Posts - MPN Voice | HealthUnlocked

MPN Voice

10,647 members • 14,730 posts

All posts for January 2016

Polythemia vera

Hello, I'm 48 and recently been diagnosed with PV. I've been taking low dose aspirin and 1000mg of hydroxycarbamide daily. The side effects from the medication...

Hello, I'm 48 and recently been diagnosed with PV. I've been taking low dose asp...

Tracey123

•9 years ago

8 Replies

I'm a Nana our wonderful grandson has arrived ,💙🙏🍼

Sorry I thought this had been posted Last week X It's so exciting I'm so sorry I should of checked it had gone , He was 7:11oz Carter James , X Mammy &...

Sorry I thought this had been posted Last week X It's so exciting I'm so sorry...

Phelpsy

•9 years ago

18 Replies

Quiet Christmas with my Beloved Wife

We enjoyed a very peaceful Christmas Day gazing into each others eyes. . . !!! Managed to get 2 festering hats. . . So our next celebration will be wild by...

We enjoyed a very peaceful Christmas Day gazing into each others eyes. . . !!! ...

JediReject

•9 years ago

18 Replies

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On The Mend

Hi Folks, another restless night. Just to let you all know we finally seem to be getting on top of the GVHD via attacks on a number of fronts mainly using...

Hi Folks, another restless night. Just to let you all know we finally seem to be...

JediReject

•9 years ago

41 Replies

New Discovery for MPN's

TARGETING JAK2: A NEW APPROACH BRINGS RENEWED HOPE FOR CERTAIN BLOOD CANCERS Memorial Sloan Kettering researchers are reporting what could be a significant...

TARGETING JAK2: A NEW APPROACH BRINGS RENEWED HOPE FOR CERTAIN BLOOD CANCERS Mem...

light

•9 years ago

5 Replies

Lack of libido

This is going to sound very personal but does anybody else suffer with lack of libido or even pain during lovemaking? I almost cried with relief when I...

This is going to sound very personal but does anybody else suffer with lack of l...

jillydabrat

•9 years ago

15 Replies

MPN Voice Nottingham Support Group - dates for 2016 meetings

The meetings are held on the 3rd Wednesday of every month, except December, the first meeting for 2016 will take place on Wednesday 20th January, 6 pm - 8 pm....

The meetings are held on the 3rd Wednesday of every month, except December, the ...

Mazcd

Partner•9 years ago

5 Replies

Really pleased

Hi folks, Just thought I would share my good news, today I was at my usual four month appointment at Haematology for my ET and all my levels are all normal,...

Hi folks, Just thought I would share my good news, today I was at my usual four ...

Superwoman

•9 years ago

17 Replies

ET

I'm Vietnamese. I'm 28 years old. I was diagnosed ET 1 year ago. I'm married and become a pregnacy but I had still birth at 17 weeks gestation. AT That...

I'm Vietnamese. I'm 28 years old. I was diagnosed ET 1 year ago. I'm married and...

hongnhi

•9 years ago

6 Replies

Does anybody else feel like your clinicians think you are talking out of your backside when you tell them how ill you feel?

Hi everyone, I am Jill and was diagnosed with PV after going to my GP for 11 years with symptoms of 3 x dvt, vasculitis, overwhelming tiredness, numbness if my...

Hi everyone, I am Jill and was diagnosed with PV after going to my GP for 11 yea...

jillydabrat

•9 years ago

40 Replies

Smile on a grey Monday

Here's the world we created !! Funny isn't it tho ??? Twinkly. Xx

Twinkly

•9 years ago

6 Replies

Rising platelets

Hi so had my first 3 venesections and my haematocrit fell from 0.51 to 0.48 and haemoglobin basically down to acceptable range but platelet count rose from...

Hi so had my first 3 venesections and my haematocrit fell from 0.51 to 0.48 and ...

Chris1919

•9 years ago

6 Replies

The doctor says I'm normal..!

My wife probably wouldn't agree but my haematologist tells me I'm normal..!! My platelets were 348 at today's consultation - back in normal range for the first...

My wife probably wouldn't agree but my haematologist tells me I'm normal..!! My ...

AndyT

•9 years ago

13 Replies

Thumping noise in ear

Anyone notice a thumping noise in there ears, kinda like your heartbeat. It comes and it goes. Have only had this since I have been on HU. Weird to say the...

Anyone notice a thumping noise in there ears, kinda like your heartbeat. It com...

mickey64

•9 years ago

6 Replies

Isn't it frosty today ,,take care now not to slip ! Be sensible wear warm sox and gloves and a scarf ,it's our extremities that suffer ..

Our poor circulation with this blood disorder makes feet and hands suffer ..particularly cracking and numbness of fingers and toes ,don't you agree? Use plenty...

Our poor circulation with this blood disorder makes feet and hands suffer ..part...

Twinkly

•9 years ago

7 Replies

work and ET

Hi all, I wonder could I ask you to give me an insight into how you manage to work with the much-discussed fatigue that comes with ET and as a side effect of...

