Posts - MPN Voice | HealthUnlocked

MPN Voice

10,722 members • 14,842 posts

All posts for December 2020

Christmas with the dogs, newly on Hydroxyurea

New diagnosis of High Risk ET (JAK 2 V617F Pos) and reluctantly started on Hydroxyurea two days ago. In the night (when I do my best thinking) it came to me...

New diagnosis of High Risk ET (JAK 2 V617F Pos) and reluctantly started on Hydro...

Planti

•4 years ago

18 Replies

Empty Chair

As we sit around the table for our Christmas fare It's hard not to miss an empty chair over there Normally it's taken by you dear old Dad But you're no...

As we sit around the table for our Christmas fare It's hard not to miss an empty...

JediReject

•4 years ago

36 Replies

Ropeginterferon-Treated Patients With Polycythemia Vera Significantly More Likely to Be Phlebotomy Free at 5 Years

« Additional results showed a pronounced difference in the molecular response (JAK2V617F burden) between the 2 treatment arms, with “striking superiority of...

« Additional results showed a pronounced difference in the molecular response (J...

Manouche

•4 years ago

5 Replies

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Advice please

Hi everyone I have PVR jak2 + and my husband has CLL. We live in Bulgaria so language barrier, are we safe to have the vaccine? Husband heard that CLL...

Hi everyone I have PVR jak2 + and my husband has CLL. We live in Bulgaria so lan...

Anneian

•4 years ago

2 Replies

swallowing hydroxycarbamide

I find the hydroxycarbamide capsules too large to swallow so have been told to empty contents into water. It doesn't seem right really.Is anyone else doing...

I find the hydroxycarbamide capsules too large to swallow so have been told to ...

Hidden

•4 years ago

29 Replies

Wishes

Merry Christmas and a Happy New Year to everyone.

MarPapa

•4 years ago

2 Replies

Sodabread

Has anyone with MF had the Covid vaccine yet?

Sodabread

•4 years ago

7 Replies

Is there a U.K. Zoom group, if so, how do I request joining? Wishing everyone as good a Christmas as possible, I will be home alone.

Said it all in the title, my mistake.

KentBee

•4 years ago

5 Replies

Please be inclusive.

I know you all mean well, but please be aware that not everyone (in the world, on this thread) celebrates Christmas/is Christian. Happy holidays/solstice/new...

I know you all mean well, but please be aware that not everyone (in the world, o...

Chicagopv

•4 years ago

17 Replies

Happy Christmas

Hi everyone just want to wish everybody a happy Christmas 🎄 and New year il be back on again soon all the best 🙂Xxx

Hi everyone just want to wish everybody a happy Christmas 🎄 and New year il be ...

Jody00

•4 years ago

5 Replies

Wishes

Merry Christmas 🎄 to everyone thank you for helping me along this journey we are all in it together it has meant a lot to me all have fun and laughter love to...

Merry Christmas 🎄 to everyone thank you for helping me along this journey we ar...

Windy51

•4 years ago

3 Replies

Crimble wishes

Hello people - wishing all MPN ers in whichever county, country, or continent a safe and peaceful Christmas - everyone take care + we will hope for a better...

Hello people - wishing all MPN ers in whichever county, country, or continent a ...

amhann

•4 years ago

5 Replies

Breathlessness

I would be interested to hear if any body has the feeling of not being able to fill your lungs. Its making me so lethargic. Even when I am doing nothing.

I would be interested to hear if any body has the feeling of not being able to f...

Tartanlady

•4 years ago

29 Replies

Greetings to all

Hello fellow Mpn’ers 👋 Just to wish you all a peaceful Christmas... A joyous new year ... Look after yourselves , Keep safe .. Lainie xxx

Hello fellow Mpn’ers 👋 Just to wish you all a peaceful Christmas... A joyous ne...

Melanie66

•4 years ago

3 Replies

Selected ASH Abstracts on Novel Treatments of Polycythemia Vera

« ... here are three abstracts selected from the meeting proceedings focusing on novel therapies for polycythemia vera. For full details of these study...

« ... here are three abstracts selected from the meeting proceedings focusing on...

Manouche

•4 years ago

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Merry Christmas

I would like to wish you all a Merry Christmas and a healthy, save, New Year. Take care everyone. All the best for 2022 x

I would like to wish you all a Merry Christmas and a healthy, save, New Year. Ta...

wendycu

•4 years ago

15 Replies

Side effects from Hydroxicarbamide

Hi began Hydroxycarbamide 8 weeks ago and have an increasingly sore mouth,shin pains and sore fingers and hands.Is there anyone who has also experienced...

Hi began Hydroxycarbamide 8 weeks ago and have an increasingly sore mouth,sh...

