jillydabrat3 years ago
Went for my liver and spleen scan yesterday after my brain CT scan on Thursday last week. Scan showed liver and spleen enlarged which may b...
I'm home from my surgery ..it went very well ..I'm mending really well !
Twinkly3 years agoPOPULAR
I had 5 holes into my chest and a new tummy button made !the surgeon said the hiatus hernia was 20 years old and needed to be removed ,,when...
23 Replies5 Likes
eire3 years ago
Can anyone advise if they are taking the drug Panobinistat along with Ruxolitnib? I was diagnosed with MF 7 years ago and started on a tria...
Had "The Chat"😁
nodmeister3 years ago
Morning all. Had my "chat' yesterday with my haematologist and was absolutely gob-smacked... Nothing about "I don't know why that is" when I...
My turn for hospital 🙄
Chelle_3 years agoPOPULAR
So I've had black tarry stools for the past few days and gave thrown up about a litre of blood today and now I'm in hospital messaging you f...
Newly diagnosed. ET jak2+
Rob43ET3 years ago
Hi all, I'm a 43 year old male, and only got my diagnosis on 21/3/2016.
I must say that I went straight home and worried myself half to death...
12 Replies4 Likes
garden41BULBS3 years ago
Thanks for all your comments.
How do I know I'm drinking enough water, when taking hydoxy?
skodaguy3 years ago
The major effect my MPN has on me beside fatigue is itching. I have itched since before first diagnosis in 1994. Have tried so many drugs . ...
Hydroxy on the rise
Chelle_3 years ago
So I am now down being looked after the team in Bourenmouth Hospital....like first thing they did when they too over my care was to reduce m...
fady3 years ago
im 29 years old with routine blood count platlets was 560 follow up after 1month it was 650 then reached 800 after another 1 month
stevenjust3 years ago
I have ET for 5 years now, am 44 and on 3 x hydroxy mon-fri and 4 Sat Sun. Plus 75mg aspirin daily.
The last few weeks my skin on the left ha...
Spleen pain, normal or not?
Good morning my MPN friends, I am feeling rather lousy this morning because I am suffering with wave after wave of pain from my spleen. Thi...
Immune System and Hydroxy
G1DRA3 years ago
I was diagnosed with ET ten years ago and my platelets are around 400. I found the MPN voice web site only 2 months ago after my Doctor rec...
16 Replies1 Like
Kerri23 years ago
ET and taking Hydroxy. Understand one of side effects can be sores in mouth and throat? Was horrified to read that, but so far no pr...
4 Replies1 Like
Just been diagnosed with essential thrombocythaemia, it's a lot to take in at first.
Will I get a bad taste in my mouth from HYDROXCY?
Kari19613 years agoPOPULAR
I've been on the organ donation register for many years and my Mum raised a query about this a few days ago.
Obviously our blood goes throug...
28 Replies1 Like
Is it the PV ?
hollymae3 years ago
Hi can you help. I have PV with bloods fine but I am having days when I have a really bad headache with shivering, feeling cold and extreme ...
7 Replies1 Like
Platelets rising whilst on hydroxycarbamide?
Bill_E3 years ago
Does anyone have any experience of their platelets rising whilst on a relatively high (1.5g) daily dose of hydroxycarbamide?
If so which alte...
Good luck Twinkly
Hidden3 years ago
Good luck with your operation Twinkly. I remember the day because it is my birthday. No doubt your positive thinking will go a long way to h...
11 Replies2 Likes
Well, a bit of great news
Loubprv3 years ago
I know this isn't exciting for you folks, but I have to boast to someone out there - have just heard that our lovely son in law ...
18 Replies10 Likes
Hi everybody !! Here I am again ,been locked out the site ,since update .missing you all ..lots of news ,been busy ,at hospital appointments
I'm going into addenbrooks for surgery on Monday 14 th ,as my hiatus hernia ,has become strangled ,so I'm getting it all straightened out .....
23 Replies6 Likes
MPN Voice March 2016 Fundraising Update
Mazcd3 years ago
2016 is going to be a very exciting year for MPN Voice.
It has begun with the launch of our wonderful new website, which I hope you have all ...
1 Reply4 Likes
Hydrea on wrong day. . .
Karol_Rua3 years ago
I am prescribed hydroxyurea (500mg) on Monday, Wednesday and Friday. Last night (Tuesday) I was at the cinema and was very tired wh...
Jak2+ up your risk?
mickey643 years ago
I am on a face book site which believe me sometimes can be scary. But a couple people on there keep saying that having the Jak2+ gene makes...
13 Replies1 Like
Raised ALT, what does this mean?
Hi my MPN friends, today I received a copy of a letter sent to my GP from my MPN consultant. In it she states that my ALT is raised and bec...
Helloooooo.... I spoke to my G.P. about how unhappy I am with my Haematologist and I now have an appointment, very quickly, to go and have a...
Cancer ward closing at Bromley
Superwoman3 years ago
Morning all, does anyone know that lives in the Bromley area or has read in the News Shopper about the closure of the Chartwell ward at Prin...
MFBMT20113 years ago
1827 days or 5 years. Whichever, thank you Sarah Gardner, my cell mate.
Keep on following Jedireject. Hope all is going well for you.
3 Replies2 Likes
Et progression to Mf
audreyk533 years ago
Does anyone know the signs or changes in blood counts that would show progression from et to mf?
Jackie493 years ago
can anyone tell me, when you are put on Hydroxy why do you have to keep taking the medication.
Why can't you come off it when your platelets ...
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