Posts - MPN Voice | HealthUnlocked

MPN Voice

10,992 members•15,371 posts

All posts for October 2017

Happy Halloween 👻

My scary granddaughter Emilia. Halloween isn't very big here in Portugal so we have three houses to visit for trick or treat 😊

My scary granddaughter Emilia. Halloween isn't very big here in Portugal so we ...

Sand-Dancer

•7 years ago

7 Replies

Testing - Polycythameia

Hi Saw Haematologist today. Running some further tests including one where blood is removed, red cells marked and then put back in? Meant to ask him what the...

Hi Saw Haematologist today. Running some further tests including one where blood...

James53

•7 years ago

2 Replies

ET & Long Haul Flights

Hello Everyone - I wonder if you could let me know your experiences & tips when flying long distance. I'm going to be seeing my haematologist in the next...

Hello Everyone - I wonder if you could let me know your experiences & tips when ...

cavery

•7 years ago

14 Replies

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Ruxolitinib and weight gain

Hi, I'm just about to start Ruxolitinib and see that weight gain can be a side effect, some people reporting 2 stone or more. I know it sounds vain but I...

Hi, I'm just about to start Ruxolitinib and see that weight gain can be a side e...

francesb

•7 years ago

11 Replies

An explanation for why I am fatigued.

Hi, I had an appointment with my Haematologist after my 10th venesection in 3 months. My Haematocrit has finally dropped below 45% which is good news. I was...

Hi, I had an appointment with my Haematologist after my 10th venesection in 3 mo...

JohnSC

•7 years ago

11 Replies

which drug is best to treat ET, why cytoreduction treatment is put on hold for low risk patients？

I thought initially I am tolerating anagrelide really well.my platelets counts are also getting low.But all of sudden I am again feeling brain fog, light...

I thought initially I am tolerating anagrelide really well.my platelets counts a...

mustabshra

•7 years ago

7 Replies

Fatigue & a plant-based diet

Hi fellow exhausted folk. I'm 41 and a part time working mom with 2 ADHD boys - 11 and 8. You can imagine how inconvenient the crushing fatigue that...

Hi fellow exhausted folk. I'm 41 and a part time working mom with 2 ADHD boys - ...

josmollan

•7 years ago

20 Replies

ET. Cancer or not?

First of all thanks for the tremendous response to my first post. I'm so glad I found this community. When I was diagnosed with ET in July, my consultant...

First of all thanks for the tremendous response to my first post. I'm so glad I ...

Ovingite

•7 years ago

11 Replies

ET was the surprise of my year

Hi. I'm a 67 year old bloke who thought he was hale and healthy, until,.......... My journey started with a suspected coronary in April 2017 (pains in chest...

Hi. I'm a 67 year old bloke who thought he was hale and healthy, until,............

Ovingite

•7 years ago

13 Replies

Doyle 1500

Does anyone with Polycythemia still have vertigo issues?

doyle1500

•7 years ago

8 Replies

Are patients with PV entitled for Free Prescriptions?

I was diagnosed with PV in 2011 at the age of 36. I've been managing my condition using Hydroxycarbamide and Clopidogrel and I always paid for my medicines....

I was diagnosed with PV in 2011 at the age of 36. I've been managing my conditio...

AlexMir

•7 years ago

11 Replies

Christmas cards

One for Max I think. Do you know when the MPN Voice Christmas cards will be available? Best wishes, Jan

One for Max I think. Do you know when the MPN Voice Christmas cards will be avai...

beetle

•7 years ago

9 Replies

Peg questions

I am starting pegasys in 4 days and am looking for advice. I am a second grade teacher, and am exhausted at the end of every day. Now that I am starting...

I am starting pegasys in 4 days and am looking for advice. I am a second grade t...

clevemic

•7 years ago

7 Replies

Botox

Can you have BOTOX while on H.U anyone had the go ahead from their consultant ? Thanks lainy 🤗

Can you have BOTOX while on H.U anyone had the go ahead from their consultant ? ...

Lainy1

•7 years ago

1 Reply

New oncologist new diagnosis

I saw a new oncologist yesterday and he believes I have ET AND PV. He wants me to start pegylated interferon soon. Believes it can "turn off" the JAK2 switch....

I saw a new oncologist yesterday and he believes I have ET AND PV. He wants me t...

MaryELWoods

•7 years ago

7 Replies

Specialist 2nd visit

As many know I was diagnosed about 6 mo ago with ET & mild MF. I’m TRIPLE NEG. and my haem sent me to an MPN specialist at Columbia in NYC. 1st visit...

As many know I was diagnosed about 6 mo ago with ET & mild MF. I’m TRIPLE NEG. a...