Hidden

•4 years ago

8 Replies

Besremi: Efficacy and Safety in Different Age Groups

« In summary, after 24 months ropeginterferon induced higher hematological and molecular response rates and higher maintenance of response than HU in PV...

« In summary, after 24 months ropeginterferon induced higher hematological and m...

Manouche

•4 years ago

3 Replies

Hydroxyurea dosage

I'm 32 with ET jak2 pos. My doctor recently left to work in a different area. I've been given a new doctor. The new doctor seems to be alot more aggressive. My...

I'm 32 with ET jak2 pos. My doctor recently left to work in a different area. I'...

Jbone636

•4 years ago

14 Replies

"Fight MPN"

I have received a recommendation from Health Unlocked about "Fight MPN", which seems to be another forum with very similar interests to those of MPN Voice but...

I have received a recommendation from Health Unlocked about "Fight MPN", which s...

JaK2ET

•4 years ago

3 Replies

Progression of PV

How do you know when your PV has progressed to MF?

Buggerbear

•4 years ago

19 Replies

When can we safely discontinue Pegasys in patients with MPN?

« During the 62nd American Society of Hematology (ASH) Annual Meeting and Exposition, the MPN Hub spoke to the Steering Committee Chair, Jean-Jacques...

« During the 62nd American Society of Hematology (ASH) Annual Meeting and Exposi...

Manouche

•4 years ago

Be the first to reply

Low white blood count

Hello everyone, I am ET Jak2+. I have just had my 3 month call from my specialist nurse who says my white blood count is low at 3.6. My platelet count was...

Hello everyone, I am ET Jak2+. I have just had my 3 month call from my speciali...

Hydrox

•4 years ago

4 Replies

Recently diagnosed

I was diagnosed with high platelets after months of being told my blood showed imflammation>The first I knew was when I phoned about blood test results and was...

I was diagnosed with high platelets after months of being told my blood showed i...

Hidden

•4 years ago

5 Replies

Can anyone help with itching problems associated with taking Hydroxycarbamide

Hello. My issue began in August 2020 with a persistent itch to my upper right arm which when scratched became worse. The itching spread to my back and legs and...

Hello. My issue began in August 2020 with a persistent itch to my upper right ar...

Pierreg

•4 years ago

33 Replies

Enlarged Spleen

diagnosed with post ET/MF 3 years ago, watch and wait, now spleen measures 15.8. Any advice please.

diagnosed with post ET/MF 3 years ago, watch and wait, now spleen measures 15.8....

flog

•4 years ago

8 Replies

ANY DIETS THAT ARE HELPFUL?

Hi, I’m either pre-fibrotic MF or level 1 MF. I’m on HU & Eliquis & my lab numbers are fine with no anemia. But my fatigue has gotten to the point I’m...

Hi, I’m either pre-fibrotic MF or level 1 MF. I’m on HU & Eliquis & my lab numbe...

katiewalsh

•4 years ago

44 Replies

ET and Joint Pain

I think it can be very easy to blame every ache and pain on the condition, however, I'm interested to see if anyone else has suffered similar! I have recently...

I think it can be very easy to blame every ache and pain on the condition, howev...

Trueblue8

•4 years ago

44 Replies

Hydroxycarbamide

H, I have ET and was dreading going on Hydroxycarbamide. I take 1 a day and I started four weeks ago. My platelets were 980 and now they are 340. I take...

H, I have ET and was dreading going on Hydroxycarbamide. I take 1 a day and I st...

Waterwoman

•4 years ago

15 Replies

Cost of Intron A

I'm new here and I've been reading several post and that made me little calm. So thought to share my problem and ask for your suggestions. I was diagnosed...

I'm new here and I've been reading several post and that made me little calm. So...

dp146

•4 years ago

9 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for December 2020

Christmas with the dogs, newly on Hydroxyurea

Empty Chair

Ropeginterferon-Treated Patients With Polycythemia Vera Significantly More Likely to Be Phlebotomy Free at 5 Years

Advice please

swallowing hydroxycarbamide

Wishes

Sodabread

Is there a U.K. Zoom group, if so, how do I request joining? Wishing everyone as good a Christmas as possible, I will be home alone.

Please be inclusive.

Happy Christmas

Wishes

Crimble wishes

Breathlessness

Greetings to all

Selected ASH Abstracts on Novel Treatments of Polycythemia Vera

Merry Christmas

Side effects from Hydroxicarbamide

Besremi: Efficacy and Safety in Different Age Groups

Hydroxyurea dosage

"Fight MPN"

Progression of PV

When can we safely discontinue Pegasys in patients with MPN?

Low white blood count

Recently diagnosed

Can anyone help with itching problems associated with taking Hydroxycarbamide

Enlarged Spleen

ANY DIETS THAT ARE HELPFUL?

ET and Joint Pain

Hydroxycarbamide

Cost of Intron A

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