Posts - MPN Voice | HealthUnlocked

MPN Voice

10,647 members • 14,730 posts

All posts for August 2019

Polycythemia Vera and ET ? I have both

Hi I was at the Christie hospital Wednesday to see my Haematolygist I’ve been diagnosed with ET since 2015 I thought after 12 months of tests and a...

Hi I was at the Christie hospital Wednesday to see my Haematolygist I’ve been di...

PhilReade

•5 years ago

13 Replies

Donating Body To Science

I am 77 years old and was diagnosed with MF 2 years ago. I am doing well and all of my blood chemistry looks good........so my oncologist told me today! I am...

I am 77 years old and was diagnosed with MF 2 years ago. I am doing well and all...

USSpurdy

•5 years ago

3 Replies

Ruxolitinib plus Pegasys for MF: is anyone in the UK using this combination ?

Hi. Having had a sarcomatoid SCC likely triggered by ruxolitinib, and a haematologist v reluctant to reduce the rux and add some pegasys to maintain the good...

Hi. Having had a sarcomatoid SCC likely triggered by ruxolitinib, and a haematol...

Rachelthepotter

•5 years ago

Be the first to reply

Want to take advantage of all our features? Just log in!

Recovering from surgery

Hi. I havent posted much but thought I would just share this for anyone else looking at having surgery. While going through tests for my JAK2+ MPN - high Plts...

Hi. I havent posted much but thought I would just share this for anyone else loo...

Devilgirl

•5 years ago

4 Replies

Just a wave hello!

Hi folks, I'm new here, having been diagnosed a week ago with ET. I've been reading your posts with much interest and feel a bit of a fraud being amongst you...

Hi folks, I'm new here, having been diagnosed a week ago with ET. I've been read...

Blaablaablaa

•5 years ago

59 Replies

need some help

Hello I'm sorry for my English skill which isn't very good. I took a blood test 10 days ago that indicated that I had a very high hemoglobin (19.3). My doctor...

Hello I'm sorry for my English skill which isn't very good. I took a blood test...

nobodth

•5 years ago

7 Replies

HEMATOLOGIC DISEASE AT OLDER AGE - BLOOD Journal

Post by MPN-MATE Admin » Fri Aug 09, 2019 3:05 am Hi guys... :D I found this quite an interesting listen concerning contraction of various Blood...

Post by MPN-MATE Admin » Fri Aug 09, 2019 3:05 am Hi guys... :D I found thi...

socrates_8

•5 years ago

4 Replies

Having a Parent, Sibling, or Child with Blood Cancer Increases One’s Own Risk

Hi guys... Data from largest population study to date help identify at-risk individuals, could inform screening initiatives Just Posted this article on...

Hi guys... Data from largest population study to date help identify at-risk indi...

socrates_8

•5 years ago

25 Replies

PV and heart problems

I have had PV for nearly 10 years now, and had a small heart attack in 2010 for which a stent was fitted. I have now developed atrial fibrillation and was...

I have had PV for nearly 10 years now, and had a small heart attack in 2010 for ...

lucieboo

•5 years ago

14 Replies

Two side effects from Pegasys

Now that I've been on the Pegasys (45 mcg/ml) for 5 weeks I'm fighting two major side effects - itching and anxiety/restlessness and I'm wondering what others...

Now that I've been on the Pegasys (45 mcg/ml) for 5 weeks I'm fighting two major...

pnArt

•5 years ago

26 Replies

Tiredness and essential thrombocythemia

Hi. Hoping for some advice and pointers. My mother has ET and is on chemo pills. All seems to be going well except for her being constantly tired. She is...

Hi. Hoping for some advice and pointers. My mother has ET and is on chemo pill...

Monkobutlers

•5 years ago

22 Replies

From Clopidogrel to Eliquis

Hi All MPN members, I hope you are all having the best run you can at the moment. Just wondering if anyone else is on Eliquis as a anti-clotting agent? I was...

Hi All MPN members, I hope you are all having the best run you can at the moment...

SilverET

•5 years ago

4 Replies

Enlarged red blood cells

Hi there. Just looking for a, wee bit of advice. I've ET and the MPL gene ( diagnosed after a stroke) My platelets have gone up slightly to 490 (though down...

Hi there. Just looking for a, wee bit of advice. I've ET and the MPL gene ( diag...

carlyjo

•5 years ago

13 Replies

Need advice

Hello to all my MPN's. Last year in September I had a heart attack and had angioplasty and had three stints put in. I was also put on medication for heart and...

Hello to all my MPN's. Last year in September I had a heart attack and had angi...

light

•5 years ago

18 Replies

All the Kind, Generous Folk of Our Wonderful Forum !

Kind Folk of Our Forum, Last night I replied to "Running on Empty" as have done many of you.. I have been hiding my situation which is Very Similar to her...

Kind Folk of Our Forum, Last night I replied to "Running on Empty" as have done ...

pontygirl

•5 years ago

37 Replies

HYdroxy

THank you all for your replies to my post. It's just worrying that my platelets rose from 537 to 587. I was taking two 500 mg daily yet now the dose has been...

THank you all for your replies to my post. It's just worrying that my platelets...

Garden987

•5 years ago

17 Replies

Thank you

Your supportive responses mean so much. Thank you, I will reply individually over the next few days. With love

Your supportive responses mean so much. Thank you, I will reply individually ove...

