Posts - MPN Voice | HealthUnlocked

MPN Voice

10,519 members • 14,521 posts

All posts for January 2016

First post ....

Hi, so I am kind of new here... so here's a bit about me... I'm 23, and was diagnosed with ET a few years ago. My platelet level varied between 1100 and 1600...

Hi, so I am kind of new here... so here's a bit about me... I'm 23, and was diag...

Rochyne

•8 years ago

6 Replies

Will it be too late??

As I posted on my earlier posts, my oncologist that I was referred to said he suspected MPN. The few tests he's done came back negative. Do you absolutely need...

As I posted on my earlier posts, my oncologist that I was referred to said he su...

JenRen0909

•8 years ago

3 Replies

Here's what the BMB said

I met with my CLL and MPN experts this past week to learn the results of my bone marrow biopsy. My myelofibrosis is still there but not aggressive. Apparently...

I met with my CLL and MPN experts this past week to learn the results of my bone...

andrewschorr

•8 years ago

35 Replies

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Car of our future

Our daughter sent this saying " I've found the perfect chariot for you and Daddy"....... Cheek!

Our daughter sent this saying " I've found the perfect chariot for you and Dadd...

Loubprv

Volunteer•8 years ago

5 Replies

pegylated interferon?

Hello all, I have ET since I was 27 (41 now) and JAK2+. In last year I have been on HU, as well as my usual aspirin and warfarin (I am high risk; had liver...

Hello all, I have ET since I was 27 (41 now) and JAK2+. In last year I have bee...

Karol_Rua

•8 years ago

7 Replies

Hitting my head against a brick wall was painful but I broke through

Went to see my haemo, Dr Marianna David, at James Cook Hospital today. My appointment was brought forward by my specialist nurse because she couldn't answer...

Went to see my haemo, Dr Marianna David, at James Cook Hospital today. My appoi...

jillydabrat

•8 years ago

11 Replies

Ruxolitinib

Hi is anyone on ruxolitinib trial iam on hydrea but iam having problems with my feet like walking on stones i have been on hydrea 9 years consultant advise me...

Hi is anyone on ruxolitinib trial iam on hydrea but iam having problems with my ...

baggies

•8 years ago

6 Replies

Visit with a MacMillan Financed Fact Finder

Hi Guys and Girls, first of all, Maz, the MPD poster is now on the wall of James Cook Haematology Clinic so, hopefully others can find this site which has...

Hi Guys and Girls, first of all, Maz, the MPD poster is now on the wall of James...

jillydabrat

•8 years ago

21 Replies

PV C

I discovered I had PV C 27 months ago after a routine blood test. I was put on a low dose of HU which did not agree with me. I had every known side effect...

I discovered I had PV C 27 months ago after a routine blood test. I was put on...

xerxes

•8 years ago

6 Replies

Have PV and also APS/ALSO KNOWN AS: ANTIPHOSPHOLIPID Antibody Syndrome or Huges Syndrome Doed anyone out there that has both!

Hi I happened to be awake, due to a bad night with APS! I was Diagnosed with PV about 13 years ago! Six years I DX'd myself! I had constant hi WBC's, which I...

Hi I happened to be awake, due to a bad night with APS! I was Diagnosed with PV ...

Debbweb01

•8 years ago

5 Replies

MPN or not. So stressed! My blood counts have been all over the place for the last few years. I was finally referred to oncologist,

So I went to an oncologist close to home. Horrible bedside manner. Very quick visit. He told me I either have MPD or smokers something. I can't remember the...

So I went to an oncologist close to home. Horrible bedside manner. Very quick vi...

JenRen0909

•8 years ago

19 Replies

Thanks!!

Hi everyone! Just a note to thank everyone who took the time to respond to my buck up post! Wow! What a response! I completely agree, this is a great site for...

Hi everyone! Just a note to thank everyone who took the time to respond to my b...

Loubprv

Volunteer•8 years ago

8 Replies

Getting haematologists up to speed

Is there anything we can do as a group to ensure haematologists know more about MPNs? (I have had 4 different ones in 4 years and not found any of them...

Is there anything we can do as a group to ensure haematologists know more abou...

Mwalimu

•8 years ago

18 Replies

Introduction

Hello, I was diagnosed with essential thrombocythemia September of 2015. I've was having symptoms of itchy skin, fatigue (like I had been in battle all...

Hello, I was diagnosed with essential thrombocythemia September of 2015. I've w...

Cbreeze0182

•8 years ago

7 Replies

Diet therapy

When I started on hydroxycarbamide a few months ago I immediately had a problem with constipation. I tried a few over the counter remedies with mixed success....

When I started on hydroxycarbamide a few months ago I immediately had a problem ...

Shortcyclist

•8 years ago

3 Replies

Home Sweet Home

Finally home guys. Exhausted. Slept most today must need it. I'm very weak due to weight loss. My rock is looking after me well. Onwards and upwards !! Cheers...

Finally home guys. Exhausted. Slept most today must need it. I'm very weak due t...

JediReject

•8 years ago

50 Replies

Feel like I am hitting my head against a brick wall

Those who have read my posts will know i was diagnosed Jak2+ PV in early 2015. I had had symptoms for at least 12 years so when I was diagnosed I felt two...

