Posts - MPN Voice | HealthUnlocked

MPN Voice

10,992 members•15,371 posts

All posts for December 2021

Is Sore Throat and Back pain related to ET?

Hi everyone, I was diagnosed with ET, Calr mutation last year. I have been having sore throat and back pain since last year that keeps coming back. But the...

Hi everyone, I was diagnosed with ET, Calr mutation last year. I have been havin...

Label

•3 years ago

15 Replies

I am only on aspirin for my ET (at moment). How much should I be shielding from Covid? I am triple vaxxed.

Is ET a risk factor in Covid itself? Or is the relevance of risk increased for those using cytoreductive drugs. (Hydroxycarbamide)?

Is ET a risk factor in Covid itself? Or is the relevance of risk increased for t...

Peachjoy

•3 years ago

1 Reply

What will 2022 bring?

I wanted to be able to feel more positive for 2022 and wish people a happy new year. But after watching the news last night (never do this before bed!) I can...

I wanted to be able to feel more positive for 2022 and wish people a happy new y...

MWxxxx

•3 years ago

30 Replies

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Progress and Thanks

Hi. Am on the rollercoaster of fear and doubts re proposed sudden change of management of my ET. However, resulting from the brilliant and heartfelt advice on...

Hi. Am on the rollercoaster of fear and doubts re proposed sudden change of mana...

Peachjoy

•3 years ago

19 Replies

Latest Besremi cost info

There is a "discount" Rx company listing clear US pricing for Bes. This I believe works out to ~$170,000/year. If it goes 1dose/month after the 1st year,...

There is a "discount" Rx company listing clear US pricing for Bes. This I belie...

EPguy

•3 years ago

16 Replies

Besremi approved. Not what?

Updated: 1/27/2022: Tomorrow is the day I start Besremi. I was dx with PV 4/15 (tax day in US) in 2015. Since then I've only had phlebotomies and taken...

Updated: 1/27/2022: Tomorrow is the day I start Besremi. I was dx with PV 4/15 ...

Elizka

•3 years ago

53 Replies

Metformin and Ruxolitinib for PV?

Hello, Happy New Year (almost) to everyone. Maybe 2022 bring us all a good year of health and happiness. Has anyone researched using Metformin and...

Hello, Happy New Year (almost) to everyone. Maybe 2022 bring us all a good year...

Elizka

•3 years ago

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Travel insurance

I'm looking at going to Poland in March next year... hopefully! Can anyone recommend any good travel insurance companies that insure us with our funny blood?...

I'm looking at going to Poland in March next year... hopefully! Can anyone reco...

mystic_shrimp

•3 years ago

5 Replies

Understanding your blood test

Hi all, Happy New Year etc! I have finally managed to translate my blood test results and for anyone else out there who is also bemused, I am attaching a guide...

Hi all, Happy New Year etc! I have finally managed to translate my blood test re...

Quercus53

•3 years ago

13 Replies

Found this in my other support group. Hope you can open it:

https://www.mympnteam.com/resources/understanding-platelet-counts-in-mpns?fbclid=IwAR0U4486_cSgoVKGmCzQ-i2JOuDSCKih3JuOVUp130FlRi8XbCnPUCtZuWU

https://www.mympnteam.com/resources/understanding-platelet-counts-in-mpns?fbclid...

IrishHiker

•3 years ago

6 Replies

This is not good enough !!!

Ronapreve, Monupiravir, Sotrovimab, only for some - and only when infected? This does not sound like protecting the immunocompromised - more like shutting the...

Ronapreve, Monupiravir, Sotrovimab, only for some - and only when infected? This...

Hidden

•3 years ago

12 Replies

Anti vaccination

I now have post Myelofibrosis AML. I’m worried about relatives who are anti vaccinations. I should keep away from them??

I now have post Myelofibrosis AML. I’m worried about relatives who are anti vac...

Mysi

•3 years ago

22 Replies

Hydration

How do you know whether you are drinking enough water/fluid whilst on hydroxy, and what symptoms do you experience if you are not drinking enough? I am just...

How do you know whether you are drinking enough water/fluid whilst on hydroxy, a...

Oscarsboy

•3 years ago

10 Replies

Et diagnosed.

Does anybody know of a mpn expert in the Manchester areas. I mseeing my nurse monthly where she takes bloods and rings me with my results. I am now on 17...

Does anybody know of a mpn expert in the Manchester areas. I mseeing my nurse m...

10061950

•3 years ago

11 Replies

ET questions for my 16 year old daughter

Hello, I’m so relieved to find this support site! My daughter was diagnosed with ET , Jak2+ Last September at age 15. Her platelet range is the 800,000’s and...

Hello, I’m so relieved to find this support site! My daughter was diagnosed wit...

Piperpeeps

•3 years ago

20 Replies

Thank you for your replies to my post about Plavix

I want to thank everyone for replying to my post about Plavix and PV. I have an appointment with my hematologist in late January and will have lots to talk...

