Posts - MPN Voice | HealthUnlocked

MPN Voice

10,443 members • 14,393 posts

All posts for December 2015

Christmas

Love and best wishes, along with good health and happiness to you all. Hoping against all the odds for a more peaceful world in the new year and an end to the...

Love and best wishes, along with good health and happiness to you all. Hoping ag...

Hidden

•8 years ago

3 Replies

After today's appointment I'm confused.com

I had my regular 8 weekly blood check today and all the results came back fine, Hb and Hct within 'normal' range. Which is excellent news for me as after...

I had my regular 8 weekly blood check today and all the results came back fine, ...

Kari1961

•8 years ago

6 Replies

I'm missing my lovely boy ..J,R,,

So I'm posting a loving thought ..just in case he gets connected ..to let him know I think of him every day !! Twinkly .. Xxxx

So I'm posting a loving thought ..just in case he gets connected ..to let him kn...

Twinkly

•8 years ago

28 Replies

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Effect of an upset stomach on your meds?

Occasionally I get an upset stomach but surprisingly every time it happens my INR score seems to go upwards for example. I would have thought the opposite as...

Occasionally I get an upset stomach but surprisingly every time it happens my IN...

MarkD6701

•8 years ago

4 Replies

Many New Videos Rolling Out from ASH

Dear friends, we recorded many interviews with experts from the just completed ASH conference in Florida and almost every day we post more for your viewing....

Dear friends, we recorded many interviews with experts from the just completed A...

andrewschorr

•8 years ago

Be the first to reply

Bruising on HU

Hi I have a question I have been on HU for a month I get my blood tested every 2 weeks last week the raised my dose because platlets were going up. I have got...

Hi I have a question I have been on HU for a month I get my blood tested every 2...

Anne4boys

•8 years ago

15 Replies

Please please help Lump on the front of my ear ****

Hi all thank you for taking the time to read this. I am starting to get very worried 14 days ago I noticed a small pea sized lump on the side of my face...

Hi all thank you for taking the time to read this. I am starting to get very wor...

Mummycaz1

•8 years ago

12 Replies

Severe nerve pain?

Help, I have been experiencing a lot of (quite severe) nerve pain down my legs over last few days. I know HU can cause nervous system issues but, crikey, I...

Help, I have been experiencing a lot of (quite severe) nerve pain down my legs ...

Karol_Rua

•8 years ago

2 Replies

Sorry!! Here it is!!

Turns out I'm pretty rubbish at this!

Polly-PV

•8 years ago

1 Reply

24yr old skull change

Hello everyone' I'm 24 yrs old and within the last 2 years or so I have noticed that the right side of my head above my temple seems to be indented. It's a lot...

Hello everyone' I'm 24 yrs old and within the last 2 years or so I have noticed ...

Brandon4151

•8 years ago

4 Replies

Off to the MPD coffee morning ..but as usual ,,thinking of J.R. .more news later !!

Keep the faith ..my lovely boy ... From twinkly ! Xxxx

Twinkly

•8 years ago

5 Replies

Out of date Interferon

I discovered that my Intron A interferon was 3 months out of date when I went to give myself my jab last night. Does anyone know if this is dangerous? Thanks...

I discovered that my Intron A interferon was 3 months out of date when I went to...

harleydavidson

•8 years ago

5 Replies

Combo therapy Ruxolitinib and Pegasys, ASH 2015. - hot off the press!

Here is the abstract from Hasselbalch combo: http://ativsoftware.com/appinfo.php?page=Inthtml&project=ASH15&server=ep70.eventpilotadmin.com&id=85751P I have...

Here is the abstract from Hasselbalch combo: http://ativsoftware.com/appinfo.php...

PVReporter

•8 years ago

2 Replies

face feels like sunburned but not feels hot?

Does anyone have any problems with there face feel like it sunburned?? its not red but its incredibly warm, feels warm (hot) just started yesterday. I'm on...

Does anyone have any problems with there face feel like it sunburned?? its not ...

mickey64

•8 years ago

2 Replies

Our J.R. Sent a message ,,hes out of isolation but very limited access to Internet so can't really reply to us !

He is just now on a drip so he's in a good place to get the best care ..he knows we are sending our love to him on mass !! Twinkly xxxx

He is just now on a drip so he's in a good place to get the best care ..he knows...

Twinkly

•8 years ago

38 Replies

Sex?

Hi. I have some questions of a sexual nature and am wondering if it's ok to ask them on here? Katie

Hi. I have some questions of a sexual nature and am wondering if it's ok to ask ...

katiewalsh

•8 years ago

6 Replies

Wednesday 9th drop in Cambridge

Dont forget the coffee morning get together at scotsdales garden centre ,cambridge. It's a lovely venue, set in the gardens . It's this Wednesday 10.30...

Dont forget the coffee morning get together at scotsdales garden centre ,cambrid...

Hidden

•8 years ago

Be the first to reply

This is a reminder ..for those of you that may have missed this news .on Wednesday coming ,the 9 th December ,we are organising a drop ..

A coffee morning from 10,30 .at Cambridge ..it's at scotsdales garden centre ,,in the gardens is a lovely building .As a cancer support centre .The warm...

A coffee morning from 10,30 .at Cambridge ..it's at scotsdales garden centre ,,i...

Twinkly

•8 years ago

1 Reply

Late night for Lesley

Well, off out for my daughters company Christmas dinner this evening. Could be up after 9.30 haha!

Well, off out for my daughters company Christmas dinner this evening. Could be ...

Sand-Dancer

•8 years ago

10 Replies

Hydroxy quickly failing to control platelets.

I'm new to Hydroxy and have a question. After about 8 weeks on Hydroxy my platelets are climbing again. It took around 4 weeks on Hydroxy for the levels to...

