Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for January 2018

Blood cancer ; Parliament debate and report

I have just watched a debate on blood cancer in Westminster Hall from last Wednesday and seen that there is a report from an All Parliamentary group. You can...

I have just watched a debate on blood cancer in Westminster Hall from last Wedne...

Stephen399b

•6 years ago

8 Replies

(4-Year) Follow-up of RESPONSE Trial, a Phase 3 Study Comparing Ruxolitinib with Best Available Therapy for Treatment of Polycythemia Vera

https://www.pvreporter.com/dr-jean-jacques-kiladjian-at-ash-2017-4-year-follow-up-on-response-trial-a-phase-3-study-comparing-ruxolitinib-with-best-available-th

https://www.pvreporter.com/dr-jean-jacques-kiladjian-at-ash-2017-4-year-follow-u...

PVReporter

•6 years ago

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When to start medication?

Hi all I had a clinic appointment last week and when I got to the hospital, discovered that my usual haem was unfortunately on leave for 6 months. They’d...

Hi all I had a clinic appointment last week and when I got to the hospital, disc...

PT99

•6 years ago

19 Replies

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Interferon A

Looking for some advice, I was diagnosed with ET/PV in December JAK2 positive. Am awaiting my BMB results next week to clarify. I was started on Hydroxy...

Looking for some advice, I was diagnosed with ET/PV in December JAK2 positive. A...

Poppy112

•6 years ago

16 Replies

MORE MPN CLINICAL NURSE SPECIALIST IN SCOTLAND

Hi its me again I urge people in central belt fife Tayside and Perth who are mpn suffers who go to haematology clinics that does not have an Mpn clinical nurse...

Hi its me again I urge people in central belt fife Tayside and Perth who are mpn...

Scottishterrier

•6 years ago

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Aspirin

Do you take dissolving or non dissolving.. I currently take non dissolving and swallow, my better half suggests I should take the other Enteric-coated...

Do you take dissolving or non dissolving.. I currently take non dissolving and ...

shiftzz

•6 years ago

16 Replies

Side effects!

Hello I wondered why no one replied to my post and then realised it was total nonsense, I meant to ask everyone if, when you started to take hydroxycarbamide,...

Hello I wondered why no one replied to my post and then realised it was total no...

Juliet46

•6 years ago

33 Replies

Polycycthemia

Can polycycthemia be difficult to diagnose ?

Kwebb

•6 years ago

2 Replies

Peripheral Vision Loss

Does any one have peripheral vision loss; not related to Glaucoma or any other eye disease but from ET?? Thanks for your thoughts, Ellen

Does any one have peripheral vision loss; not related to Glaucoma or any other e...

EllenKay67

•6 years ago

18 Replies

Symptoms!

Hello Everybody Just a question to people who have symptoms, did they start right away when you took hydroxycarbamide or when it builds up in your system....

Hello Everybody Just a question to people who have symptoms, did they start righ...

Juliet46

•6 years ago

1 Reply

Hydroxycarbamide

Hi it’s taken two years on hydroxycarbamide to get my platelets to 400 has anyone else had this experience?

Hi it’s taken two years on hydroxycarbamide to get my platelets to 400 has anyon...

PhilReade

•6 years ago

8 Replies

Lower dose

Hello all, Have any of you on Ruxolitinib been lowered from 10mg twice daily to 5mg twice daily? I'm wondering if there will be a not too favourable reaction....

Hello all, Have any of you on Ruxolitinib been lowered from 10mg twice daily to ...

champ30

•6 years ago

11 Replies

MPs call for more blood cancer testing by GPs

MPs call for more blood cancer testing by GPs Blood cancer's "vague" symptoms, like tiredness and bruising, mean it is more likely a patient's diagnosis is...

MPs call for more blood cancer testing by GPs Blood cancer's "vague" symptoms, l...

shiftzz

•6 years ago

5 Replies

The sun has his hat on

Well my friends, been to the hospital this morning, and all my result are good, my Haematologist was very pleased, so back in four months time. Was a bit...

Well my friends, been to the hospital this morning, and all my result are good, ...

Superwoman

•6 years ago

5 Replies

Curcumin update

Good morning to all interested parties, Well, I had my hospital appointment yesterday and despite taking Curcumin since last August my platelets increased...

Good morning to all interested parties, Well, I had my hospital appointment yest...

piggie50

•6 years ago

26 Replies

My Spleen is no longer welcome!

Hi guys, I've not been here too much, I have been over on the liver pages. But I thought I would give you an update. So I have been waiting for transplant for...

Hi guys, I've not been here too much, I have been over on the liver pages. But I...

Chelle_

•6 years ago

13 Replies

New Diagnosis

Hi all, my husband has just recently been diagnosed, he is 50 and we have 2 young children and he has an older daughter. Our minds are spinning a little at the...

Hi all, my husband has just recently been diagnosed, he is 50 and we have 2 youn...

