Posts - MPN Voice | HealthUnlocked

MPN Voice

10,408 members • 14,354 posts

All posts for October 2016

ASAP/ALAP counts - what constitutes numbers to be worried about ?

14 months after my SCT I am going through a period of chronic GvHD in my liver. After 2 months of corticoids I have been switched to Jakavi - progressively...

14 months after my SCT I am going through a period of chronic GvHD in my liver. ...

crapaud

•7 years ago

11 Replies

Be careful Ladies- safety first!

Safety first!

lizzziep

•7 years ago

13 Replies

MPN Voice fund raiser 🏃🏻🏃🏻🏃🏻🏃🏻🏃🏻🏃🏻🏃🏻🏃🏻🏃🏻🏃🏻🏃🏻

He's on his way despite a knee injury :-) Running with an MPN Voice vest courtesy of Maz !!!

He's on his way despite a knee injury :-) Running with an MPN Voice vest courtes...

Annie46

•7 years ago

4 Replies

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Hernia surgery with ET?

I'm considering surgery for a small hernia that gives me moderate pain. I've heard I'm not a candidate because of severe risk of post-surgery clots. I'm 70,...

I'm considering surgery for a small hernia that gives me moderate pain. I've he...

Jerrymohler

•7 years ago

6 Replies

Interesting article.

http://www.independent.ie/irish-news/layla-1-becomes-first-person-to-be-cured-of-cancer-using-designer-dna-34175396.html. Worth a read so much being done to...

http://www.independent.ie/irish-news/layla-1-becomes-first-person-to-be-cured-of...

eire

•7 years ago

15 Replies

Voltarol?

Does anyone know if it's ok to use Voltarol gel while on aspirin and Anagrelide?

Does anyone know if it's ok to use Voltarol gel while on aspirin and Anagrelide...

lizzziep

•7 years ago

2 Replies

Thought It would be good to give an update

Good morning everyone I was recently diagnosed with PV JAK 2 Negative and have been suffering pretty bad wth the below Symptoms and so far have ony had one...

Good morning everyone I was recently diagnosed with PV JAK 2 Negative and have b...

James1731

•7 years ago

10 Replies

Symptoms worsen when I go to bed.

When I lie flat in bed at night my feet feel frozen, numb, and burning terribly. Also some joint/bone pain. Usually I get up, take pain meds, and don't get...

When I lie flat in bed at night my feet feel frozen, numb, and burning terribly....

Jerrymohler

•7 years ago

6 Replies

Nottingham support group

Hi is there a meeting in Nov and what date has it been arranged and who is speaking please and lastly who is going mochelle

Hi is there a meeting in Nov and what date has it been arranged and who is speak...

Shelly1960

•7 years ago

4 Replies

Am i really on a chemo pill! ?

Im asking this , because family tell me im not on chemo treatment like alot of people are , because for one i dont have to spend time at hospital having it...

Im asking this , because family tell me im not on chemo treatment like alot of p...

Hidden

•7 years ago

17 Replies

Assessment Complete

Its just a waiting game now..... So I had all the tests and told that I was in really good condition, my blood test have all come back good but they are...

Its just a waiting game now..... So I had all the tests and told that I was in ...

Chelle_

•7 years ago

15 Replies

What causes blood clots for people with a MPN?

I've wondered why some people with MPN's get blood clots and some don't? It seems very puzzling that two people could have exactly the same high platelet...

I've wondered why some people with MPN's get blood clots and some don't? It seem...

MarkD6701

•7 years ago

4 Replies

ET

Hi. I have joined this forum to find out more about ET. My wife was diagnosed with this recently at the age of 29. We have three young children so we are very...

Hi. I have joined this forum to find out more about ET. My wife was diagnosed wi...

Saj1984

•7 years ago

26 Replies

Imminizations and MPN

Is it safe for patients with unclassified MPN to get immininizations, specifically flu shot, shingles shot and pneumonia shot?

Is it safe for patients with unclassified MPN to get immininizations, specifical...

Sklines

•7 years ago

14 Replies

Sunday morning update ..I'm going private to get my knee surgery .just can't wait on the NHS.. The list may take forever .will I be o,k, ???

I'm terrified of surgery knowing I have MPD , Iv been on the trial drug ruxulitnib for over 3 years .Its been so good in my case ,so I went for tummy repair...

I'm terrified of surgery knowing I have MPD , Iv been on the trial drug ruxulitn...

Twinkly

•7 years ago

12 Replies

Watch those draughts!

I have just my kidney's, blood, prostate checked for a pain in my right hand side, just about where the right kidney's are, I had had a back operation there...

I have just my kidney's, blood, prostate checked for a pain in my right hand sid...

Adlon57

•7 years ago

3 Replies

Grrrrr

Well it has been one tough month I can tell you. I finally saw a Consultant who took me off Hydroxia. Said my counts were not bad and didn't know why I was put...

