Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for May 2018

Benefit of PV?

Thinking about it, as we all get regular blood tests, so some other diseases/conditions may be detected early? I for one try not to let my PV hinder me in...

Thinking about it, as we all get regular blood tests, so some other diseases/con...

shiftzz

•6 years ago

5 Replies

Stem cell transplant outcomes

Hi Y'All, I have post-PV Myelofibrosis and am getting to the stage where I can see transfusions looming and therefore my best chance for stem cell transplant...

Hi Y'All, I have post-PV Myelofibrosis and am getting to the stage where I can s...

jane13

•6 years ago

28 Replies

Low HB

Anyone know if a HB of 112 could cause a tight chest? I’m in a&e and doctors are struggling to come up with an explanation.

Anyone know if a HB of 112 could cause a tight chest? I’m in a&e and doctors are...

EleanorPV

•6 years ago

18 Replies

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I'm new here. All red blood levels are elevated. I've one mutation for Hemochromatoses. JAK negative. Migraines with visual loss are worse.

Polycythemia with negative JAK. I have elevated hemoglobin , Hematocritc, & RBC. Looking for answers. Is it true that I can't donate blood due to 1 mutation...

Polycythemia with negative JAK. I have elevated hemoglobin , Hematocritc, & RBC...

Cjsassy

•6 years ago

10 Replies

CALR/JAK2 vaccine in sight?

I‘ve mentioned this research in my other thread already, but since I’m super excited about, it I want to give it some more visibility. It looks like some...

I‘ve mentioned this research in my other thread already, but since I’m super exc...

adiummy

•6 years ago

8 Replies

Breathlessness

I have read several posts about breathlessness with ET and am quite frustrated and would welcome comments from you lovely people. I had a chest infection for...

I have read several posts about breathlessness with ET and am quite frustrated a...

Garden987

•6 years ago

16 Replies

Colouring your hair whiles on hydro

Pls Can you let me know if you can colour your hair whiles on hydroxycarbamide? I am on 1 tablet a day. Manu thanks Ela

Pls Can you let me know if you can colour your hair whiles on hydroxycarbamide?...

Elab

•6 years ago

8 Replies

Ropeginterferon

Interesting Presentation by Dr Verstovsek on the 24 months results for Ropeginterferon versus HU. Results have been known for several months but this...

Interesting Presentation by Dr Verstovsek on the 24 months results for Ropeginte...

Paul123456

•6 years ago

13 Replies

Being sick immediately afternoon taking hydroxy

Hi all Wonder if anyone can advise please. I have been on hydroxy since 2012. I am lucky I only take 500mg twice a week. Never had any problems. However...

Hi all Wonder if anyone can advise please. I have been on hydroxy since 2012. I ...

Hidden

•6 years ago

8 Replies

Issues with the aspirin

Hi there, I haven't posted in a long time. I was diagnosed with ET about 5 and a half years ago JAK2 positive. I've been taking aspirin since, initially...

Hi there, I haven't posted in a long time. I was diagnosed with ET about 5 and ...

LRH77

•6 years ago

4 Replies

Hydrea and a certain smell

Hi Everyone. I have held off writing his post because it sounds so weird but it's time I said something so here goes. I'm 60 have ET and am Jak 2+. I have been...

Hi Everyone. I have held off writing his post because it sounds so weird but it'...

Kinsale

•6 years ago

53 Replies

I'm new here, Interferon and ear ringing (ototoxicity)?

Hi, I'm a 32yo ET patient from Germany and found this group a couple of days ago. I was diagnosed five years ago with 1,9 mil platelets which are controlled by...

Hi, I'm a 32yo ET patient from Germany and found this group a couple of days ago...

adiummy

•6 years ago

9 Replies

Hydroxyurea and fertility

Hi every one , Im fady 31 years old male diagnosed with ploycythemia Vera since one year , I'm on hydroxyurea 500 mg daily . My question about the effect...

Hi every one , Im fady 31 years old male diagnosed with ploycythemia Vera si...

Fadood

•6 years ago

6 Replies

High platelets and long flights

Hello! I have only been back on Hydroxy and aspirin for a couple of weeks and thankfully my platelet count has already dropped from 1200 to about 900! In 2...

Hello! I have only been back on Hydroxy and aspirin for a couple of weeks and th...

CommonDaisy

•6 years ago

14 Replies

Random pains

Hi, I was diagnosed with Jak2- 3 yrs ago and Karl+ 18 mths ago. I have what I call ' my pain of the day' it varies and can be anywhere, head, shoulder, knees...

Hi, I was diagnosed with Jak2- 3 yrs ago and Karl+ 18 mths ago. I have what I c...

Lynne-G

•6 years ago

1 Reply

Hydroxycarbamide (esp 70+, diabetics)

Hello Just looking for some feedback. My mum is 70, a type 2 diabetic and of Indian heritage. We are UK based. She has just been diagnosed with having...

Hello Just looking for some feedback. My mum is 70, a type 2 diabetic and of ...

DS5AS

•6 years ago

1 Reply

Just starting on the med...

Hi all..just finished my first week on the hydrea pill. (Sp) go tomorrow to find out if it is controlling the bone marrow so it quits making so much blood. I...