I'm new to Hydroxy and have a question. After about 8 weeks on Hydroxy my platel...

katiewalsh

•8 years ago

7 Replies

ET and varicose veins

Hi Everyone, Does anyone know if there is any correlation between ET and varicose veins? I was diagnosed with ET in July, started Hydrea at the end of...

Hi Everyone, Does anyone know if there is any correlation between ET and varic...

Kathymoore

•8 years ago

8 Replies

Pegasys 'holiday'

As my blood counts have continued to go down, even after a trial of fortnightly injections, have been told to stopped them for now. Anyone else had to do...

As my blood counts have continued to go down, even after a trial of fortnightly ...

MarieNZ

•8 years ago

1 Reply

Platelet levels normal...can I stop?

I've now been on a weekly dose of Pegasys (Peginterferon) for ET for about 4 months. My checkup last week showed that my platelet count is now below 400....

I've now been on a weekly dose of Pegasys (Peginterferon) for ET for about 4 mon...

dengor

•8 years ago

12 Replies

woohoo

Ok lab work done results in. Platelets down 43 points from 510 to 467. I attribute this to prayer and pomegranate pills. Been doing some experiments with...

Ok lab work done results in. Platelets down 43 points from 510 to 467. I attri...

cannonfire

•8 years ago

12 Replies

Hydroxy side effect

I've been on 500mg of Hydroxy for 10 weeks. Right from the off I've experienced constipation. At my last clinic visit my consultant prescribed Senna. It...

I've been on 500mg of Hydroxy for 10 weeks. Right from the off I've experienced ...

Shortcyclist

•8 years ago

18 Replies

Platelets up a bit

I've been to the hospital today, my platelets were up a bit from 375 to 465. Haem just said they would keep an eye on it, I'm still a bit anaemic too. But...

I've been to the hospital today, my platelets were up a bit from 375 to 465. Hae...

lizzziep

•8 years ago

19 Replies

Cambridge coffee morning

Hi all. I am going to the coffee morning that Twinkly has arranged. I am in Chelmsford, Essex if anyone needs a lift. I can take 3 people xx

Hi all. I am going to the coffee morning that Twinkly has arranged. I am in Che...

Karen1970

•8 years ago

2 Replies

Send your positive vibes to our Jedi reject today my buddy's.

We all of us tread this difficult road ..let us together send our love and caring to our mate who is feeling the need of our combined support !!! He's my...

We all of us tread this difficult road ..let us together send our love and carin...

Twinkly

•8 years ago

54 Replies

Heidi’s MPN Story – An Increasing Trend in Patient Advocacy

Just wanted to share our latest work from PV Reporter, as we see an increasing trend in patient advocacy! - You are your own best advocate and should become...

Just wanted to share our latest work from PV Reporter, as we see an increasing t...

PVReporter

•8 years ago

5 Replies

Our motto?

I think this has to be my motto - what about you? Lesley xxx

Sand-Dancer

•8 years ago

5 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for December 2015

Christmas

After today's appointment I'm confused.com

I'm missing my lovely boy ..J,R,,

Effect of an upset stomach on your meds?

Many New Videos Rolling Out from ASH

Bruising on HU

Please please help Lump on the front of my ear ****

Severe nerve pain?

Sorry!! Here it is!!

24yr old skull change

Off to the MPD coffee morning ..but as usual ,,thinking of J.R. .more news later !!

Out of date Interferon

Combo therapy Ruxolitinib and Pegasys, ASH 2015. - hot off the press!

face feels like sunburned but not feels hot?

Our J.R. Sent a message ,,hes out of isolation but very limited access to Internet so can't really reply to us !

Sex?

Wednesday 9th drop in Cambridge

This is a reminder ..for those of you that may have missed this news .on Wednesday coming ,the 9 th December ,we are organising a drop ..

Late night for Lesley

Hydroxy quickly failing to control platelets.

ET and varicose veins

Pegasys 'holiday'

Platelet levels normal...can I stop?

woohoo

Hydroxy side effect

Platelets up a bit

Cambridge coffee morning

Send your positive vibes to our Jedi reject today my buddy's.

Heidi’s MPN Story – An Increasing Trend in Patient Advocacy

Our motto?

Search posts

Pinned Posts

Latest poll

What age were you when your MPN was diagnosed?

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Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for December 2015

Christmas

After today's appointment I'm confused.com

I'm missing my lovely boy ..J,R,,

Effect of an upset stomach on your meds?

Many New Videos Rolling Out from ASH

Bruising on HU

Please please help Lump on the front of my ear ****

Severe nerve pain?

Sorry!! Here it is!!

24yr old skull change

Off to the MPD coffee morning ..but as usual ,,thinking of J.R. .more news later !!

Out of date Interferon

***Combo therapy Ruxolitinib and Pegasys, ASH 2015.*** - hot off the press!

face feels like sunburned but not feels hot?

Our J.R. Sent a message ,,hes out of isolation but very limited access to Internet so can't really reply to us !

Sex?

Wednesday 9th drop in Cambridge

This is a reminder ..for those of you that may have missed this news .on Wednesday coming ,the 9 th December ,we are organising a drop ..

Late night for Lesley

Hydroxy quickly failing to control platelets.

ET and varicose veins

Pegasys 'holiday'

Platelet levels normal...can I stop?

woohoo

Hydroxy side effect

Platelets up a bit

Cambridge coffee morning

Send your positive vibes to our Jedi reject today my buddy's.

Heidi’s MPN Story – An Increasing Trend in Patient Advocacy

Our motto?

Search posts

Pinned Posts

Latest poll

What age were you when your MPN was diagnosed?

Topics

Archive

Combo therapy Ruxolitinib and Pegasys, ASH 2015. - hot off the press!