Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for March 2022

MPN 10 Scale

Hi this scale seems like a useful tool especially for folks like me who are reluctant to answering questions at times about my MPN.

Hi this scale seems like a useful tool especially for folks like me who are relu...

Hidden

•2 years ago

7 Replies

Skin cancer and hydroxyurea

I have just started taking Hydroxyurea and have a question about outdoor activities. In the past I enjoyed golfing and going to the beach. I always use...

I have just started taking Hydroxyurea and have a question about outdoor activit...

Skater69

•2 years ago

15 Replies

Covid isn’t that bad after all

Morning all. I have had PV since 2009 and take 1000mgs hydroxicarbamide daily. I m 68. I thought I would just say that after being somewhat concerned nay...

Morning all. I have had PV since 2009 and take 1000mgs hydroxicarbamide daily. ...

Loubprv

Volunteer•2 years ago

40 Replies

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Clinical Trail Updates for Patients

This is a different webinar that the one by Dr. Mesa on March 30. From our friends at MPN Advocacy & Education International Tuesday, March 29, 2022, 11:30...

This is a different webinar that the one by Dr. Mesa on March 30. From our frie...

hunter5582

•2 years ago

8 Replies

Help is on the way! I discovered MPN Voice back in mid Jan. I was actually thinking a platelet count of 760 was ok, since I had no symptom

Hunter and many others urged me to get help. By the time I did platelets were 913. I am being followed by Hem/Oncology, having venesections for 6 weeks, and...

Hunter and many others urged me to get help. By the time I did platelets were 9...

BrookTownsend375

•2 years ago

6 Replies

Pneumonia With ET

Hi all, hope you are all doing well. Last week I had the most horrendous chest pains, but didn't feel cardiac related so I ignored it, then this Monday, I was...

Hi all, hope you are all doing well. Last week I had the most horrendous chest p...

Raphael_UK

•2 years ago

20 Replies

Positive result covid

Does anyone on here know about this drug that is given to us if we test positive for covid, I have ET JAK 2 and I am worried about my result I am not sure who...

Does anyone on here know about this drug that is given to us if we test positive...

Tilly_Rose

•2 years ago

11 Replies

Gp says I don't have blood cancer and can't have 4th covid jab

Hi all the title of my post pretty much says it all. I rang my gp to find out about my 4th covid jab he says I'm not entitled to it as I don't have blood...

Hi all the title of my post pretty much says it all. I rang my gp to find out ab...

Dottiedot

•2 years ago

55 Replies

Interferon possible side effects

Hi all, just wondering if any one has had the experience of shortness of breath and mild intermittent chest pains when commencing interferon treatment? I am 4...

Hi all, just wondering if any one has had the experience of shortness of breath ...

Stay05

•2 years ago

16 Replies

Monthly blog dedicated to young people living with MPNs - Alice’s sixth blog: Why do we have MPNs?

This month Alice talks about the how and why people acquire their MPN, what causes them, and the research that is hoping to find the answers. Alice and her...

This month Alice talks about the how and why people acquire their MPN, what caus...

Mazcd

Partner•2 years ago

2 Replies

Loud rumbling tinnitus

Taking Hydroxy and indepamise and right now how extremely loud tinnitus in my left ear. I recently saw an ENT consultant and had a nasal endoscopy which exams...

Taking Hydroxy and indepamise and right now how extremely loud tinnitus in my le...

Hidden

•2 years ago

16 Replies

Migraines and Besremi?

Hi Community, I started Besremi on January 28. In a previous post, I detailed an encouraging CBC after only six weeks. I have had no side effects...

Hi Community, I started Besremi on January 28. In a previous post, I detailed a...

Elizka

•2 years ago

6 Replies

By 5 years, about 14% of patients have undetectable JAK2 mutations.

« Now with this interferon tolerance improved, your abilities improve, response is excellent, and there is a potential for more. I highlighted in my...

« Now with this interferon tolerance improved, your abilities improve, response ...

Manouche

•2 years ago

8 Replies

Cost of Interferon Alfa 2a

Does Interferon Alfa 2a (Pegasus) cost $1000 for 180mcg/ml ?? Without insurance?

Does Interferon Alfa 2a (Pegasus) cost $1000 for 180mcg/ml ?? Without insurance?...

MrThara

•2 years ago

2 Replies

Success

At last got results Platelets gone down slightly from last month . Bit disappointed. Hoped for another huge drop. But I guess slow and steady is better ......

At last got results Platelets gone down slightly from last month . Bit disapp...

Mostew

•2 years ago

10 Replies

I’m new here!

Hello, I’m happy to have found this site. It’s already been helpful to read everyones experiences. I don’t feel so alone. Since my Polycythemia Vera...

Hello, I’m happy to have found this site. It’s already been helpful to read ever...

Barbiebreath

•2 years ago

7 Replies

Blood test results

I've been getting my results from haematology Nurse at hospital for 2 years . They must be so overworked they don't answer phone last couple of months. So...

I've been getting my results from haematology Nurse at hospital for 2 years . ...

