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MPN Voice

10,432 members • 14,380 posts

All posts for November 2016

Carcinoma

I have been trying to pluck up courage to write this.Since my P V and before diagnosis,had the flushed cheeks ,hands red,itching eyes ,skin etc. Take Hydrea ,7...

I have been trying to pluck up courage to write this.Since my P V and before dia...

Inca

•7 years ago

33 Replies

Teeth!!!!

Have any of you experienced problems with your teeth after starting HU! I've been getting terrible mouth ulcers and been prescribed hydrocortisone lozenges....

Have any of you experienced problems with your teeth after starting HU! I've bee...

130396

•7 years ago

17 Replies

Newly diagnosed with PV

Hi my name is Jason I'm 45 and have recently been diagnosed with PV. I don't have many symptoms at the moment, just a bit dizzy and cheeks flushed. Just...

Hi my name is Jason I'm 45 and have recently been diagnosed with PV. I don't hav...

Jasbak22

•7 years ago

9 Replies

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Mole biopsy

Morning All Was just wondering as on Friday I am having a biopsy on a mole on my forehead, has anyone had this procedure done while having an MPN mine being...

Morning All Was just wondering as on Friday I am having a biopsy on a mole on my...

Superwoman

•7 years ago

5 Replies

Nottingham Support Group - 2017 meeting dates

The MPN Voice Nottingham Support Group meets on the 3rd Wednesday of every month, 6 - 7.30 pm. This is a free to attend meeting, you don't have to book to...

The MPN Voice Nottingham Support Group meets on the 3rd Wednesday of every month...

Mazcd

Partner•7 years ago

4 Replies

Hip pains! Joint pain?

Does anyone else suffer with hip pains? The pain started a few days ago and has kept me awake most nights since. Anyone have any ideas what I can do to stop...

Does anyone else suffer with hip pains? The pain started a few days ago and has ...

Harrisonmatty93

•7 years ago

2 Replies

old age and ET

From: CHRIS ATKINS <catkinspolymer@hotmail.com> To: MPD-SUPPORT-L@SERV.AOL.COM Subject: Essential Thrombocythemia and the RUBBER INDUSTRY Sent: Tuesday, 19...

From: CHRIS ATKINS <catkinspolymer@hotmail.com> To: MPD-SUPPORT-L@SERV.AOL.CO...

catkinspolymer

•7 years ago

3 Replies

Claire Harrison from ASH and more

Dear MPN friends: I am so excited that ASH is in my new home city, San Diego later this week. And I am also excited we've got a great panel discussion lined up...

Dear MPN friends: I am so excited that ASH is in my new home city, San Diego lat...

andrewschorr

•7 years ago

2 Replies

Upsetting experience

I had an appointment for my 8 weekly check up with my haemotologist and I ended up sitting to a rather agitated man in the waiting room. He had also come to...

I had an appointment for my 8 weekly check up with my haemotologist and I ended ...

jillydabrat

•7 years ago

17 Replies

Probiotics

Anyone taking probiotics? My doctor seems in favor just wondering what you all are doing? How important do you think they are?

Anyone taking probiotics? My doctor seems in favor just wondering what you all ...

DH65

•7 years ago

2 Replies

Help - water!

Hi all, A silly question really but, I'm finding it very difficult to drink the required quantity of water and wondered how everyone else copes with this?...

Hi all, A silly question really but, I'm finding it very difficult to drink the ...

piggie50

•7 years ago

27 Replies

New to Hydrea

Hello All. I am seeking your counsel regarding a change to my current treatment. I am 58 years of age, live in Australia (New South Wales) and diagnosed two...

Hello All. I am seeking your counsel regarding a change to my current treatment....

Kinsale

•7 years ago

34 Replies

Angiogram and ET

I had an angiogram years ago pre-ET diagnosis and need another for a different health issue. Are there any ET people who've had an angiogram and if so what was...

I had an angiogram years ago pre-ET diagnosis and need another for a different h...

VKH422

•7 years ago

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Platelets creeping back up - ET CALR+ve

After a year of Pegasys and steadily reducing platelets my last 3 counts have started to creep up again to 320, 380 and now just over 390. Still in normal...

After a year of Pegasys and steadily reducing platelets my last 3 counts have st...

AndyT

•7 years ago

4 Replies

Hydroxy before surgery

I'm having my kidney removed due to cancer on the 12th of December. I seen the haemotologist today as requested by the surgeon. My platelets were 1,000,042 and...

I'm having my kidney removed due to cancer on the 12th of December. I seen the h...

conno61

•7 years ago

4 Replies

Polycythemia jak2&exon12 negative Frequent infection sinus

Dear respected mpn family.. I have some question to ask and any expirience same with me. By the way Im sorry for my bad english. Im from indonesia and in this...

