Posts - MPN Voice | HealthUnlocked

MPN Voice

10,992 members•15,371 posts

All posts for September 2018

Anyone still have symptoms of Secondary Polycycthemia after venesection ? Bone pain and itching like mad ?

I had my blood tests done and still at the same point. Secondary Polycycthemia and having the symptoms still. Have monthly venesection and the symptoms are...

I had my blood tests done and still at the same point. Secondary Polycycthemia a...

Kwebb

•6 years ago

3 Replies

Posting photos

How do I post some brain chem altering photos please?

Annushkah

•6 years ago

1 Reply

Introduction

Hello my name is sandra I have ET Iam on hydroxycarbamide twice Dailey Iam 52 and had it since January 2018 I am so happy to join this group as it’s been very...

Hello my name is sandra I have ET Iam on hydroxycarbamide twice Dailey Iam 52 an...

Angeltwin

•6 years ago

37 Replies

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Feeling different

Things haven't been going terribly well of late. My last bloods showed my platelets had increased and I am having a lot more lower back pain. I have had L3 and...

Things haven't been going terribly well of late. My last bloods showed my platel...

Graham7694

•6 years ago

7 Replies

Flu jab and pneumonia

Iam et jak2 positive on 45mg interferon or pegasys ( still cant remember). Yesterday morning I went for my flu jab and was told I need pneumonia jab too. So...

Iam et jak2 positive on 45mg interferon or pegasys ( still cant remember). Yeste...

Elab

•6 years ago

6 Replies

I’m so confused!

I’m currently seeing a gastroenterologist and I’ve been diagnosed with NAFL with stage 3 fibrosis. He has written to my doctor advising them to refer me to a...

I’m currently seeing a gastroenterologist and I’ve been diagnosed with NAFL with...

Hidden

•6 years ago

5 Replies

Medication

My medication has been doubled I have not been able to work is anyone the Same on hydroxycarbamide thank you .

My medication has been doubled I have not been able to work is anyone the Same o...

Smoothy

•6 years ago

2 Replies

Hydroxycafbamide

Hi my name is Sandra I was diagnosed with essential thrombocytopenia in January 2018 Iam taking hydroxycarbamide and feeling really tired does any one feel the...

Hi my name is Sandra I was diagnosed with essential thrombocytopenia in January ...

Smoothy

•6 years ago

8 Replies

A change from cats!

We've had a few beautiful pictures of cats lately so I thought I would show you my "support dogs" - just pets really but such a great help when you're feeling...

We've had a few beautiful pictures of cats lately so I thought I would show you ...

lizzziep

•6 years ago

15 Replies

Heart side effects of immunotherapy

Read in the National Cancer Institute site the possible heart side effects of immunotherapy. Quite scary! Cannot copy it unfortunately.

Read in the National Cancer Institute site the possible heart side effects of im...

Kelly2

•6 years ago

3 Replies

London forum

I am on the waiting list for 2 places at the London forum but have not heard anything yet - does anyone know if there are places left?

I am on the waiting list for 2 places at the London forum but have not heard any...

RosemaryHarper

•6 years ago

2 Replies

Spleen pain

My spleen grew 4 cm recently and the pain is unbearable! Does anyone else have this issue? I started back in Jakafi and was wondering how long it will take to...

My spleen grew 4 cm recently and the pain is unbearable! Does anyone else have ...

Murry33

•6 years ago

11 Replies

More decisions!

Hi, after my last post when I decided to go ahead on Hydroxycarbamide which I've been taking for just over 2 weeks, I have now been advised by my Radiotherapy...

Hi, after my last post when I decided to go ahead on Hydroxycarbamide which I've...

azaelea

•6 years ago

6 Replies

First day on Hydro.

I started the drug 3 hours now after months of procrastination. I was scared, I said prayers and had a loved one with me "just in case". I felt nothing up to...

I started the drug 3 hours now after months of procrastination. I was scared, I ...

Kelly2

•6 years ago

18 Replies

Cancer!

Hello everyone. I haven’t posted for a while. I’ve been taken off hydroxycarbamide as I am having treatment for bowel cancer. ( radiotherapy only! )The funny...

Hello everyone. I haven’t posted for a while. I’ve been taken off hydroxycarbami...

Juliet46

•6 years ago

24 Replies

Nottingham forum

Is anyone going to the forum in Nottingham next week? I've booked to go but I seem to have lost the details.

