Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for October 2015

Saturdays a bit quiet!

Need a smile ?? O.k. Here I go again !!

Twinkly

•9 years ago

7 Replies

MPDVoice Saturday

Who is going to the MPDVoice day in November? Providing I get back from NZ in time I am going with Margeret Kaye from Devon and we are meeting 5-6 others from...

Who is going to the MPDVoice day in November? Providing I get back from NZ in ti...

MFBMT2011

•9 years ago

10 Replies

Lumps in abdomen

Hi all, I was diagnosed with lumps in my lower abdomen near my right hip bone: one 1/2 inch or so and multiple little ones. Can't see oncologist until Tuesday...

Hi all, I was diagnosed with lumps in my lower abdomen near my right hip bone: ...

katiewalsh

•9 years ago

10 Replies

Want to take advantage of all our features? Just log in!

Let's be careful out there Ladies!

Safety first this weekend ladies!

lizzziep

•9 years ago

5 Replies

High Normal Blood Work but JAK2 Positive

My HGB is 14.6, HCT is 43.5, RBC 8.81, RDW is 14.5, Platelets 370

Sklines

•9 years ago

16 Replies

Hello everybody .Its Friday .the wedding went really well ..the sun was shining ,bluebirds were singing ..we had a happy day .

Here's the picture of my family as promised ..the happy faces are guenuine ..the wedding was to celebrate ,my son perry and his girl .together 26 years ,,,who...

Here's the picture of my family as promised ..the happy faces are guenuine ..the...

Twinkly

•9 years ago

8 Replies

High Normal Bloodwork but JAK2 positive.

My platelets were 500,000 about 3 hrs ago. GP sent me to hemo. Had all kinds of Bloodwork done which was normal. Hgb and Hct on high end of normal....

My platelets were 500,000 about 3 hrs ago. GP sent me to hemo. Had all kinds o...

Sklines

•9 years ago

5 Replies

FITNESS & HEALTHY EATING , DOES PAYS OFF❤️

Hi ... Had my Annual check up What a difference a year makes , I've tried so hard keeping Salt /fat /sugar to a minimum over the last year & was delighted...

Hi ... Had my Annual check up What a difference a year makes , I've tried so ...

Phelpsy

•9 years ago

18 Replies

Bony Mass behind ear?

Okay so when I was younger, say 12 I remmeber going to the doctors for a large lump behind my ear, not like a marble, but it feels like the bone is just raised...

Okay so when I was younger, say 12 I remmeber going to the doctors for a large l...

HaydenTaylor

•9 years ago

5 Replies

I'm taking ruxolitinib ...in new boxes now ,but it's the same medicine ,I feel good .ten years younger !!

Been on the Majic trial for two years ,,I'm feeling really well .at clinic yesterday my specialist Anna was extremely pleased .my blood results were excellent...

Been on the Majic trial for two years ,,I'm feeling really well .at clinic yeste...

Twinkly

•9 years ago

12 Replies

Danazol

My husband and I went to see his haematologist Hoping to be put on to some trial drug. We were told that none if the new trials were suitable and suggested he...

My husband and I went to see his haematologist Hoping to be put on to some trial...

ardpatrick

•9 years ago

10 Replies

Disappointing

Been on HU for 6 weeks Started at 608 platelets the after 2 weeks were 597 then two weeks later they were down to 475 which was very pleasing Today at my...

Been on HU for 6 weeks Started at 608 platelets the after 2 weeks were 597 then...

Hidden

•9 years ago

19 Replies

Jak 2+ or Jak 2-

Questions to all, does anyone know what the difference is if you are Jak 2 positive verses Jak 2 negative?? I read somewhere where everyone has the Jak 2...

Questions to all, does anyone know what the difference is if you are Jak 2 posit...

mickey64

•9 years ago

22 Replies

THANKS

Hi. I just want all of you to realize how amazing and wonderful you are. You're kind, concerned & compassionate and uplifting. I read most of the posts and...

Hi. I just want all of you to realize how amazing and wonderful you are. You're...

katiewalsh

•9 years ago

14 Replies

Checking in

Hello, I've been away from here for a bit.....nothing been wrong just life has got a bit hectic and crazy. So blood; I've been reduced on the HU to 1 x 5 days...

Hello, I've been away from here for a bit.....nothing been wrong just life has g...

Chelle_

•9 years ago

23 Replies

HU and What It Says On the Script

I've been taking HU for about 4 years now. How I handle the "Do Not Touch" is this. I pour one capsule out onto the cap of the bottle and then slip it into...

I've been taking HU for about 4 years now. How I handle the "Do Not Touch" is t...

Pollywog

•9 years ago

2 Replies

Possible enlarged spleen??

I have ET, JAK 2 negative. I've been having twinges under my left ribs for a while, when I mentioned this to my GP he said it was probably "rebound" pain from...