I want to thank everyone for replying to my post about Plavix and PV. I have an...

Bluetoday1

•3 years ago

1 Reply

Cut-off point for disease versus no disease for JAK2V617F mutation positive individuals

« …Furthermore, a novel observation was that no individuals with a myeloproliferative neoplasm were found in cases with an allele burden below 2%, which may...

« …Furthermore, a novel observation was that no individuals with a myeloprolifer...

Manouche

•3 years ago

15 Replies

Best Wishes

Feeling thankful for all of you. Wishing everyone bright new year with love and peace. xx

Feeling thankful for all of you. Wishing everyone bright new year with love and ...

Virginia91

•3 years ago

4 Replies

Missed tablet

I am still fairly new to having ET and JAK+2 and asking what may look like daft question s i forgot it was sat today being Christmas day and should have taken...

I am still fairly new to having ET and JAK+2 and asking what may look like daft ...

ChillyAsh34

•3 years ago

8 Replies

From Chicago.

Merry Christmas and a lovely new year. 🎉🎄🎉🎄. Praying all find peace of mind.

Merry Christmas and a lovely new year. 🎉🎄🎉🎄. Praying all find peace of mind....

Scrollernut

•3 years ago

2 Replies

Just Christmas wishes

Merry Christmas everyone! Many thanks to Maz and everyone on this amazing list! Thank you for this list.

Merry Christmas everyone! Many thanks to Maz and everyone on this amazing list! ...

Kdavie12

•3 years ago

2 Replies

Merry Christmas

I would like to wish you all a merry Christmas and a happy healthy new year.

ciye

•3 years ago

4 Replies

MERRY CHRISTMAS

Wishing you all Peace & Joy during the Holidays and throughout the coming year.

Wishing you all Peace & Joy during the Holidays and throughout the coming year. ...

hunter5582

•3 years ago

17 Replies

Down days

I had my hydroxycarbamide upped from one a day to one for 5days 2for 2days platelets 480 since taking the extra hydroxycarbamide I am experiencing leg pain...

I had my hydroxycarbamide upped from one a day to one for 5days 2for 2days pla...

ChillyAsh34

•3 years ago

15 Replies

Warm foot

First of all, merry Christmas everyone, I hope everyone is enjoying the holiday season! I'm 34 years old, diagnosed with ET in 2019 and recently been put on...

First of all, merry Christmas everyone, I hope everyone is enjoying the holiday ...

Maella

•3 years ago

9 Replies

Sudden change of management

Hi. Firstly I must mention how grateful I am to have found this group. I’ve been feeling very isolated, frightened and alone. I am 62, I was diagnosed with ET...

Hi. Firstly I must mention how grateful I am to have found this group. I’ve been...

Peachjoy

•3 years ago

46 Replies

New data on long acting antibody treatment for Immune Compromised

I posted this in a reply today, but here is more info. I don't think it's authorized yet in UK even as it is a UK Co. But maybe UK members can clarify....

I posted this in a reply today, but here is more info. I don't think it's autho...

EPguy

•3 years ago

1 Reply

How do you afford Jakefi chemo? My insurance only pays for half of it.

I have essential thrombocythemia and was wondering if anybody is on Jakefi for treatment? My Hematologist wants to put me on this instead of hydroxyurea. My...

I have essential thrombocythemia and was wondering if anybody is on Jakefi for t...

Meeileem

•3 years ago

2 Replies

Good wishes.

Not a question this time. I would just like to say that I hope you all have a safe and great Christmas with tested family and friends and that you all have a...

Not a question this time. I would just like to say that I hope you all have a ...

Jynx93

•3 years ago

5 Replies

Good read re summary of Ash 2021

https://www.facebook.com/groups/395227047729214/?ref=share

Paul123456

•3 years ago

1 Reply

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for December 2021

Is Sore Throat and Back pain related to ET?

I am only on aspirin for my ET (at moment). How much should I be shielding from Covid? I am triple vaxxed.

What will 2022 bring?

Progress and Thanks

Latest Besremi cost info

Besremi approved. Not what?

Metformin and Ruxolitinib for PV?

Travel insurance

Understanding your blood test

Found this in my other support group. Hope you can open it:

This is not good enough !!!

Anti vaccination

Hydration

Et diagnosed.

ET questions for my 16 year old daughter

Thank you for your replies to my post about Plavix

Cut-off point for disease versus no disease for JAK2V617F mutation positive individuals

Best Wishes

Missed tablet

From Chicago.

Just Christmas wishes

Merry Christmas

MERRY CHRISTMAS

Down days

Warm foot

Sudden change of management

New data on long acting antibody treatment for Immune Compromised

How do you afford Jakefi chemo? My insurance only pays for half of it.

Good wishes.

Good read re summary of Ash 2021

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