Posts - MPN Voice | HealthUnlocked

MPN Voice

11,252 members•15,728 posts

All posts for June 2019

Polycythemia + Brain Tumor - Update

For all of us with MPNs, we face many challenges and unknowns. Sometimes we have related and unrelated medical issues that complicate things. Dealing with a...

For all of us with MPNs, we face many challenges and unknowns. Sometimes we hav...

hunter5582

•6 years ago

14 Replies

ET Question (Dizziness)

I am 55 and was diagnosed with ET, jac 2 positive, few years ago. Platelets steady about 600. I had an incident about 8 months ago, poss TIA, ran a lot of test...

I am 55 and was diagnosed with ET, jac 2 positive, few years ago. Platelets stea...

Bears23

•6 years ago

15 Replies

Left Side Neck Pain

I was diagnosed with ET a few months ago and have the usual fatigue, which I'm managing quite well. Over the last 2 weeks I have had a pain running down the...

I was diagnosed with ET a few months ago and have the usual fatigue, which I'm m...

Trueblue8

•6 years ago

10 Replies

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Are we covered on critical illness?

Critical Illness cover ~ This is what mine says about cancers, do you guys think ET will be covered?

Critical Illness cover ~ This is what mine says about cancers, do you guys thi...

jedwards123

•6 years ago

5 Replies

How many mpd patients in uk?

I found this group by researching about mpd,on cancer research site have so far found it very helpful and informative I was wondering just out of curiosity how...

I found this group by researching about mpd,on cancer research site have so far ...

Jackybuckley

•6 years ago

17 Replies

ET Thoughts please.

Apologies for a another question but the more posts I read the more worried I get. Can I ask if there is/was anyone in a similar situation to me please? My...

Apologies for a another question but the more posts I read the more worried I ge...

Mich10

•6 years ago

58 Replies

Started HU

Hi everyone! This is my first post. I have been diagnosed with PV JAK2 positive for 3.5 years and have been on this forum reading and sometimes responding. I...

Hi everyone! This is my first post. I have been diagnosed with PV JAK2 positive ...

digijools

•6 years ago

7 Replies

Bone marrow edema

Hi Guys, I have recently had an mri of-both feet and ankles due to severe pain which is greatly affecting my mobility. The scan drew attention to edema of the...

Hi Guys, I have recently had an mri of-both feet and ankles due to severe pain w...

Aime

•6 years ago

26 Replies

Does anyone run?

I’ve been doing the Couch to 5k programme, building myself up to be a (slow...) runner. I’m feeling the benefits - mental as well as physical, and would love...

I’ve been doing the Couch to 5k programme, building myself up to be a (slow...) ...

MarybellM

•6 years ago

27 Replies

ORPHANET. First port of call for current information on MPNs and other rare diseases

This is the site that was set up in 2017 ti coordinate info and research abt rare diseases and orphan drugs. It also lists the experts for each condition....

This is the site that was set up in 2017 ti coordinate info and research abt r...

Rachelthepotter

•6 years ago

2 Replies

Ruxolitinib and aggressive squamous cell skin cancers.

Hi. Update as promised. I got in touch with my MPN specialist feeling rather desperate after having had the SCC on my cheek excised. I’d followed up the...

Hi. Update as promised. I got in touch with my MPN specialist feeling rather de...

Rachelthepotter

•6 years ago

10 Replies

Women and MPNs

https://mpnadvocacy.com/women-mpns/ Hi. There is a conference being organised in September by MPN Research specifically about women with MPNs Link above...

https://mpnadvocacy.com/women-mpns/ Hi. There is a conference being organised in...

Rachelthepotter

•6 years ago

3 Replies

Newbie to mpd/et

Hi I've recently been diagnosed with mpd et and looking to learn more about it and how it could affect my life,lifestyle and longevity ,also as I'm on...

Hi I've recently been diagnosed with mpd et and looking to learn more about it a...

Jackybuckley

•6 years ago

8 Replies

Heatwave

Stay safe my French friends!

Sand-Dancer

•6 years ago

21 Replies

What to expect at Hemaetologist appt?

Hello All,This forum has been a great source of information, thank you! I’m wondering if anyone can tell me what to expect at my first Hem appointment next...

Hello All,This forum has been a great source of information, thank you! I’m won...

Jennifermcd

•6 years ago

8 Replies

A recent diagnosis of polycythaemia.

I am new here. I was given a diagnosis of polycythaemia in January this year, and was told I had had it for quite a long time. I had never heard of it, let...

I am new here. I was given a diagnosis of polycythaemia in January this year, an...

Strauss

•6 years ago

5 Replies

PV (JAK2) and Thrombocythemia

Hello, I have PV and the JAK 2 mutation. I been taking low dose aspirin and having phlebotomies for the last 5 years. I recently tried Hydroxyurea but had...

