Posts - MPN Voice | HealthUnlocked

MPN Voice

10,832 members•15,125 posts

All posts for January 2020

CRISR CAS 9 gene editing tool and polycythemia Vera JAK 2 positive

Hello , I wanted to know if anyone had any recent updates about using the CRISPR CAS 9 gene editing tool to address jak 2 positive Polycythemia Vera. Are there...

Hello , I wanted to know if anyone had any recent updates about using the CRISPR...

Iwillwin123

•5 years ago

5 Replies

High platelets essential thrombocytosis

So been to see haematologist today Pointless exercise- all bloods normal but jak2 mutation still outstanding. He said if its essential thrombocytosis I will...

So been to see haematologist today Pointless exercise- all bloods normal but ja...

Irishgal12

•5 years ago

78 Replies

ET Medication

Hi all . I have started taking Hydroxyurea for the past 10 days. I was ok till 2 days back. I have developed a purple colour skin patch in my hand and legs...

Hi all . I have started taking Hydroxyurea for the past 10 days. I was ok till 2...

Orangemusic

•5 years ago

7 Replies

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Platelet count high

Platelet count had been around 450- above 600 since 2017. My doctor has referred me to a Haematologist what could be causing this? I only found out today....

Platelet count had been around 450- above 600 since 2017. My doctor has referred...

TiffSmith27

•5 years ago

6 Replies

How bad does your speech get?

I was diagnosed with PV Jak2+ in 2015 after going to my GP (many times) because of exhaustion, numbness in my feet and slurry speech. I was put on Hydroxy...

I was diagnosed with PV Jak2+ in 2015 after going to my GP (many times) because ...

jillydabrat

•5 years ago

10 Replies

Elevated platelets

I've been having 440-474 platelets for 2 years now. That I know of. I went to a hematologist last year and they said they thought it was from a tooth infection...

I've been having 440-474 platelets for 2 years now. That I know of. I went to a ...

Alhf

•5 years ago

12 Replies

New cell discovery

Hi guys. Have you heard about the new discovery?...

Kelly2

•5 years ago

19 Replies

Starting Hydroxie today

How long did you wait before your first blood test after beginning hydroxie? I have been given 500mg x 1 per day and told to have a blood test after 3 weeks....

How long did you wait before your first blood test after beginning hydroxie? I h...

harleydavidson

•5 years ago

32 Replies

Anagrelide and heart palpitations

I have ET and changed meds from hydroxy my Dr. put me on anagrelide. I had palpitations for a month before I had an episode at his office.. He changed me back...

I have ET and changed meds from hydroxy my Dr. put me on anagrelide. I had palp...

Hidden

•5 years ago

1 Reply

Teleconsultations

I have just had my regular heamo appointment after being on Pegasys for 6 weeks. My consultant has left , ( 3rd one in a year! ) My platelets are still in the...

I have just had my regular heamo appointment after being on Pegasys for 6 weeks....

swimswam

•5 years ago

37 Replies

New treatment options

https://www.targetedonc.com/news/expert-highlights-benefits-of-fedratinib-in-subgroup-of-patients-with-myelofibrosis Mesa: It’s an exciting time in MPNs...

https://www.targetedonc.com/news/expert-highlights-benefits-of-fedratinib-in-sub...

Paul123456

•5 years ago

16 Replies

Sending Love

Dear Phelpsy I am so very sad,and shocked to read of Lesleys passing.I never got to meet her though did contact her as she was from the same part of the...

Dear Phelpsy I am so very sad,and shocked to read of Lesleys passing.I never got...

ansaseeker

•5 years ago

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Et and Rash

I am 68 yr old man and have had ET for 20 years and have been on Hydroxy for 17 of them. I have had a rash for 5 or 6 years on my face sometimes hardly...

I am 68 yr old man and have had ET for 20 years and have been on Hydroxy for 17 ...

goldenvision

•5 years ago

5 Replies

Lesley aka Sand Dancer 💃🏻

Hi Everyone, I realise that the passing of Lesley has been posted by her friend in Newcastle. Lesley and I became great friends and I will miss her Hugely more...

Hi Everyone, I realise that the passing of Lesley has been posted by her friend ...

pontygirl

•5 years ago

62 Replies

Dangers of turmeric

Hi Everyone, a couple of the people I buddy have asked me if I take a turmeric supplement. The answer is no. Please read info posted online by the Roger Cancer...

Hi Everyone, a couple of the people I buddy have asked me if I take a turmeric s...

Loubprv

Volunteer•5 years ago

20 Replies

Getting an et diagnosis

Hello to all, just wondering if anyone had an et diagnosis without having a bone marrow biopsy , I’m told I need one for diagnosis but I’m just too scared to...

