Posts - MPN Voice | HealthUnlocked

MPN Voice

10,414 members • 14,356 posts

All posts for April 2013

I had a reaction to ? Hydroxycarbamide. I am a Polycythaemia Vera patient. Where do I go from here?

I was doing well on Hydroxycarbamide after being on the treatment for 21 days. Then I developed a Blue and numb left index finger. I attended my GP Practice...

I was doing well on Hydroxycarbamide after being on the treatment for 21 days. T...

AlRow

•11 years ago

5 Replies

MPN with ME / CFS diagnosis?

Hi Everyone, I have recently been to see a new haematologist who has asked my GP to look into whether I could also have ME or Chronic Fatigue Syndrome....

Hi Everyone, I have recently been to see a new haematologist who has aske...

StuEP

•11 years ago

11 Replies

Is it morally right to use people as human guinea pigs. . . . .

. . . to use people as human guinea pigs for orphan or other drug trials when there is little or no hope of the new drug being made available on the NHS. I...

. . . to use people as human guinea pigs for orphan or other drug trials when th...

JediReject

•11 years ago

7 Replies

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Do my blood test results indicate polycythemia?

My blood results have finally been given to me. I have been diagnosed with copd but have had other symptoms for the last 5 years. The results were MCH...

My blood results have finally been given to me. I have been diagnosed with copd ...

HeatherS-UK

•11 years ago

2 Replies

Are pharmaceutical companies charging too much for 'miracle' drug treatments?

http://www.nytimes.com/2013/04/26/business/cancer-physicians-attack-high-drug-costs.html?hpw&_r=0A close friend in America who has PV and has now been treated...

http://www.nytimes.com/2013/04/26/business/cancer-physicians-attack-high-drug-co...

Dodders

•11 years ago

9 Replies

Living with MPDs Day 2013

Saturday 16th November 2013, 8.45 am – 5 pm Brunei Gallery, School of Oriental & African Studies, Thornhaugh Street, Russell Square, London, WC1H 0XG...

Saturday 16th November 2013, 8.45 am – 5 pm Brunei Gallery, School of Orienta...

Mazcd

Partner•11 years ago

8 Replies

I have had ET for about six years now and it has been quiet. I actually thought my haemo was making it up! Recently though

in the past 6-8 months I have had incessent itching, been feeling very tired to the point where I can't even get out of bed and just don't feel myself. My...

in the past 6-8 months I have had incessent itching, been feeling very tired to ...

tracyfoltan

•11 years ago

6 Replies

So, do us PV people actually have the dreaded 'C' word?

I recently was looking on an American site about MPDs & it was the first time I'd read that PV is a slow growing cancer which put the wind up me a bit I can...

I recently was looking on an American site about MPDs & it was the first time I'...

Hidden

•11 years ago

3 Replies

Informal Glasgow Meetup ?

[Copied from Questions section.] Are there any other MPN'ers based in Scotland who would be interested in a meetup in Glasgow ? Stricnine, can you PM me...

[Copied from Questions section.] Are there any other MPN'ers based in Scotlan...

ETphonehome

•11 years ago

9 Replies

Giving a little back

Hello everyone. Since I recieved my diagnosis in January (ET & PV), I have visited this forum regulary to help me make sense of it all, to find answers to...

Hello everyone. Since I recieved my diagnosis in January (ET & PV), I have vis...

glassaddict

•11 years ago

1 Reply

I have ET and i need to know if vibrating power plates are safe for me to use?

Val_P

•11 years ago

1 Reply

Anagrelide and interferon?

I was wondering if anyone has been prescribed anagrelide and intereron at the same time? I started on Pegasys fairly recently but it isn't controlling my...

I was wondering if anyone has been prescribed anagrelide and intereron at the sa...

Jo_L

•11 years ago

3 Replies

Does anyone have myelodysplasia?

LC26

•11 years ago

1 Reply

Jak2

Hello, my partner John has ET, he was tested for jak2, but this was not present. As his platelet levels don't seem to be stable, they are looking at using...

Hello, my partner John has ET, he was tested for jak2, but this was not present....

Hidden

•11 years ago

4 Replies

Disappearing questions on homepage ?

Anyone know how I find older questions that disappear off the bottom of the homepage ?

Anyone know how I find older questions that disappear off the bottom of the home...

ETphonehome

•11 years ago

4 Replies

Bone Marrow Biopsy

Was just wondering how often should we be having bone marrow biopsy's or should we only have them if bloods become more deranged?. Keep getting conflicting...

Was just wondering how often should we be having bone marrow biopsy's or should ...

cheeks1

•11 years ago

10 Replies

Ruxolitinib trial . I'm so unsure.

My haemotologist has asked me to consider being put forward for a trial of ruxolitinib . I'm very unsure about this and quite scared to be honest . Has anyone...

