Posts - MPN Voice | HealthUnlocked

MPN Voice

10,435 members • 14,382 posts

All posts for January 2015

Itiching Relief.

I use the combination of Ayarax and Zantac am and pm that has helped some. I also have a problem with itching at night and am currently taking Neurotin with 80...

I use the combination of Ayarax and Zantac am and pm that has helped some. I als...

TxTwin

•9 years ago

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Don't let the grey weather get you down fill up on the colours of our wonderful fruit options..

Now is the best time for filling your tanks with all those "c" vitamins ..to fend of colds and flu..bugs .. The best way to comfort eat is pile those good...

Now is the best time for filling your tanks with all those "c" vitamins ..to fen...

Twinkly

•9 years ago

2 Replies

Here we go again

So I saw Prof Harrison the other day and it was decided I am being put forward for the Majic trial, pending I'm selected am the liver specialist says yes....I...

So I saw Prof Harrison the other day and it was decided I am being put forward f...

Chelle_

•9 years ago

11 Replies

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Succinct hopeful video for new patients

Dr. Navel Daver in Houston is an up and coming expert. In this video he explains very clearly what can give MPN patients hope, especially those of us with MF:...

Dr. Navel Daver in Houston is an up and coming expert. In this video he explain...

andrewschorr

•9 years ago

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Wow! Feeling good.........

Not so long ago Claracluck posted a question about whether altering the time of day when taking Hydroxy would help with alleviating the dreaded fatigue....

Not so long ago Claracluck posted a question about whether altering the time of ...

Polly-PV

•9 years ago

8 Replies

Does Pegylated interferon alfa-2a cure ET? Some paper show yes. Is this credible?

I found a paper Quintás-Cardama A, Kantarjian H, Manshouri T, et al. Pegylated interferon alfa-2a yields high rates of hematologic and molecular response in...

I found a paper Quintás-Cardama A, Kantarjian H, Manshouri T, et al. Pegylated ...

Midas_

•9 years ago

6 Replies

MPN VOICE FUNDRAISING UPDATE JANUARY 2015

Happy New Year, and what a fantastic year this is going to be for MPN Voice!! You are already having some wonderful ideas for fundraising for MPN Voice and...

Happy New Year, and what a fantastic year this is going to be for MPN Voice!! Y...

Mazcd

Partner•9 years ago

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Protecting you in a clinical trial

Here's a video we produced with a cancer center physician's assistant about protections for you and clinical trials....

Here's a video we produced with a cancer center physician's assistant about prot...

andrewschorr

•9 years ago

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Headaches and ET and Chemo

Hi everyone, does anyone else suffer constant (day in and day out) headaches with ET. Not sure whether to blame the Busulfan (though haematologist thinks...

Hi everyone, does anyone else suffer constant (day in and day out) headaches wit...

Tinkerbell13

•9 years ago

14 Replies

Seriously fed up

Just around Christmas the fatigue started big time. Thought it was just the stress of the festive season. Oh no.. January 7th both sides of back went into what...

Just around Christmas the fatigue started big time. Thought it was just the stre...

fannetastic

•9 years ago

16 Replies

East Midlands mpn meeting feb 2015

feel free to share poster put at Maggie's and sent to Angela who I hope will distribute to other hospitals as with the other posters hope lots of you can...

feel free to share poster put at Maggie's and sent to Angela who I hope will dis...

Shelly1960

•9 years ago

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tonight was the first east midlands mpn group meeting in Nottingham it went really well

thank you so much for all of you that turned up think it was a fabulous turn out for the first meeting there were 12 patients and 3 supporters and 3 speakers...

thank you so much for all of you that turned up think it was a fabulous turn ou...

Shelly1960

•9 years ago

10 Replies

MCV/Haemoglobin levels

Hello All, I have just been checking my last blood test levels. I noticed that my RBC and Haemoglobin levels are low and the MCV and MCH levels are high....

Hello All, I have just been checking my last blood test levels. I noticed that ...

lizzziep

•9 years ago

4 Replies

When to take HU

A number of people on here remark how fatigued they are. I take my HU in the morning and don't suffer with fatigue, but is there an argument to take it a...

A number of people on here remark how fatigued they are. I take my HU in the mo...

ClaraCluck

•9 years ago

7 Replies

Newly diagnosed

Just found out I have ET after BMB. I am new to this site and the whole concept of having blood cancer. My hemotologist is having me take aspirin every day...

Just found out I have ET after BMB. I am new to this site and the whole concept...

Janet123

•9 years ago

15 Replies

Pernicious anemia

Hi everyone Just trying to fine out if there is any link. I have ET and came off HU last yr and started Interferon in May. Have now had to start injections of...

Hi everyone Just trying to fine out if there is any link. I have ET and came off...

eastwood1932

•9 years ago

2 Replies

New scans and results

Hi Maz, Hi all other MPN people on this site.I have just had 'Doppler'scans,as my G P was concerned that in spite of increased Hydrea,hematocrite was not...

Hi Maz, Hi all other MPN people on this site.I have just had 'Doppler'scans,as m...

