Posts - MPN Voice | HealthUnlocked

MPN Voice

10,992 members•15,371 posts

All posts for October 2019

Anagrelide!

Hello, After my platelets fell to 237 after treatment for bowel cancer a year ago, my platelets have slowly risen again to 637. I haven’t gone back onto...

Hello, After my platelets fell to 237 after treatment for bowel cancer a year ag...

Juliet46

•5 years ago

14 Replies

Dopamine Receptor-targeting Drugs for New Dopamine-related Therapies for Fibrosis

Post by MPN-MATE Admin » Wed Oct 30, 2019 11:37 pm Hey everyone... :D This new piece of Research into Fibrosis may hold some fascinating insights in time......

Post by MPN-MATE Admin » Wed Oct 30, 2019 11:37 pm Hey everyone... :D This ne...

socrates_8

•5 years ago

6 Replies

Help please.

Hello all Can anyone tell me if they’ve had cytoreduction treatment/surgery please? I don’t really understand what it is and Goggle isn’t helping 🙈 Many...

Hello all Can anyone tell me if they’ve had cytoreduction treatment/surgery pl...

Mich10

•5 years ago

8 Replies

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Sweats

Hi everyone. Does anyone still suffer night sweats. Mine disappeared after starting Hydroxy but this week I've been suffering at night with them and have...

Hi everyone. Does anyone still suffer night sweats. Mine disappeared after...

Pippa63

•5 years ago

13 Replies

High Platelets Count

Hello everyone For last 10 days I had high fever and high cough,the doctor said I had viral fever and chest congestion and gave me Paracip 500 and cough syrup....

Hello everyone For last 10 days I had high fever and high cough,the doctor said ...

scitrs

•5 years ago

4 Replies

Concerns

I’ve Et tried hu could t handle it I’ve tried Pegasus after the second injections I was having tachycardia etc had to come of it my last one was wed last week...

I’ve Et tried hu could t handle it I’ve tried Pegasus after the second injection...

Hahag

•5 years ago

3 Replies

Pegasus in your system

Any body know how long it takes for Pegasus to leave ur system I’ve had two injections last one last wed. But was getting heart problems just wanderd how long...

Any body know how long it takes for Pegasus to leave ur system I’ve had two inje...

Hahag

•5 years ago

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MPN Voice Charity Christmas Cards

Support MPN Voice this Christmas by sending our Christmas cards, there are 4 designs available: Dove over Bethlehem (14 x 14 cm / 5½ x 5½“) Silver Tree (14 x...

Support MPN Voice this Christmas by sending our Christmas cards, there are 4 des...

Mazcd

Partner•5 years ago

5 Replies

Not what it turned out to be

Thank you all for your heartfelt messages and advice. When I joined this group a couple weeks ago, I thought my diagnosis was going to be completely different...

Thank you all for your heartfelt messages and advice. When I joined this group a...

mdcupp6201

•5 years ago

12 Replies

ET & Jak2 positive

Hi Hopefully someone can help. I've recently been diagnosed with ET and Jak2 positive and have heard from a number of people that I can claim on my Critical...

Hi Hopefully someone can help. I've recently been diagnosed with ET and Jak2 po...

Hidden

•5 years ago

10 Replies

Pegasus and Liver Function

ET CALR positive, Following my haem appointment and discussing my blood results due to white cells decreasing and red cells increasing it was agreed I would...

ET CALR positive, Following my haem appointment and discussing my blood results ...

Hidden

•5 years ago

12 Replies

MPNs, Hypertension and 'meds before beds'.

Hi, A really important announcement was make this week claiming the benefits of taking hypertension (blood pressure) medicine last thing at night. It...

Hi, A really important announcement was make this week claiming the benefits o...

Stella57

•5 years ago

6 Replies

Tachycardia

So just come out of seeing my specialist he’s took me of Pegasus due to having tachycardia and funny beats I was on hu before so I’m now on watch and wait

So just come out of seeing my specialist he’s took me of Pegasus due to having t...

Hahag

•5 years ago

1 Reply

finding a specialist

hi everyone, am pv/ jak2 positive (2007)(et from 2001) and on hu for years (2011)and recently struggling with anaemia type symptoms , but haemoglobin ok. mch &...

hi everyone, am pv/ jak2 positive (2007)(et from 2001) and on hu for years (2011...

Lemonverbena

•5 years ago

10 Replies

Polycythemia Vera with myelofibrosis

High risk patient completed 5 years on Hydrea currently on Jackavi. What is the prognosis?

High risk patient completed 5 years on Hydrea currently on Jackavi. What is the ...

IK5555

•5 years ago

6 Replies

Cardiac issues

Any body had any cardiac issues on Pegasus I’ve started getting some

Hahag

•5 years ago

10 Replies

That time of year again

Hi everyone. I have a throat that feels like razor blades , sore chest and cough Does everyone still take their hydroxy ( 2 a day ). Had my flu jab and...

Hi everyone. I have a throat that feels like razor blades , sore chest and c...