Hi all..just finished my first week on the hydrea pill. (Sp) go tomorrow to find...

Sheryljean

•6 years ago

11 Replies

FOREARM RED BLOTCHES

I have ET and JAK2+ and been on the dreaded hydrea for about six years. In the last year or so I have noticed small red blotches appearing on my forearms after...

I have ET and JAK2+ and been on the dreaded hydrea for about six years. In the l...

ashby7763

•6 years ago

3 Replies

Worth reading, covers ET, PV and MF

https://www.pennmedicine.org/-/media/event%20media/2018/cancer/01%20january/hem%20onc/daria_babushok_update_in_myeloproliferative.ashx?la=en

https://www.pennmedicine.org/-/media/event%20media/2018/cancer/01%20january/hem%...

Paul123456

•6 years ago

9 Replies

Feeling Rubbish

Hi sorry to moan, diagnosed with PV JAK2 positive last year and have now been on interferon Alpha Roferon for 5mths. I started out on 3x weekly injections but...

Hi sorry to moan, diagnosed with PV JAK2 positive last year and have now been on...

Poppy112

•6 years ago

27 Replies

Ketogenic diet

Has anyone tried the Keto diet and any other diet for MF to boast energy and general wellbeing?

Has anyone tried the Keto diet and any other diet for MF to boast energy and gen...

GuyMorgan01

•6 years ago

5 Replies

Yet another one!

Nice to know there are a few of us heading down the same road. As New Zealand is so small not many other people with MF and only met one other who passed away...

Nice to know there are a few of us heading down the same road. As New Zealand is...

GuyMorgan01

•6 years ago

19 Replies

MPN Chronicles - New Podcast Feature on PV Reporter!

Hi Guys - I wanted to share my story with everyone, as I am sure many of you can relate to the early struggle of getting an MPN diagnosis. I am going to share...

Hi Guys - I wanted to share my story with everyone, as I am sure many of you can...

PVReporter

•6 years ago

2 Replies

Update

Hi All, had another haematology visit this week, three months have flown by. At my last visit my haemoglobin level was 88g/L and now it is 79. A quicker drop...

Hi All, had another haematology visit this week, three months have flown by. At...

Simon96

•6 years ago

10 Replies

Biopsy aftercare

Hi Everyone, newly diagnosed with ET, platelets are settling around 595K but my white count is also high and ferritin is low so the consultant suggested a bmb...

Hi Everyone, newly diagnosed with ET, platelets are settling around 595K but my ...

BeckaBoo72

•6 years ago

2 Replies

CALR Type 1 & 2 Have Contrasting OS Outcomes

Hey everyone, As an update, since my last post (ASXL1 Mutation Detected), I recently came across some very useful articles concerning the CALR mutations &...

Hey everyone, As an update, since my last post (ASXL1 Mutation Detected), I rece...

socrates_8

•6 years ago

21 Replies

When to take extra Hydroxy dose

Hi good people. I need to take an extra dose of Hydroxy each week. So one day a week I should take 1000mg instead of 500mg. From experience is it best to split...

Hi good people. I need to take an extra dose of Hydroxy each week. So one day a ...

Ebot

•6 years ago

23 Replies

Need a Hematologist on Cape Cod or Boston.

Hi all. Please have a great day. I am moving to Cape Cod in two weeks. I will be spending 6 months of the year there. Can someone recommend a Hematologist for...

Hi all. Please have a great day. I am moving to Cape Cod in two weeks. I will be...

Kinsalelady

•6 years ago

2 Replies

Pain beneath lower lhs ribs - infarcts?

Hi, it’s me again with another spleen-related question. Can anyone tell me what spleen infarct pain feels like?

Hi, it’s me again with another spleen-related question. Can anyone tell me what ...

LucyGeering

•6 years ago

19 Replies

I would like some advise please

Hello, I have been to see my doctor today. He wants me to think about changing my medication from Hydroxyurea to Anagrelide. He asked me to come on the group...

Hello, I have been to see my doctor today. He wants me to think about changing m...

wendycu

•6 years ago

11 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for May 2018

Benefit of PV?

Stem cell transplant outcomes

Low HB

I'm new here. All red blood levels are elevated. I've one mutation for Hemochromatoses. JAK negative. Migraines with visual loss are worse.

CALR/JAK2 vaccine in sight?

Breathlessness

Colouring your hair whiles on hydro

Ropeginterferon

Being sick immediately afternoon taking hydroxy

Issues with the aspirin

Hydrea and a certain smell

I'm new here, Interferon and ear ringing (ototoxicity)?

Hydroxyurea and fertility

High platelets and long flights

Random pains

Hydroxycarbamide (esp 70+, diabetics)

Just starting on the med...

FOREARM RED BLOTCHES

Worth reading, covers ET, PV and MF

Feeling Rubbish

Ketogenic diet

Yet another one!

MPN Chronicles - New Podcast Feature on PV Reporter!

Update

Biopsy aftercare

CALR Type 1 & 2 Have Contrasting OS Outcomes

When to take extra Hydroxy dose

Need a Hematologist on Cape Cod or Boston.

Pain beneath lower lhs ribs - infarcts?

I would like some advise please

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