Inca

•9 years ago

4 Replies

My checkup Results

Bloods are good :) But Platelet count is still the same as last checkup 425 , (8wks ago ) even though they upped my HU by 1Tablet , made no difference , so...

Bloods are good :) But Platelet count is still the same as last checkup 425 , (8...

Phelpsy

•9 years ago

6 Replies

Iv been into hospital .chest infection spread ,to my kidneys .ambulance took me in. Excellent service .very efficient .the two paramedics ..

I was xrayed on arrival ,then tested . Put onto a drip for 48 hours ...wonderful nurses checked me all night while my temperature went up ..I felt melted ..but...

I was xrayed on arrival ,then tested . Put onto a drip for 48 hours ...wonderful...

Twinkly

•9 years ago

12 Replies

Checkup Day ,

Hi all hope your keeping well , & keeping warm , in this cool snap , hospital 3pm for me checkup time , finger crossed all's well :) , I've had a good 8 weeks...

Hi all hope your keeping well , & keeping warm , in this cool snap , hospital 3p...

Phelpsy

•9 years ago

4 Replies

Who is going to the Colchester Forum ?

I just wondered who is going to the Colchester Forum on the 4th Feb. It would be nice to put a face to the name. I went to the London MPD day but haven't...

I just wondered who is going to the Colchester Forum on the 4th Feb. It would be...

rubyrubyruby

•9 years ago

14 Replies

Iron supplement

Hi all. I'm new to this forum. I have the JAK2 mutation and also hypothyroid. For the past few months my endocrinologist has put me on T3 as I had stopped...

Hi all. I'm new to this forum. I have the JAK2 mutation and also hypothyroid. F...

130396

•9 years ago

21 Replies

ET and PV - holiday insurance

Happy New Year everyone - I have just returned from my visit to the Consultant and when he was filling my blood form out for my next visit he wrote across it...

Happy New Year everyone - I have just returned from my visit to the Consultant a...

Hidden

•9 years ago

12 Replies

reminder for East Midlands mpn group meeting nottingham Weds 21st January 2015

Looking forward to meeting you all michelle

Shelly1960

•9 years ago

7 Replies

Pomelo and drug metabolism

I was offered some pomelo by a neighbour who was peeling one but declined as it looked very like grapefruit and I take ruxolitinib. Does anyone know if this...

I was offered some pomelo by a neighbour who was peeling one but declined as it ...

skodaguy

•9 years ago

5 Replies

Sharing info on Taking Busulfan for ET

Hi everyone and a very happy, and as much as possible, healthy new year to you all. Is there anyone around who is on Busulfan? Should love to speak to someone...

Hi everyone and a very happy, and as much as possible, healthy new year to you a...

Tinkerbell13

•9 years ago

2 Replies

My good friend bought me a juicer for Christmas ..great idea .read on ...

It's so easy to get your 5 a day ..my internals are feeling so well . A great way to eat those fruits that are difficult to chew ,, Apples and pineapples...

It's so easy to get your 5 a day ..my internals are feeling so well . A great w...

Twinkly

•9 years ago

5 Replies

LLS Discusses Initiatives to halt early stage blood cancers

*** HAPPY NEW YEAR !! *** PV Reporter sits down with Dr Lee Greenberger, Chief Scientific Officer with The Leukemia & Lymphoma Society to discuss initiatives...

*** HAPPY NEW YEAR !! *** PV Reporter sits down with Dr Lee Greenberger, Chief S...

PVReporter

•9 years ago

1 Reply

Happy New Year

To all my wonderful friends & MPN Voice Buddy's , I wish you all a Happy & Most of all HEALTHY NEW YEAR , You have been a rock to me over last year So that...

To all my wonderful friends & MPN Voice Buddy's , I wish you all a Happy & Mo...

Phelpsy

•9 years ago

14 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for January 2015

Itiching Relief.

Don't let the grey weather get you down fill up on the colours of our wonderful fruit options..

Here we go again

Succinct hopeful video for new patients

Wow! Feeling good.........

Does Pegylated interferon alfa-2a cure ET? Some paper show yes. Is this credible?

MPN VOICE FUNDRAISING UPDATE JANUARY 2015

Protecting you in a clinical trial

Headaches and ET and Chemo

Seriously fed up

East Midlands mpn meeting feb 2015

tonight was the first east midlands mpn group meeting in Nottingham it went really well

MCV/Haemoglobin levels

When to take HU

Newly diagnosed

Pernicious anemia

New scans and results

My checkup Results

Iv been into hospital .chest infection spread ,to my kidneys .ambulance took me in. Excellent service .very efficient .the two paramedics ..

Checkup Day ,

Who is going to the Colchester Forum ?

Iron supplement

ET and PV - holiday insurance

reminder for East Midlands mpn group meeting nottingham Weds 21st January 2015

Pomelo and drug metabolism

Sharing info on Taking Busulfan for ET

My good friend bought me a juicer for Christmas ..great idea .read on ...

LLS Discusses Initiatives to halt early stage blood cancers

Happy New Year

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