Posts - MPN Voice | HealthUnlocked

MPN Voice

10,434 members • 14,381 posts

All posts for March 2016

Result

Hi folks, well Boots the Chemist relented and have given me Medac Hydroxycarbamide. Spoke with my GPs and they now have put on my medication repeat Medac so...

Hi folks, well Boots the Chemist relented and have given me Medac Hydroxycarbami...

Superwoman

•8 years ago

5 Replies

A day in Blackpool

Thank you so very much for the warm welcome to this site. I had an appointment to see the specialist nurse yesterday at 10.15. As I live a distance from the...

Thank you so very much for the warm welcome to this site. I had an appointment ...

Fionnuaghla

•8 years ago

13 Replies

Bath Patients' Forum 3rd May

Hello everyone, I've just signed up for the patients' forum at Bath on May 3rd, anyone else coming ? (I hope so or else I'm going to feel a little lonely!)...

Hello everyone, I've just signed up for the patients' forum at Bath on May 3rd, ...

crapaud

•8 years ago

14 Replies

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Looking for a really super medical ID bracelet?

Hi everyone, Just in case you've been searching the Internet for a really really nice medical ID bracelet and can't find one, have a look at www.lauren's...

Hi everyone, Just in case you've been searching the Internet for a really really...

Loubprv

Volunteer•8 years ago

11 Replies

Iron deficiency problems

Hi everybody, Can you help? I was diagnosed with PV in June last year. I am pleased to say that I have had really good care from my GP and the haematologist...

Hi everybody, Can you help? I was diagnosed with PV in June last year. I am pl...

Splb3317

•8 years ago

6 Replies

fatigue and headaches. Childhood ET related or not?

My daughter is almost 9yrs old, she was diagnosed at 4 with ET Jak+. She's had an okay few years since diagnoses, she suffers with migraine which can be...

My daughter is almost 9yrs old, she was diagnosed at 4 with ET Jak+. She's had ...

kentuckyrain

•8 years ago

6 Replies

Good Health & Easter love to you all 🐤🐥🐣

Hi just a quick note , Hope your all keeping well , & enjoying Easter , I've had a wonderful weekend my grandson had a Celebration of his Birth Party , he's...

Hi just a quick note , Hope your all keeping well , & enjoying Easter , I've had...

Phelpsy

•8 years ago

13 Replies

Hydroxycarbamide

Afternoon all, can anyone help. I have been on Hydroxy now for nearly three years and I feel that I have done really well on it considering that I normally...

Afternoon all, can anyone help. I have been on Hydroxy now for nearly three year...

Superwoman

•8 years ago

20 Replies

Since Iv had my tummy tuck ....feeling like a new make over !!

Well folks I'm on the brocolli and I'm on the mend !! Tummy tuck healing well I'm feeling it's a healing time !! Twinkly .... Where can I buy a new jacket...

Well folks I'm on the brocolli and I'm on the mend !! Tummy tuck healing well I'...

Twinkly

•8 years ago

7 Replies

Ruxolitinib approved for myelofibrosis in 2 categories

I have been to both hearings on this. The first was obvious it was going to be refused and a number of people on that team at the drug company lost their jobs...

I have been to both hearings on this. The first was obvious it was going to be r...

skodaguy

•8 years ago

13 Replies

Recently diagnosed

This is my first posting on this wonderful site. I visited my GP at the end of Oct and he happened to take my blood pressure. It has always been on the low...

This is my first posting on this wonderful site. I visited my GP at the end of ...

Fionnuaghla

•8 years ago

9 Replies

G&T anyone?

Just about to start taking Hydroxy and among my long list of concerns one in particular has leapt out at me as being of major significance :(. I didn't get a...

Just about to start taking Hydroxy and among my long list of concerns one in par...

DENICE66

•8 years ago

21 Replies

NICE Final guidance: Myelofibrosis - ruxolitinib (review of TA289) [831]

We are happy to share with everyone a very positive outcome from the NICE review of ruxolitinib. Particular thanks to everyone who responded to information...

We are happy to share with everyone a very positive outcome from the NICE review...

Mazcd

Partner•8 years ago

2 Replies

Scan

Went for my liver and spleen scan yesterday after my brain CT scan on Thursday last week. Scan showed liver and spleen enlarged which may be why I am having...

Went for my liver and spleen scan yesterday after my brain CT scan on Thursday l...

jillydabrat

•8 years ago

6 Replies

I'm home from my surgery ..it went very well ..I'm mending really well !

I had 5 holes into my chest and a new tummy button made !the surgeon said the hiatus hernia was 20 years old and needed to be removed ,,when I first grew it no...

I had 5 holes into my chest and a new tummy button made !the surgeon said the hi...

Twinkly

•8 years ago

23 Replies

Drug trial

Can anyone advise if they are taking the drug Panobinistat along with Ruxolitnib? I was diagnosed with MF 7 years ago and started on a trial 3 1/2 years ago....