Is anyone going to the forum in Nottingham next week? I've booked to go but I se...

hall2

•6 years ago

3 Replies

Definitive response on how to handle Hydroxycarbamide

Hi all, Following my earlier post on the need for care in handling hydroxy, which generated a number of different responses, I decided to contact Medac Pharma,...

Hi all, Following my earlier post on the need for care in handling hydroxy, whic...

Ovingite

•6 years ago

6 Replies

Aime

Hi Guys, for those who love cats, here is Aime who looks sweet but is definitely the boss but let’s my hubby think he is! But she is sweet when I’ve had an...

Hi Guys, for those who love cats, here is Aime who looks sweet but is definitel...

Aime

•6 years ago

18 Replies

Milburn - Information on Radioactive Phosphate P32

I have being suffering from ET for the last 11 years. This has been controlled very successfully with Hydroxycarbamide through this period. Earlier this year...

I have being suffering from ET for the last 11 years. This has been controlled v...

Milburn

•6 years ago

4 Replies

Dry Cough

Is coughing a side effect of taking Hydroxycarbamide? I am constantly coughing. As explained before I am an ET patient and JAK2+. My haemo does not think so...

Is coughing a side effect of taking Hydroxycarbamide? I am constantly coughing. ...

Trinigirl

•6 years ago

10 Replies

Cherry angiomas

ET diagnosed 20 years ago still only on aspirin. Started getting these cherry angiomas all over my torso area the last year or so. Anyone else ?

ET diagnosed 20 years ago still only on aspirin. Started getting these cherry an...

Chuck309

•6 years ago

11 Replies

No fear Milo

And now for no fear Milo

Superwoman

•6 years ago

14 Replies

My Pussy cats

Thought I would share a phot of my two cats Smithy is the short haired and Milo is the long haired one. Jean

Thought I would share a phot of my two cats Smithy is the short haired and Milo ...

Superwoman

•6 years ago

8 Replies

ET struggle

Hey there, I was diagnosed with ET Last year after testing positive for CalR mutation .. I have always suffered from dizziness and constant fatigues and...

Hey there, I was diagnosed with ET Last year after testing positive for CalR mut...

Wadz

•6 years ago

10 Replies

New name

Hi I was Skye333 but as I was looking for an easier login site I decided to change to redrose25. I hope it works now. Thank you for the advice I will...

Hi I was Skye333 but as I was looking for an easier login site I decided to chan...

Redrose25

•6 years ago

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ET and kidney stones / infection

Morning all, I hope your all well? I’m after any advice / experience! I have ET Jak2+ (on aspirin alone) playlets remain steady at around 600+. I have two...

Morning all, I hope your all well? I’m after any advice / experience! I have ET...

Trocken

•6 years ago

2 Replies

Dietary restrictions.

Hi all. I have been on this chat before. I am an MPN patient with ET and JAK2+. Can anyone tell me if I need to be on a special diet? Over the last year I have...

Hi all. I have been on this chat before. I am an MPN patient with ET and JAK2+. ...

Trinigirl

•6 years ago

23 Replies

Good results

Evening all, Well I was at the hospital this morning for my four monthly blood tests and saw my lovely Haematologist who said that all my bloods were really...

Evening all, Well I was at the hospital this morning for my four monthly blood t...

Superwoman

•6 years ago

9 Replies

To go onto meds or not?

Hi Guys, just wanted some second opinions from those who have PV and have moved from venesection only to some of the more serious meds. My blood counts at the...

Hi Guys, just wanted some second opinions from those who have PV and have moved ...

Aime

•6 years ago

17 Replies

Acute Myeloid Leukaemia

Hi. I my husband has Myelofibrosis-hgb 100, wcc just below 25. When I asked about immature cells, his consultant said they were less than 0.5%. I asked what...

Hi. I my husband has Myelofibrosis-hgb 100, wcc just below 25. When I asked abou...

Fika500

•6 years ago

12 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for September 2018

Anyone still have symptoms of Secondary Polycycthemia after venesection ? Bone pain and itching like mad ?

Posting photos

Introduction

Feeling different

Flu jab and pneumonia

I’m so confused!

Medication

Hydroxycafbamide

A change from cats!

Heart side effects of immunotherapy

London forum

Spleen pain

More decisions!

First day on Hydro.

Cancer!

Nottingham forum

Definitive response on how to handle Hydroxycarbamide

Aime

Milburn - Information on Radioactive Phosphate P32

Dry Cough

Cherry angiomas

No fear Milo

My Pussy cats

ET struggle

New name

ET and kidney stones / infection

Dietary restrictions.

Good results

To go onto meds or not?

Acute Myeloid Leukaemia

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