Hello to all, just wondering if anyone had an et diagnosis without having a bone...

Dbh1962

•5 years ago

27 Replies

Post-ET MF

I had ET a few years ago - now I have MF, which my Hematologists tells me is a 'Post- ET MF', not a PMF. But my platelet count is now quite normal. Should...

I had ET a few years ago - now I have MF, which my Hematologists tells me is a '...

kis1ky51

•5 years ago

4 Replies

Very Sad News 🩸

Our Beautiful Lesley lost her Battle after a short illness this week She will be sadly missed by all her Family & Friends , x Our Blood Sister has gained her...

Our Beautiful Lesley lost her Battle after a short illness this week She will ...

Phelpsy

•5 years ago

75 Replies

Skin burning and tearing feeling when stretching skin

For the last few months my skin is becoming increasingly sensitive. When I crouch down, for example, I feel that the skin on my buttocks, thighs and knees is...

For the last few months my skin is becoming increasingly sensitive. When I crouc...

Anag

•5 years ago

16 Replies

Feeling better after 4 weeks phlebotomy.

To all my helpful friends out there. I can say I am feeling a bit better my hemacrit started at 59 I'm down to 49 after 4 weeks. I am due for a blood draw...

To all my helpful friends out there. I can say I am feeling a bit better my hema...

josup26

•5 years ago

15 Replies

Raised platelets

Hello a quick question, currently undergoing tests, all negative apart from raised platelets am awaiting a bone marrow biopsy ,but my consultant has suggested...

Hello a quick question, currently undergoing tests, all negative apart from rais...

glyndale

•5 years ago

16 Replies

Hydrea Query

Just wondering if anyone has had abnormal liver function resuls while being on Hydrea? My platelets quickly dropped, but liver function enzymes elevated

Just wondering if anyone has had abnormal liver function resuls while being on H...

Patsyok

•5 years ago

9 Replies

Hu journey

After my last posting I've taken a break from social media.just to reboot myself as they say. Happy to say I'm feeling alot more positive and after my results...

After my last posting I've taken a break from social media.just to reboot myself...

heathermc

•5 years ago

4 Replies

New Need Advice please

Hello, I am new here and so confused. I saw a hematologist in October due to swollen lymph nodes and high eosinophils he ordered bone marrow biopsy. Which came...

Hello, I am new here and so confused. I saw a hematologist in October due to swo...

chefwife8

•5 years ago

9 Replies

Was smomo !

I got muddled as had two email accounts and then muddled with password . Seems I couldn’t use same one for some reason So I’m interested in people...

I got muddled as had two email accounts and then muddled with password . Seems I...

Mostew

•5 years ago

5 Replies

Anti inflammatory diet and PV

I read a post about an anti inflammatory diet prolonging your life if you have MF. Is the same true for PV? Why has my MD not said anything?

I read a post about an anti inflammatory diet prolonging your life if you have M...

Emser

•5 years ago

13 Replies

Essential thrombocytosis

Sorry it's me again Saw my gp today and I noticed in my notes it says essential thrombocytosis I asked him and he said this is what we thought but we sent a...

Sorry it's me again Saw my gp today and I noticed in my notes it says essential...

Irishgal12

•5 years ago

43 Replies

Pregabalin

Hello all First of all hope you are all doing ok. Has anyone with an MpN been prescribed Pregabalin for muscle spasms. I have been suffering from a lot of back...

Hello all First of all hope you are all doing ok. Has anyone with an MpN been pr...

Judypinner

•5 years ago

17 Replies

platelets

I had a physical exam and my platelets came back 447, the doctor retested it and they came back 417 is this cause for concern

I had a physical exam and my platelets came back 447, the doctor retested it and...

sral

•5 years ago

6 Replies

Long term Remission

Is there anyone here got long term remission? Like more than 7-8 years?

Aby1990

•5 years ago

22 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for January 2020

CRISR CAS 9 gene editing tool and polycythemia Vera JAK 2 positive

High platelets essential thrombocytosis

ET Medication

Platelet count high

How bad does your speech get?

Elevated platelets

New cell discovery

Starting Hydroxie today

Anagrelide and heart palpitations

Teleconsultations

New treatment options

Sending Love

Et and Rash

Lesley aka Sand Dancer 💃🏻

Dangers of turmeric

Getting an et diagnosis

Post-ET MF

Very Sad News 🩸

Skin burning and tearing feeling when stretching skin

Feeling better after 4 weeks phlebotomy.

Raised platelets

Hydrea Query

Hu journey

New Need Advice please

Was smomo !

Anti inflammatory diet and PV

Essential thrombocytosis

Pregabalin

platelets

Long term Remission

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