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MPN Voice

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All posts for November 2019

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Is there anyone on here who lives in Northern Ireland, I'd be very keen to chat with anyone close to home here. Simris x

Is there anyone on here who lives in Northern Ireland, I'd be very keen to chat ...

Simris

•5 years ago

3 Replies

Hydroxyurea concerns

Hello, I am triple negative. My doc advised me to take asprin initially. Now with the latest report my platelets have almost touched 1 M. He has advised to...

Hello, I am triple negative. My doc advised me to take asprin initially. Now wit...

Orangemusic

•5 years ago

25 Replies

THE EVOLUTION OF HUMANITY & IMMUNE RELATED DISEASES

Post by MPN-MATE Admin » Sat Nov 30, 2019 2:11 am Hey everyone... :D Not sure that all of you might find this of interest, however I did, so here it is......

Post by MPN-MATE Admin » Sat Nov 30, 2019 2:11 am Hey everyone... :D Not sure...

socrates_8

•5 years ago

4 Replies

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Good evening, This may be a long shot but worth it if anyone can help me. I live in northern ireland and recently diagnosed with ET, I would be very keen to...

Good evening, This may be a long shot but worth it if anyone can help me. I live...

Simris

•5 years ago

7 Replies

Coventry Haematology

I am about to change my address from Leicestershire to A small village just outside Coventry, Post Code CV7. I may have to change my consultant, does anyone...

I am about to change my address from Leicestershire to A small village just outs...

shiftzz

•5 years ago

9 Replies

Yearly healthcare charges

Hi. I wanted to know what are the yearly estimated healthcare charges for ET patients in the UK, USA and Canada.

Hi. I wanted to know what are the yearly estimated healthcare charges for ET pat...

DamnYouEt

•5 years ago

8 Replies

Inrebic and myelofibrosis

As some of you know, I changed hematologists in September and found out my ET had finally progressed to MF. 🙁 My new doctor prescribed Inrebic and for the...

As some of you know, I changed hematologists in September and found out my ET h...

Cja1956

•5 years ago

9 Replies

Hydroxyurea Question

I have been on Hydroxyurea for about 9 months and things seemed great until recently. Good news: platelets dropped from 1M to 350K. Bad news: my red and white...

I have been on Hydroxyurea for about 9 months and things seemed great until rece...

MJL1977

•5 years ago

26 Replies

? ET

Is jak 2 negative a good sign ?

glyndale

•5 years ago

7 Replies

Burning Mouth Syndrome

Has anybody else suffered from burning red sore lips? Is this a reaction from Hydroxyurea? I have just been prescribed the generic version because of the...

Has anybody else suffered from burning red sore lips? Is this a reaction from H...

dladydi

•5 years ago

23 Replies

Hydroxy to Pegasys switch

Hello - couldn’t find this on a search and wonder if you can help. Here’s the context: Partner is 33, ET triple negative with acquired Von willebrand on 1.5mg...

Hello - couldn’t find this on a search and wonder if you can help. Here’s the co...

intothewoods

•5 years ago

13 Replies

Can you take vitamins while taking Hydra medication?

Hi , I’m new to the group, signed in today. Looking forward to being part of community.

Hi , I’m new to the group, signed in today. Looking forward to being part of com...

Lorrmac

•5 years ago

15 Replies

BESREMi Ropeginterferon alfa-2b is available in Austria and Germany

After hearing very encouraging information regarding effectiveness of BESREMi Ropeginterferon alfa-2b from the doctor in my local clinic (based on clinical...

After hearing very encouraging information regarding effectiveness of BESREMi Ro...

Alexbits

•5 years ago

6 Replies

?ET

Well had a chest ray normal. abdominal scan small gallstone .All bloods nothing found apart from raised platelets still ..only symptom is tiredness.so still...

Well had a chest ray normal. abdominal scan small gallstone .All bloods nothing ...

glyndale

•5 years ago

4 Replies

Laser hair removal

Hi all. Does anyone know if it's a risk to have laser hair removal while taking Hydroxycarbamide, for ET? Thanks

Hi all. Does anyone know if it's a risk to have laser hair removal while taking ...

Kesslerkev2711

•5 years ago

4 Replies

Dr Silver update re PV/MF and Interferons

https://youtu.be/XGEAlov50mY Well worth watching. Dr Silver has used INF as first choice line of attack for over 20 years, hence significant experience re...

https://youtu.be/XGEAlov50mY Well worth watching. Dr Silver has used INF as firs...

Paul123456

•5 years ago

10 Replies

Combined antiplatelet and anticoagulant therapy for ET clot prevention.

Hi All, Has anyone had experience with combination therapy for prevention of clots with ET or PV? I was switched from Clopidogrel to Apixaban after a suspected...

Hi All, Has anyone had experience with combination therapy for prevention of clo...

SilverET

•5 years ago

7 Replies

Hens teeth, aggressive sarcomatoid sccs and ruxolitinib

Hi. I’ve just been informed that that the sarcomatoid scc that I’d had excised from my cheek on Nov 6 th was indeed a recurrence of the same type that I’d...

