Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for July 2018

So confused....

hii, went for annual health check up in april.my rbc,hb and hct levels were high and just had jak2 test which came out negative,now waiting for exon12 report...

hii, went for annual health check up in april.my rbc,hb and hct levels were hig...

Hidden

•6 years ago

14 Replies

Coping with fatigue dates

Leukaemia Care are running a series of days to help with coping with fatigue. The next one is in Cardiff on 15th September and then there is one in Sheffield...

Leukaemia Care are running a series of days to help with coping with fatigue. Th...

Pauline43

•6 years ago

11 Replies

A game changer for Aussies with MPN

Such amazing news to wake up to- I was actually in tears of joy! MPN Alliance Australia Facebook page has just shared this exciting news! We are so grateful to...

Such amazing news to wake up to- I was actually in tears of joy! MPN Alliance Au...

CommonDaisy

•6 years ago

6 Replies

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Just starting out on hydroxy

I’ve been diagnosed with ET, and have had the full barrage of tests from blood work through MRI. When the Canadian health care system kicks in it really kicks...

I’ve been diagnosed with ET, and have had the full barrage of tests from blood w...

WileyFrench

•6 years ago

22 Replies

Baffled

Unfortunately I have noticed more than once that people here post something that bothers them with their illness without giving full details i. e. counts,...

Unfortunately I have noticed more than once that people here post something that...

Kelly2

•6 years ago

16 Replies

Good news Ruxolitinib

Husband this time last year was crawling up the wall with itching all over pruritus terrible. Diagnosed eventually after 12months with JAX_2 mutation positive:...

Husband this time last year was crawling up the wall with itching all over pruri...

waddles22

•6 years ago

2 Replies

Another newby

Hi I’m reading about CLL but mine is CNL does anyone else have this diagnosis? Apparently I’m only one of five in the country with this very rare blood...

Hi I’m reading about CLL but mine is CNL does anyone else have this diagnosis? A...

Brendaf

•6 years ago

7 Replies

Dry Mouth

Hi all, I was diagnosed with ET over a year ago I am currently on Hydroxy And Aspirin , I drink about 3 litres of water a day but at night I wake up several...

Hi all, I was diagnosed with ET over a year ago I am currently on Hydroxy And As...

dgk70

•6 years ago

12 Replies

Belfast Forum In Sept.

I was booked to attend the cancelled forum and am now looking at travel options to the rearranged forum in Sept. Is there anyone else going from the West of...

I was booked to attend the cancelled forum and am now looking at travel options ...

nanmc

•6 years ago

2 Replies

Brand New To The Group

Hi Everyone, I am writing this after 12 weeks of continual blood tests, with each one coming back platelets high, I have been terrified, finally got to see...

Hi Everyone, I am writing this after 12 weeks of continual blood tests, with eac...

ansaseeker

•6 years ago

30 Replies

Et & raynauds phenomemon?

As anyone on this forum who as et jak2 postive been diagnosed with raynauds phenomenom?

As anyone on this forum who as et jak2 postive been diagnosed with raynauds phen...

Tico

•6 years ago

21 Replies

pippa

HI Pippa the reason why you have to attend the dentist at the hospital you attend as they have got your blood counts on hand and if there is any dental...

HI Pippa the reason why you have to attend the dentist at the hospital you atten...

Scottishterrier

•6 years ago

1 Reply

Dentist

Hi everyone , I recently moved and found a very nice dentist who is very helpful but she has told me she won't extract teeth because of my ET and would refer...

Hi everyone , I recently moved and found a very nice dentist who is very helpful...

Pippa63

•6 years ago

16 Replies

Diet for a patient of myelofabrosis

My mother in law is suffering with myelofabrosis and rapidly losing weight. Kindly guide me for good diet

My mother in law is suffering with myelofabrosis and rapidly losing weight. Kind...

nidaali

•6 years ago

3 Replies

Foot and calf cramps

Hi all, Thank you being here! I was diagnosed in February with ET/ Jak 2+ after having a mild heart attack in Nov 2017. I have been on Hydrea since February...

Hi all, Thank you being here! I was diagnosed in February with ET/ Jak 2+ after...

mbr8076

•6 years ago

18 Replies

Platelet rise and fall

Can anybody tell me if platelet levels can drop suddenly without medication? Mine were 591 and now 452? I am triple negative and thought I had ET, have only...

Can anybody tell me if platelet levels can drop suddenly without medication? Min...

Sarahjane100

•6 years ago

8 Replies

I have pv, could I have me/cfs too?