Cmg5935

•7 years ago

19 Replies

Bruising treatment

Just as a matter on interest I have aways used Arnica for bruises (genuine ones) and taken Arnica tablets when at dentist for an extraction. Before diagnosis I...

Just as a matter on interest I have aways used Arnica for bruises (genuine ones)...

nanmc

•7 years ago

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Hydroxy side effects

Does anyone hold down a job on this drug? 6 days in and I am still feeling disorientated with memory and concentration problems. Do I need to give it more time...

Does anyone hold down a job on this drug? 6 days in and I am still feeling disor...

SDJD

•7 years ago

13 Replies

Check up time again..

Hi friends, well platelets going down slowly 378 so staying on one a day of H U. He said i have low salt , i dont know why but i said could it be too much...

Hi friends, well platelets going down slowly 378 so staying on one a day of H U....

catwoman2015

•7 years ago

14 Replies

First venesecton

For some reason my hemoglobin count has gone up. I've been on hydroxycarbamide four days a week for a couple of years yet I've now got too many red blood...

For some reason my hemoglobin count has gone up. I've been on hydroxycarbamide f...

MarkD6701

•7 years ago

7 Replies

Neuralgia attacks ,

for over 4 years now I’ve been having Neuralgia attacks since my Diagnosis with ET & Started taking HU , Hubby’s read that cancer treatment/ Meds can...

for over 4 years now I’ve been having Neuralgia attacks since my Diagnosis...

Phelpsy

•7 years ago

23 Replies

Patients support group on Facebook : CALR mutation ( ET & MF )

Hello, Every MPN patient is welcome on our support group on Facebook : we would never exclude JAK2, MPL or triple negative patients, we are all in the same...

Hello, Every MPN patient is welcome on our support group on Facebook : we would ...

Wim_Louage

•7 years ago

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Anxiety

Hello my MPN friends. Asking on behalf of my sister - does anyone on Hydroxycarbomide take Sertraline tablets for anxiety?

Hello my MPN friends. Asking on behalf of my sister - does anyone on Hydroxycar...

Sand-Dancer

•7 years ago

7 Replies

Things that make me happy!

Hi all What things do you do/have that remind you life is for living? This is Poppy. She is now 12 weeks old and is my home bred puppy. This moment will be...

Hi all What things do you do/have that remind you life is for living? This is Po...

Jellybean129

•7 years ago

7 Replies

ET and Angiograms

I have to have further investigations after having an echo stress test on my heart. I wondered whether anyone knows if an angiogram presents any additional...

I have to have further investigations after having an echo stress test on my hea...

AnneMargaretMary

•7 years ago

8 Replies

ET with CALR+ type 2

Hi Fellows, I am 29 years old and I have been diagnosed recently with ET, CALR+. It was a really hard period the last months, as I was trying to cope with...

Hi Fellows, I am 29 years old and I have been diagnosed recently with ET, CALR...

m4d4lin

•7 years ago

11 Replies

Not been online for a while

Not been here for a while I switched to interferon and the side effects were very harsh, I am now under guys and just started pegasys hopefully it will have...

Not been here for a while I switched to interferon and the side effects were ver...

Rastavapa

•7 years ago

7 Replies

Nose bleed

Just got home after two days in hospital with nose bleed. My kitchen looks like a crime scene had to have it cauterized in the end. Side effects of...

Just got home after two days in hospital with nose bleed. My kitchen looks like ...

Hidden

•7 years ago

7 Replies

Erythrocytosis

Hi my name is Nicole I'm new to this but have erythrocytosis would like here of anyone else having this Thanks

Hi my name is Nicole I'm new to this but have erythrocytosis would like here of ...

Morjane

•7 years ago

4 Replies

Support from family and friends

Hi everyone. An update on the saga. Saw someone from Age Concern last week who did some investigating about what was available here in Chepstow. She rang...

Hi everyone. An update on the saga. Saw someone from Age Concern last week wh...

Garden987

•7 years ago

12 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for October 2017

Happy Halloween 👻

Testing - Polycythameia

ET & Long Haul Flights

Ruxolitinib and weight gain

An explanation for why I am fatigued.

which drug is best to treat ET, why cytoreduction treatment is put on hold for low risk patients？

Fatigue & a plant-based diet

ET. Cancer or not?

ET was the surprise of my year

Doyle 1500

Are patients with PV entitled for Free Prescriptions?

Christmas cards

Peg questions

Botox

New oncologist new diagnosis

Specialist 2nd visit

Bruising treatment

Hydroxy side effects

Check up time again..

First venesecton

Neuralgia attacks ,

Patients support group on Facebook : CALR mutation ( ET & MF )

Anxiety

Things that make me happy!

ET and Angiograms

ET with CALR+ type 2

Not been online for a while

Nose bleed

Erythrocytosis

Support from family and friends

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