Posts - MPN Voice | HealthUnlocked

MPN Voice

10,436 members • 14,384 posts

All posts for February 2016

Life can still be good

Had prv for many years , now got high intermediate MF and had a dose of CML. Been on rux for over 4 years. Yes it can be easy to focus on the disease rather...

Had prv for many years , now got high intermediate MF and had a dose of CML. Bee...

skodaguy

•8 years ago

18 Replies

Newly diagnosed

Recently diagnosed with essential thrombocythemia and have been put on Asprin! I am having dizzy spells , muscle pain, shock like pain which attacks different...

Recently diagnosed with essential thrombocythemia and have been put on Asprin! I...

Wendykim58

•8 years ago

11 Replies

Interferon, low mood and 5htp....

So I've been on interferon for a few months for ET. And whilst the physical side effects are unpleasant they are improving. The mental/emotional ones are...

So I've been on interferon for a few months for ET. And whilst the physical side...

Rochyne

•8 years ago

8 Replies

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

Changing meds :(

Hi I've got et and jake 2 posted . I've been on hydroxycarbamide for 3 yrs which worked wonders in bringing my platelets down fro 1800 to around 600. They have...

Hi I've got et and jake 2 posted . I've been on hydroxycarbamide for 3 yrs which...

soomoo

•8 years ago

12 Replies

vegetarians / vegans

Hi, I've just had a physiotherapy appointment for nerve damage in my leg (possibly from last bmb). I've never met this physio before and she was most...

Hi, I've just had a physiotherapy appointment for nerve damage in my leg (possib...

Karol_Rua

•8 years ago

14 Replies

Routine Gp blood test.

Had a call today to tell me im very low in Vitimin D ,so will have to take pills from Doctor ! i shall end up rattling ,hope this helps with my deppresion of...

Had a call today to tell me im very low in Vitimin D ,so will have to take pills...

Hidden

•8 years ago

8 Replies

Jedi & Twinkley

Hello to you both , we haven't heard from either of you for a while so miss you both. I do hope you are doing well .Twinkley you were awaiting an op, if you...

Hello to you both , we haven't heard from either of you for a while so miss you ...

Stevesmum42

•8 years ago

13 Replies

Life is hectic at the moment ..new pups are born ,,visits to hospital for tests ,pre surgery .date 15 th March ..

My blood results have been really excellent over the last few months .but Iv been scheduled for big surgery ,to repair my hiatus hernia (after 20 years...

My blood results have been really excellent over the last few months .but Iv bee...

Russians

•8 years ago

10 Replies

Anyone had this test ?

Hi before i see Doctor at hospital when i have my usual blood test before , she has asked for a LDH test ? so was wondering what this means regards Holly

Hi before i see Doctor at hospital when i have my usual blood test before , she ...

Hidden

•8 years ago

3 Replies

CAN TARGETING ALTERED METABOLISM TREAT CANCER? Interesting Discovering!

CAN TARGETING ALTERED METABOLISM TREAT CANCER? Long before Louis Pasteur became famous for proving that diseases were caused by germs, he worked in a beer...

CAN TARGETING ALTERED METABOLISM TREAT CANCER? Long before Louis Pasteur became ...

light

•8 years ago

1 Reply

PV and eosonphilia

Saw my hem today and my white blood is still high after being on Hydrea go 2 years. I also have very high Eosinophils. Ive been having lots of fatigue and have...

Saw my hem today and my white blood is still high after being on Hydrea go 2 yea...

spikesnana

•8 years ago

Be the first to reply

ET

I have ET and am taking hydroxy. I've just come down with a rotten cold (from the grandchildren) and have been trying to find anything that says cold...

I have ET and am taking hydroxy. I've just come down with a rotten cold (from ...

jeanr

•8 years ago

6 Replies

Has anybody got a baseball bat?

Because I sure need someone to clunk me one to make me sleep. I have had a bed alarm put on mums bed, she has a fall alarm around her wrist and I have a...

Because I sure need someone to clunk me one to make me sleep. I have had a be...

jillydabrat

•8 years ago

5 Replies

Anniversary - PV diagnosis

A strange thing to celebrate I know. But 12 months ago today I received confirmation of my diagnosis with PV :) Diagnosis was actually a relief after...

A strange thing to celebrate I know. But 12 months ago today I received confirma...

Kari1961

•8 years ago

12 Replies

Expert Explanation on Pacritinib Trials Hold

Here is our Patient Power breaking news interview with principal investigator Dr. Ruben Mesa from Mayo Clinic about what the FDA hold on the pacritinib trials...

Here is our Patient Power breaking news interview with principal investigator Dr...

andrewschorr

•8 years ago

1 Reply

New MPN Voice website

Our brand new website has been published http://www.mpnvoice.org.uk/ As you are aware, we changed our name from MPD Voice to MPN Voice to bring us in...

Our brand new website has been published http://www.mpnvoice.org.uk/ As you are...

Mazcd

Partner•8 years ago

9 Replies

Diagnosed with Essential Thrombocytosis with JAK2 negative with some of my red blood cells abnormally-shaped.

Hello I'm new to this forum and new to this Essential Thrombocytosis arena. I first went to my doctor for a routine blood test in October 2015 the blood test...

