Posts - MPN Voice | HealthUnlocked

MPN Voice

10,992 members•15,371 posts

All posts for August 2015

Alternatives to HU

What alternatives to hydroxycarbamide or additions to HU have people experienced when it has stopped working efficiently.

What alternatives to hydroxycarbamide or additions to HU have people experienced...

liarose

•9 years ago

7 Replies

DEL BOY EAT YOUR HEART OUT

Trying to make best use of available props, , Things going OK and as expected, few unpleasant effects but I'm coping with them. . Wiped out this morn but...

Trying to make best use of available props, , Things going OK and as expected, ...

JediReject

•9 years ago

52 Replies

I must share againm

A lady returns to her car in a parking lot only to realize that she has locked her keys in the car. She has noone to call and there is nobody there in the...

A lady returns to her car in a parking lot only to realize that she has locked h...

cannonfire

•9 years ago

9 Replies

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dvt

ive been on clexane for a few years never had my blood checked and been told im on clexane for life is this safe?

ive been on clexane for a few years never had my blood checked and been told im ...

barryb458

•9 years ago

4 Replies

I had a brown age / cancer mark come onto my face .I started gently rubbing bio oil into it .wow it's fading !!

Need to use it after a warm bath or shower ,it's good on scars ,on sore feet ,the hard skin areas and sore heels .but I never used it on my face untill now. I...

Need to use it after a warm bath or shower ,it's good on scars ,on sore feet ,th...

Twinkly

•9 years ago

11 Replies

Yesterday's reminder

Hi guys, had a haem appointment yesterday which went well and I was feeling good until the haem said, we have to keep an eye on you because PV can progress!...

Hi guys, had a haem appointment yesterday which went well and I was feeling good...

Aime

•9 years ago

17 Replies

Day 1

Hey Guys , well I made it. . Had Hickman Line inserted and already had a wee bag of innocuous chemo down it. . Hmm. Not sure how I will be feeling in a day or...

Hey Guys , well I made it. . Had Hickman Line inserted and already had a wee bag...

JediReject

•9 years ago

58 Replies

Anyone else had liver damage - and what was the cause - wrongly diagnosed?

Trying to get to the bottom of my MPN (seemingly now unclassified). I had two clots in the Mesenteric vein and Portal vein leading to surgery. At first it...

Trying to get to the bottom of my MPN (seemingly now unclassified). I had two cl...

MarkD6701

•9 years ago

16 Replies

Wondering

I have read that JAK 2 is caused by trauma or exposure to ionizing radiation. In 2011 I totaled my harley ( it was a sad day). Spent months incapacitated....

I have read that JAK 2 is caused by trauma or exposure to ionizing radiation. I...

cannonfire

•9 years ago

1 Reply

Please Help my daughter Nicola raise money for a great cause.

Please click on the link and help my daughter raise money. A lot of people on MPD Voice helped Nicola raise money for the last two years. We Thank You for all...

Please click on the link and help my daughter raise money. A lot of people on MP...

wendycu

•9 years ago

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The Gift

The last few weeks have been an emotional time as you might imagine. . Well you know me well enough by now to know that I oft set my thoughts down on paper. ....

The last few weeks have been an emotional time as you might imagine. . Well you ...

JediReject

•9 years ago

29 Replies

Laughter is medicine

Ok. I have a joke. I pray it offends noone. If you smile it is good. If you laugh iam happy. Did you hear about the chameleon that couldn't change colors?...

Ok. I have a joke. I pray it offends noone. If you smile it is good. If you lau...

cannonfire

•9 years ago

11 Replies

Altitude sickness

I have returned from my holiday in Tenerife having had a wonderful time. I did make it to the top of the chair lift on Mt Teide after an interesting journey...

I have returned from my holiday in Tenerife having had a wonderful time. I did ...

Little-friend-Susan

•9 years ago

7 Replies

Red Blood Counts - ET

I have ET, jak 2 negative, and am on HU and aspirin. Has anybody else had low red blood counts, mine have been a bit low for over a year, not massively so,...

I have ET, jak 2 negative, and am on HU and aspirin. Has anybody else had low r...

lizzziep

•9 years ago

8 Replies

New glass for my aspirin ...

Doesn't it look delicious lol xx

Helen1952

•9 years ago

7 Replies

Newly diagnosed

Recently diagnosed ET JAK2. I always knew I was unusual but now I know I am jakd up and mutated. I am always looking for new information and hearing about...

Recently diagnosed ET JAK2. I always knew I was unusual but now I know I am jak...

cannonfire

•9 years ago

17 Replies

It's Sunday !

I'm feeling really well and extremely happy ..my son is getting married ,Been with his lady for 25 years ..who says state of mind doesn't help us ?

I'm feeling really well and extremely happy ..my son is getting married ,Been wi...