My haemotologist has asked me to consider being put forward for a trial of ruxo...

maestromaverick

•11 years ago

19 Replies

How severe is your bone pain in E T & is this made worse or better with treatment ?

Hi All, I am 40 years old lady, working reduced hours (7 hour day)! now but use to be full time, I was diagnosed with ET 5 years ago with counts ranging from...

Hi All, I am 40 years old lady, working reduced hours (7 hour day)! now but use ...

Rinty

•11 years ago

22 Replies

I keep loosing my voice when talking anyone else had this since taking Hydroxycarbamide?

I have now been taking Hydroxycarbamide for 2 weeks. Had flu like symptoms for a short while. However I have noticed that something has changed in my voice. I...

I have now been taking Hydroxycarbamide for 2 weeks. Had flu like symptoms for a...

AlRow

•11 years ago

4 Replies

HU problems

A couple of months ago a hematologist put me on HU. Since then I've had a cough, sore throat, and red blotches on my neck and chest, and my fatigue has...

A couple of months ago a hematologist put me on HU. Since then I've had a cough,...

ABman

•11 years ago

1 Reply

recurrent swellings and cellulitis..i am on hydroxycarbamide & aspirin and have experienced these. Anyone have info re this and ulcers

liarose

•11 years ago

4 Replies

Glasgow 2013 MPN meetup.

A few months ago I suggested an informal meetup of MPN'ers in Glasgow. Are people still interested in the idea ? If so can anyone recommend a suitable venue in...

A few months ago I suggested an informal meetup of MPN'ers in Glasgow. Are peopl...

ETphonehome

•11 years ago

8 Replies

Hi, does anyone know if it is safe to take vitamin D supplements if you have PV?

As well as PV I had malignant melanoma 3 years ago & since then for obvious reasons have avoided the sun at all costs & use a high factor sunscreen all year...

As well as PV I had malignant melanoma 3 years ago & since then for obvious reas...

jazzyb

•11 years ago

14 Replies

I have PV and Budd Chiari with an epidemic of measles near whete i live, should I get vaccinated against it? I was born in 1973 if that help

Damon

•11 years ago

8 Replies

Critical illness payout

I would just like to thank the members who encouraged me to claim on my critical illness policy. Legal and General have paid out without argument. I have PV,...

I would just like to thank the members who encouraged me to claim on my critical...

Aime

•11 years ago

6 Replies

Mouth ulcers

I have PV and have a reoccurring problem with mouth ulcers and now oral thrush - I am not on any medication other than aspirin but having regular venesection....

I have PV and have a reoccurring problem with mouth ulcers and now oral thrush -...

Mollycat

•11 years ago

8 Replies

Chemo card

In a recent answer to my post it was mentioned someone carried a chemo card, I have never heard of such a thing. Is this necessary and if so do the hospitals...

In a recent answer to my post it was mentioned someone carried a chemo card, I h...

stevenjust

•11 years ago

19 Replies

Feeling Shattered

Hello, I am aged 41 was diagnosed with ET approx 2 years ago but was told i probably had it much longer. I am on 1500mg of Hydroxycarbamide and 75mg aspirin...

Hello, I am aged 41 was diagnosed with ET approx 2 years ago but was told i p...

stevenjust

•11 years ago

16 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for April 2013

I had a reaction to ? Hydroxycarbamide. I am a Polycythaemia Vera patient. Where do I go from here?

MPN with ME / CFS diagnosis?

Is it morally right to use people as human guinea pigs. . . . .

Do my blood test results indicate polycythemia?

Are pharmaceutical companies charging too much for 'miracle' drug treatments?

Living with MPDs Day 2013

I have had ET for about six years now and it has been quiet. I actually thought my haemo was making it up! Recently though

So, do us PV people actually have the dreaded 'C' word?

Informal Glasgow Meetup ?

Giving a little back

I have ET and i need to know if vibrating power plates are safe for me to use?

Anagrelide and interferon?

Does anyone have myelodysplasia?

Jak2

Disappearing questions on homepage ?

Bone Marrow Biopsy

Ruxolitinib trial . I'm so unsure.

How severe is your bone pain in E T & is this made worse or better with treatment ?

I keep loosing my voice when talking anyone else had this since taking Hydroxycarbamide?

HU problems

recurrent swellings and cellulitis..i am on hydroxycarbamide & aspirin and have experienced these. Anyone have info re this and ulcers

Glasgow 2013 MPN meetup.

Hi, does anyone know if it is safe to take vitamin D supplements if you have PV?

I have PV and Budd Chiari with an epidemic of measles near whete i live, should I get vaccinated against it? I was born in 1973 if that help

Critical illness payout

Mouth ulcers

Chemo card

Feeling Shattered

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