Posts - MPN Voice | HealthUnlocked

MPN Voice

11,276 members•15,752 posts

All posts for July 2014

Help my daughter raise funds for Leukaemia

https://www.justgiving.com/Nicola-Clarke7/ Please give a donation. Nicola is supporting blood cancer. As I live with a rare blood cancer for the rest of my...

https://www.justgiving.com/Nicola-Clarke7/ Please give a donation. Nicola is su...

wendycu

•11 years ago

2 Replies

painful spleen, as me worried

last week we went to Liverpool, for three days, which we have done many times. as my brother in law lives over there. We booked into a great Hotel, then we...

last week we went to Liverpool, for three days, which we have done many times. a...

bernie62

•11 years ago

18 Replies

UPDATE - Brighton open garden to raise funds for MPD/N Voice - now opening for an extra day on Saturday 9th August

If you fancy a day trip to Brighton, a garden in the seaside city is throwing open the gate and hosting a pop-up garden café to raise money for MPD/N Voice...

If you fancy a day trip to Brighton, a garden in the seaside city is throwing op...

Mazcd

Partner•11 years ago

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Itching

Morning all. I have been jak2 positive PRV 2yr+ and I get on with life fairly normal given the condition. Itching: What do you do. I itch after a bath a...

Morning all. I have been jak2 positive PRV 2yr+ and I get on with life fairly no...

Hughesf

•11 years ago

5 Replies

I'm dying to meet you !!......lets not leave it any longer !,,,

Iv found the perfect place ,it's got outside the door parking ,super facilities .coffee shop cumfy sofas ,and best of all it's free , come on let's meet up...

Iv found the perfect place ,it's got outside the door parking ,super facilities ...

Twinkly

•11 years ago

8 Replies

Results of taking Busulfan

Has anyone else experienced taking Busulfan to no avail? (I had mega dose, twice within 6 days) and platelets actually went up....! Would be most interested to...

Has anyone else experienced taking Busulfan to no avail? (I had mega dose, twice...

Tinkerbell13

•11 years ago

6 Replies

Food Glorious Food

Hi guys. . . Now to put my question into perspective my physical build is and has always been more Leo Sayer than say Meatloaf . . Food of all types has never...

Hi guys. . . Now to put my question into perspective my physical build is and ha...

JediReject

•11 years ago

7 Replies

ET

I was diagnosed with ET four years ago; A routine lab showed extremely low Ferritin levels, however weeks later at my first appointment with my Hematologist,...

I was diagnosed with ET four years ago; A routine lab showed extremely low Ferr...

jenraey

•11 years ago

2 Replies

No insect bites

Since I went on rux I have noticed I don't seem to get bitten by insects, horseflies etc. despite spending a lot of time outside. Has anybody else noticed this?

Since I went on rux I have noticed I don't seem to get bitten by insects, horsef...

skodaguy

•11 years ago

5 Replies

Thank you all

Hi to everyone that posted regarding my rut, thank you all so much, it's so good to feel you are not alone, when these days hit us, I made my self busy by...

Hi to everyone that posted regarding my rut, thank you all so much, it's so good...

Purplelisa

•11 years ago

3 Replies

WAITING FOR MY 'GOLDEN TICKET'

Hi Guys, as some of you will be aware I have been having an uphill struggle to be put onto Ruxolitinib. Well Im pleased to say the day has finally arrived. And...

Hi Guys, as some of you will be aware I have been having an uphill struggle to b...

JediReject

•11 years ago

21 Replies

High levels of Inflammation disrupt normal blood formation potentially leading to leukemia

The high levels of inflammation in the bone marrow were associated with the development of a myeloproliferative disorder in the mice. Myeloproliferative...

The high levels of inflammation in the bone marrow were associated with the deve...

PVReporter

•11 years ago

2 Replies

London MPN'ers

Wondered if anyone in the London area wanted to meet for coffee? Chat coffee, cake is compulsory, just a chance to have a bit of a Sound off at each other, get...

Wondered if anyone in the London area wanted to meet for coffee? Chat coffee, ca...

Chelle_

•11 years ago

15 Replies

Does anyone have trouble replying to posts?

Hi everyone, Just wondered if anyone else has the hassle of having to log in every time they'd like to reply to a post? I'm not always at home when I read my...

Hi everyone, Just wondered if anyone else has the hassle of having to log in ev...

LouisePRV

Volunteer•11 years ago

2 Replies

Sleepless not in Seattle but with ET/Busulfan and Analegride

Do other ET people suffer from sleepless nights....I have them a lot, and can be the sweats, but just wonder if the very high platelets interfere with sleep...

Do other ET people suffer from sleepless nights....I have them a lot, and can be...

Tinkerbell13

•11 years ago

9 Replies

In a rut

Why do I feel I can do something ie a coffee morning to raise funds, I get excited about my ideas then get in a rut and think what's the point of anything, I...

Why do I feel I can do something ie a coffee morning to raise funds, I get exci...

Purplelisa

•11 years ago

9 Replies

A Patient Need Survey for Leukaemia and Lymphoma Research

Leukaemia and Lymphoma Research http://leukaemialymphomaresearch.org.uk/ are conducting a ‘patient need survey’ as part of their landmark Prioritisation of...

Leukaemia and Lymphoma Research http://leukaemialymphomaresearch.org.uk/ are co...