Hello, I have PV and the JAK 2 mutation. I been taking low dose aspirin and hav...

Buggerbear

•6 years ago

24 Replies

N-Acetylcysteine and symptom burden

This is an interesting article re reducing symptom burden/inflammation. The only supplement they focus on is N-Acetylcysteine which they believe could be a...

This is an interesting article re reducing symptom burden/inflammation. The only...

Paul123456

•6 years ago

22 Replies

Aches and pains....

I'm 44, JAK2+ with ET. I generally don't suffer from symptoms apart from frustrating fatigue and have had some thromboses. Now though, I have noticed severe...

I'm 44, JAK2+ with ET. I generally don't suffer from symptoms apart from frustra...

Karol_Rua

•6 years ago

21 Replies

Have to decide between Hydroxycarbide or Interferon on July 4th? Cant i just keep having a Venesection every few months? I have ET

Can anyone help me chose ? I am 59yrs so have been told that I have a choice as Interferon used for younger people and Hydro used for older people, both have...

Can anyone help me chose ? I am 59yrs so have been told that I have a choice as ...

Hildrethbird

•6 years ago

50 Replies

MPN Facebook Research Group

Hello everyone, I just wanted to share that I started an MPN Facebook research group for anyone who is interested in joining. I appreciate all of the info I...

Hello everyone, I just wanted to share that I started an MPN Facebook research g...

Walshman

•6 years ago

1 Reply

Blurred vision

Update on ET. Bloods are all good and within range. Trying to celebrate but now consultant is worried about my blurred vision. I’ve been raising this since my...

Update on ET. Bloods are all good and within range. Trying to celebrate but now ...

Jlah

•6 years ago

10 Replies

Spa treatments

Hi quick question, I have et jak 2 on aspirin and interferon once a week 45mg. My husband bought me a spa stay in for my bday. Me and my friends booked full...

Hi quick question, I have et jak 2 on aspirin and interferon once a week 45mg. ...

Elab

•6 years ago

16 Replies

HU side effects

Just wondering from anyone who has experienced side effects on HU if they appear fairly quickly or take a while to show . If you start on a low dose would it...

Just wondering from anyone who has experienced side effects on HU if they appear...

jodary

•6 years ago

23 Replies

Headache question

Question: why are headaches a possibility of ET?

milw532

•6 years ago

2 Replies

Breathlessness

Breathlessness. Sorry for late response to you all, unfortunately had to invest in a new tablet. Your comments were much appreciated and its really nice to...

Breathlessness. Sorry for late response to you all, unfortunately had to invest...

Charliemills

•6 years ago

3 Replies

Headaches

Hello all.... so I was diagnosed with E/T jak 2 + in April this year.... I have had a constant headache since 14th February.... I am under professor Harrison...

Hello all.... so I was diagnosed with E/T jak 2 + in April this year.... I have...

Dazakella2010

•6 years ago

33 Replies

Aching heart

I have like an ache in my chest not pain but I am aware, I have an appointment with my local GP on teusday I am hoping it's not my heart. On the up I don't...

I have like an ache in my chest not pain but I am aware, I have an appointment w...

Chez1947

•6 years ago

5 Replies

Interesting article regarding blood cancer treatments

https://www.bbc.co.uk/news/health-48706822 Clearly it doesn’t state MPNs, but perhaps there is a chance in the future something like this could be used.

https://www.bbc.co.uk/news/health-48706822 Clearly it doesn’t state MPNs, but ...

jimb7174

•6 years ago

4 Replies

Aspirin

Run out of Aspirin 75 today. Went chemist they had no soluble ones. Hard to even open the foil still trying. Also have to pick up my HU at hospital...

Run out of Aspirin 75 today. Went chemist they had no soluble ones. Hard to ev...

Helena303

•6 years ago

9 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for June 2019

Polycythemia + Brain Tumor - Update

ET Question (Dizziness)

Left Side Neck Pain

Are we covered on critical illness?

How many mpd patients in uk?

ET Thoughts please.

Started HU

Bone marrow edema

Does anyone run?

ORPHANET. First port of call for current information on MPNs and other rare diseases

Ruxolitinib and aggressive squamous cell skin cancers.

Women and MPNs

Newbie to mpd/et

Heatwave

What to expect at Hemaetologist appt?

A recent diagnosis of polycythaemia.

PV (JAK2) and Thrombocythemia

N-Acetylcysteine and symptom burden

Aches and pains....

Have to decide between Hydroxycarbide or Interferon on July 4th? Cant i just keep having a Venesection every few months? I have ET

MPN Facebook Research Group

Blurred vision

Spa treatments

HU side effects

Headache question

Breathlessness

Headaches

Aching heart

Interesting article regarding blood cancer treatments

Aspirin

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