Hello I'm new to this forum and new to this Essential Thrombocytosis arena. I fi...

Cupcake5967

•8 years ago

6 Replies

Important notice regarding the PERSIST-1 and PERSIST-2 drugs trials using Pacritinib

CTI BioPharma, the licence holders for Pacritinib, has requested all patients stop taking pacritinib after it received information from the U.S. Food and Drug...

CTI BioPharma, the licence holders for Pacritinib, has requested all patients st...

Mazcd

Partner•8 years ago

Be the first to reply

Feeling a bit down ? - listen again to today's radio 4 You and yours

Hi everyone, Just listened to a great programme today on you and yours radio 4 re feeling miserable in middle age! Far from making anyone out there feel worse,...

Hi everyone, Just listened to a great programme today on you and yours radio 4 r...

Loubprv

Volunteer•8 years ago

4 Replies

Dr X, what an absolute doll you are

Finally got to see an MPN specialist, Dr X at James Cook University Hospital yeeahhhhhh. Feel so much better that someone sat me down and went through...

Finally got to see an MPN specialist, Dr X at James Cook University Hospital yee...

jillydabrat

•8 years ago

12 Replies

Hgb and transfusions

I have been on Jakafi since the end of September. I am now needing blood transfusions every 3 weeks, is there anything I can do to keep my hgb up for a...

I have been on Jakafi since the end of September. I am now needing blood trans...

Realtorlin

•8 years ago

10 Replies

Hi all

Have not been on here for awhile, been very down and depressed. In December I went to an MPN expert at John Hopkins for a second opinion on my ET and HU and...

Have not been on here for awhile, been very down and depressed. In December I w...

mickey64

•8 years ago

11 Replies

only February and yet another disaster

If you find this post full of mistakes then excuse me but I am fit to drop. at 5.30 this morning we awoke to such a crash. My poor old 92 year old mum had...

If you find this post full of mistakes then excuse me but I am fit to drop. at ...

jillydabrat

•8 years ago

15 Replies

Anxious, still waiting for a diagnosis

As I wrote a couple of weeks ago, I' ve had my third bmp, and the second with biopsy. The biopsy has not been analyzed yet, but the haematologist has done a...

As I wrote a couple of weeks ago, I' ve had my third bmp, and the second with bi...

Bittebitt

•8 years ago

5 Replies

I blame the pills!

Hope this brings a smile to you all!

Loubprv

Volunteer•8 years ago

9 Replies

Hope it makes a difference

Hi MPD family, Hubby and I had a final meeting with Kay from MacMillan CC regarding our experience from symptoms, diagnosis and treatment. We were told that...

Hi MPD family, Hubby and I had a final meeting with Kay from MacMillan CC regar...

jillydabrat

•8 years ago

10 Replies

hair issues

Hi was just wondereing if anyone noices there Hair condition changed , mine seems to feel greasy far faster than before , used to have dry hair mostly ! im due...

Hi was just wondereing if anyone noices there Hair condition changed , mine seem...

Hidden

•8 years ago

9 Replies

Been out of touch with you all ,Iv been hospital ,,many days ,preparing for gut surgery ,soon to be admitted ..wish me luck ..

I seem to have ruptured. my gut ,,been quite sick lately ..so I missed you all on this site ..but Iv just managed to log back in again ...keep in touch. Best...

I seem to have ruptured. my gut ,,been quite sick lately ..so I missed you all o...

Russians

•8 years ago

17 Replies

Slight temp and night sweats

Hi Guys, I know there have been posts before about rises in temperature. My blood counts were ok but going to get them checked soon but I am getting an...

Hi Guys, I know there have been posts before about rises in temperature. My bloo...

Aime

•8 years ago

6 Replies

Blood spots?

Hi my MPD family, I am just wondering if anybody else gets little red blood spots coming through the skin? 12 years ago I had vasculitis on my legs. Suddenly...

Hi my MPD family, I am just wondering if anybody else gets little red blood spot...

jillydabrat

•8 years ago

9 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for February 2016

Life can still be good

Newly diagnosed

Interferon, low mood and 5htp....

Changing meds :(

vegetarians / vegans

Routine Gp blood test.

Jedi & Twinkley

Life is hectic at the moment ..new pups are born ,,visits to hospital for tests ,pre surgery .date 15 th March ..

Anyone had this test ?

CAN TARGETING ALTERED METABOLISM TREAT CANCER? Interesting Discovering!

PV and eosonphilia

ET

Has anybody got a baseball bat?

Anniversary - PV diagnosis

Expert Explanation on Pacritinib Trials Hold

New MPN Voice website

Diagnosed with Essential Thrombocytosis with JAK2 negative with some of my red blood cells abnormally-shaped.

Important notice regarding the PERSIST-1 and PERSIST-2 drugs trials using Pacritinib

Feeling a bit down ? - listen again to today's radio 4 You and yours

Dr X, what an absolute doll you are

Hgb and transfusions

Hi all

only February and yet another disaster

Anxious, still waiting for a diagnosis

I blame the pills!

Hope it makes a difference

hair issues

Been out of touch with you all ,Iv been hospital ,,many days ,preparing for gut surgery ,soon to be admitted ..wish me luck ..

Slight temp and night sweats

Blood spots?

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