as opposed to old Vostavax used at the moment. It’s supposed to be 80/90% effective as opposed to...

There’s a new non live shingles vaccine called Shingrix - as opposed to old Vost...

Loubprv

Volunteer•5 years ago

17 Replies

A worried Mum’s need to know...

Hi, In April this year, my son was finally admitted to hospital in a critical condition and immense pain. After months, and in truth looking back, it was...

Hi, In April this year, my son was finally admitted to hospital in a critical c...

twinkletoes01

•5 years ago

52 Replies

Vitamin D, good or bad?

https://b-s-h.org.uk/about-us/news/vitamin-d-and-immune-cells-stimulate-myelofibrosis-in-mpn/ Hi all, Just wondering if anybody has any thoughts on this...

https://b-s-h.org.uk/about-us/news/vitamin-d-and-immune-cells-stimulate-myelofib...

cabinetmaker

•5 years ago

19 Replies

Gabapentin & Low Platelets

Short story- I have been on Gabapentin for a few years I have been off it for about a week. I started bruising very easily so went to have my blood checked. My...

Short story- I have been on Gabapentin for a few years I have been off it for ab...

JessicaD4

•5 years ago

1 Reply

Colds and flu

Whether this applies to mpners or those with more serious conditions I shall find out! I m inPrague at the moment - flew here on Monday with beginnings of sore...

Whether this applies to mpners or those with more serious conditions I shall fin...

Loubprv

Volunteer•5 years ago

8 Replies

Had bmb today

Hi all , just had my Bmb today and thought I would just share an update on the procedure . It wasn’t half as bad as expected . A little uncomfortable be easily...

Hi all , just had my Bmb today and thought I would just share an update on the p...

Dolman

•5 years ago

12 Replies

So true!

Maybe we should all try to think first 😊

Sand-Dancer

•5 years ago

12 Replies

PV, cold viruses, flu and immunity

Hi everyone, One of the ladies I buddy has asked me if PV lowers our immunity, and as such makes us more susceptible to cold viruses flu etc and if these...

Hi everyone, One of the ladies I buddy has asked me if PV lowers our immunity, a...

Loubprv

Volunteer•5 years ago

11 Replies

GI bleeds

Hi, I would like to ask everyone who has taken Anagrelide and hydroxy whether these tablets have ever been implicated in stomach, oesophageal, or small...

Hi, I would like to ask everyone who has taken Anagrelide and hydroxy whether th...

jointpain

•5 years ago

2 Replies

PV and burning Feet

Hello everyone, am new here and joined this forum to keep abreast with the latest MPN news as my husband was diagnosed with PV since Nov 2016 aged 49 at the...

Hello everyone, am new here and joined this forum to keep abreast with the lates...

Rheanick

•5 years ago

16 Replies

hypoxia-inducible factor (HIF) - Is this the Next Eureka Moment in Treating Cancer? - NOBEL PRIZE WINNERS ANNOUNCEMENT!

Post by MPN-MATE Admin » Tue Oct 08, 2019 2:24 am Hey everyone... :-) Potentially, this latest discovery of Oxygen (02) sensing cellular structures might be...

Post by MPN-MATE Admin » Tue Oct 08, 2019 2:24 am Hey everyone... :-) Potentia...

socrates_8

•5 years ago

5 Replies

I was diagnosed with PV in 2016 and live in North Yorkshire

Hi I live in North Yorkshire and was diagnosed with PV in October 2016. Like many peopleI had tell tale signs but didn't recognise them initially I had night...

Hi I live in North Yorkshire and was diagnosed with PV in October 2016. Like m...

Dianne-Guisborough

•5 years ago

30 Replies

Hct levels

Been steady for a few months, the target set by my consultant is 0.450. Last week, saw a locum and my hct was 0.451, so no change to meds (hydro and...

Been steady for a few months, the target set by my consultant is 0.450. Last wee...

shiftzz

•5 years ago

5 Replies

Feeling ready to speak.

Hi, It’s taken me a while to gather my thoughts and to introduce myself properly, I’m Joe and I’m 42 years old. My story feels like a bit of a long one,...

Hi, It’s taken me a while to gather my thoughts and to introduce myself properl...

cabinetmaker

•5 years ago

54 Replies

Mpn

Been to see haematologist loads of bloods taken chest x ray and abdominal scan ,go back in 3 months. Diagnosis Thrombocytosis probably due to mpn, commenced on...

Been to see haematologist loads of bloods taken chest x ray and abdominal scan ,...

glyndale

•5 years ago

16 Replies

High platelet counts as with polycythemia Vera treatments

Does anyone have a doctor that allows high platelets as they are caused by the blood draws to control the HCT and the rest

Does anyone have a doctor that allows high platelets as they are caused by the b...

Hidden

•5 years ago

7 Replies

Now 51 and lived with an ET diagnosis since the age of 28. Recently had bone marrow extraction to confirm if I have MF! Find out on 15th Oct

Looks like I may have MF and following a spout of googling I am now worried I’m not going to make my 60s!

Looks like I may have MF and following a spout of googling I am now worried I’m ...

Colin1967

•5 years ago

21 Replies

Very worried about unexplained Bruises

Hi all my question is does anyone find unexplained Bruises on their body. Ive had a few small ones appearing on my legs but I put it down to maybe having small...

Hi all my question is does anyone find unexplained Bruises on their body. Ive ha...

Camelian

•5 years ago

8 Replies

Pegasys and elevated ALT and Ferritin

Dear fellow MPN patients, I have been on treatment with Pegasys for the past 6 months at 65micrograms per week for my ET (CALRins5 - type 2) doing really well...

Dear fellow MPN patients, I have been on treatment with Pegasys for the past 6 m...

welshhuw

•5 years ago

27 Replies

How long can you take HU??

This is my first post. Hello! I was diagnosed at age 38 almost 5 years ago with PV. Since then, I have maintained with aspirin and phlebotomy ( only about...

This is my first post. Hello! I was diagnosed at age 38 almost 5 years ago wit...

DN515

•5 years ago

28 Replies

Sleeplessness after taking Hydroxycarbamide

Does anybody else have this problem (have only just started taking these)! Ratton 726

Does anybody else have this problem (have only just started taking these)! Ratto...

Ratton726

•5 years ago

9 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for October 2019

MPNers in Oxford : anyone like to meet up ?

Are mcmillan really aware of mpn's?

JediReject

Hydroxycarbamide and muscle pain

I have had PV Jak2 V617 positive for 4 years and just entered PV study RG7388 for Idasanutlin.

MPN get together

What’s people take on Pegasus

New product for mouth sores

PLATELET IS NOT NORMAL

New non live Shingles vaccine

A worried Mum’s need to know...

Vitamin D, good or bad?

Gabapentin & Low Platelets

Colds and flu

Had bmb today

So true!

PV, cold viruses, flu and immunity

GI bleeds

PV and burning Feet

hypoxia-inducible factor (HIF) - Is this the Next Eureka Moment in Treating Cancer? - NOBEL PRIZE WINNERS ANNOUNCEMENT!

I was diagnosed with PV in 2016 and live in North Yorkshire

Hct levels

Feeling ready to speak.

Mpn

High platelet counts as with polycythemia Vera treatments

Now 51 and lived with an ET diagnosis since the age of 28. Recently had bone marrow extraction to confirm if I have MF! Find out on 15th Oct

Very worried about unexplained Bruises

Pegasys and elevated ALT and Ferritin

How long can you take HU??

Sleeplessness after taking Hydroxycarbamide

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