Posts - MPN Voice | HealthUnlocked

MPN Voice

10,437 members • 14,387 posts

All posts for April 2018

First venosection

Hi Yet again I would love some advice. I was diagnosed with ET 9 years ago at the age of 58. Until recently I was on 500 mg Hydra daily and aspirin. Then my...

Hi Yet again I would love some advice. I was diagnosed with ET 9 years ago at t...

Margo18

•6 years ago

7 Replies

Isolation and loneliness

This is a round robin to all you wonderful people who replied to my post. Have replied to some of you but there are too many to answer individually. I have...

This is a round robin to all you wonderful people who replied to my post. Have ...

Garden987

•6 years ago

2 Replies

Don't know what to do!

Hello everyone. A few weeks ago I had some in depth blood tests done which say that I'm JAK2 negative and CALR 2 positive. I have been seeing haemo privately...

Hello everyone. A few weeks ago I had some in depth blood tests done which say t...

hall2

•6 years ago

16 Replies

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Sharp pain in arm after venesection

Morning all I had a very traumatic venesection a week ago today (23 April). They tried 3 times and each time my veins gave little before they blew. They then...

Morning all I had a very traumatic venesection a week ago today (23 April). They...

Kari1961

•6 years ago

10 Replies

Loneliness and isolation

Hi everyone. I posted just now but it doesn't seem to have been transmitted. Won't go on about it again but just wanted to off load. Hope you are the best...

Hi everyone. I posted just now but it doesn't seem to have been transmitted. Wo...

Garden987

•6 years ago

28 Replies

I'm new here

Hi I just thought I'd introduce myself. I was diagnosed with PV back in November 17 initially my haematacrit was 72.3 now some 5 months and 15 venesections...

Hi I just thought I'd introduce myself. I was diagnosed with PV back in November...

Gordon335

•6 years ago

8 Replies

Platelets that are elevated

I was supposed to have my second back surgery on April 6 2018 I went for pre-op on the 5th they did blood work.went in for surgery.my neurosurgeon.told me my...

I was supposed to have my second back surgery on April 6 2018 I went for pre-op ...

Melody20

•6 years ago

4 Replies

Good video on SCT

https://youtu.be/DJNQOIkdYQw

Paul123456

•6 years ago

2 Replies

Leg pains in evening?

Are anyone elses leg pains worse in the evening? Seems that as soon as I sit down in the evening my legs start throbbing & the pain just keeps building. Any...

Are anyone elses leg pains worse in the evening? Seems that as soon as I sit dow...

Vicky_b

•6 years ago

14 Replies

Holiday

Hi, we are visting Tenerife in May for one week. My hubby has a MP disorder and is on Hydroxycarbamide + Anagrelide plus other meds for diabetes. We have a...

Hi, we are visting Tenerife in May for one week. My hubby has a MP disorder an...

Mags126

•6 years ago

10 Replies

Fatigue and alternative therapies

Hi does anyone use any alternative therapies to manage fatigue associated withET? Thanks Emma

Hi does anyone use any alternative therapies to manage fatigue associated withET...

Baileyboys

•6 years ago

7 Replies

Dash it all, Biggles cops some flak damage behind enemy lines, but is helped by a charming Medic!

When I last posted, I was heading off with 2 HU bombs into enemy territory after my fierce monocle wearing Haemo Wallah upped the anti on the platelet...

When I last posted, I was heading off with 2 HU bombs into enemy territory after...

stillkicking

•6 years ago

22 Replies

Stem cell transplants

How does on go about finding donor ? Does donor have to pay for all test, what would go thru I'm lost not sure what do. 60 at and mf was over million last...

How does on go about finding donor ? Does donor have to pay for all test, what ...

Nanasuz

•6 years ago

1 Reply

ET

Hi, my name is salma 21 years old, recently diagnosed with ET, platelet count 1200000 Negative jak2, CALR , PCR for BCR/ABL Still waiting for the BMB Went...

Hi, my name is salma 21 years old, recently diagnosed with ET, platelet count 1...

somel

•6 years ago

15 Replies

Patient Power live webinar today: exercises to manage cancer fatigue and discomfort

This might be worth watching if you suffer with fatigue and want some exercise tips to help: (please note that the times stated below are for the USA, so...

This might be worth watching if you suffer with fatigue and want some exercise t...

Mazcd

Partner•6 years ago

7 Replies

New potential therapeutic target for MF

Possible new breakthrough re MF. Early days but one to watch.... https://www.nature.com/articles/s41467-018-03627-9 “To summarize, using two murine models of...

Possible new breakthrough re MF. Early days but one to watch.... https://www.nat...

Paul123456

•6 years ago

8 Replies

Puritus

Oh what a relieve. I’m in Cyprus and within 24 hours of arrival, THAT ITCH has vanished. This same thing happen when I was in Crete last year. Anyone had the...

