Posts - MPN Voice | HealthUnlocked

MPN Voice

10,647 members • 14,730 posts

All posts for March 2020

can corona symptoms be different if on medication?

Hi can you have different symptoms if on medication for ET? I am on interferon and have had a dry throat for the last couple of days but no cough? I am also...

Hi can you have different symptoms if on medication for ET? I am on interferon a...

Gunner73

•4 years ago

6 Replies

Keeping safe

Hi Hope all are well I’m obviously self isolating My husband works part time at a school and we try very hard to be careful with hygiene but find its...

Hi Hope all are well I’m obviously self isolating My husband works part tim...

Pippa63

•4 years ago

5 Replies

Et and mean survival

Sorry if I have asked this before i cant remember. My haem told me near normal life expectancy but I have read 15 year median survival can anyone shed any...

Sorry if I have asked this before i cant remember. My haem told me near normal l...

Irishgal12

•4 years ago

15 Replies

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No face to face haematology hospital appointments for at least 4 months

Hi, Following my haematology appointment at the hospital last week, I was advised that all new appointments would be carried out over the phone and that I...

Hi, Following my haematology appointment at the hospital last week, I was advise...

Judi150

•4 years ago

6 Replies

Will I be getting a letter?

I’m still a bit confused from the PMs broadcast. Will I be getting a call or letter from the NHS? I have ET, platelets around 1450. Not on treatment. I’m 48...

I’m still a bit confused from the PMs broadcast. Will I be getting a call or let...

stevenjust

•4 years ago

52 Replies

RN recently diagnosed with ET- worry about COVID19

Hello everyone, I just wanted to ask for other people’s opinions. I am a staff nurse working at a bedside in acute care setting. I was just recently diagnosed...

Hello everyone, I just wanted to ask for other people’s opinions. I am a staff ...

Karolinka1

•4 years ago

11 Replies

CORONA VIRUS

Husband is JAX-2-V617 mutation positive MPN consistent with Polycythaemia Vera Ruxolitinib 15grms twice a day. Is he classed in the current situation as...

Husband is JAX-2-V617 mutation positive MPN consistent with Polycythaemia Vera R...

waddles22

•4 years ago

1 Reply

Nothing like walking the dog to gain perspective

Had to stay in lead as near a rail line but peaceful walk. No other humans in sight. Nature is so wonderful.

Had to stay in lead as near a rail line but peaceful walk. No other humans in si...

Jlah

•4 years ago

6 Replies

NHS will be writing to all vulnerable people advising them to self isolate for 12 weeks

On the 9.30 a.m. BBC news this morning, it was reported that NHS England will be writing to all vulnerable people advising them to self isolate for 12 weeks. I...

On the 9.30 a.m. BBC news this morning, it was reported that NHS England will be...

jillydabrat

•4 years ago

39 Replies

Dilemma

I have ET as does my mum who is 75. Can I go and stay with her for the next 12 weeks or do I have to live on my own. V worried as 150 miles from my family and...

I have ET as does my mum who is 75. Can I go and stay with her for the next 12 w...

Jlah

•4 years ago

5 Replies

Happy Mother's day and isolation ideas

Happy Mother's Day for all those Mums and Grandmas out there. I. Hope everyone is staying safe at home. I am trying to think about how I can make a virtue of...

Happy Mother's Day for all those Mums and Grandmas out there. I. Hope everyone i...

Mrs_Average

•4 years ago

6 Replies

Query about virus

Hi, I have just read in local paper that some cancer sufferers are being advised to stop treatment. I'm on low dose aspirin and hydroxy, can anyone tell me if...

Hi, I have just read in local paper that some cancer sufferers are being advised...

Simris

•4 years ago

12 Replies

From the NHS website.

Just have to wait to see if anyone gets a phone call.

wendycu

•4 years ago

1 Reply

Coughing

Wel my husband had cough all week no temp or sore throat but had phnemonia January and cough seems to have carried on now last night I started coughing no temp...

Wel my husband had cough all week no temp or sore throat but had phnemonia Janua...

Chel1

•4 years ago

2 Replies

Bone pain in PMF

Hi I have PMF and take 40mg Ruxilitinib which has been relatively good at getting rid of the side effects. Unfortunately for the last two weeks I have been...

Hi I have PMF and take 40mg Ruxilitinib which has been relatively good at gettin...

Skye333

•4 years ago

6 Replies

We want Answers that don’t yet exist for Covid 19

We are the MPN generation that can help those in the future, from our own anxieties to actual symptoms. For me living with PV and taking RUX and HC a...

We are the MPN generation that can help those in the future, from our own anxiet...

ourlife

•4 years ago

5 Replies

Latest Information from Bloodwise

Hi everyone, I was reading the Bloodwise website this evening and came across this updated information. I realise that this is slightly different from what we...

