Posts - MPN Voice | HealthUnlocked

MPN Voice

10,519 members • 14,521 posts

All posts for July 2019

Interferon injections

Hello everyone.... saw my oncologist last week, I have been given another 3 weeks off of Hydroxycarbomide ( it’s shown it is that that is giving me mouth...

Hello everyone.... saw my oncologist last week, I have been given another 3 week...

Yvette49

•5 years ago

20 Replies

Kindness matters

I am fairly new here (one year post-diagnosis) but have a comment to share after reading recent posts. If we are part of this group, we are fighting a...

I am fairly new here (one year post-diagnosis) but have a comment to share after...

doglover57

•5 years ago

17 Replies

Breakouts on the face

I was wondering if anybody else suffers from breakouts on the face? At the moment I have a large cold sore right in the middle of my bottom lip, two large...

I was wondering if anybody else suffers from breakouts on the face? At the mome...

jillydabrat

•5 years ago

28 Replies

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Newly diagnosed with ET. How to afford Pegasys???

Over the course of the last few months, I’ve had a lot of ups and downs from my recent diagnosis of ET Jak2+ (5% mutation), platelets were at 1,051, spleen at...

Over the course of the last few months, I’ve had a lot of ups and downs from my ...

Kseely

•5 years ago

41 Replies

Happy Saturday

Hope you like this as much as I do 😊

Sand-Dancer

•5 years ago

13 Replies

Update after Haemo appointment.

Well! I've had my appointment on Thursday at last and took with me a list of questions. I was seen by Nurse Specialist in Haematology, not the Doctor. To be...

Well! I've had my appointment on Thursday at last and took with me a list of que...

azaelea

•5 years ago

6 Replies

First experiences with Pegasys for Polythycemia Vera

I've had PV for about 10 years, managing it with phlebotomies and aspirin but I've been eager to try Pegasys and avoid HU. HU is a really old,...

I've had PV for about 10 years, managing it with phlebotomies and aspirin but I'...

pnArt

•5 years ago

4 Replies

Family life with mf

Hi I don’t normal post a lot but I wanted to know how others cope having mf and living a normal life I have 2 small children and I won’t lie iam finding it...

Hi I don’t normal post a lot but I wanted to know how others cope having mf and ...

Leighcox85

•5 years ago

24 Replies

MPN ET JAK2 HU un-diagnosed bacterial Pneumonia

I have ET JAK2 and have had it for many years. Last year I started to feel exhausted and I couldn't quite explain the degree of my feelings to my GP. Over...

I have ET JAK2 and have had it for many years. Last year I started to feel exhau...

Hidden

•5 years ago

3 Replies

How are you coping with the heat?

I am sitting this morning with every window in the house open, a ceiling fan going full blast, a floor fan going and I am still ripping off sheets of paper...

I am sitting this morning with every window in the house open, a ceiling fan goi...

jillydabrat

•5 years ago

15 Replies

Anyone with ET- having hot flashes?

Oh my goodness..I started having hot flashes all throughout the day and worse at night?!?!? It’s tough!

Oh my goodness..I started having hot flashes all throughout the day and worse at...

JenngeetingR828

•5 years ago

8 Replies

Options when MF is advanced

I have been transfusion dependant for about 4 years, averaging 2 units about every 4 weeks. In the last six months I have been getting 2 units per week. Can't...

I have been transfusion dependant for about 4 years, averaging 2 units about eve...

47Robert

•5 years ago

20 Replies

A phase 2 study of ruxolitinib in combination with azacitidine in patients with myelofibrosis

Sounds very encouraging http://www.bloodjournal.org/content/132/16/1664

Paul123456

•5 years ago

4 Replies

watermelon & low blood pressure

Just in case no one else knows, watermelon lowers your blood pressure. In my case my blood pressure got to 103 and I felt bad. Very dizzy. I was eating a...

Just in case no one else knows, watermelon lowers your blood pressure. In my ca...

h2ogal

•5 years ago

4 Replies

Combining Pegasys and ruxolitinib (Jakafi) for MF: has anyone tried it?

Hi. I'm having a grim time at present, as the increased risk of aggressive skin cancers triggered by the ruxolitinib I’m taking ( was inc to 20mg bd at end...

Hi. I'm having a grim time at present, as the increased risk of aggressive skin...

Rachelthepotter

•5 years ago

14 Replies

Pegasus

Pegasus starting today nervous

Hahag

•5 years ago

8 Replies

Interferon shortage?

Hi I'm Jimango. Have been monitoring this forum for a few years but never needed to post, although I have replied to a few. I'm ET, Jak2 neg, since 2007. HU...