Dear respected mpn family.. I have some question to ask and any expirience same...

Gloriusezra

•7 years ago

3 Replies

Burning feet

Hi.does anyone experience burning or itchy feet. My feet turn red especially if I have been standing up for a while. Is there anything I can take to relieve...

Hi.does anyone experience burning or itchy feet. My feet turn red especially if ...

Yasmin86

•7 years ago

11 Replies

Thinking of you

Morning Twinkly, All I would like to say is I will be thinking of you tomorrow, and hope the operation for you new knee goes well.

Morning Twinkly, All I would like to say is I will be thinking of you tomorrow, ...

Superwoman

•7 years ago

3 Replies

ET JAK2+ is it invasive?

Good Morning, I was diagnosed with ET & JAK2+ last month at the age of 29. I joined the forum and had seen that people diagnosed with ET had been paid out on...

Good Morning, I was diagnosed with ET & JAK2+ last month at the age of 29. I joi...

Yasmin86

•7 years ago

13 Replies

Let's count our blessings

Hi everyone, Ok I know I'm jolly irritating always saying let's look on the bright side, but honestly, put your hands together. I've just come back from a day...

Hi everyone, Ok I know I'm jolly irritating always saying let's look on the bri...

Loubprv

Volunteer•7 years ago

10 Replies

Happy consultant

Hi all , went to see the man this afternoon , he is happy my platelets came down a bit since taking Hydoxy 5 days week , but wants me to take 7 days now for 3...

Hi all , went to see the man this afternoon , he is happy my platelets came down...

Hidden

•7 years ago

2 Replies

Just popping my head in

Good morning my MPN family. Haven't posted for so long but I do read everyone's posts every day. Celebrated my 55 birthday at the end of October. Getting...

Good morning my MPN family. Haven't posted for so long but I do read everyone's...

jillydabrat

•7 years ago

3 Replies

Stiff joints in hands

Hi I am ET JAK2 positive and am taking aspirin daily and 500 mg hydroxycarbamide 4 days and 1000 mg 3 days. Just lately the joints in y hands have been feeling...

Hi I am ET JAK2 positive and am taking aspirin daily and 500 mg hydroxycarbamide...

Jane-r

•7 years ago

18 Replies

Approved

So I got compassionate approval for Rux....however I have been put on the liver transplant list so I am not allowed to start it until after the tx...that might...

So I got compassionate approval for Rux....however I have been put on the liver ...

Chelle_

•7 years ago

2 Replies

Anyone had a shingles vaccination?

graymare

•7 years ago

19 Replies

Yearly appointment to my Haem, ET with CALR postive

Well what can I say? but yay! Platelets down again to 601! All other blood values normal! and i looked too well!! Although turning 65 in Feb 17, he is not...

Well what can I say? but yay! Platelets down again to 601! All other blood valu...

Hidden

•7 years ago

16 Replies

Balancing act

Sometimes the doses have to be altered to alter Other test results.

garden41BULBS

•7 years ago

1 Reply

PV or not PV

Hi everyone, So I have my second venusection tomorrow and another one December 5th which will make three in total and I'm really hoping they are going to help...

Hi everyone, So I have my second venusection tomorrow and another one December 5...

James1731

•7 years ago

3 Replies

Off I go Friday for surgery to replace my knee ,,

But I'm staying on my ruxulitnib all through it .just stopping the clopiterol for seven days before the surgery ,,I decided it was safest to go private ,the...

But I'm staying on my ruxulitnib all through it .just stopping the clopiterol fo...

Twinkly

•7 years ago

11 Replies

Newly diagnosed with PV

Hi I have recently been diagnosed with polycythemia vera following a routine blood test . My lovely Haematologist told me about MPD Voice . I am so pleased...

Hi I have recently been diagnosed with polycythemia vera following a routine bl...

Dianne-Guisborough

•7 years ago

15 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for November 2016

Carcinoma

Teeth!!!!

Newly diagnosed with PV

Mole biopsy

Nottingham Support Group - 2017 meeting dates

Hip pains! Joint pain?

old age and ET

Claire Harrison from ASH and more

Upsetting experience

Probiotics

Help - water!

New to Hydrea

Angiogram and ET

Platelets creeping back up - ET CALR+ve

Hydroxy before surgery

Polycythemia jak2&exon12 negative Frequent infection sinus

Burning feet

Thinking of you

ET JAK2+ is it invasive?

Let's count our blessings

Happy consultant

Just popping my head in

Stiff joints in hands

Approved

Anyone had a shingles vaccination?

Yearly appointment to my Haem, ET with CALR postive

Balancing act

PV or not PV

Off I go Friday for surgery to replace my knee ,,

Newly diagnosed with PV

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