Posts - MPN Voice | HealthUnlocked

MPN Voice

10,434 members • 14,381 posts

All posts for November 2020

Shielding or back to work

Evening all. Just had the latest e mail from the government to say we can go back to work. Finding it hard to take in considering we are now going into the...

Evening all. Just had the latest e mail from the government to say we can go bac...

poly2

•3 years ago

7 Replies

Vitamin D

Does anyone at MPNVoice now the answer to this please. I have been offered the free 4 months of Vit D supplements by the government. However it also says that...

Does anyone at MPNVoice now the answer to this please. I have been offered the f...

eastwood1932

•3 years ago

18 Replies

Interferon-Alpha (IFN) Therapy Discontinuation is Feasible in MPN

Conclusion: Overall, our study demonstrates that IFN discontinuation represents a safe strategy in MPN patients who achieved CHR, and particularly in patients...

Conclusion: Overall, our study demonstrates that IFN discontinuation represents ...

Manouche

•3 years ago

4 Replies

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Blood cancer uk

Just received email from blood cancer uk saying people with blood cancer moved up the vaccine list - will this include MPNs?

Just received email from blood cancer uk saying people with blood cancer moved u...

Jlah

•3 years ago

4 Replies

Natto

Has anyone made Natto ? It’s high vit K and supposed to be good to prevent blood clotting . X

Has anyone made Natto ? It’s high vit K and supposed to be good to prevent blood...

Mostew

•3 years ago

5 Replies

Peginterferon /Besremi and Anxiety issues

I had my second opinion hospital visit with an MPN Professor- l was very impressed, these people really do know all the issues . Had long chat about my...

I had my second opinion hospital visit with an MPN Professor- l was very impress...

Dovme

•3 years ago

15 Replies

Holiday Happiness - Joy is where we find it.

I hope all celebrating the USA Thanksgiving had a great time. To stay safe, my family did a virtual Thanksgiving and shared time on Zoom. We actually had...

I hope all celebrating the USA Thanksgiving had a great time. To stay safe, my...

hunter5582

•3 years ago

12 Replies

Help deciding about Transplant

I was diagnosed with Primary MF aged 49, 6 years ago. I am well managed on Ruxolitinib 30 mg daily, Aspirin and Acyclovir. My consuhas recently referred me...

I was diagnosed with Primary MF aged 49, 6 years ago. I am well managed on Rux...

Cazbolac

•3 years ago

27 Replies

Is there any information yet on the COVID-19 vaccines for post Bone Marrow Transplant patients?

I had my transplant in 2014 and have seen a few articles about the way the vaccines interact with the immune system.

I had my transplant in 2014 and have seen a few articles about the way the vacci...

colinparker1967

•3 years ago

2 Replies

feverish feeling?

Hi everyone, I'm experiencing a feverish feeling which comes and goes. I'd say I feel it at least once/day, but I have no fever. I'm not seeing this listed...

Hi everyone, I'm experiencing a feverish feeling which comes and goes. I'd say ...

souplover

•3 years ago

8 Replies

New MPN Voice website

We have a new website which we will be launching on the afternoon of Friday 4th December. The new website has been necessitated due to the existing site...

We have a new website which we will be launching on the afternoon of Friday 4th ...

Mazcd

Partner•3 years ago

19 Replies

UPDATE: First Haematology Appointment - What Happens?

Update: Hi, I'm back with a little update I guess? I finally got my referral letter through....but it isn't for a haematologist, but rather an endocrinologist?...

Update: Hi, I'm back with a little update I guess? I finally got my referral let...

pancakedispatcher

•3 years ago

12 Replies

Blood levels fine but still symptoms

Hi All, I am diagnosed with PV since April this year. After a lot of experimenting with what might help my blood levels to normalise, I’m currently on Aspirin...

Hi All, I am diagnosed with PV since April this year. After a lot of experimenti...

Nay123

•3 years ago

29 Replies

Return back to work

Hi everyone I have ET I'm on hydroxycaramide. I work in a drs surgery as a health care assistant this last month I have been isolating. I received a letter...

Hi everyone I have ET I'm on hydroxycaramide. I work in a drs surgery as a healt...

linphy

•3 years ago

8 Replies

Do people with ET have poor appetite?

Meal times, I feel hungry, have a few bites and then feel full. Have to force myself to eat a little more but my food usually ends up on hubby’s plate. Just...

Meal times, I feel hungry, have a few bites and then feel full. Have to force my...

Cokopops

•3 years ago

12 Replies

Update on Husband

Hi all - We got the results back last week from my husband's JAK2 test. It was negative. Since then he has had 5 phlebotomies (one each week) and his...

Hi all - We got the results back last week from my husband's JAK2 test. It was ...

Desert_dweller

•3 years ago

4 Replies

Prof Harrison, interferons and disease progression

Very useful video including Prof Harrison discussing Ropeg (Pegasys should offer similar results) and the correlation between reducing JAK2 AB and slowing down...

Very useful video including Prof Harrison discussing Ropeg (Pegasys should offer...