Mazcd

Partner•11 years ago

7 Replies

PV to MF to Transplant, One Man's Story

Here's an interview on video I did with a California man who was diagnosed with PV at age 33, lived with it for almost 20 years, then progressed to...

Here's an interview on video I did with a California man who was diagnosed with ...

andrewschorr

•11 years ago

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Bone marrow transplant with MF

I have been recently diagnosed with MF and am in the initial phase (being treated with PEGASYS). In your recent MF leaflet the article appears to indicated...

I have been recently diagnosed with MF and am in the initial phase (being treate...

crapaud

•11 years ago

5 Replies

So folks ,been on the Majic trial a year next month.at clinic today ,I was the star patient ( their words). Let me help you eat for health.

If you can't recognise it don't eat it ,think were did that come from ? Ask yourself these simple questions ..Many shellfish are refuse collectors,they trawl...

If you can't recognise it don't eat it ,think were did that come from ? Ask your...

Twinkly

•11 years ago

1 Reply

Training update

Just a quick update on my training for the Belfast City Half Marathon. I am trying to stick to the plan given to me by my personal trainer so tonight was...

Just a quick update on my training for the Belfast City Half Marathon. I am tryi...

Hidden

•11 years ago

2 Replies

PLATELETS NOT NECESSARILY THE CAUSE OF HIGH THROMBOCYTOSIS?

Read an article somewhere awhile back, that Dr. Clair Harrison,on changing our thinking about MPN's, " we do not know if high platelets cause thrombocytosis?...

Read an article somewhere awhile back, that Dr. Clair Harrison,on changing our t...

Hidden

•11 years ago

3 Replies

Myelodysplasia

Hi, I'm looking for info/forum for Myelodysplasia. Has anyone know where I can find this? Thanks

Hi, I'm looking for info/forum for Myelodysplasia. Has anyone know where I can f...

sandrad

•11 years ago

2 Replies

Emotionally Exhausted

So this week is a big week in my family, my BABY sister gets married. Baby being 29, my other sister(32) has been married for 10 years in August. I feel like I...

So this week is a big week in my family, my BABY sister gets married. Baby being...

Chelle_

•11 years ago

8 Replies

It's a life sentence isn't it?

Do you wake up each morning and for a moment forget that you are now different?. I do , then I turn over ,to cramp in my leg muscle ,or my stiff neck. Maybe...

Do you wake up each morning and for a moment forget that you are now different?....

Twinkly

•11 years ago

12 Replies

Working in a hot climate.

Hi has anyone worked in a hot climate? I have been offered a job in Dammam, Saudi Arabia. I know its hot out there but I think it will be mostly office based....

Hi has anyone worked in a hot climate? I have been offered a job in Dammam, Saud...

pedders

•11 years ago

7 Replies

My clutter is my life .the memories of my travels my trophy s ..with my dogs .no way would I trash them .must be a cultural thing!!

I love my home in the country ,my animals , when all my kids have a problem need us ,we are here ,a haven of peace ,to come to. Yes I am a great granny , De...

I love my home in the country ,my animals , when all my kids have a problem nee...

Twinkly

•11 years ago

1 Reply

Patent Femoral Ovale and MPN's

I am undergoing a lot of tests at the moment and I have been diagnosed with a Patent Foramen Ovale. It is a hole between the upper chambers of the heart which...

I am undergoing a lot of tests at the moment and I have been diagnosed with a Pa...

Hidden

•11 years ago

5 Replies

Treatment for PV in France

In Spain I saw a very experienced haematologist: my treatment was 6-monthly phlebotomy, 300 or 400ml, and Aspirin. I was diagnosed with PV in 2010, had more...

In Spain I saw a very experienced haematologist: my treatment was 6-monthly phle...

lucieboo

•11 years ago

16 Replies

MPDlife June 2014 newsletter

The June 2014 issue of MPDlife, the newsletter for people with MPNs is now available to view and download at...

The June 2014 issue of MPDlife, the newsletter for people with MPNs is now avail...

Mazcd

Partner•11 years ago

Be the first to reply

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for July 2014

Help my daughter raise funds for Leukaemia

painful spleen, as me worried

UPDATE - Brighton open garden to raise funds for MPD/N Voice - now opening for an extra day on Saturday 9th August

Itching

I'm dying to meet you !!......lets not leave it any longer !,,,

Results of taking Busulfan

Food Glorious Food

ET

No insect bites

Thank you all

WAITING FOR MY 'GOLDEN TICKET'

High levels of Inflammation disrupt normal blood formation potentially leading to leukemia

London MPN'ers

Does anyone have trouble replying to posts?

Sleepless not in Seattle but with ET/Busulfan and Analegride

In a rut

A Patient Need Survey for Leukaemia and Lymphoma Research

PV to MF to Transplant, One Man's Story

Bone marrow transplant with MF

So folks ,been on the Majic trial a year next month.at clinic today ,I was the star patient ( their words). Let me help you eat for health.

Training update

PLATELETS NOT NECESSARILY THE CAUSE OF HIGH THROMBOCYTOSIS?

Myelodysplasia

Emotionally Exhausted

It's a life sentence isn't it?

Working in a hot climate.

My clutter is my life .the memories of my travels my trophy s ..with my dogs .no way would I trash them .must be a cultural thing!!

Patent Femoral Ovale and MPN's

Treatment for PV in France

MPDlife June 2014 newsletter

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