Twinkly

•9 years ago

14 Replies

Ruxolitinib at last

Greetings from the Antipodes. At long last and unexpectedly I have been approved to commence Ruxolitinib/Jakavi I have PV and was previously on a Fedratinib...

Greetings from the Antipodes. At long last and unexpectedly I have been approved...

hackett

•9 years ago

11 Replies

Good news!!

Hello all, I want to share my good news with you. You may remember my post of 4weeks ago when I was worried about rising platelets and the possibility that...

Hello all, I want to share my good news with you. You may remember my post of 4w...

Nickthedevil

•9 years ago

36 Replies

When I had a bad result ,at my last clinic appointment .I left the Majic trial .so sad like leaving my family .But good news !!

Because my results of my B,M ,test confirmed now I have progressed on to MPN.. From the PV ..I was diagnosed with originally ..It's a big shock ,leaves you...

Because my results of my B,M ,test confirmed now I have progressed on to MPN.. ...

Twinkly

•9 years ago

26 Replies

Suggestion for Research

I would like to target the several steps of the platelet production process characteristic of ET. This process has several steps, each of which can be...

I would like to target the several steps of the platelet production process char...

dscotese

•9 years ago

6 Replies

Raised white blood cell count

I was just wondering if anyone else has raised wbc count? Mine appears to have been rising over the past year and is now above the normal levels. My Dr told me...

I was just wondering if anyone else has raised wbc count? Mine appears to have b...

LRH1977

•9 years ago

11 Replies

To be classified or not with the correct MPN

In my quest to get a correct diagnosis for travel insurance I spoke to one of my doctors and he said that my MPN seems to fall in between a few different...

In my quest to get a correct diagnosis for travel insurance I spoke to one of my...

MarkD6701

•9 years ago

12 Replies

Daratumumab Drug Trial

Hello I was wondering if anyone has heard of a new drug (I think) called Daratumumab. There was a small piece in the newspaper (Perth WA) regarding this new...

Hello I was wondering if anyone has heard of a new drug (I think) called Daratum...

cheridiane

•9 years ago

6 Replies

Weak nails

High fellow MPN suffers, not sure if this will be of any use to us ladies, but I was told I had ET JAK 2 positive two years ago and take Hydroxy and Asprin...

High fellow MPN suffers, not sure if this will be of any use to us ladies, but I...

Superwoman

•9 years ago

17 Replies

Critical illness

Ok another question can I ask you all when you took out your critical illness cover and when you were diagnosed. Also whether they were comprehensive or basic...

Ok another question can I ask you all when you took out your critical illness co...

Hidden

•9 years ago

9 Replies

Debilitating night sweats anyone?

Another question for all you lovely people... I know night sweats can be a symptom of ET and some nights they are so bad that they affect my sleep and I'm like...

Another question for all you lovely people... I know night sweats can be a sympt...

YogaLover

•9 years ago

8 Replies

Critical illness claim

Hi, having read so much about people claiming on their critical illness policy. I decided to try too. My consultant has said that polycythemia is not a...

Hi, having read so much about people claiming on their critical illness policy....

Hidden

•9 years ago

28 Replies

ET and Ulcers!

Hi everyone, my first time on the forum. I was diagnosed with ET/CALR late 2014. I take Hydroxycarbamide 500/1000mg on alternative days plus the obligatory...

Hi everyone, my first time on the forum. I was diagnosed with ET/CALR late 2014....

Calmat

•9 years ago

11 Replies

Did I tell you about my broken sleep ?? Cramp ,, just got to the bit where I was getting that big silver trophy at best in show ..woke up ..

Took myself off to the doctors ,,the nurse was so lovely .gave me some pills for quinine ,now my night sleep is unbroken ..and my dreams are uninterrupted...

Took myself off to the doctors ,,the nurse was so lovely .gave me some pills for...

Twinkly

•9 years ago

9 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for August 2015

Alternatives to HU

DEL BOY EAT YOUR HEART OUT

I must share againm

dvt

I had a brown age / cancer mark come onto my face .I started gently rubbing bio oil into it .wow it's fading !!

Yesterday's reminder

Day 1

Anyone else had liver damage - and what was the cause - wrongly diagnosed?

Wondering

Please Help my daughter Nicola raise money for a great cause.

The Gift

Laughter is medicine

Altitude sickness

Red Blood Counts - ET

New glass for my aspirin ...

Newly diagnosed

It's Sunday !

Ruxolitinib at last

Good news!!

When I had a bad result ,at my last clinic appointment .I left the Majic trial .so sad like leaving my family .But good news !!

Suggestion for Research

Raised white blood cell count

To be classified or not with the correct MPN

Daratumumab Drug Trial

Weak nails

Critical illness

Debilitating night sweats anyone?

Critical illness claim

ET and Ulcers!

Did I tell you about my broken sleep ?? Cramp ,, just got to the bit where I was getting that big silver trophy at best in show ..woke up ..

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