Pippa63

•5 years ago

6 Replies

anyone tested for co 2and Hbaic levels also crp test

the reason I ask as Im in the uk diagnosed with pv last year age 54 and on 5 hydroxy a week. Recently had an appointment with haemotologist who without me...

the reason I ask as Im in the uk diagnosed with pv last year age 54 and on 5 hy...

john0084

•5 years ago

1 Reply

Hair

Morning all, just a quick question has anyone coloured there hair whilst taking Rux

Morning all, just a quick question has anyone coloured there hair whilst taking ...

lynda1ann

•5 years ago

12 Replies

Skin and Hydroxycarbamide

Good morning everyone, I have Et jak 2 diagnosed in 2000 and take Hydroxycarbamide since diagnosis. I have had skin cancer removed from my nose and have...

Good morning everyone, I have Et jak 2 diagnosed in 2000 and take Hydroxycarbami...

Bobthecob

•5 years ago

35 Replies

What is rheumatoid arthritis, the condition tennis champion Caroline Wozniacki lives with?

Post by socrates_8 » Sat Oct 26, 2019 10:38 am OCT. 25, 2019 by Fabien B. Vincent and Michelle Leech, The Conversation Hey everyone... :-) I believe that...

Post by socrates_8 » Sat Oct 26, 2019 10:38 am OCT. 25, 2019 by Fabien B. Vince...

socrates_8

•5 years ago

15 Replies

Funny cartoon

Just my follow up photo or overload plus brain fog LOL! Saw this today and so much of that is swirling around in my head. Have a great weekend all!

Just my follow up photo or overload plus brain fog LOL! Saw this today and so mu...

Mrs_Average

•5 years ago

4 Replies

Jakifi dosage

Just started on Jakifi. 5mg twice daily. Weekly CBCs with doctor consult. Recent Myelofibrosis diagnosis. Anybody tell me about experience with increasing...

Just started on Jakifi. 5mg twice daily. Weekly CBCs with doctor consult. Rec...

Jerrymohler

•5 years ago

9 Replies

Increased in WBC after Phlebotomy

Hi Everyone Yesterday i underwent phlebotomy after 10months but after this my wbc rise beyond limits. Has anyone experience high wbc after phlebotomy? Is this...

Hi Everyone Yesterday i underwent phlebotomy after 10months but after this my wb...

Vigiindia

•5 years ago

2 Replies

Help

What is a myeloid genotyping panel?

Avamia94

•5 years ago

2 Replies

MDS/MPN - JAK 2

Hi, I was diagnosed in June with MDS/MPD(N). At my last appointment, when I asked my consultant for the details of my diagnosis, she scribbled down some words...

Hi, I was diagnosed in June with MDS/MPD(N). At my last appointment, when I ask...

MaggieSylvie

•5 years ago

38 Replies

Horrendous stomach pain with hydroxycarbamide

Hi everyone has anyone on hydroxycarbamide 1500 mg daily had stomach problems? I was at a gastroenterologist yesterday and told may have Diverticulitis...

Hi everyone has anyone on hydroxycarbamide 1500 mg daily had stomach problems? I...

PhilReade

•5 years ago

5 Replies

Vitamin D deficiency and poor muscle function in the over-60s

Post by MPN-MATE Admin » Thu Oct 24, 2019 8:32 pm OCT. 23, 2019 by Trinity College Dublin This is also one of those issues that ALL countries could take...

Post by MPN-MATE Admin » Thu Oct 24, 2019 8:32 pm OCT. 23, 2019 by Trinity Coll...

socrates_8

•5 years ago

13 Replies

Platelet count rises and falls

Hi, I'm new to all this i am a 57 yr old woman, who has been diagnosed as having thrombocytosis. I am being monitored by the oncology unit in my local...

Hi, I'm new to all this i am a 57 yr old woman, who has been diagnosed as havi...

Chrissyb61

•5 years ago

13 Replies

Mds and ET.

Had the results of my latest BMB yesterday and I couldn't believe what I was told, I also have Myelodysplastic syndrome which is also rare! Along with my...

Had the results of my latest BMB yesterday and I couldn't believe what I was tol...

nodmeister

•5 years ago

23 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for October 2019

Anagrelide!

Dopamine Receptor-targeting Drugs for New Dopamine-related Therapies for Fibrosis

Help please.

Sweats

High Platelets Count

Concerns

Pegasus in your system

MPN Voice Charity Christmas Cards

Not what it turned out to be

ET & Jak2 positive

Pegasus and Liver Function

MPNs, Hypertension and 'meds before beds'.

Tachycardia

finding a specialist

Polycythemia Vera with myelofibrosis

Cardiac issues

That time of year again

anyone tested for co 2and Hbaic levels also crp test

Hair

Skin and Hydroxycarbamide

What is rheumatoid arthritis, the condition tennis champion Caroline Wozniacki lives with?

Funny cartoon

Jakifi dosage

Increased in WBC after Phlebotomy

Help

MDS/MPN - JAK 2

Horrendous stomach pain with hydroxycarbamide

Vitamin D deficiency and poor muscle function in the over-60s

Platelet count rises and falls

Mds and ET.

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