Posts - MPN Voice | HealthUnlocked

MPN Voice

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All posts for September 2020

Adeyababa (with ET )

Hello friends, I am 48 and diagnosed as Et. My hematologist has done bone marrow aspiration . My platelet is increased from 630,000 before a year and turns now...

Hello friends, I am 48 and diagnosed as Et. My hematologist has done bone marrow...

Adeyabeba

•4 years ago

2 Replies

ET Progression?

Just wondered if anyone can offer any advice on what signs and symptoms to look out for that might suggest that ET has progressed to MF. Prior to my diagnosis...

Just wondered if anyone can offer any advice on what signs and symptoms to look ...

Trueblue8

•4 years ago

15 Replies

American Society of Hematology - MPN and COVID-19 Guidance Version 4:0 last updated 17 September 2020

COVID-19 and MPNs, frequently asked questions, published on the ASH website, with input from: Drs. Ruben Mesa, Alberto Alvarez-Larran, Claire Harrison,...

COVID-19 and MPNs, frequently asked questions, published on the ASH website, wit...

Mazcd

Partner•4 years ago

9 Replies

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High lymphocytes and low red blood cell count

Hi I have E/T and P/V my blood results just back my red blood cell is low and my lymphocytes are high along with high ALT has anyone had this ? I’m on...

Hi I have E/T and P/V my blood results just back my red blood cell is low and my...

PhilReade

•4 years ago

8 Replies

Working during Covid

Hi everyone... how many of you are back at work or working while on hydroxyurea for PV during Covid????

Hi everyone... how many of you are back at work or working while on hydroxyurea ...

Hidden

•4 years ago

13 Replies

POLCYTHAEMIA VERA (PV) for Patients - A Talk by MESA & SCHERBER

Post by MPN-MATE Admin » Wed Sep 23, 2020 10:35 am Morning all my MPN brothers & sisters... :D Here is another in the series of talks by Dr Ruben Mesa & Dr...

Post by MPN-MATE Admin » Wed Sep 23, 2020 10:35 am Morning all my MPN brothers ...

socrates_8

•4 years ago

4 Replies

New creation

I've been in isolation for 2 weeks, prior to an arm op so been creating for my grandsons again. Not that artistic but they love it.xx Aime 😻😻

I've been in isolation for 2 weeks, prior to an arm op so been creating for my g...

Aime

•4 years ago

24 Replies

ET Folic Acid

I have ET Jak2+, taking HU and clopidogrel. Diagnosed 5 years ago Platelets etc all under control but recently my folate level has started to fall from mid...

I have ET Jak2+, taking HU and clopidogrel. Diagnosed 5 years ago Platelets etc ...

Stephen399b

•4 years ago

7 Replies

ET JAK2 positive - Anyone over 60 only on Aspirin? and able to treat condition naturally?

Hello, be interest to know if anyone has chosen not to take medication for ET, only low dose aspirin and if it is viable through diet etc. Thank you

Hello, be interest to know if anyone has chosen not to take medication for ET, o...

lorikeet

•4 years ago

39 Replies

Hydroxycarbamide and Dentistry

Hello, just wondering if any of you have had any dental issues while on Hydroxycarbamide? My Haem. specialist advised there are not many problems. I need two...

Hello, just wondering if any of you have had any dental issues while on Hydroxyc...

lorikeet

•4 years ago

8 Replies

What Pv genes must be tested

Checking what genes for PV. What genes will we test?

SoledadBarcelona

•4 years ago

5 Replies

The Future

An open question: How do you people think we will be in the field of medication / therapies / better ASCT procedures within 10 years?

An open question: How do you people think we will be in the field of medication ...

littleluigi

•4 years ago

1 Reply

Doctor trying out blood pressure pills on me like a guinea pig

I have a blood pressure question does anyone take metoprolol I was taking a 25 mg tartrate a day and doing okay until Coronavirus and typical stress, and now...

I have a blood pressure question does anyone take metoprolol I was taking a 25 m...

mochapie

•4 years ago

7 Replies

Factor V leiden and Corona

Is there anyone out there who has the factor V Leiden mutation (APC-resistency) who knows anything about if that makes it even worse to get the corona virus?

Is there anyone out there who has the factor V Leiden mutation (APC-resistency) ...

Bohus

•4 years ago

1 Reply

MF for 30 years

Hello I was first diagnosed with MF in my late 30s when I had two young children. It had a massive effect on my life, as although I didn't have any symptoms...

Hello I was first diagnosed with MF in my late 30s when I had two young children...

Bullace

•4 years ago

15 Replies

Should I tell my gp or wait to talk to me consultant on the 30th September

My itching is driving me mad I cannot stop!!!! I made myself bleed and my legs full of bruises. I itchy all day and wake up in the middle of the night to itch...

My itching is driving me mad I cannot stop!!!! I made myself bleed and my legs ...

Avamia94

•4 years ago

13 Replies

Research and bias

I was chatting to my haematologist about various studies and research l had read or seen. He raised a issue that l hadn’t really considered that of the...

I was chatting to my haematologist about various studies and research l had read...

Dovme

•4 years ago

7 Replies

Has anybody seen any comment or opinion on Covid in MPN patients?

I am 67, with PV, diagnosed 2009, but in good health and practically asymptomatic. I was wondering about whether any information has emerged about the impact...