I have all the usual symptoms/issues with pv the main one being fatigue. But it really lays me out and I’ve been off sick since April. I was talking about my...

I have all the usual symptoms/issues with pv the main one being fatigue. But it ...

Emeraldpv

•6 years ago

9 Replies

Cool clothes - on sale!

Someone (forgive me, I can’t recall exactly who) posted recently about some great Voile shirts on sale at Laura Ashley. Thank you! I ordered a couple, they...

Someone (forgive me, I can’t recall exactly who) posted recently about some grea...

Ebot

•6 years ago

1 Reply

Seeing hemo today, still no word from France, Wife's dropping off a cliff since Monday.

For those who remember, my wife was partially diagnosed in France with an MPN after she ruptured her, what was enlarged spleen on may 1st. We finally got back...

For those who remember, my wife was partially diagnosed in France with an MPN af...

jointpain

•6 years ago

19 Replies

Other cancer before MPN

Just curious, how many of you have ever had some other form of cancer prior to being diagnosed with an MPN? BonnieJ

Just curious, how many of you have ever had some other form of cancer prior to b...

BonnieJ

•6 years ago

22 Replies

Dental cost

Hi all, Hope you all feeling ok and drinking loads of water in this heat 🤪. Does anyone know if we (MPN people) are getting NHS dental care for free. I have...

Hi all, Hope you all feeling ok and drinking loads of water in this heat 🤪. Doe...

Elab

•6 years ago

9 Replies

Dublin mpn meeting

Anyone going this saturday? We are planning to go but not sure it will benefit us. We have been to a few of them, we are the parents of a child with ET. Anyone...

Anyone going this saturday? We are planning to go but not sure it will benefit u...

kentuckyrain

•6 years ago

2 Replies

Droopy eyes

Hello I am wondering if anyone else experience droopy eyes? Thanks Anna

Hidden

•6 years ago

4 Replies

Heat

I am in Seville at the moment. Whatever pocessed me to book a sight seeing holiday in July?! The cafes and restaurants are brilliant though, under the canopy...

I am in Seville at the moment. Whatever pocessed me to book a sight seeing holi...

piggie50

•6 years ago

6 Replies

HEATWAVE ET

I was wondering how you lovely people were feeling in this heatwave, Whilst having ET. MY platets are down but the heat knocks me out, I...

I was wondering how you lovely people were feeling in this heatwave, Whilst ...

garden41BULBS

•6 years ago

27 Replies

Pegasys doses

I now have to administer 45mcg Pegasys each week and the dose needs to be taken from a phial containing 90mcg because it seems it is not possible t get 45mcg...

I now have to administer 45mcg Pegasys each week and the dose needs to be taken ...

JackLina

•6 years ago

18 Replies

Causes Of ET

Hi all. Juts out of curiosity i was wondering how many people in the forum who have ET have ever worked with Chemical Substances or been exposed to a high...

Hi all. Juts out of curiosity i was wondering how many people in the forum who h...

Mycancerconcern1

•6 years ago

33 Replies

Steroid injections

Hi all, Hope you are all enjoying this bout of glorious weather without getting overheated as we do. I have been having steroid injections in my shoulder...

Hi all, Hope you are all enjoying this bout of glorious weather without gettin...

fannetastic

•6 years ago

7 Replies

Guidelines Myeloproliferative Neoplasms and Articles of Interest

Hello I have listed some links for MPN articles of interest. Kind regards Anna The 2016 revision to the World Health Organization (WHO) classification of...

Hello I have listed some links for MPN articles of interest. Kind regards Anna T...

Hidden

•6 years ago

10 Replies

Biotin

Does anyone take biotin and are there any side effects ? Thankyou

Juliet46

•6 years ago

5 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for July 2018

So confused....

Coping with fatigue dates

A game changer for Aussies with MPN

Just starting out on hydroxy

Baffled

Good news Ruxolitinib

Another newby

Dry Mouth

Belfast Forum In Sept.

Brand New To The Group

Et & raynauds phenomemon?

pippa

Dentist

Diet for a patient of myelofabrosis

Foot and calf cramps

Platelet rise and fall

I have pv, could I have me/cfs too?

Cool clothes - on sale!

Seeing hemo today, still no word from France, Wife's dropping off a cliff since Monday.

Other cancer before MPN

Dental cost

Dublin mpn meeting

Droopy eyes

Heat

HEATWAVE ET

Pegasys doses

Causes Of ET

Steroid injections

Guidelines Myeloproliferative Neoplasms and Articles of Interest

Biotin

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