Posts - MPN Voice | HealthUnlocked

MPN Voice

10,784 members • 14,980 posts

All posts for July 2019

Pegacy and mouth ulcers

Do people continue treatment even they got mouth ulcers. Or do you stop for a month and restart again the next month. Or change treatment as it’s affect ur...

Do people continue treatment even they got mouth ulcers. Or do you stop for a mo...

Zar77

•5 years ago

5 Replies

Flying

Having MPN is it save to fly or are we taking a risk of getting clots by doing so

Having MPN is it save to fly or are we taking a risk of getting clots by doing s...

Kimmy53

•5 years ago

15 Replies

Conors Charity Fun Day

Hello folks, if any of you live near us in Norfolk , we are having a charity day which is raising awareness and funds for MPN voice as well as CLICSARGENT...

Hello folks, if any of you live near us in Norfolk , we are having a charity da...

Greenbus99

•5 years ago

8 Replies

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Blood results

Can anyone tell me what the blood results mean. Haematologist said my partner (post ET myelofibrosis) WBC's are 90 but she wants them down to 50 (he is on...

Can anyone tell me what the blood results mean. Haematologist said my partner (...

Goldfish212

•5 years ago

3 Replies

Pegasus

My first injection of Pegasus tomz I’m so nervous after reading all the side effects

My first injection of Pegasus tomz I’m so nervous after reading all the side ef...

Hahag

•5 years ago

12 Replies

Up and Down!

I was recently diagnosed with ET JAK 2, I'm on 1000mg Hydroxycarbamide and low dose aspirin. I've posted on here about the fatigue, which I know is a common...

I was recently diagnosed with ET JAK 2, I'm on 1000mg Hydroxycarbamide and low d...

Trueblue8

•5 years ago

18 Replies

Foot ulcers

In reply to my previous post on a possible foot ulcer from taking hydroxy. This turned into an absolute nightmare for me after being given 4 different types...

In reply to my previous post on a possible foot ulcer from taking hydroxy. This...

Benjamin12

•5 years ago

8 Replies

Taken off Hydroxea after 1 month

Hi Specialist has stopped my hydroxea after being diagnosed withET jak + 1 month ago my platelets have gone from 1000 down to 245 I’m only taking aspirin...

Hi Specialist has stopped my hydroxea after being diagnosed withET jak + 1 mont...

Kazzaa

•5 years ago

10 Replies

Myelofibrosis

Just wondering if anyone has a diagnosis of advanced or progressive post ET myelofibrosis. My partner was diagnosed a few months ago (ET diagnosed in 2016)...

Just wondering if anyone has a diagnosis of advanced or progressive post ET myel...

Goldfish212

•5 years ago

9 Replies

Symptoms of ET or Hydroxy side effects?

Hi MPN friends. I was diegnosed with ET after BMB confirming it in the middle of last year. I had no symptoms then and was put on small aspirin until going on...

Hi MPN friends. I was diegnosed with ET after BMB confirming it in the middle o...

azaelea

•5 years ago

20 Replies

Possible DVT

Morning all! At my last blood count last Monday I mentioned to my Con that I have developed a weird pain/pressure in my left calf and so I’m off for an...

Morning all! At my last blood count last Monday I mentioned to my Con that I h...

Mackydee123

•5 years ago

13 Replies

How are teachers in US managing their MPN and full-time employment?

Question for teachers in US I recently read several posts from UK teachers, regarding their ability or inability to maintain full-time employment, while...

Question for teachers in US I recently read several posts from UK teachers, rega...

clevemic

•5 years ago

15 Replies

Hi I’m new on here

Last year I was admitted to hospital while on holiday in Australia with a blood clot in my portal and splenic vein and an enlarged spleen , and clots on my...

Last year I was admitted to hospital while on holiday in Australia with a blood ...

Kimmy53

•5 years ago

21 Replies

MPN Voice Living with MPNs Day 2019

Saturday 16th November 2019, 9 am – 5 pm registration from 8.45 am Venue: Cavendish Conference Centre, 22 Duchess Mews, Marylebone, London, W1G 9DT This...

Saturday 16th November 2019, 9 am – 5 pm registration from 8.45 am Venue: Cave...

Mazcd

Partner•5 years ago

13 Replies

MPN Voice Patients' forums 2019 - Belfast and Nottingham

We are very pleased to announce details for 2 MPN Voice patients’ forums in Nottingham and Belfast You are very welcome to attend any of the forums regardless...

We are very pleased to announce details for 2 MPN Voice patients’ forums in Nott...

Mazcd

Partner•5 years ago

2 Replies

I am new here

Hi my name is Dee I am new to this site but suffer with PV for over 28 years but I don't let it stop me doing most things, my interests are my grandchildren...

Hi my name is Dee I am new to this site but suffer with PV for over 28 years but...

Debbie123456

•5 years ago

3 Replies

Does everyone below retirement age work full time?

I'm 52 and have had PV for at least 14 years now. I work 38 hours a week but am finding it tougher with every passing week. How do you all cope? Love Mel x

I'm 52 and have had PV for at least 14 years now. I work 38 hours a week but am ...

harleydavidson

•5 years ago

34 Replies

Feeling overwhelmed

I have ET Jack2 CALR and chronic fatigue.. Fatigue is.awful although I do try to do small jobs. Have had UTIs for the past 2 years - loads of antibiotics....

