Posts - MPN Voice | HealthUnlocked

MPN Voice

10,784 members • 14,980 posts

All posts for June 2018

Missed diagnosis

Hi I was diagnosed with PV JAK 2 positive last year 2017 and was glad to find this site as despite being a health professional I knew nothing about MPN. Is it...

Hi I was diagnosed with PV JAK 2 positive last year 2017 and was glad to find th...

Jackgirl10

•6 years ago

5 Replies

Three day headaches.

In the past 4-6 weeks I have had 3 headaches that have lasted at least 3 days, the last one was 5 days and felt switched off mentally for about 2 days after...

In the past 4-6 weeks I have had 3 headaches that have lasted at least 3 days, t...

Mica11

•6 years ago

12 Replies

GVHD

This looks potentially very interesting https://lymphomanewstoday.com/2018/05/07/baricitinib-shows-potential-prevent-gvhd-mouse-study/ Best wishes to all

This looks potentially very interesting https://lymphomanewstoday.com/2018/05/0...

beetle

•6 years ago

5 Replies

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2 questions: Dizzy at certain times, and disability insurance?

Hello! Recently diagnosed with ET jak2 mutation a month before a major surgery which I am currently recouping from. I am 52 Female, residing in California,...

Hello! Recently diagnosed with ET jak2 mutation a month before a major surgery w...

elisabetwhite

•6 years ago

6 Replies

ET symptoms?

Hi all, I’m ET JAK2+ with stable platlet counts between 500/600 and on daily aspirin only. I work full time and have been off now for a week mainly due to...

Hi all, I’m ET JAK2+ with stable platlet counts between 500/600 and on daily asp...

ET30

•6 years ago

10 Replies

Good report on Ruxolitinib

https://globenewswire.com/news-release/2018/06/15/1525038/0/en/Novartis-study-of-real-world-data-concludes-Jakavi-is-associated-with-a-reduction-in-risk-of-deat

https://globenewswire.com/news-release/2018/06/15/1525038/0/en/Novartis-study-of...

Graham7694

•6 years ago

7 Replies

EMA approval for ropeginterferon alpha2b?

Hi, I found a article dated 11/06 on businesswire.com with the headline : AOP Orphan Announces Progress of its European Marketing Authorization Procedure of...

Hi, I found a article dated 11/06 on businesswire.com with the headline : AOP O...

JohnSC

•6 years ago

2 Replies

PV symptoms

My oncologist told me that my fatigue is "impossible " because all my labs are within normal limits. Is this true? If so, why do I battle this fatigue daily?...

My oncologist told me that my fatigue is "impossible " because all my labs are w...

MaryELWoods

•6 years ago

25 Replies

Blobs!

I am triple neg E.T. and am on Hydroxy. 500mg Mon to Fri and 1,000mg Sat and Sun. Last week small red 'blobs' started to appear on my legs which then seemed to...

I am triple neg E.T. and am on Hydroxy. 500mg Mon to Fri and 1,000mg Sat and Sun...

nodmeister

•6 years ago

3 Replies

Holby City

I was watching Holby City and for the first time I saw platelets mentioned. Well not actually spoken of but shown on a report - one patient had them in the...

I was watching Holby City and for the first time I saw platelets mentioned. Well...

lizzziep

•6 years ago

2 Replies

Hydroxy intolerant - Pegylated Interferon next?

I am just wondering if I should try Pegylated Interferon because I have been so debilitated by the hydroxy and fed up of my haema telling me it's nothing to do...

I am just wondering if I should try Pegylated Interferon because I have been so ...

JackLina

•6 years ago

8 Replies

Protection

I have PV and taking Hydrocarbomide. Saw my GP today and he said you have to use protection to avoid pregnancy, whilst on this medication. If there is no...

I have PV and taking Hydrocarbomide. Saw my GP today and he said you have to use...

Jeftheref

•6 years ago

1 Reply

Back in hospital in France

We were planning to return to Wales this weekend but my wife's temp went ballistic today so she is in hospital again. Having blood tests, four little bottles...

We were planning to return to Wales this weekend but my wife's temp went ballist...

jointpain

•6 years ago

22 Replies

Retirement.. Hoping for lower platelets!

Retirement.. haven't posted for a while.. things have been fairly stable. I'm due to retire in 4 days time.. age 54 but I need to take care of myself and enjoy...

Retirement.. haven't posted for a while.. things have been fairly stable. I'm du...

heathermc

•6 years ago

9 Replies

RBC heading towards normal

PV isn't all about numbers. Sometimes we feel happy with seeing light at the end of a long dark tunnel. Since diagnoses, 2 years ago, my RBC's have been...

PV isn't all about numbers. Sometimes we feel happy with seeing light at the end...

EleanorPV

•6 years ago

11 Replies

Iron injection????

Hello, I'm JAK2+ with ET for 16 years. Had two liver transplants following clotting episodes. Currently I'm in hospital and my hepatologist has prescribed an...

Hello, I'm JAK2+ with ET for 16 years. Had two liver transplants following clott...

