Posts - MPN Voice | HealthUnlocked

MPN Voice

11,264 members•15,746 posts

All posts for June 2018

Well that was a surprise - hydration

Had cardiac review a week past Friday, and as I had haematology the following Wednesday asked for the blood test for that be done at same time. Cardiac review...

Had cardiac review a week past Friday, and as I had haematology the following We...

lizk1993

•7 years ago

5 Replies

ET patient with new symptoms (Tightness in chest, shortness of breath)

Hello Everyone, I was diagnosed almost one year before with ET.Currently on plavix only.Recently I developed scarry symptoms. At first they come n go once or...

Hello Everyone, I was diagnosed almost one year before with ET.Currently on pla...

mustabshra

•7 years ago

19 Replies

High platelets

Hi friends. I am wondering if anyone has been in a similar position to myself I am 75. Diabetic. ET calr for several years , have been on aspirin and...

Hi friends. I am wondering if anyone has been in a similar position to myself I ...

Stevesmum42

•7 years ago

2 Replies

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Anybody pregnant and on Interferon

Hello, I am Valentina, diagnosed ET, currently 10 week pregnant and just started Iterferon alpha 2b (Intron A). I am a bit scared for my baby and the side...

Hello, I am Valentina, diagnosed ET, currently 10 week pregnant and just started...

Rani36

•7 years ago

3 Replies

Pegasys ( peginterferon alfa -2a)

Hi all, Hope you are coping well in this hot hot weather. ......and drink loads of water .....and gin and tonic 😂😜. I need your help pls. I am ET Jak+...

Hi all, Hope you are coping well in this hot hot weather. ......and drink loads ...

Elab

•7 years ago

6 Replies

Would you continue with this doctor?

Naming no names or surgery. If you have followed my wife's story so far, she had a grade 5 spleen rupture in France on May 1st and after the removal of said...

Naming no names or surgery. If you have followed my wife's story so far, she had...

jointpain

•7 years ago

17 Replies

Anyone else turned down Hydroxycarbamide?

Hi Again, I've now hit 60, and have decided to turn down the Hydroxy recommendation - don't want to take a a chemo drug. Will continue aspirin and 6 monthly...

Hi Again, I've now hit 60, and have decided to turn down the Hydroxy recommendat...

rdevans

•7 years ago

37 Replies

Painful teeth

Hi I was diagnosed with ET Jak2+ last October. I started Hydroxycarbamide in December 500mg weekdays and 1000mg sat and sun. I also take aspirin and have been...

Hi I was diagnosed with ET Jak2+ last October. I started Hydroxycarbamide in De...

samwoolrich

•7 years ago

6 Replies

ET not cancer, and dental issues

Hi everyone! I am in the USA. I was diagnosed with JAK2+ ET a little over 2 years ago. I saw my new oncologist today and when I mentioned the word “cancer” he...

Hi everyone! I am in the USA. I was diagnosed with JAK2+ ET a little over 2 yea...

BonnieJ

•7 years ago

32 Replies

Feeling sad, upset, angry and let down after my BMB in NZ

I'm feeling really sad, upset, angry and let down, I've just sent a complaint to the District Health Board here in Wellington. I got to my appointment this...

I'm feeling really sad, upset, angry and let down, I've just sent a complaint to...

Wentry

•7 years ago

28 Replies

Iron infusions

Morning. Can anyone give me info on having an iron infusion. How long does it take and is there any side effects?

Morning. Can anyone give me info on having an iron infusion. How long does it ta...

Joall

•7 years ago

14 Replies

Rising platelet count and anxious

Hi I have been following this forum since I was diagnosed with ET calr in 2015 at the age of 41 but this is my first post, so here goes! At diagnosis my...

Hi I have been following this forum since I was diagnosed with ET calr in 2015 a...

Whacks

•7 years ago

16 Replies

Travel Insurance with a SCT pending for MF

Morning, I was amazed to find that the 3 insurance companies I contacted did not care that I have a SCT coming up in August. One didn't even want to be...

Morning, I was amazed to find that the 3 insurance companies I contacted did not...

Hidden

•7 years ago

8 Replies

Encouraging trial results re MF

Trial result of Peginterferon combined with Ruxo. Worked especially well for early stage MF patients although side effects/20% discontinuation rate a concern....

Trial result of Peginterferon combined with Ruxo. Worked especially well for ear...

Paul123456

•7 years ago

9 Replies

VonWillebrand and Pegasys Interferon

Hi Everyone, I recently saw a specialist in NYC. At the appointment they said I should remain on my baby aspirin a day and wouldn't need treatment until I was...

Hi Everyone, I recently saw a specialist in NYC. At the appointment they said I ...

2017S

•7 years ago

7 Replies

Anyone else in "limbo land" for years?

Hi everyone, I've been reading on and off for a number of years and not really knowing if I belong here. My platelets started to go up about 5 years ago,...