Mostew

•2 years ago

27 Replies

NHS letter re COVID antiviral treatments

Finally got an email today advising that I’ve been identified as having a condition (ET) that qualifies me for a priority PCR test and antiviral treatment in...

Finally got an email today advising that I’ve been identified as having a condit...

AndyT

•2 years ago

3 Replies

Instow1

Morning everyone I read on many posts that stress increases their symptoms I’m 73 now and am still working as a specialist tradesman lot of driving...

Morning everyone I read on many posts that stress increases their symptoms I’...

Instow1

•2 years ago

3 Replies

Bone Marrow Biopsy Experience

Just heading home while writing this answer, this is my first bone marrow biopsy and it was quite eventful. The doctor couldn't get enough extract from the hip...

Just heading home while writing this answer, this is my first bone marrow biopsy...

MotoNomad

•2 years ago

13 Replies

Hair loss from HU

I have been taking HU for 3 or 4 years now for ET. I recently had pancreatitis, and had to be off of it for a couple of weeks. Prior to that I had some hair...

I have been taking HU for 3 or 4 years now for ET. I recently had pancreatitis,...

dogsandhorses

•2 years ago

27 Replies

Bone pain and chills follow-up

Hi, everyone. So I posted a week ago Thursday that I woke up in the middle of night with intense pain in my legs and arms and terrible chills and shivering. It...

Hi, everyone. So I posted a week ago Thursday that I woke up in the middle of ni...

Cja1956

•2 years ago

19 Replies

Is there a world outside of Hydroxycarbamide for PV?

I’ve really enjoyed reading the informative posts of others with PV ( haven’t been on the site for a while). I have to say that I’m amazed at how treatments...

I’ve really enjoyed reading the informative posts of others with PV ( haven’t be...

Barb17

•2 years ago

11 Replies

Haemolytic anaemia

Does anyone know anything about haemolytic anaemia? (It's the result of red blood cells not functioning properly). My situation is I've had ET for 6 years,...

Does anyone know anything about haemolytic anaemia? (It's the result of red bloo...

Joetcalr

•2 years ago

10 Replies

Fourth jab

Finally got my fourth jab today. After going to the GP, they said it was nothing to do with them and had to go through my consultant. So emailed haematology...

Finally got my fourth jab today. After going to the GP, they said it was nothi...

Penny-10

•2 years ago

17 Replies

essential thrombocythemia and hip replacement surgery

Hello everyone, I'm writing on behalf of my 75 year-old mum. She was diagnosed with ET in October and is on chemo pills for it. Her platelets have come down...

Hello everyone, I'm writing on behalf of my 75 year-old mum. She was diagnosed w...

Duck33

•2 years ago

20 Replies

Covid Anti-viral Treatment - Scotland

I have PV and am on Hydroxycarbamide. I tested positive for Covid on Tuesday:( Symptoms so far are flu like; cough, runny nose, sore head and neck, fatigue. I...

I have PV and am on Hydroxycarbamide. I tested positive for Covid on Tuesday:( S...

Clara_Bella

•2 years ago

4 Replies

Can any one give a simple summery of this article please

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6950045/#!po=44.8454 It’s regarding effect of mushrooms on platelets . To complicated for me!!!

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6950045/#!po=44.8454 It’s regardin...

Mostew

•2 years ago

9 Replies

Shortness of breath/breathing issues PV

Hi everyone. I am waiting on more tests to confirm Polycythemia Vera. I see from all my research a symptom is breathing issues. Over 20 years ago I was...

Hi everyone. I am waiting on more tests to confirm Polycythemia Vera. I see from...

LittleLuna

•2 years ago

21 Replies

Webinar re. MPN Clinical Trials as an Option

Should you consider an MPN clinical trial? In this webinar, Dr. Ruben Mesa will provide an overview of clinical trials—including the phases—and define common...

Should you consider an MPN clinical trial? In this webinar, Dr. Ruben Mesa will ...

hunter5582

•2 years ago

10 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for March 2022

MPN 10 Scale

Skin cancer and hydroxyurea

Covid isn’t that bad after all

Clinical Trail Updates for Patients

Help is on the way! I discovered MPN Voice back in mid Jan. I was actually thinking a platelet count of 760 was ok, since I had no symptom

Pneumonia With ET

Positive result covid

Gp says I don't have blood cancer and can't have 4th covid jab

Interferon possible side effects

Monthly blog dedicated to young people living with MPNs - Alice’s sixth blog: Why do we have MPNs?

Loud rumbling tinnitus

Migraines and Besremi?

By 5 years, about 14% of patients have undetectable JAK2 mutations.

Cost of Interferon Alfa 2a

Success

I’m new here!

Blood test results

NHS letter re COVID antiviral treatments

Instow1

Bone Marrow Biopsy Experience

Hair loss from HU

Bone pain and chills follow-up

Is there a world outside of Hydroxycarbamide for PV?

Haemolytic anaemia

Fourth jab

essential thrombocythemia and hip replacement surgery

Covid Anti-viral Treatment - Scotland

Can any one give a simple summery of this article please

Shortness of breath/breathing issues PV

Webinar re. MPN Clinical Trials as an Option

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