Those who have read my posts will know i was diagnosed Jak2+ PV in early 2015. ...

jillydabrat

•8 years ago

9 Replies

Blood Cancer

Is ET, CARL positive consider blood cancer? I saw other patient from the other forum mentioned this is one type of blood cancer. But if i am not mistake, i...

Is ET, CARL positive consider blood cancer? I saw other patient from the other f...

tey_joanne_1984

•8 years ago

14 Replies

Thombocytopenia

I'm s bit anxious today. My haematologist is going to phone me about the bmb that I took last thursday. The thombocyte number is diving, in spite of 12,5 mg...

I'm s bit anxious today. My haematologist is going to phone me about the bmb tha...

Bittebitt

•8 years ago

5 Replies

Hydroxy

HI My husband started hydroxy in October he's been absolutely fine, but this last week he's been having upset stomach and stomachs. He's not sure if it's a...

HI My husband started hydroxy in October he's been absolutely fine, but this las...

tracey13

•8 years ago

9 Replies

CARL- ET (Need Your Help)

Hi, I would like to check with you that my hubby has CARL Gene mutation, ET (high platelet) and he needs to travel to China this weekend. It takes about 5-6...

Hi, I would like to check with you that my hubby has CARL Gene mutation, ET (hi...

tey_joanne_1984

•8 years ago

17 Replies

Come on everyone, buck up!

Hi everyone, I haven't been on health unlocked for ages because I seem to always see miserable posts! Yes, I know it's great to unload your miseries when...

Hi everyone, I haven't been on health unlocked for ages because I seem to always...

Loubprv

Volunteer•8 years ago

48 Replies

Is there an MPN Support Group in the Teesside or North East area?

We all know the difficulties finding information or sharing our thoughts, treatments, fears with in regards to MPN so I was wondering if there was a support...

We all know the difficulties finding information or sharing our thoughts, treatm...

jillydabrat

•8 years ago

23 Replies

Why does it say report any infection immediately to your GP when you have PV?

My lovely husband, for our 12th anniversary last Sunday, gave me his sore throat and swimming head. I woke up this morning with "Ut oh, my throat is hurting"...

My lovely husband, for our 12th anniversary last Sunday, gave me his sore throat...

jillydabrat

•8 years ago

5 Replies

Hello this is Angela, hope everyone is doing the best they can with their health.

I wonder if anyone who has Myelofibrosis without the JAK2 mutation tried the drug JAKAFI?

I wonder if anyone who has Myelofibrosis without the JAK2 mutation tried the dru...

IlGod67

•8 years ago

4 Replies

Night sweats and chills

Hi Guys, just wondered if anyone gets an increase in spells of night sweats from time to time. I had a "normal" session of them last night but the night...

Hi Guys, just wondered if anyone gets an increase in spells of night sweats from...

Aime

•8 years ago

30 Replies

Water in take !

Hi all , was just wondering , do we have to take water plain? i just cannot drink it neat ! ( haha ) would it still be benefictional having a dash of squash...

Hi all , was just wondering , do we have to take water plain? i just cannot drin...

Hidden

•8 years ago

19 Replies

Hydroxycarbamide v Pegasys Interferon

Hi I am due to start having treatment for PV, so far have just been having aspirin daily and venesections when needed. My haematological thinks it's time to...

Hi I am due to start having treatment for PV, so far have just been having aspir...

MicheleL

•8 years ago

8 Replies

I have learnt more from this site than from any of my clinical appointments

hi everyone, have just read pages and pages of topics on here and found them really interesting. My haematologist put me straight on to 1000mg of...

hi everyone, have just read pages and pages of topics on here and found them rea...

jillydabrat

•8 years ago

3 Replies

anyone for a cuppa?

Feeling like someone out on a limb with this ET thing - knowing no one who has the same thing.- anyone in the Thurrock/ Basildon area wanting a cuppa, chat,...

Feeling like someone out on a limb with this ET thing - knowing no one who has t...

Vennie

•8 years ago

2 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for January 2016

First post ....

Will it be too late??

Here's what the BMB said

Car of our future

pegylated interferon?

Hitting my head against a brick wall was painful but I broke through

Ruxolitinib

Visit with a MacMillan Financed Fact Finder

PV C

Have PV and also APS/ALSO KNOWN AS: ANTIPHOSPHOLIPID Antibody Syndrome or Huges Syndrome Doed anyone out there that has both!

MPN or not. So stressed! My blood counts have been all over the place for the last few years. I was finally referred to oncologist,

Thanks!!

Getting haematologists up to speed

Introduction

Diet therapy

Home Sweet Home

Feel like I am hitting my head against a brick wall

Blood Cancer

Thombocytopenia

Hydroxy

CARL- ET (Need Your Help)

Come on everyone, buck up!

Is there an MPN Support Group in the Teesside or North East area?

Why does it say report any infection immediately to your GP when you have PV?

Hello this is Angela, hope everyone is doing the best they can with their health.

Night sweats and chills

Water in take !

Hydroxycarbamide v Pegasys Interferon

I have learnt more from this site than from any of my clinical appointments

anyone for a cuppa?

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