Posts - MPN Voice | HealthUnlocked

MPN Voice

10,647 members • 14,732 posts

All posts for March 2020

Shoulder and hand pain

Hi I have ET JAK2 diagnosed 2017. I am on Hydroxycarbamide 500mg a day. Recently my blood count went from 450 to 630 with horrendous fatigue, which is far...

Hi I have ET JAK2 diagnosed 2017. I am on Hydroxycarbamide 500mg a day. Recently...

Heather270240

•4 years ago

15 Replies

GREAT TALK w/ Dr Catriona Jamieson

Post by MPN-MATE Admin » Sat Mar 14, 2020 1:02 pm Hi guys... :D Came across one of the BEST 30 minute MPN discussions I have seen for a while....

Post by MPN-MATE Admin » Sat Mar 14, 2020 1:02 pm Hi guys... :D Came across o...

socrates_8

•4 years ago

10 Replies

MPN ET NHS WORRIED WORKER

Hi, any advice ? to keep me safe while being a frontline worker with stable ET taking chemo ? Neutrophils 4.2

Hi, any advice ? to keep me safe while being a frontline worker with stable ET t...

Lainy1

•4 years ago

3 Replies

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Corona virus

Hi I would love your thoughts on this . I have ET and I am on hydroxy my question is I have a nite time wedding party to attend I am now considering canceling...

Hi I would love your thoughts on this . I have ET and I am on hydroxy my questio...

Angeltwin

•4 years ago

7 Replies

Mazcd

Hi Maz Just a quick question if I may The advice posted mentions to keep taking our meds if we get the virus Is this still ok to do if we have a high...

Hi Maz Just a quick question if I may The advice posted mentions to keep taking...

Pippa63

•4 years ago

7 Replies

MPN ET JAK2 - Coronavirus risk?

Hi folks, my first post! I was diagnosed MPN ET JAK2+ last August totally out of the blue after a routine blood test. I’d had no noticeable symptoms and felt...

Hi folks, my first post! I was diagnosed MPN ET JAK2+ last August totally out of...

CooperS1

•4 years ago

13 Replies

Blood tests & Venesections during self isolation

All, I just wondered if anyone had spoken to their consultant or doctor regarding the situation of going to an appointment or needing a blood test if you need...

All, I just wondered if anyone had spoken to their consultant or doctor regardin...

MarkD6701

•4 years ago

2 Replies

Essential thrombocytosis and heartbeat in ear

Hi I have been hearing my heartbeat in one ear for a few months happens when I stand up from laying or change position in bed. I have googled and worried it's...

Hi I have been hearing my heartbeat in one ear for a few months happens when I s...

Irishgal12

•4 years ago

13 Replies

Nursing with ET during concerning times.

This issue is something I would like Maz to ask the medical team ( if this is possible!) about but also others in a similar position. I am a 40 year old full...

This issue is something I would like Maz to ask the medical team ( if this is po...

Nickyanne

•4 years ago

36 Replies

High TSH levels

Hi all, Just wondering is there anybody on interferon that have had a raise in their TSH level (hypothyroidism) Thanks! Sheila

Hi all, Just wondering is there anybody on interferon that have had a raise in t...

Sheila-collins

•4 years ago

4 Replies

Enteric coated aspirin

Apparently there is a real problem getting low dose enteric coated aspirin. The coating is made in China and because of Coronavirus, none is being made or...

Apparently there is a real problem getting low dose enteric coated aspirin. The ...

Stephen399b

•4 years ago

12 Replies

Coronavirus

Coronavirus I I live in north Devon am post ET-MF awaiting blood transfusion HB 94 and dropping my daughter works in local health centre rang me to say am best...

Coronavirus I I live in north Devon am post ET-MF awaiting blood transfusion HB ...

westlieght

•4 years ago

18 Replies

Time between appointments

Does anyone else think that 11 to 12 weeks between appointments is a long time? I'm not due to see the consultant till May1and I am feeling more tired and had...

Does anyone else think that 11 to 12 weeks between appointments is a long time? ...

Cassie11

•4 years ago

11 Replies

Social distancing helps mitigate spread of corona virus

Link to data based coronavirus epidemiology model https://medium.com/@tomaspueyo/coronavirus-act-today-or-people-will-die-f4d3d9cd99ca The message, derived...

Link to data based coronavirus epidemiology model https://medium.com/@tomaspuey...

Rachelthepotter

•4 years ago

1 Reply

Hu journey

Well my platelets have risen slightly not massive. So.now on HU and Angralide to see if they can bring them down. I look more like a pin cushion today they...

Well my platelets have risen slightly not massive. So.now on HU and Angralide t...

heathermc

•4 years ago

3 Replies

Homemade hand sanitizer

Was listening to GMB this morning and DR Hillary was saying you can make your own hand sanitizer by using industrial alcohol (99% alcohol) which is available...