Can anyone advise if they are taking the drug Panobinistat along with Ruxolitnib...

eire

•8 years ago

2 Replies

Had "The Chat"😁

Morning all. Had my "chat' yesterday with my haematologist and was absolutely gob-smacked... Nothing about "I don't know why that is" when I mentioned the...

Morning all. Had my "chat' yesterday with my haematologist and was absolutely go...

nodmeister

•8 years ago

7 Replies

My turn for hospital 🙄

So I've had black tarry stools for the past few days and gave thrown up about a litre of blood today and now I'm in hospital messaging you from my...

So I've had black tarry stools for the past few days and gave thrown up about a ...

Chelle_

•8 years ago

53 Replies

Newly diagnosed. ET jak2+

Hi all, I'm a 43 year old male, and only got my diagnosis on 21/3/2016. I must say that I went straight home and worried myself half to death by reading all...

Hi all, I'm a 43 year old male, and only got my diagnosis on 21/3/2016. I must s...

RobPV

•8 years ago

13 Replies

garden41BULBS

Thanks for all your comments. How do I know I'm drinking enough water, when taking hydoxy?

Thanks for all your comments. How do I know I'm drinking enough water, when ta...

garden41BULBS

•8 years ago

14 Replies

Itching

The major effect my MPN has on me beside fatigue is itching. I have itched since before first diagnosis in 1994. Have tried so many drugs . Numerous...

The major effect my MPN has on me beside fatigue is itching. I have itched since...

skodaguy

•8 years ago

17 Replies

Hydroxy on the rise

So I am now down being looked after the team in Bourenmouth Hospital....like first thing they did when they too over my care was to reduce my Hydroxy to 5 a...

So I am now down being looked after the team in Bourenmouth Hospital....like fir...

Chelle_

•8 years ago

15 Replies

eeesential thrombocythemia?

im 29 years old with routine blood count platlets was 560 follow up after 1month it was 650 then reached 800 after another 1 month i sought medical...

im 29 years old with routine blood count platlets was 560 follow up after 1m...

fady

•8 years ago

9 Replies

Tender Skin

I have ET for 5 years now, am 44 and on 3 x hydroxy mon-fri and 4 Sat Sun. Plus 75mg aspirin daily. The last few weeks my skin on the left hand side of my...

I have ET for 5 years now, am 44 and on 3 x hydroxy mon-fri and 4 Sat Sun. Plus ...

stevenjust

•8 years ago

4 Replies

Spleen pain, normal or not?

Good morning my MPN friends, I am feeling rather lousy this morning because I am suffering with wave after wave of pain from my spleen. This has been...

Good morning my MPN friends, I am feeling rather lousy this morning because I am...

jillydabrat

•8 years ago

5 Replies

Immune System and Hydroxy

I was diagnosed with ET ten years ago and my platelets are around 400. I found the MPN voice web site only 2 months ago after my Doctor recommended it. I...

I was diagnosed with ET ten years ago and my platelets are around 400. I found ...

G1DRA

•8 years ago

18 Replies

Dental hygiene

ET and taking Hydroxy. Understand one of side effects can be sores in mouth and throat? Was horrified to read that, but so far no problem. My...

ET and taking Hydroxy. Understand one of side effects can be sores in mouth ...

Kerri2

•8 years ago

4 Replies

Val

Just been diagnosed with essential thrombocythaemia, it's a lot to take in at first. Will I get a bad taste in my mouth from HYDROXCY? Will I still be...

Just been diagnosed with essential thrombocythaemia, it's a lot to take in at fi...

garden41BULBS

•8 years ago

9 Replies

Organ Donation?

I've been on the organ donation register for many years and my Mum raised a query about this a few days ago. Obviously our blood goes through every organ in...

I've been on the organ donation register for many years and my Mum raised a quer...

Kari1961

•8 years ago

28 Replies

Is it the PV ?

Hi can you help. I have PV with bloods fine but I am having days when I have a really bad headache with shivering, feeling cold and extreme fatigue. I thought...

Hi can you help. I have PV with bloods fine but I am having days when I have a r...

hollymae

•8 years ago

7 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for March 2016

Result

A day in Blackpool

Bath Patients' Forum 3rd May

Looking for a really super medical ID bracelet?

Iron deficiency problems

fatigue and headaches. Childhood ET related or not?

Good Health & Easter love to you all 🐤🐥🐣

Hydroxycarbamide

Since Iv had my tummy tuck ....feeling like a new make over !!

Ruxolitinib approved for myelofibrosis in 2 categories

Recently diagnosed

G&T anyone?

NICE Final guidance: Myelofibrosis - ruxolitinib (review of TA289) [831]

Scan

I'm home from my surgery ..it went very well ..I'm mending really well !

Drug trial

Had "The Chat"😁

My turn for hospital 🙄

Newly diagnosed. ET jak2+

garden41BULBS

Itching

Hydroxy on the rise

eeesential thrombocythemia?

Tender Skin

Spleen pain, normal or not?

Immune System and Hydroxy

Dental hygiene

Val

Organ Donation?

Is it the PV ?

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