I have ET Jack2 CALR and chronic fatigue.. Fatigue is.awful although I do try t...

Garden987

•5 years ago

8 Replies

Tiredness

Hi have had Myelofibrosis for 10 years I don’t know anyone else who has this feel so tired my legs ache feel as if I have the flu all the time 😩thanks Diana...

Hi have had Myelofibrosis for 10 years I don’t know anyone else who has this fe...

D1i2a3

•5 years ago

18 Replies

MDM2 inhibitor clinical trials

https://www.patientpower.info/video/experts-explain-mdm-inhibition-and-clinical-trial-for-mpn-patients/page/1 Very promising trials on the way. So comforting...

https://www.patientpower.info/video/experts-explain-mdm-inhibition-and-clinical-...

Kelly2

•5 years ago

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Major breakthrough in the treatment of leukemia

Bone marrow aspirate showing Acute Myeloid Leukaemia (AML). Several blasts have Auer rods. Wikipedia This article out of the University of...

Bone marrow aspirate showing Acute Myeloid Leukaemia (AML). Several blasts have ...

socrates_8

•5 years ago

6 Replies

Onset of Pegasys side effects?

I'm about to start Pegasys, 45 mcg, at Mass General Hospital in Boston tomorrow for PCV. I live about 2 hours away, depending on traffic, and they keep you 1...

I'm about to start Pegasys, 45 mcg, at Mass General Hospital in Boston tomorrow ...

pnArt

•5 years ago

14 Replies

Systematic Review of Photobiomodulation for the Management of Oral Mucositis in Cancer Patients

Posted on MPN-MATE.COM» Wed Jul 10, 2019 3:42 am This is really an article that should be read by anyone that has ever suffered from Mouth Ulcers caused from...

Posted on MPN-MATE.COM» Wed Jul 10, 2019 3:42 am This is really an article tha...

socrates_8

•5 years ago

14 Replies

Update on my mouth sores

Hi ya everyone, so I think I posted about a couple of months ago, about these blooming mouth sores. No remedy seems to help them ☹️ But I do have some medical...

Hi ya everyone, so I think I posted about a couple of months ago, about these bl...

Yvette49

•5 years ago

29 Replies

Pruritus

Hi all, do any of you have itching even when dry? Not only after a shower? It is very disturbing and lasts much longer! If so have you noticed if certain foods...

Hi all, do any of you have itching even when dry? Not only after a shower? It is...

Kelly2

•5 years ago

20 Replies

Post ET MF

Hi I am new here. My partner who is 64 had ET for several years, treated with hydroxea. However earlier this year following illness and a BMB he was diagnosed...

Hi I am new here. My partner who is 64 had ET for several years, treated with hy...

Goldfish212

•5 years ago

2 Replies

Stem Cells!

My 22 year old son has Primary MF and one of his sisters is a 10/10 stem cell match for him - a wonderful thing for us all to hear after we discovered that a...

My 22 year old son has Primary MF and one of his sisters is a 10/10 stem cell ma...

christiev

•5 years ago

13 Replies

Pv with mouth ulcers using peg interferon

I have had mouth ulcers over a month (white blister on right side of the tongue and marks inside cheek). Stopped peg interferon 45 dosage so my mouth can heal...

I have had mouth ulcers over a month (white blister on right side of the tongue ...

Zar77

•5 years ago

10 Replies

The Force is Strong in This One

Hi Forum Friends , , I had notification of a new follower on here today and I realised how much time has elapsed since I posted an update. Time flies when...

Hi Forum Friends , , I had notification of a new follower on here today and I re...

JediReject

•5 years ago

57 Replies

No reason for Elevated RBC

My RBC, hemoglobin, hematocrit are really elevated but my bone marrow biopsy was negative as was Jak2. I’m scared because my Hemotologist doesn’t know what the...

My RBC, hemoglobin, hematocrit are really elevated but my bone marrow biopsy was...

Cali-Med

•5 years ago

14 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for July 2019

Pegacy and mouth ulcers

Flying

Conors Charity Fun Day

Blood results

Pegasus

Up and Down!

Foot ulcers

Taken off Hydroxea after 1 month

Myelofibrosis

Symptoms of ET or Hydroxy side effects?

Possible DVT

How are teachers in US managing their MPN and full-time employment?

Hi I’m new on here

MPN Voice Living with MPNs Day 2019

MPN Voice Patients' forums 2019 - Belfast and Nottingham

I am new here

Does everyone below retirement age work full time?

Feeling overwhelmed

Tiredness

MDM2 inhibitor clinical trials

Major breakthrough in the treatment of leukemia

Onset of Pegasys side effects?

Systematic Review of Photobiomodulation for the Management of Oral Mucositis in Cancer Patients

Update on my mouth sores

Pruritus

Post ET MF

Stem Cells!

Pv with mouth ulcers using peg interferon

The Force is Strong in This One

No reason for Elevated RBC

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