Hi. I’ve just been informed that that the sarcomatoid scc that I’d had excised ...

Rachelthepotter

•5 years ago

24 Replies

Once a week recombinant interferon injections

This is interesting ... I was having 3 x standard interferon injections per week and stopped taking it for 5 weeks when I couldn't handle the side effects any...

This is interesting ... I was having 3 x standard interferon injections per week...

fee13

•5 years ago

4 Replies

MF review article : Treatment options 2019

Hi. This is a very clear summary of treatment options. Just google MF and Ruxolitinib , and the article summary comes up. You can also print off a PDF of the...

Hi. This is a very clear summary of treatment options. Just google MF and Ruxol...

Rachelthepotter

•5 years ago

1 Reply

Et progression to mf and bone marrow biopsy.

Hi, I'm 49 and have et ( jak2 pos) for 7yrs. Been on hydroxycarbamide and anagrelide ,but transferring to interferon. Diagnosed with mf this week and very...

Hi, I'm 49 and have et ( jak2 pos) for 7yrs. Been on hydroxycarbamide and anagre...

soomoo

•5 years ago

15 Replies

Blood Pressure

have many patients had blood pressure problems since being diagnosed with PV and MPN also when taking Ruxolitinib

have many patients had blood pressure problems since being diagnosed with PV and...

waddles22

•5 years ago

2 Replies

Suggestions for help for insomnia?

These days, as long as I get 9-12 hours of sleep, the rest of the day I’m quite energetic! For that, I am deeply thankful. But... I will sometimes lie in bed...

These days, as long as I get 9-12 hours of sleep, the rest of the day I’m quite ...

ChattyPanda

•5 years ago

31 Replies

Cataract Operation / Lens Implant

Has anyone had a cataract operation, lens implant. I assume it’s ok to have this op while having an MPN, the eye surgeon didn’t know about MPNs. I have ET...

Has anyone had a cataract operation, lens implant. I assume it’s ok to have this...

Raphael_UK

•5 years ago

21 Replies

JAK2+that its primary & secondary PV plus pseudo

I was diagnosed with JAK2 + PV 4 weeks ago after having a heart attack. My Haemoglobin is 169 and Haematocrit is 54. I'm starting 1 -2 venesections a week....

I was diagnosed with JAK2 + PV 4 weeks ago after having a heart attack. My Haemo...

Beingpositive121

•5 years ago

4 Replies

That unrelenting bone pain

It's been a bad day for my bone pain and that is with my pain medication that was helping me so much just a couple months ago. I was supposed to work tonight...

It's been a bad day for my bone pain and that is with my pain medication that wa...

clubdino

•5 years ago

37 Replies

WEIGHT GAINS WITH JAKAFI

Post by MPN-MATE Admin » Sat Nov 23, 2019 9:53 pm Hey guys... :D As someone who is taking Ruxolitinib, I found this paper's frank admissions rather...

Post by MPN-MATE Admin » Sat Nov 23, 2019 9:53 pm Hey guys... :D As someone ...

socrates_8

•5 years ago

8 Replies

Diagnosis and Management of Polycythaemia Guidelines

The British Society for Haematology published new guidelines in November 2018. My haematologist told me at the time and I am posting the link here so people...

The British Society for Haematology published new guidelines in November 2018. M...

PVPVPV

•5 years ago

2 Replies

I can listen 😊

And we all understand 😍

Sand-Dancer

•5 years ago

5 Replies

MF transplant - successful stem cell boost

Hi All, Last year I wrote a few posts about my first transplant (MUD) to treat myelofibrosis. It failed to engraft so we tried a second transplant (HAPLO). It...

Hi All, Last year I wrote a few posts about my first transplant (MUD) to treat m...

Simon96

•5 years ago

53 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for November 2019

Contact

Hydroxyurea concerns

THE EVOLUTION OF HUMANITY & IMMUNE RELATED DISEASES

Contact

Coventry Haematology

Yearly healthcare charges

Inrebic and myelofibrosis

Hydroxyurea Question

? ET

Burning Mouth Syndrome

Hydroxy to Pegasys switch

Can you take vitamins while taking Hydra medication?

BESREMi Ropeginterferon alfa-2b is available in Austria and Germany

?ET

Laser hair removal

Dr Silver update re PV/MF and Interferons

Combined antiplatelet and anticoagulant therapy for ET clot prevention.

Hens teeth, aggressive sarcomatoid sccs and ruxolitinib

Once a week recombinant interferon injections

MF review article : Treatment options 2019

Et progression to mf and bone marrow biopsy.

Blood Pressure

Suggestions for help for insomnia?

Cataract Operation / Lens Implant

JAK2+that its primary & secondary PV plus pseudo

That unrelenting bone pain

WEIGHT GAINS WITH JAKAFI

Diagnosis and Management of Polycythaemia Guidelines

I can listen 😊

MF transplant - successful stem cell boost

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