Paul123456

•3 years ago

4 Replies

Chest X Ray for High Platelet TERRIFIED 😰

Hi all, I'm Nayia, new here, suffer with severe health anxiety that keeps me from washing, eating and getting out of bed if there is a worry (in 2016 i had a...

Hi all, I'm Nayia, new here, suffer with severe health anxiety that keeps me fro...

Nayia

•3 years ago

35 Replies

Itching intensified and in Pegasys

Hello! I have been on Pegasys for almost a year now, diagnosed PV Jak2 positive 5 years ago. I have been relatively symptom free with the exception of some...

Hello! I have been on Pegasys for almost a year now, diagnosed PV Jak2 positiv...

DN515

•3 years ago

3 Replies

Christmas

Just wondering what advice people in the extremely vulnerable group should do over Christmas regarding lifting of travel and other restrictions is it safe to...

Just wondering what advice people in the extremely vulnerable group should do ov...

Hughley

•3 years ago

18 Replies

Jak2, MPN, all blood count is up! Nutrition and lifestyle changes?

Just came from the doctor. Still no definite result after my BMB. Tests are still incomplete. Some info: Positive for Jak2 , myeloproliferative neoplasms......

Just came from the doctor. Still no definite result after my BMB. Tests are stil...

margaritampn

•3 years ago

2 Replies

Jak2 test

Hello everyone, I am 24 years of age with a kidney disease called nephrotic syndrome. My GP called me last week to say she was concerned of how high my RBC...

Hello everyone, I am 24 years of age with a kidney disease called nephrotic syn...

Phoebe776

•3 years ago

2 Replies

How old were you when you were diagnosed and how old are you now?

I have two beautiful children and all I can think about ever since I was diagnosed with MPN on 11/3/2020 is how much I want be around my kids and witness them...

I have two beautiful children and all I can think about ever since I was diagnos...

margaritampn

•3 years ago

32 Replies

Jak2 positive, bone marrow biopsy, eczema, ultrasound

Jak 2 positive. Diagnosed with MPM and just had my bone marrow biopsy last week, Monday. Also saw a dermatologist because I have severe eczema. Like i look a...

Jak 2 positive. Diagnosed with MPM and just had my bone marrow biopsy last week,...

margaritampn

•3 years ago

2 Replies

VITAMIN 'D' & Cancer Findings...

Post by MPN-MATE Admin » Tue Nov 24, 2020 11:57 am Morning everyone, As many of you will have already discovered, (as have I), that many of us suffer from a...

Post by MPN-MATE Admin » Tue Nov 24, 2020 11:57 am Morning everyone, As many o...

socrates_8

•3 years ago

36 Replies

High alkaline phosphatase

I was mostly quite pleased with my blood results today and I don't need a transfusion this week. However, my liver function is not so great with the alkaline...

I was mostly quite pleased with my blood results today and I don't need a transf...

Otterfield

•3 years ago

12 Replies

Gene SRSF2

I'm new here, but have private messaged Hunter who is an inspiration and interesting fact finder. I have MF progressed from PV last year but my recent visit to...

I'm new here, but have private messaged Hunter who is an inspiration and interes...

ktaylor5563

•3 years ago

10 Replies

Hair loss

I am horrified by the amount of hair loss since starting on hydrocarbamide in April. Since this is a life long treatment it will only get worse. Would...

I am horrified by the amount of hair loss since starting on hydrocarbamide in A...

ciye

•3 years ago

17 Replies

Long time no see Consultants.

A little story for you all. I live in the Channel Islands, which many might not know but we have been subject to very severe Lockdowns by our Government to...

A little story for you all. I live in the Channel Islands, which many might not ...

bordeauxgirl

•3 years ago

20 Replies

ZOOM CAFE CATCHUP MEETING DETAILS

Good evening all... :-) I am still working away w/ one of my nephews trying to sort out this rather tedious form of an 'Update' to one of my system software...

Good evening all... :-) I am still working away w/ one of my nephews trying to ...

socrates_8

•3 years ago

2 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for November 2020

Shielding or back to work

Vitamin D

Interferon-Alpha (IFN) Therapy Discontinuation is Feasible in MPN

Blood cancer uk

Natto

Peginterferon /Besremi and Anxiety issues

Holiday Happiness - Joy is where we find it.

Help deciding about Transplant

Is there any information yet on the COVID-19 vaccines for post Bone Marrow Transplant patients?

feverish feeling?

New MPN Voice website

UPDATE: First Haematology Appointment - What Happens?

Blood levels fine but still symptoms

Return back to work

Do people with ET have poor appetite?

Update on Husband

Prof Harrison, interferons and disease progression

Chest X Ray for High Platelet TERRIFIED 😰

Itching intensified and in Pegasys

Christmas

Jak2, MPN, all blood count is up! Nutrition and lifestyle changes?

Jak2 test

How old were you when you were diagnosed and how old are you now?

Jak2 positive, bone marrow biopsy, eczema, ultrasound

VITAMIN 'D' & Cancer Findings...

High alkaline phosphatase

Gene SRSF2

Hair loss

Long time no see Consultants.

ZOOM CAFE CATCHUP MEETING DETAILS

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