Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for March 2018

ET and Hydroxycarbomide Therapy. Questions from New Member to Forum.

Hi I'm new to the site, diagnosed with ET JAK2 few days ago. Haematology want me to start taking Hydroxy. Refused at present, having Marrow Biopsy soon....

Hi I'm new to the site, diagnosed with ET JAK2 few days ago. Haematology want me...

pontygirl

•6 years ago

76 Replies

Jakafi scare - MPN Research Foundation reply

Received this by email: The MPN community is discussing the article by MPN researchers from MD Anderson - Clonal evolution and outcomes in myelofibrosis after...

Received this by email: The MPN community is discussing the article by MPN resea...

Paul123456

•6 years ago

9 Replies

Update on Blood Book - Patient held records

Hi The project at GSTT for a booklet that will enable us to have our blood results recorded in one place, so that we can take them with us from hospital to...

Hi The project at GSTT for a booklet that will enable us to have our blood res...

Rachelthepotter

•6 years ago

7 Replies

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Next Generation DNA sequencing tests

Hi, I was wondering if many people have had their blood tested for several of the mutations that might drive progression and what their...

Hi, I was wondering if many people have had their blood tested for several of t...

Timjonze

•6 years ago

17 Replies

Yellow skin

Hi All, I woke up this morning and noticed my skin has gone slightly yellow in colour. I wondered if anyone has experienced the same? About once a year I seem...

Hi All, I woke up this morning and noticed my skin has gone slightly yellow in c...

MarkD6701

•6 years ago

7 Replies

Should we be worried about this article in MPN Forum RE. Jakafi drug ????

Hi everyone! I hope that you are all as well as can be out there! I don't want to worry anyone but I wondered if someone could shed some light on this article...

Hi everyone! I hope that you are all as well as can be out there! I don't want ...

chelsea1

•6 years ago

3 Replies

Interesting transcript interview with Dr Silver

He is very pro early Interferon if you don’t get that from interview! In other Presentations, he has said he expects a progression stopping drug will be...

He is very pro early Interferon if you don’t get that from interview! In other P...

Paul123456

•6 years ago

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Fedratinib

This webcast from January. Fedratinib was successful trialed as a JAK2 inhibitor and possibly could have been of great benefit to patients who didn’t respond...

This webcast from January. Fedratinib was successful trialed as a JAK2 inhibitor...

Paul123456

•6 years ago

4 Replies

Anyone with P Vera taking dagabitran rather than warfarin?

Hi I have P Vera diagnosed oct 2016 . H/O DVT and PE 10 montgs prior to diagnosis and was on rivaroxiban following thrombolytic events . When i got diagnosed...

Hi I have P Vera diagnosed oct 2016 . H/O DVT and PE 10 montgs prior to diagno...

Dianne-Guisborough

•6 years ago

11 Replies

Meds

Has anyone ever gone off hydroxy periodically I’m jak positive and would like a break from meds nce in a while.

Has anyone ever gone off hydroxy periodically I’m jak positive and would like ...

Petsch

•6 years ago

7 Replies

MOMBAT Methotrexate PV Trial

Now looking like recruitment pre YE. Think they are seeking 100 HU intolerant/resistant and will compare with best in class. This article from 2017...

Now looking like recruitment pre YE. Think they are seeking 100 HU intolerant/re...

Paul123456

•6 years ago

8 Replies

Any natural remedies

Hello all Just thinking about ways to fight this condition (ET JAK neg) and wondered if anyone has tried alternative therapies and if so, what with and how...

Hello all Just thinking about ways to fight this condition (ET JAK neg) and wond...

JaynieQ

•6 years ago

9 Replies

Travelling abroad

Hello,Am travelling to the US for 5wks soon & need advice. PV diagnosed last April.On my last visit to Consultant,he decided I needed one more venesection next...

Hello,Am travelling to the US for 5wks soon & need advice. PV diagnosed last Apr...

keviekevstar

•6 years ago

2 Replies

Should I start taking Hydroxycarbamide?

Hi - my first post on this excellent forum... I have ET Jak2+ , diagnosed 6 years ago. On baby aspirin, platelets quite stable around 600. Approaching the big...

Hi - my first post on this excellent forum... I have ET Jak2+ , diagnosed 6 yea...

rdevans

•6 years ago

12 Replies

Feeling blurgh!

Hi everyone I hurt all over, have a thumping headache & am so tired I can hardly get out of bed today. I'm getting the results of my blood tests for suspected...

Hi everyone I hurt all over, have a thumping headache & am so tired I can hardly...

Vicky_b

•6 years ago

9 Replies

ET - a blood cancer or not? Serious or not? Conflicting info....??

Hi - I am 47, and have been diagnosed with ET. Unbeknownst to me, my platelet count has been rising for the last 4 years, and this last January was in the low...

Hi - I am 47, and have been diagnosed with ET. Unbeknownst to me, my platelet co...

JenngeetingR828

•6 years ago

38 Replies

ET woes

Hi :-) Im new to this forum so hello! I was diagnosed with ET Jack2 mutation in October 17. It has been a huge journey as didnt know anything about condition...