Baileyboys

•6 years ago

13 Replies

MPN-U

Got my BMB results and dx is PV or MPN-U. Not come across MPN-U before? Does anyone else here have this condition? Wondering what the treatment plan is, I read...

Got my BMB results and dx is PV or MPN-U. Not come across MPN-U before? Does any...

Paul123456

•6 years ago

16 Replies

MPN & Pregnancy

Hello, Does any one know of any successful pregnancies while having MPN. ET. JAK2+? I am now 27 years young but 5years ago before I was diagnosed with MPN I...

Hello, Does any one know of any successful pregnancies while having MPN. ET. JAK...

Cathy426

•6 years ago

10 Replies

Pre-fibrotic PMF

Greetings, I have ET, MPL515L +, had a recent blood smear showing red blood cell count as, teardrop, target cells, and other defective rbc's. Their frequency...

Greetings, I have ET, MPL515L +, had a recent blood smear showing red blood cell...

Indigo42916

•6 years ago

7 Replies

Polycythemia Vera

Hi, I am new to the forum having been diagnosed with PV in May 2017 . My treatment up till now has only consisted of Asprin, however following my last...

Hi, I am new to the forum having been diagnosed with PV in May 2017 . My treatme...

paddy67

•6 years ago

8 Replies

Myoproliferative Neoplasm Essential Thrombocytosis JAK 2

I am a long term MPN patient, Myoproliferative Neoplasm Essential Thrombocytosis JAK 2 mutation positive. I have taken Hydrea and aspirin for 14 months and...

I am a long term MPN patient, Myoproliferative Neoplasm Essential Thrombocytosis...

Hidden

•6 years ago

9 Replies

Aching at night

Is it common that joint and muscle aches increase at night when in bed ? Mine keep me awake.

Is it common that joint and muscle aches increase at night when in bed ? Mine ke...

Kwebb

•6 years ago

9 Replies

Polycythemia/Brain Tumour?

Hi I had a meeting with my consultant on Wednesday after having some more tests. I have been diagnosed With Polycythemia JAK2 for over seven years now and...

Hi I had a meeting with my consultant on Wednesday after having some more tests...

Nozboz

•6 years ago

15 Replies

Need bone marrow biopsy

I had some blood work done consistently over 3 months which showed increasing white cell counts and consistent high level Platelets. Hematologist ordered...

I had some blood work done consistently over 3 months which showed increasing wh...

Howudoinaz

•6 years ago

2 Replies

Pneumonia jab

Searched the archives but mixed messages? Some say we can’t have it since live vaccine and others have had it no problem. Met a couple of very healthy people...

Searched the archives but mixed messages? Some say we can’t have it since live v...

Paul123456

•6 years ago

8 Replies

Blood books.

Ha, result!!! thanks again to shiftzz (+ rock on Rachel with the hope we can get an official book) Took my home made version of a ‘blood book’ to my hospital...

Ha, result!!! thanks again to shiftzz (+ rock on Rachel with the hope we can get...

amhann

•6 years ago

5 Replies

Do we PVers (or others with MPN) need liver function tests

Hi all, had latest visit at hospital this week and doctor says pleased with how things going and I don't need another blood test or hospital visit for three...

Hi all, had latest visit at hospital this week and doctor says pleased with how ...

lizk1993

•6 years ago

15 Replies

I'm new and would like help

I'm new to posting on any boards, I'm on hydroxycarbamide, nearly 2 months now and and feeling nausea every day - I am very anxious. What can I do to help...

I'm new to posting on any boards, I'm on hydroxycarbamide, nearly 2 months now a...

Imogen82

•6 years ago

53 Replies

Diet jak+

Has anyone with MPN jak2 positive ET seEn a nutritionist or holistic dr? I feel like I need to change my diet to lower platelets but I have heard that green...

Has anyone with MPN jak2 positive ET seEn a nutritionist or holistic dr? I feel ...

Cathy426

•6 years ago

20 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for January 2018

Blood cancer ; Parliament debate and report

(4-Year) Follow-up of RESPONSE Trial, a Phase 3 Study Comparing Ruxolitinib with Best Available Therapy for Treatment of Polycythemia Vera

When to start medication?

Interferon A

MORE MPN CLINICAL NURSE SPECIALIST IN SCOTLAND

Aspirin

Side effects!

Polycycthemia

Peripheral Vision Loss

Symptoms!

Hydroxycarbamide

Lower dose

MPs call for more blood cancer testing by GPs

The sun has his hat on

Curcumin update

My Spleen is no longer welcome!

New Diagnosis

MPN-U

MPN & Pregnancy

Pre-fibrotic PMF

Polycythemia Vera

Myoproliferative Neoplasm Essential Thrombocytosis JAK 2

Aching at night

Polycythemia/Brain Tumour?

Need bone marrow biopsy

Pneumonia jab

Blood books.

Do we PVers (or others with MPN) need liver function tests

I'm new and would like help

Diet jak+

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