I am 67, with PV, diagnosed 2009, but in good health and practically asymptomati...

PVPVPV

•4 years ago

2 Replies

Myeloproliferative Neoplasms (MPNs) Spring Updates 2020

Post by MPN-MATE Admin » Sun Sep 20, 2020 3:10 pm Afternoon all... :D I am sure that all of you have heard of Dr Rueben Mesa and his colleague Dr Robyn...

Post by MPN-MATE Admin » Sun Sep 20, 2020 3:10 pm Afternoon all... :D I am su...

socrates_8

•4 years ago

2 Replies

HOW SHOULD GENOMIC ASSESSMENT IN MF BE PERFORMED?

Post by MPN-MATE Admin » Sun Sep 20, 2020 3:05 pm Hey guys... :D I have always been interested in Genomic Testing to help prognosis understanding... This...

Post by MPN-MATE Admin » Sun Sep 20, 2020 3:05 pm Hey guys... :D I have alwa...

socrates_8

•4 years ago

11 Replies

Latest test results

Hello, all, I had my routine blood work yesterday and luckily, I can say that my numbers are holding steady. My hematologist seems happy with my results since...

Hello, all, I had my routine blood work yesterday and luckily, I can say that my...

Cja1956

•4 years ago

16 Replies

Blood clots while on blood thinners.

Have PV and on Hydroxyurea and blood thinners. Has anyone with PV had blood clots while on blood thinners ?

Have PV and on Hydroxyurea and blood thinners. Has anyone with PV had blood clo...

Smile2

•4 years ago

8 Replies

I have Jak 2 and ET. My platelet count is 700. The other labs are good.

The doc says I am stable and can continue on just a baby aspirin . I am somewhat relieved but worry about progression. I was diagnosed over 21/2 years ago...

The doc says I am stable and can continue on just a baby aspirin . I am somewha...

milw532

•4 years ago

8 Replies

ET - Calr what is this?

I have ET and Jak2 - I notice that a lot of posts mention CalR what is this? Will it be mentioned on my blood results? should I ask my consultant about it? I...

I have ET and Jak2 - I notice that a lot of posts mention CalR what is this? Wil...

Cassandra61

•4 years ago

6 Replies

MPN Voice Fundraising Update September 2020

MPN Voice and The Fundraising Team, would like to say a big Thank You, to everyone who is taking part in the “30 days Hath September Challenge” and the MPN...

MPN Voice and The Fundraising Team, would like to say a big Thank You, to everyo...

Mazcd

Partner•4 years ago

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Hydroxycarbamide

Hydroxycarbamide: Can anyone advise me I have been taking Hydroxycarbamide now for 2 week, I haven’t had any major side affects however find myself feeling...

Hydroxycarbamide: Can anyone advise me I have been taking Hydroxycarbamide now f...

YBSx

•4 years ago

20 Replies

MF future treatment options

https://www.medpagetoday.com/meetingcoverage/soho/88617 This is a moment in drug development when we are going from anemia as the endpoint ... to talking about...

https://www.medpagetoday.com/meetingcoverage/soho/88617 This is a moment in drug...

Paul123456

•4 years ago

2 Replies

Is et hereditary

does anyone know is et hereditary? My specialist said no but i have read something that says yes and now am worried about passing it onto children

does anyone know is et hereditary? My specialist said no but i have read somethi...

Irishgal12

•4 years ago

47 Replies

Thank you for giving hope

Hi everyone I’ve been diagnosed with ET 3 days ago. It’s been a shock. I’m 35 and have a little daughter. I have a lot of Neurological symptoms so I’m not...

Hi everyone I’ve been diagnosed with ET 3 days ago. It’s been a shock. I’m 35 a...

Mood2020

•4 years ago

11 Replies

On bone marrow biopsy (BMB)?

Hello everyone, People with PV/ET regularly (e.g., per month) test their blood to keep track of cell counts and other things. How about bone marrow biopsy...

Hello everyone, People with PV/ET regularly (e.g., per month) test their blood ...

samiris

•4 years ago

22 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for September 2020

Adeyababa (with ET )

ET Progression?

American Society of Hematology - MPN and COVID-19 Guidance Version 4:0 last updated 17 September 2020

High lymphocytes and low red blood cell count

Working during Covid

POLCYTHAEMIA VERA (PV) for Patients - A Talk by MESA & SCHERBER

New creation

ET Folic Acid

ET JAK2 positive - Anyone over 60 only on Aspirin? and able to treat condition naturally?

Hydroxycarbamide and Dentistry

What Pv genes must be tested

The Future

Doctor trying out blood pressure pills on me like a guinea pig

Factor V leiden and Corona

MF for 30 years

Should I tell my gp or wait to talk to me consultant on the 30th September

Research and bias

Has anybody seen any comment or opinion on Covid in MPN patients?

Myeloproliferative Neoplasms (MPNs) Spring Updates 2020

HOW SHOULD GENOMIC ASSESSMENT IN MF BE PERFORMED?

Latest test results

Blood clots while on blood thinners.

I have Jak 2 and ET. My platelet count is 700. The other labs are good.

ET - Calr what is this?

MPN Voice Fundraising Update September 2020

Hydroxycarbamide

MF future treatment options

Is et hereditary

Thank you for giving hope

On bone marrow biopsy (BMB)?

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