Hi everyone, I've been reading on and off for a number of years and not really k...

fernie

•7 years ago

4 Replies

Ruxolitinib

Had my first haemo appointment today since starting Ruxolitinib 2 1/2 weeks ago. My bloods were all good and my platelets have moved down (albeit slowly) to...

Had my first haemo appointment today since starting Ruxolitinib 2 1/2 weeks ago....

Graham7694

•7 years ago

9 Replies

Raynauds and high platelets

Hello - I have ET and am on aspirin. I have recently developed Raynauds syndrome (my fingers become very painful and turn white, red or blue). Although it is...

Hello - I have ET and am on aspirin. I have recently developed Raynauds syndrome...

Stanley28

•7 years ago

8 Replies

Encouraging video re slowing MF

Concludes by saying no obvious cure at the moment but the tools are in sight so that 95% of MF patients can lead normal life with normal life span. Expecting...

Concludes by saying no obvious cure at the moment but the tools are in sight so ...

Paul123456

•7 years ago

7 Replies

MPN horizons conference

Thought I would share a huge exciting resource I came across. Special interest in past 'MPN horizons conference' web link below....

Thought I would share a huge exciting resource I came across. Special interest i...

EleanorPV

•7 years ago

8 Replies

Newly Diagnosed and Clueless

Hi I am a 59 yr old woman newly diagnosed with PV and my doctor does not think I will have much problems with this disease as I do not have many symptoms and...

Hi I am a 59 yr old woman newly diagnosed with PV and my doctor does not think I...

Jlswetlick

•7 years ago

12 Replies

New to the site and diagnosed with PV in February 2018

Hi, I am a 58 year old woman whi was fairly fit and healthy and active with walking dog and previously going to the gym, I had a few TIA's that were thought...

Hi, I am a 58 year old woman whi was fairly fit and healthy and active with walk...

Hollyhedge

•7 years ago

18 Replies

CBD and platelets

Does taking CBD oil liver my platelets

Bren1018

•7 years ago

Be the first to reply

Vit D

Maybe breast cancer, too: https://www.medicalnewstoday.com/articles/322177.php?utm_source=

Maybe breast cancer, too: https://www.medicalnewstoday.com/articles/322177.php?u...

Kelly2

•7 years ago

Be the first to reply

Aerobic Exercise and ET

I am ET JAK2+, 62 years old female diagnosed in November 2016. I have lost 3st in weight and still want to lose at least one more stone from my waistline. I...

I am ET JAK2+, 62 years old female diagnosed in November 2016. I have lost 3st...

Searcher56

•7 years ago

5 Replies

CRISPR -- interesting!)

https://www.ncbi.nlm.nih.gov/m/pubmed/29364275/

Gesha

•7 years ago

3 Replies

CBD oil and Platelets

Does CBD oil reduce platelets. Been taking this for 1 month. My platelets went from 224 to 15 in 6 weeks.

Does CBD oil reduce platelets. Been taking this for 1 month. My platelets went ...

Bren1018

•7 years ago

51 Replies

ask mpn Specialist

Please do not be worried about seeing the MPN Specialist they are highly trained very knowledgeable you will be able to ask them anything and they will have an...

Please do not be worried about seeing the MPN Specialist they are highly trained...

Scottishterrier

•7 years ago

1 Reply

MPN Specialist

I have an appointment with an MPN specialist on Thursday rather than my usual haematologist I am a bit stumped on what I should be asking him. I haven’t had a...

I have an appointment with an MPN specialist on Thursday rather than my usual ha...

Juliet46

•7 years ago

8 Replies

New MPN friends

Pam and I met up with new MPNers for coffee in Newcastle today. Really enjoyed our chat ladies! Here we are, Katy, Pat, Pam and moi!

Pam and I met up with new MPNers for coffee in Newcastle today. Really enjoyed ...

Sand-Dancer

•7 years ago

30 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for June 2018

Well that was a surprise - hydration

ET patient with new symptoms (Tightness in chest, shortness of breath)

High platelets

Anybody pregnant and on Interferon

Pegasys ( peginterferon alfa -2a)

Would you continue with this doctor?

Anyone else turned down Hydroxycarbamide?

Painful teeth

ET not cancer, and dental issues

Feeling sad, upset, angry and let down after my BMB in NZ

Iron infusions

Rising platelet count and anxious

Travel Insurance with a SCT pending for MF

Encouraging trial results re MF

VonWillebrand and Pegasys Interferon

Anyone else in "limbo land" for years?

Ruxolitinib

Raynauds and high platelets

Encouraging video re slowing MF

MPN horizons conference

Newly Diagnosed and Clueless

New to the site and diagnosed with PV in February 2018

CBD and platelets

Vit D

Aerobic Exercise and ET

CRISPR -- interesting!)

CBD oil and Platelets

ask mpn Specialist

MPN Specialist

New MPN friends

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