Hi all, I wonder could I ask you to give me an insight into how you manage to w...

Karol_Rua

•9 years ago

18 Replies

BMB is next for me!

Getting bone marrow biopsy next week (have had a few in the past) to see what's up with my platelets, genes, and white blood count. Could mean a switch from...

Getting bone marrow biopsy next week (have had a few in the past) to see what's ...

andrewschorr

•9 years ago

25 Replies

David Wallace, Our PV Reporter

I am very fond of David Wallace, US patient, and founder of the PV Reporter. Here's an interview with him where he describes his efforts as a patient-advocate....

I am very fond of David Wallace, US patient, and founder of the PV Reporter. Her...

andrewschorr

•9 years ago

4 Replies

High blood pressure

Hi Maz, I have posted this question to you on the public forum as I am wondering if other people have experienced high blood pressure issues appearing after...

Hi Maz, I have posted this question to you on the public forum as I am wondering...

Aime

•9 years ago

7 Replies

Pain under ribs

I posted a while ago about pain under my left ribs. I've since had a scan that says everything is normal, liver, kidneys etc, also that my my spleen IS NOT...

I posted a while ago about pain under my left ribs. I've since had a scan that s...

lizzziep

•9 years ago

11 Replies

Pomegranate Juice

Hi All, hope you all had a great Christmas and a Happy New Year to us all! I was just wondering if anyone had tried Pomegranate juice . I have been reading...

Hi All, hope you all had a great Christmas and a Happy New Year to us all! I was...

jodary

•9 years ago

17 Replies

Factor 5 leiden

Can anyone recommend travel insurance I've had 3 blood clots over the past 28 years I've had a quote of £339 I'm on rivoxaban for life now so I'm permanently...

Can anyone recommend travel insurance I've had 3 blood clots over the past 28 ye...

tracey13

•9 years ago

9 Replies

RBC

Hello does anyone's RBC increase with ET or being on HU?

Anne4boys

•9 years ago

5 Replies

Hi everyone

Hi, I'm Christine, and this is my first time posting on the forum. I was diagnosed with MF last autumn after having PRV for the past 16 years. I've been quite...

Hi, I'm Christine, and this is my first time posting on the forum. I was diagnos...

Hidden

•9 years ago

12 Replies

PV venesection cycles, how often& how much?

Hi all, im interested to hear from other PV ladies and gents about the frequency of venesections. In particular those who are only on aspirin currently. Mine...

Hi all, im interested to hear from other PV ladies and gents about the frequency...

johoho

•9 years ago

8 Replies

For JediReject

Lesley x

Sand-Dancer

•9 years ago

1 Reply

Confused about platelet counts

I'm curious as to how platelet levels are counted. Mine is 1400. and my haematologist said that is rather high. Yet some people say their platelets are close...

I'm curious as to how platelet levels are counted. Mine is 1400. and my haematol...

lynnieb

•9 years ago

4 Replies

What does an enlarged spleen feel like? Are there any telltale feelings to it besides not feeling hungry?

I'm a 34 year old male, will be visiting my GP soon however I have a strange feeling in my upper left side and possibly some visible swelling at my left...

I'm a 34 year old male, will be visiting my GP soon however I have a strange fee...

10Tigger10

•9 years ago

6 Replies

Saturday Night Takeaway

Hey Frinds , Thanks for your encouraging responses, I draw strength reading them all. . And then cry !! Thought I'd share the fact that as I'm struggling to...

Hey Frinds , Thanks for your encouraging responses, I draw strength reading them...

JediReject

•9 years ago

23 Replies

Mylofibrosis diagnosed after an attack of shingles

Hi dear friends would be interested to know if anyone has had shingles with the mylofibrosis my husband had head shingles in November 2012 and further blood...

Hi dear friends would be interested to know if anyone has had shingles with the...

Kisses

•9 years ago

3 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for January 2016

Polythemia vera

I'm a Nana our wonderful grandson has arrived ,💙🙏🍼

Quiet Christmas with my Beloved Wife

On The Mend

New Discovery for MPN's

Lack of libido

MPN Voice Nottingham Support Group - dates for 2016 meetings

Really pleased

ET

Does anybody else feel like your clinicians think you are talking out of your backside when you tell them how ill you feel?

Smile on a grey Monday

Rising platelets

The doctor says I'm normal..!

Thumping noise in ear

Isn't it frosty today ,,take care now not to slip ! Be sensible wear warm sox and gloves and a scarf ,it's our extremities that suffer ..

work and ET

BMB is next for me!

David Wallace, Our PV Reporter

High blood pressure

Pain under ribs

Pomegranate Juice

Factor 5 leiden

RBC

Hi everyone

PV venesection cycles, how often& how much?

For JediReject

Confused about platelet counts

What does an enlarged spleen feel like? Are there any telltale feelings to it besides not feeling hungry?

Saturday Night Takeaway

Mylofibrosis diagnosed after an attack of shingles

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