Hi I'm Jimango. Have been monitoring this forum for a few years but never neede...

Jimango

•5 years ago

3 Replies

Hip Aches

Hi all, I hope your all doing well, it’s been a while since I posted. I have started to get these really painful hip aches and was wandering if this is a...

Hi all, I hope your all doing well, it’s been a while since I posted. I have sta...

P-O-T-S

•5 years ago

17 Replies

Pink stretch marks

Hello friends, What are those pink strecth marks on my biceps. They were not there before. I am only 18 yo old. Am I suffering from skin disease ?

Hello friends, What are those pink strecth marks on my biceps. They were not th...

Rohit008

•5 years ago

4 Replies

MPN-MATEs First Fundraiser Showreel

Hey everyone... :-) Just wanted to share our first Promo Showreel with all of you... Best wishes to all the MPN Fundraisers out there... Steven (Sydney)...

Hey everyone... :-) Just wanted to share our first Promo Showreel with all of y...

socrates_8

•5 years ago

6 Replies

Little red spots

Are little red spots on your legs a common thing with ET or is my moth infestation attacking me when I’m asleep??

Are little red spots on your legs a common thing with ET or is my moth infestati...

Andra13

•5 years ago

14 Replies

Question for the ladies

Hi my PV family, I am coming up to 58 in October and have been having what feels like constant period cramps. I did get referred to a gynaecologist a few...

Hi my PV family, I am coming up to 58 in October and have been having what feels...

jillydabrat

•5 years ago

10 Replies

Extreme fatigue

Hi I may have questioned this before at an earlier time but it is still a big concern. My partner has post ET myelofibrosis. (ET for 5 years, diagnosed with...

Hi I may have questioned this before at an earlier time but it is still a big co...

Goldfish212

•5 years ago

8 Replies

Sharps Bin

I'm on Hydro and Pega.. Does your consultant / hospital supply a sharps bin?

shiftzz

•5 years ago

7 Replies

Bruising

I was diagnosed ET JAK2+ a couple of months ago and have been on low dose aspirin since just before that. For the last month I have been bruising ridiculously...

I was diagnosed ET JAK2+ a couple of months ago and have been on low dose aspiri...

mjn500

•5 years ago

9 Replies

Pegasus and interfermenton

I’ve a uti got this antibiotics of dr any body taken it with Pegasus is there interactions

I’ve a uti got this antibiotics of dr any body taken it with Pegasus is there in...

Hahag

•5 years ago

4 Replies

BBC4 iPlayer documentary

I’d highly recommend a documentary which is on BBC4 iPlayer about a new trial for leucemia. It’s called ‘War in your blood’. It follows two patients who...

I’d highly recommend a documentary which is on BBC4 iPlayer about a new trial fo...

hybiscus

•5 years ago

13 Replies

anagrelide

Just starting low dose of this drug today after 3 yrs of HU. Reading the side effects has me terrified. Wonder if anyone older that 60 has ever had heart...

Just starting low dose of this drug today after 3 yrs of HU. Reading the side ef...

kp27kathleen

•5 years ago

38 Replies

hydroxycarbamide or pv

About 3-4 months ago I started to become anaemic with increasing nausea fatigue etc. MY haematologist reduced the dose of hydroxy I was taking, and I almost...

About 3-4 months ago I started to become anaemic with increasing nausea fatigue ...

paddy67

•5 years ago

9 Replies

Kidney infection and jakafi

Hello, all, So this past weekend I went to the emergency room because of severe lower back pain. It came on suddenly two nights before but I was in agony...

Hello, all, So this past weekend I went to the emergency room because of severe ...

Cja1956

•5 years ago

11 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for July 2019

Interferon injections

Kindness matters

Breakouts on the face

Newly diagnosed with ET. How to afford Pegasys???

Happy Saturday

Update after Haemo appointment.

First experiences with Pegasys for Polythycemia Vera

Family life with mf

MPN ET JAK2 HU un-diagnosed bacterial Pneumonia

How are you coping with the heat?

Anyone with ET- having hot flashes?

Options when MF is advanced

A phase 2 study of ruxolitinib in combination with azacitidine in patients with myelofibrosis

watermelon & low blood pressure

Combining Pegasys and ruxolitinib (Jakafi) for MF: has anyone tried it?

Pegasus

Interferon shortage?

Hip Aches

Pink stretch marks

MPN-MATEs First Fundraiser Showreel

Little red spots

Question for the ladies

Extreme fatigue

Sharps Bin

Bruising

Pegasus and interfermenton

BBC4 iPlayer documentary

anagrelide

hydroxycarbamide or pv

Kidney infection and jakafi

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