I have ET, JAK 2 negative. I've been having twinges under my left ribs for a whi...

lizzziep

•9 years ago

10 Replies

Nausea

Hi. Just wondering, has anyone experienced nausea from the MPN (before starting meds)? I've had nausea after eating for the past 1 1/2 years. I have ET and...

Hi. Just wondering, has anyone experienced nausea from the MPN (before startin...

katiewalsh

•9 years ago

9 Replies

HU and what it says on the script

Well picked up my meds today, had been putting it off, thought I would give it a try. I'm reading the long incredible list of everything that could happen, I...

Well picked up my meds today, had been putting it off, thought I would give it a...

mickey64

•9 years ago

29 Replies

Hair

Hello everyone Regarding hair.. My little treat is to have my hair coloured every two months at my hairdressers ; Was wondering if it's still ok to do...

Hello everyone Regarding hair.. My little treat is to have my hair coloured...

Hidden

•9 years ago

21 Replies

October is a grey month ..

So come on and join me in a pensive thought ,,,, Kisses. Xx

Twinkly

•9 years ago

6 Replies

ET symptoms/leg cramps night

Any one have night cramps in legs, I have these for years and years, knock me right out of bed, but seem to be worse now, had two test which showed nothing,...

Any one have night cramps in legs, I have these for years and years, knock me ri...

mickey64

•9 years ago

15 Replies

Myelofibrosis

My fiance is newly diagnosed with early myelofibrosis. He asked the doctor if it would affect his life span and the doctor said no. My understanding is that...

My fiance is newly diagnosed with early myelofibrosis. He asked the doctor if it...

maxineathersych

•9 years ago

7 Replies

Where Did You Get That Hat ??

My sister bought me this hat, but why do the Chinese makers think we have huge elongated heads?? I have to fold it back on itself about 3 or 4 times, mind you...

My sister bought me this hat, but why do the Chinese makers think we have huge e...

JediReject

•9 years ago

13 Replies

Er,,,, What's Up Doc ???........

Hi Folks, , Thought it was about time I 'signed in' as I know I've been a tad off radar of late. . Hey I'm doing ok got a few issues the gout in my foot being...

Hi Folks, , Thought it was about time I 'signed in' as I know I've been a tad of...

JediReject

•9 years ago

45 Replies

MPN wristbands

Hi Guys, does anyone know if you can get specific wristbands from anywhere.....? I've know that MPNVoice do MPNVoice wristbands but I was after a PV...

Hi Guys, does anyone know if you can get specific wristbands from anywhere.....?...

CountySteve

•9 years ago

6 Replies

Had a couple of rough weeks ,broken sleep and severe indigestion..when I did sleep coulorful nightmare,s ,,,very red !

But as soon as I called the nurse at the cancer unit at hospital ,She approached my special doctor ,who sent a prescription to the pharmacy ..Im so much better...

But as soon as I called the nurse at the cancer unit at hospital ,She approached...

Twinkly

•9 years ago

13 Replies

Feeling little nervous - flying after a thrombosis

Hi all Now this is a little silly I know. I am flying to Berlin tomorrow for a few days break. Last time I was on a plane was June 2012 when I flew to...

Hi all Now this is a little silly I know. I am flying to Berlin tomorrow for a ...

Hidden

•9 years ago

12 Replies

Resource?

Hi. I saw a post about a forum run by a guy with PV that includes folks w/ all types of MPNs. but I can't find it again. Could someone give me that info or...

Hi. I saw a post about a forum run by a guy with PV that includes folks w/ all t...

katiewalsh

•9 years ago

3 Replies

Symptoms of ET

Can anyone tell me what there symptoms were before bringing there platelets down with meds. These are mine, not sure if they are related to ET, Anxiety or...

Can anyone tell me what there symptoms were before bringing there platelets down...

mickey64

•9 years ago

15 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for October 2015

Saturdays a bit quiet!

MPDVoice Saturday

Lumps in abdomen

Let's be careful out there Ladies!

High Normal Blood Work but JAK2 Positive

Hello everybody .Its Friday .the wedding went really well ..the sun was shining ,bluebirds were singing ..we had a happy day .

High Normal Bloodwork but JAK2 positive.

FITNESS & HEALTHY EATING , DOES PAYS OFF❤️

Bony Mass behind ear?

I'm taking ruxolitinib ...in new boxes now ,but it's the same medicine ,I feel good .ten years younger !!

Danazol

Disappointing

Jak 2+ or Jak 2-

THANKS

Checking in

HU and What It Says On the Script

Possible enlarged spleen??

Nausea

HU and what it says on the script

Hair

October is a grey month ..

ET symptoms/leg cramps night

Myelofibrosis

Where Did You Get That Hat ??

Er,,,, What's Up Doc ???........

MPN wristbands

Had a couple of rough weeks ,broken sleep and severe indigestion..when I did sleep coulorful nightmare,s ,,,very red !

Feeling little nervous - flying after a thrombosis

Resource?

Symptoms of ET

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