Well it has been one tough month I can tell you. I finally saw a Consultant who ...

fannetastic

•7 years ago

4 Replies

GVHD The Gift That Keeps On Giving !!

Good Morning folks, thanks for your concern. . It's fair to say I've been under the cosh again recently. . I won't dwell on it all because I'm going forward...

Good Morning folks, thanks for your concern. . It's fair to say I've been under ...

JediReject

•7 years ago

42 Replies

Correct information?

Morning everyone I have et and my hu was increased to 1000 mg daily due to increased platelet count but my wbc was taking a nose dive so it's been decreased...

Morning everyone I have et and my hu was increased to 1000 mg daily due to incr...

Hidden

•8 years ago

5 Replies

Replays posted from City of Hope Town Meeting

Don't miss the video replays of last Saturday's town meeting at City of Hope with Dr. Snyder and Mayo Clinic's Ruben Mesa. It's the very latest information for...

Don't miss the video replays of last Saturday's town meeting at City of Hope wit...

andrewschorr

•8 years ago

Be the first to reply

Grr Elevated platelets !

Hi saw consultant today , and as i feared HU hasnt lowered bloods! so taking 500 mg extra 2 days wek ,will see him again in 5 weeks ,bit disappointed but thats...

Hi saw consultant today , and as i feared HU hasnt lowered bloods! so taking 500...

Hidden

•8 years ago

22 Replies

Jenni's Journey

[Jenni is a young friend of mine. She doesn't have an MPN, but she has a message. It meant a great deal to me, as I hope it will to you. She has suffered...

[Jenni is a young friend of mine. She doesn't have an MPN, but she has a messag...

Jerrymohler

•8 years ago

5 Replies

ET and compression stockings

Before I was diagnosed with JAK2 ET, I was advised to wear compression stockings daily because of venous reflux in my legs. Now it seems I'm feeling worse pain...

Before I was diagnosed with JAK2 ET, I was advised to wear compression stockings...

Jerrymohler

•8 years ago

6 Replies

kidney Cancer

I have had a Kidney removed due to Transitional Cell carcinoma grade 3 I was let down by my critical illness cover they say im not covered even tho the tumour...

I have had a Kidney removed due to Transitional Cell carcinoma grade 3 I was let...

Sharon1602

•8 years ago

8 Replies

Short of breath & fatigue ?

Does anyone with ET & on Hydrea get short of breath and fatigued on hot humid days? My MPN doc says not from my MPN since I'm not anemic. But my other docs...

Does anyone with ET & on Hydrea get short of breath and fatigued on hot humid d...

katiewalsh

•8 years ago

11 Replies

New to this site (scare)

My partner age 33 was diagnosed last week with mpn but they said he sits in the middle of them all tested jak2 + for pv ,currently having venesection with is...

My partner age 33 was diagnosed last week with mpn but they said he sits in the ...

Brook04

•8 years ago

18 Replies

unable to go to newcastle

I am totally gutted as I have looked forward to this for so long but mum has developed a very nasty chest infection and at 93 I am having to put her first over...

I am totally gutted as I have looked forward to this for so long but mum has dev...

jillydabrat

•8 years ago

4 Replies

Newcastle meeting Today yippee

At work early today , then off to See my favourite lady today Maz xx

Phelpsy

•8 years ago

13 Replies

Not Missing in Action

Hello all....I been a bit quite recently - not intentionally. I have been over on the Liver Support page..... For those of you that don't know I have Liver...

Hello all....I been a bit quite recently - not intentionally. I have been over o...

Chelle_

•8 years ago

31 Replies

Headaches and chills ,is this the HU ?

Hi have had bad headache sinc 3pm yesterday , i often get chills. after i have taken Pill i cant shift headachy feeling with parcetomols , any suggestions...

Hi have had bad headache sinc 3pm yesterday , i often get chills. after i have t...

Hidden

•8 years ago

7 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for October 2016

ASAP/ALAP counts - what constitutes numbers to be worried about ?

Be careful Ladies- safety first!

MPN Voice fund raiser 🏃🏻🏃🏻🏃🏻🏃🏻🏃🏻🏃🏻🏃🏻🏃🏻🏃🏻🏃🏻🏃🏻

Hernia surgery with ET?

Interesting article.

Voltarol?

Thought It would be good to give an update

Symptoms worsen when I go to bed.

Nottingham support group

Am i really on a chemo pill! ?

Assessment Complete

What causes blood clots for people with a MPN?

ET

Imminizations and MPN

Sunday morning update ..I'm going private to get my knee surgery .just can't wait on the NHS.. The list may take forever .will I be o,k, ???

Watch those draughts!

Grrrrr

GVHD The Gift That Keeps On Giving !!

Correct information?

Replays posted from City of Hope Town Meeting

Grr Elevated platelets !

Jenni's Journey

ET and compression stockings

kidney Cancer

Short of breath & fatigue ?

New to this site (scare)

unable to go to newcastle

Newcastle meeting Today yippee

Not Missing in Action

Headaches and chills ,is this the HU ?

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