Hi everyone, I was reading the Bloodwise website this evening and came across th...

Trueblue8

•4 years ago

12 Replies

Panic buying

Well there wasn’t anything else left on the shelves 😆

lizzziep

•4 years ago

28 Replies

Overview of Cutaneous Squamous Cell Carcinoma

Post by MPN-MATE Admin » Fri Mar 20, 2020 8:04 am Hi everyone... I found this information well worth a listen, as some of the medications that some of us must...

Post by MPN-MATE Admin » Fri Mar 20, 2020 8:04 am Hi everyone... I found this i...

socrates_8

•4 years ago

2 Replies

Advice for Patients with Myeloproliferative Neoplasms - 19th March 2020

Please look at the NHS website for the latest information and follow updates on the news and television. Advice is currently changing frequently so please...

Please look at the NHS website for the latest information and follow updates on ...

Mazcd

Partner•4 years ago

52 Replies

Dental surgery

Hi all, I'm supposed to be having dental surgery tom but not sure wwhether I shld be self isolating as I have Et jak2 positive and currently on hydroxy and...

Hi all, I'm supposed to be having dental surgery tom but not sure wwhether I shl...

tina6

•4 years ago

5 Replies

Sainsbury's are not protecting vulnerable people

Went to Sainsbury's in Ripley Derbyshire this morning after their statement that they will keep the first hour of opening for vulnerable people only. What a...

Went to Sainsbury's in Ripley Derbyshire this morning after their statement that...

skodaguy

•4 years ago

27 Replies

Coronavirus and isolation

I am currently in self isolation at my house going out just for the absolutely necessary and wearing a mask when doing so. All I can say is that I don't have...

I am currently in self isolation at my house going out just for the absolutely n...

Kelly2

•4 years ago

9 Replies

Music for All!

https://www.theguardian.com/music/2020/mar/16/classical-music-opera-livestream-at-home-coronavirus

https://www.theguardian.com/music/2020/mar/16/classical-music-opera-livestream-a...

Anag

•4 years ago

5 Replies

Dodgy heart valves

Hi guys, a change of subject from covid19. Has anyone else had issues with stiff (that’s how my gp described them) heart valves? I still have too many red...

Hi guys, a change of subject from covid19. Has anyone else had issues with stif...

Aime

•4 years ago

36 Replies

Suggestions

Thanks to everyone for suggestions for headaches and dizziness. Got my bone marrow biopsy finally scheduled for this coming Friday. Hoping it gives me answers....

Thanks to everyone for suggestions for headaches and dizziness. Got my bone marr...

Scrollernut

•4 years ago

5 Replies

Emotional and well-being advice

How do I look after my emotional well-being during this stressful time? Feeling concerned or overwhelmed by the news of Coronavirus is understandable,...

How do I look after my emotional well-being during this stressful time? Feeling...

Mazcd

Partner•4 years ago

24 Replies

Queries and concerns re MPNs and Coronavirus (COVID-19)

We are currently preparing information for everyone and will publish it as soon as we can. In the meantime, you are advised to continue taking your...

We are currently preparing information for everyone and will publish it as soon ...

Mazcd

Partner•4 years ago

8 Replies

Are MPN sufferers part of the At Risk Group?

So far I have not received an answer from the Medical Profession regarding the Coronavirus. Are MPN sufferers to be included in the ‘At Risk’ group?

So far I have not received an answer from the Medical Profession regarding the C...

G1DRA

•4 years ago

26 Replies

Light headed?

I do not have my full diagnosis but have ET. I have been going through testing since Nov. This past week I have been experiencing a strange rush in my head. It...

I do not have my full diagnosis but have ET. I have been going through testing s...

PeachJ

•4 years ago

6 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for March 2020

can corona symptoms be different if on medication?

Keeping safe

Et and mean survival

No face to face haematology hospital appointments for at least 4 months

Will I be getting a letter?

RN recently diagnosed with ET- worry about COVID19

CORONA VIRUS

Nothing like walking the dog to gain perspective

NHS will be writing to all vulnerable people advising them to self isolate for 12 weeks

Dilemma

Happy Mother's day and isolation ideas

Query about virus

From the NHS website.

Coughing

Bone pain in PMF

We want Answers that don’t yet exist for Covid 19

Latest Information from Bloodwise

Panic buying

Overview of Cutaneous Squamous Cell Carcinoma

Advice for Patients with Myeloproliferative Neoplasms - 19th March 2020

Dental surgery

Sainsbury's are not protecting vulnerable people

Coronavirus and isolation

Music for All!

Dodgy heart valves

Suggestions

Emotional and well-being advice

Queries and concerns re MPNs and Coronavirus (COVID-19)

Are MPN sufferers part of the At Risk Group?

Light headed?

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