Was listening to GMB this morning and DR Hillary was saying you can make your ow...

jillydabrat

•4 years ago

29 Replies

Travel Abroad

Hi What’s everyone’s thoughts on travelling abroad? Due to go to Bulgaria Saturday, at the moment it’s safe to travel there but just worried about crowds at...

Hi What’s everyone’s thoughts on travelling abroad? Due to go to Bulgaria Saturd...

Grumpyfairy

•4 years ago

21 Replies

Confused

Doc told me yesterday I have some scarring in my bone marrow, but all my blood levels seem normal. So we are just going to monitor the situation. Not sure if...

Doc told me yesterday I have some scarring in my bone marrow, but all my blood l...

Scrappinggolfer

•4 years ago

9 Replies

First haematology appointment cancelled!

Hi all, Having received an appointment for 25/03. My gp had told me that the haematology dept no longer need to see me! Apparently I only have slight increase...

Hi all, Having received an appointment for 25/03. My gp had told me that the ha...

Poppet2518

•4 years ago

6 Replies

PIP

Anyone have any advice/ experience of claiming the enhanced rates of PIP daily living and mobility. I have ET and MF and finding life increasingly difficult...

Anyone have any advice/ experience of claiming the enhanced rates of PIP daily l...

Ginny70

•4 years ago

3 Replies

HU, ET and Coronavirus.

Now with coronvirus to avoid, does taking HU make us more likely to be high risk?

Now with coronvirus to avoid, does taking HU make us more likely to be high risk...

Klys

•4 years ago

3 Replies

Advice on Coronavirus for people with cancer

A number of cancer charities under the ‘One Cancer Voice’ banner, have collaborated to develop a set of FAQs (frequently asked questions) regarding Coronavirus...

A number of cancer charities under the ‘One Cancer Voice’ banner, have collabora...

Mazcd

Partner•4 years ago

21 Replies

Essential thrombocytosis likely?

So I got a copy of consultant letter which says diagnosis mpn likely et. My haematologist told me after bmb it was et? Now am fixated on the word likely is...

So I got a copy of consultant letter which says diagnosis mpn likely et. My haem...

Irishgal12

•4 years ago

13 Replies

Hand Sanitiser - DIY Recipes

We all know that it is hard to get hold of hand sanitiser at the moment so DIY recipes are very tempting. Unfortunately there are lots of recipes on the...

We all know that it is hard to get hold of hand sanitiser at the moment so DIY r...

Applesnpears

•4 years ago

5 Replies

Elevated Cytokines a risk factor for ARDS in COVID-19?

I thought this article was very interesting:...

Elizka

•4 years ago

5 Replies

Severe stomach issues

Hi. I’m having ET and it’s been quite a few months since I started experiencing stomach issues. I have severe pain during and after I eat something. Is anyone...

Hi. I’m having ET and it’s been quite a few months since I started experiencing ...

DamnYouEt

•4 years ago

13 Replies

Backache

I have ET JAK2 and have had a backache for a while Paracetamol is not helping I have been told that I can’t take ibruprofen can anyone help with any advice as...

I have ET JAK2 and have had a backache for a while Paracetamol is not helping I ...

Tilly_Rose

•4 years ago

5 Replies

Telephone appointments

How many MPNrs have telephone appointments with their haematologists/ nurse specialists? Clearly they are not suitable for everyone (new diagnosis or...

How many MPNrs have telephone appointments with their haematologists/ nurse spec...

Applesnpears

•4 years ago

17 Replies

MPN specialists - finding a

https://mpnforumlist.wordpress.com/the-list-2/ Hi. We know that having a doctor who is a specialist in MPNs matters. The link above is to a list of MPN...

https://mpnforumlist.wordpress.com/the-list-2/ Hi. We know that having a doctor ...

Rachelthepotter

•4 years ago

1 Reply

Newly diagnosed

Hello all! So I am fairly recently diagnosed with ET, though it's been something we have been monitoring for some time. My dad was first diagnosed with it (hi...

Hello all! So I am fairly recently diagnosed with ET, though it's been something...

Fluffylittle

•4 years ago

29 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for March 2020

Shoulder and hand pain

GREAT TALK w/ Dr Catriona Jamieson

MPN ET NHS WORRIED WORKER

Corona virus

Mazcd

MPN ET JAK2 - Coronavirus risk?

Blood tests & Venesections during self isolation

Essential thrombocytosis and heartbeat in ear

Nursing with ET during concerning times.

High TSH levels

Enteric coated aspirin

Coronavirus

Time between appointments

Social distancing helps mitigate spread of corona virus

Hu journey

Homemade hand sanitizer

Travel Abroad

Confused

First haematology appointment cancelled!

PIP

HU, ET and Coronavirus.

Advice on Coronavirus for people with cancer

Essential thrombocytosis likely?

Hand Sanitiser - DIY Recipes

Elevated Cytokines a risk factor for ARDS in COVID-19?

Severe stomach issues

Backache

Telephone appointments

MPN specialists - finding a

Newly diagnosed

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