Fionnuaghla

•5 years ago

Be the first to reply

Retina

Haematologist has referred me to the eye clinic to look at my retinas. The referral came through the post and we didn’t discuss anything about it at our last...

Haematologist has referred me to the eye clinic to look at my retinas. The refer...

Charlieapple2018

•5 years ago

17 Replies

Any news on Tinkerbell?

Hi. I’m wondering if anyone has heard how Tinkerbell is? Would appreciate any update since Maz posted a question for her awhile back. Thanks. Katie

Hi. I’m wondering if anyone has heard how Tinkerbell is? Would appreciate any u...

katiewalsh

•5 years ago

3 Replies

Pegasys Interferon side affects

Hi Everyone, Happy Monday Anyone here experienced issues with the skin on your palms peeling on Pegasys Interferon? Currently on 45mcg weekly injections and...

Hi Everyone, Happy Monday Anyone here experienced issues with the skin on your p...

Crofty7

•5 years ago

2 Replies

Tinzaparin and flying

Hi just wondering if anyone has anyone has experienced any problems when taking tinzaparin for flying? I'm going on hols in a couple of weeks it's a Four and...

Hi just wondering if anyone has anyone has experienced any problems when taking ...

Camelian

•5 years ago

Be the first to reply

Running on empty

Over the three and a half years since my diagnosis of PV, I have found great advice, comfort and a sense of community here. Lately, I have not posted or read...

Over the three and a half years since my diagnosis of PV, I have found great adv...

Fionnuaghla

•5 years ago

32 Replies

Hydroxy

Had a bit of a shock last week. My haemo. Rang to say that my platelets had gone up again (588) and has increased my meds to 6 50mg every day except one day...

Had a bit of a shock last week. My haemo. Rang to say that my platelets had go...

Garden987

•5 years ago

9 Replies

CAN WE EAT TO STARVE CANCER? – William Li (Ted Talk)

Post by MPN-MATE Admin » Sat Aug 03, 2019 9:26 am Hey everyone... :-) Just had to Post this one, as it really does focus on the sort of things that I am...

Post by MPN-MATE Admin » Sat Aug 03, 2019 9:26 am Hey everyone... :-) Just ...

socrates_8

•5 years ago

8 Replies

Sun cream concern

Hi everyone, spent an evening with friends and cutting out how we got there, some one said sun creams can cause cancer! Well I am sure I am not the only one...

Hi everyone, spent an evening with friends and cutting out how we got there, s...

Bridie123

•5 years ago

20 Replies

Deepak chopra

Some of you may be interested in listening to deepak. chopra regard how our body works and the methods Drs. are. Using. They look upon us as machines when...

Some of you may be interested in listening to deepak. chopra regard how our body...

Garden987

•5 years ago

3 Replies

High platelet count? Anagrelide? Hydroxyurea?

Hi everyone! I’m new here and have a few questions. My husband is 26 years old and was recently diagnosed with primary thrombocytosis after a visit to the ER....

Hi everyone! I’m new here and have a few questions. My husband is 26 years old a...

tigerlove3

•5 years ago

27 Replies

Has anyone had to give up work due to having MPN ?

Hi everyone, I have ET, CALR until 6 weeks ago I was taking hydroxy. The fatigue and bone pain was horrendous . My heam has changed me to anagrelide, saying...

Hi everyone, I have ET, CALR until 6 weeks ago I was taking hydroxy. The fatigu...

M4rl3ym00

•5 years ago

26 Replies

First post...

Hi everyone x I acquired ET back in ‘15. Found this site last year and have found a lot of information about my condition. I have to say I seem to have been...

Hi everyone x I acquired ET back in ‘15. Found this site last year and have foun...

Atirax

•5 years ago

7 Replies

Lack of information given by nurses - bloodwise.org.uk

Failure of proper documentation given by NHS cancer nurses. As I recently received the mpn voice’s information on ET and was relieved to finally understand...

Failure of proper documentation given by NHS cancer nurses. As I recently recei...

ALynnJohnston

•5 years ago

16 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for August 2019

Polycythemia Vera and ET ? I have both

Donating Body To Science

Ruxolitinib plus Pegasys for MF: is anyone in the UK using this combination ?

Recovering from surgery

Just a wave hello!

need some help

HEMATOLOGIC DISEASE AT OLDER AGE - BLOOD Journal

Having a Parent, Sibling, or Child with Blood Cancer Increases One’s Own Risk

PV and heart problems

Two side effects from Pegasys

Tiredness and essential thrombocythemia

From Clopidogrel to Eliquis

Enlarged red blood cells

Need advice

All the Kind, Generous Folk of Our Wonderful Forum !

HYdroxy

Thank you

Retina

Any news on Tinkerbell?

Pegasys Interferon side affects

Tinzaparin and flying

Running on empty

Hydroxy

CAN WE EAT TO STARVE CANCER? – William Li (Ted Talk)

Sun cream concern

Deepak chopra

High platelet count? Anagrelide? Hydroxyurea?

Has anyone had to give up work due to having MPN ?

First post...

Lack of information given by nurses - bloodwise.org.uk

Search posts

Pinned Posts

Latest poll

What age were you when your MPN was diagnosed?

Topics

Archive