Hi :-) Im new to this forum so hello! I was diagnosed with ET Jack2 mutation in ...

samwoolrich

•6 years ago

10 Replies

JAK2 negative

JAK2 result came back negative (phew!). I saw my immunologist last week and she thinks the polycythemia is being caused by the steroids I am taking and wants...

JAK2 result came back negative (phew!). I saw my immunologist last week and she ...

Curlygal

•6 years ago

10 Replies

Secondary Erythrocytosis

I have been diagnosed with secondary erythrocytosis. My gp said I had polychemia Vera. I’m seeing the haemotologist in April but I’m confused. Anybody clear...

I have been diagnosed with secondary erythrocytosis. My gp said I had polychemia...

Kwebb

•6 years ago

6 Replies

MPN 101 video

Hi All, While watching various videos, thanks to references this week from Fiona, Mary and Paul, came across the YouTube video... MPN Horizons 2017 MPN 101...

Hi All, While watching various videos, thanks to references this week from Fiona...

Simon96

•6 years ago

10 Replies

Manchester

Having being diagnosed with ET Jak 2 positive last August and only now come to terms with this uphill challenge, I would like to know if there is a support...

Having being diagnosed with ET Jak 2 positive last August and only now come to t...

MaggieMagpie49

•6 years ago

24 Replies

Pegasys Dosing

Hi All, So after having platelets hovering around the 1500 mark for a year the interdisciplinary team at my hospital trust has finally got nervous and...

Hi All, So after having platelets hovering around the 1500 mark for a year the i...

Joerp

•6 years ago

10 Replies

Report from the Platelet Factory. Battle Damage, production slowing! 2 weeks of Hydroxyurea.

The production line for wonky platelets had been thundering along at full steam ahead for a number of months and the grimy windows of the old factory building...

The production line for wonky platelets had been thundering along at full steam ...

stillkicking

•6 years ago

30 Replies

Coq10

Coq10 statin and hydroxy I take a statin and hydroxy. Is it ok to take coq10 and if so when

Coq10 statin and hydroxy I take a statin and hydroxy. Is it ok to take coq10 ...

Petsch

•6 years ago

14 Replies

How long

How long between your first appointment with the hematologist and your diagnosis? My GP has done 3 blood tests and my red cell count has remained the same for...

How long between your first appointment with the hematologist and your diagnosis...

Pvera

•6 years ago

8 Replies

Promising results for MF Trial - Pacritinib

https://jamanetwork.com/journals/jamaoncology/fullarticle/2674384 A trial comparing pacritinib daily dose of 400mg versus pacritinib daily 2 x 200mg versus...

https://jamanetwork.com/journals/jamaoncology/fullarticle/2674384 A trial compar...

Paul123456

•6 years ago

1 Reply

Video re progression

Interferon appears only drug that might slow progression but some people can have severe side effects. Ropeginterferon, which hopefully will be available next...

Interferon appears only drug that might slow progression but some people can hav...

Paul123456

•6 years ago

2 Replies

Pegasisy

Hi Everyone, am diagnosed with Hepatitis B 2 years back. I started Pegasisy injection Last year September and I take every week, 3 weeks later I was told by...

Hi Everyone, am diagnosed with Hepatitis B 2 years back. I started Pegasisy inje...

Happy85888

•6 years ago

2 Replies

Critical Illness Insurance

Hi, about 6 weeks ago I read a couple of posts on here from people with MPN who had successfully claimed on their critical illness insurance. I was diagnosed...

Hi, about 6 weeks ago I read a couple of posts on here from people with MPN who ...

Lezza1971

•6 years ago

5 Replies

Is bone marrow biopsy necessary?

Hi Everyone, I was diagnosed with ET after Jak 2 positive and a platelet count of neat 1 million. November 30th I had a heart attack and everyone in the...

Hi Everyone, I was diagnosed with ET after Jak 2 positive and a platelet count o...

mbr8076

•6 years ago

33 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for March 2018

ET and Hydroxycarbomide Therapy. Questions from New Member to Forum.

Jakafi scare - MPN Research Foundation reply

Update on Blood Book - Patient held records

Next Generation DNA sequencing tests

Yellow skin

Should we be worried about this article in MPN Forum RE. Jakafi drug ????

Interesting transcript interview with Dr Silver

Fedratinib

Anyone with P Vera taking dagabitran rather than warfarin?

Meds

MOMBAT Methotrexate PV Trial

Any natural remedies

Travelling abroad

Should I start taking Hydroxycarbamide?

Feeling blurgh!

ET - a blood cancer or not? Serious or not? Conflicting info....??

ET woes

JAK2 negative

Secondary Erythrocytosis

MPN 101 video

Manchester

Pegasys Dosing

Report from the Platelet Factory. Battle Damage, production slowing! 2 weeks of Hydroxyurea.

Coq10

How long

Promising results for MF Trial - Pacritinib

Video re progression

Pegasisy

Critical Illness Insurance

Is bone marrow biopsy necessary?

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