Karol_Rua

•6 years ago

5 Replies

MPN JAK2+ some results today from the hematologist here in France

The surgeon that removed my wife's spleen on the 2 may saw us on Friday to check she was doing well. He is a very nice man. He phoned the hematologist to check...

The surgeon that removed my wife's spleen on the 2 may saw us on Friday to check...

jointpain

•6 years ago

8 Replies

Thought for our daily water intake

Afternoon folks, my daughter has purchased one of these sets of bottles I had something similar, but this makes drinking water so much more fun, it has two...

Afternoon folks, my daughter has purchased one of these sets of bottles I had s...

Superwoman

•6 years ago

6 Replies

9 weeks postpartum, ET CalR+ and have some questions.

I have ET CalR+, was diagnosed in 2013 when I was 31. I was started in low dose aspirin but it didn’t really agree with me to I was on no medication until I...

I have ET CalR+, was diagnosed in 2013 when I was 31. I was started in low dose ...

Vicki_02

•6 years ago

4 Replies

Newly diagnosed with Myelofibrosis

My husband was recently diagnosed with myelofibrosis jak2 negative. We are being referred to Mayo clinic. At present he feels fine. Just wondering what they...

My husband was recently diagnosed with myelofibrosis jak2 negative. We are bein...

7jborud

•6 years ago

7 Replies

Peg results

Evening all! So I had my first blood count since starting on Peg (4 weeks) and I have to say I’m delighted! My platelets have dropped from 1073 to 800!...

Evening all! So I had my first blood count since starting on Peg (4 weeks) and...

Mackydee123

•6 years ago

14 Replies

IMMUNOTHERAPY

Has anyone read of the new research and even cure of a breast cancer patient in her last stage using immunotherapy? Very encouraging news! Think it will be...

Has anyone read of the new research and even cure of a breast cancer patient in ...

Kelly2

•6 years ago

8 Replies

bone marrow biopsy

hi, I had my 4th bone marrow biopsy this week. I finally asked for light sedation but understood they had to double it even though I was not OUT. I endured...

hi, I had my 4th bone marrow biopsy this week. I finally asked for light sedatio...

trailwalker10

•6 years ago

7 Replies

Lilly1958

Hi my MPN friend, lot happening from my last 3-4 month. I have Et for 26 years only on aspirin and platets was 400-500, but after holidej (long flight) my hct...

Hi my MPN friend, lot happening from my last 3-4 month. I have Et for 26 years ...

Lilly1958

•6 years ago

4 Replies

Claiming ET on critical illness insurance

Anyone in the USA able to make a claim on critical illness insurance for ET?

Jbone636

•6 years ago

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Healthy pee is 1 to 3 , 4 to 8 you must hydrate!

While waiting in the dicharge lounge ( sensibly not called the departure lounge) of the Somerset hospital to be taken home after my recent admission for what...

While waiting in the dicharge lounge ( sensibly not called the departure lounge...

Rachelthepotter

•6 years ago

10 Replies

Enlarged liver

I was diagnosed with myelofibrosis 4 years ago and am on Ruxolitinib 25 mg daily. Had it reduced some time ago to see if the dose was tied into the rising alt...

I was diagnosed with myelofibrosis 4 years ago and am on Ruxolitinib 25 mg daily...

Cazbolac

•6 years ago

4 Replies

Child with PV

Hello, I am new on here! My son was diagnosed with Jak2 PV last August aged 14. Is there any other parent or child on this for who might have PV?

Hello, I am new on here! My son was diagnosed with Jak2 PV last August aged 14....

Greenbus99

•6 years ago

29 Replies

Curcumin tried?

Hi, I'm first time responder. ET since 2006 w/no meds until 2012 when I moved to another state and because platelets were 758K, my new hematologist started me...

Hi, I'm first time responder. ET since 2006 w/no meds until 2012 when I moved to...

Saine1

•6 years ago

15 Replies

Not like me

Hi folks, just want to have a bit of a moan. The last few weeks I have had lots of tummy problems, first my GP said I had IBS, but also felt that I had a flare...

Hi folks, just want to have a bit of a moan. The last few weeks I have had lots ...

Superwoman

•6 years ago

22 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for June 2018

Missed diagnosis

Three day headaches.

GVHD

2 questions: Dizzy at certain times, and disability insurance?

ET symptoms?

Good report on Ruxolitinib

EMA approval for ropeginterferon alpha2b?

PV symptoms

Blobs!

Holby City

Hydroxy intolerant - Pegylated Interferon next?

Protection

Back in hospital in France

Retirement.. Hoping for lower platelets!

RBC heading towards normal

Iron injection????

MPN JAK2+ some results today from the hematologist here in France

Thought for our daily water intake

9 weeks postpartum, ET CalR+ and have some questions.

Newly diagnosed with Myelofibrosis

Peg results

IMMUNOTHERAPY

bone marrow biopsy

Lilly1958

Claiming ET on critical illness insurance

Healthy pee is 1 to 3 , 4 to 8 you must hydrate!

Enlarged liver

Child with PV

Curcumin tried?

Not like me

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