Oh what a relieve. I’m in Cyprus and within 24 hours of arrival, THAT ITCH has v...

EleanorPV

•6 years ago

14 Replies

Complexion

Another quite trivial post from me, but usually get such good advice! Has anyone’s complexion gone really blotchy, dry , spotty and generally unhealthy...

Another quite trivial post from me, but usually get such good advice! Has anyon...

Juliet46

•6 years ago

13 Replies

Peg Interferon Injection technique

Hi everyone, I inject Peg Interferon weekly into my stomach. As instructed I alternate my injection and select a site approx 2 inches to the side and...

Hi everyone, I inject Peg Interferon weekly into my stomach. As instructed I alt...

Jocko

•6 years ago

9 Replies

New evaluation

https://www.nature.com/articles/s41408-017-0041-8.pdf

Gesha

•6 years ago

8 Replies

I'm new here

I visited my GP last November with pains in my upper arms and other aches (head and abdomen). Blood tests culminated in a diagnosis of PV in February this...

I visited my GP last November with pains in my upper arms and other aches (head ...

Peter18

•6 years ago

7 Replies

Massage with ET CALR

Can anyone tell me if it is OK to have a massage with CALR/ET or should I check with haemo? Thanks. Mary

Can anyone tell me if it is OK to have a massage with CALR/ET or should I check ...

Garden987

•6 years ago

12 Replies

Getting more and more fatigued : hoping to be able to have a blood transfusion - anyone else have transfusions with rux plus EPO?

Hi. I’ve been feelng horribly tired and am seeing my local haem tomorrow. I hope I can have a blood transfusion. The last letter from the London team (...

Hi. I’ve been feelng horribly tired and am seeing my local haem tomorrow. I ho...

Rachelthepotter

•6 years ago

6 Replies

ET or MF?

I was pleased with results at my 3-monthly review on Friday - platelets 310, neutrophils 2.4, WBC 4+ and other counts all in range. I asked if we could try...

I was pleased with results at my 3-monthly review on Friday - platelets 310, neu...

AndyT

•6 years ago

17 Replies

New to chemo. Why no choice?

I have already posted replies but does this mean that my other posts didn't go on the site because I hadn't yet seen my email to verify my email address? If...

I have already posted replies but does this mean that my other posts didn't go o...

JackLina

•6 years ago

23 Replies

HYDROXICARBOMIDE NAIL FATIGUE

Hi Gang, just a quick update on the state of my nails. Well good news, after using the CND nail varnish stuff I can honestly say, what a transformation. Before...

Hi Gang, just a quick update on the state of my nails. Well good news, after usi...

ashby7763

•6 years ago

7 Replies

Confusion over polycythemia causes

Hi everyone I have recently been seeing a haematologist due to high haemoglobin, haemocrit and red blood counts. I went to the doctor last summer because I...

Hi everyone I have recently been seeing a haematologist due to high haemoglobin...

Elcee253

•6 years ago

8 Replies

Criteria for diagnosing ET!

Hello, sarahjane here. I have just had my 2nd heamotoligist appointment, and feeling frustrated and uninformed! My platelet level is 591 right now. Last time I...

Hello, sarahjane here. I have just had my 2nd heamotoligist appointment, and fee...

Sarahjane100

•6 years ago

47 Replies

Rash

Hi everyone . I previously did a post regarding a rash or red spots on my lower legs which some of you kindly replied to ....the rash itself appears to be...

Hi everyone . I previously did a post regarding a rash or red spots on my lower...

Pippa63

•6 years ago

10 Replies

Glitchy gums!

I’m on hydroxy & aspirin for ET & am Jak2+. I have random episodes where suddenly my gums bleed for no reason . It’s unrelated to eating, exercising or talking...

I’m on hydroxy & aspirin for ET & am Jak2+. I have random episodes where suddenl...

Annie46

•6 years ago

12 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for April 2018

First venosection

Isolation and loneliness

Don't know what to do!

Sharp pain in arm after venesection

Loneliness and isolation

I'm new here

Platelets that are elevated

Good video on SCT

Leg pains in evening?

Holiday

Fatigue and alternative therapies

Dash it all, Biggles cops some flak damage behind enemy lines, but is helped by a charming Medic!

Stem cell transplants

ET

Patient Power live webinar today: exercises to manage cancer fatigue and discomfort

New potential therapeutic target for MF

Puritus

Complexion

Peg Interferon Injection technique

New evaluation

I'm new here

Massage with ET CALR

Getting more and more fatigued : hoping to be able to have a blood transfusion - anyone else have transfusions with rux plus EPO?

ET or MF?

New to chemo. Why no choice?

HYDROXICARBOMIDE NAIL FATIGUE

Confusion over polycythemia causes

Criteria for diagnosing ET!

Rash

Glitchy gums!

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