Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for November 2019

Critical illness policy

Hello everyone. I have just received a letter confirming my critical illness policy will pay out. I am very happy about this but also it’s a bit scary knowing...

Hello everyone. I have just received a letter confirming my critical illness pol...

•4 years ago

Chronic would

Hi everyone, I do have a chronic would at my right leg at the ankle and it's not healing it's almost three yrs now I have been to different clinics and there...

Hi everyone, I do have a chronic would at my right leg at the ankle and it's not...

•4 years ago

Saturday‘s Living With MPNs Day In London

This is a follow up to my post trying to hook people who are attending the above together. So far it eight definite respondees with three awaiting...

This is a follow up to my post trying to hook people who are attending the above...

•4 years ago

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MPN Memoir...

Hello everyone, Having been diagnosed with ET at 26, I have finally published my memoir which describes my particular pathway with my MPN. It definitely does...

Hello everyone, Having been diagnosed with ET at 26, I have finally published my...

•4 years ago

ET JAK 2 positive

Hi there. I am 50 years old and was just diagnosed with ET JAK 2 positive. My head is spinning and I’m so scared with this diagnosis. My hematologist is saying...

Hi there. I am 50 years old and was just diagnosed with ET JAK 2 positive. My he...

•4 years ago

Kids flu sprays

Hi folks, can anyone remember how long you have to keep away from the kids when they have the flu spray up their noses as I know it’s different from us adults...

Hi folks, can anyone remember how long you have to keep away from the kids when ...

•4 years ago

Can I ask my hairdresser to dye my hair if I take Hydroxycarbamide? I have had Polycythaemia Vera for 2 years.

I’m not sure if it’s ok to get my hair dyed. Does anyone do this whilst taking Hydroxycarbamide and have you had side effects please?

I’m not sure if it’s ok to get my hair dyed. Does anyone do this whilst taking H...

•4 years ago

Et and heart palpitations

Does anyone with ET suffer from heart palpitations and missed heart beats? I've been experiencing the same and was wondering if it's related to this condition....

Does anyone with ET suffer from heart palpitations and missed heart beats? I've ...

•4 years ago

Re: METHOTREXATE (MTX) TRIAL - UPDATE...

Post by MPN-MATE Admin » Fri Nov 08, 2019 2:29 am For all of you interested in my MTX progress......

Post by MPN-MATE Admin » Fri Nov 08, 2019 2:29 am For all of you interested in ...

•4 years ago

Webinar (live streaming) of the MPN Voice Living with MPNs Day Saturday 16th November 2019, 9 am – 5 pm GMT

We are very pleased to announce that the Living with MPNs day will be streamed live online. Register for the webinar We are very excited that by...

We are very pleased to announce that the Living with MPNs day will be streamed l...

Partner•4 years ago

Itching, "pin points", crawling insects

ET, Jak2 positive. Taking 500mg hydra, 81 mg aspirin daily for 6 months. In the past month or so have had itching. Sometimes feels like a bugs are crawling...

ET, Jak2 positive. Taking 500mg hydra, 81 mg aspirin daily for 6 months. In t...

•5 years ago

Cataract removal

Just wondering ....I am having a cataract removed on Monday.....so if any of you have had the procedure , were you advised to stop the daily aspirin ? Many...

Just wondering ....I am having a cataract removed on Monday.....so if any of you...

•5 years ago

Blood cancers: New generation stem cell transplant significantly reduces complications for patients

Post by MPN-MATE Admin » Wed Nov 06, 2019 9:21 am Hey everyone... :-) More great good news is coming our way... This article has already successfully run...

Post by MPN-MATE Admin » Wed Nov 06, 2019 9:21 am Hey everyone... :-) More gre...

•5 years ago

Hydrea/Strange dreams

I have been on one hydrea and baby aspirin for 6 months(ET). Feeling near normal but have extremely vivid, strange dreams. Sometimes "nightmarish" . Anyone...

I have been on one hydrea and baby aspirin for 6 months(ET). Feeling near norma...

•5 years ago

Query about platelets

My platelet s went from 1200, to 999 to 1400 within a 48 hour period. Is that ok?

My platelet s went from 1200, to 999 to 1400 within a 48 hour period. Is that ok...

•5 years ago

Sydney to the GONG ~ MS Challenge Ride

Hey guys... :-) Yesterday, myself and a few of my riding buddies, (Frank, Merv, William, Rick, Vinod & Jimmy), all completed one of the most scenic cycling...

Hey guys... :-) Yesterday, myself and a few of my riding buddies, (Frank, Merv,...

•5 years ago

Anyone on Navitoclax ABT-263 study medication with Jakafi?

Anyone with myelofibrosis on the Navitoclax ABT-263 study medication with Jakafi that would like to share information. I have been on both medications since...

Anyone with myelofibrosis on the Navitoclax ABT-263 study medication with Jaka...

•5 years ago

Extensive body heat.

Anyone with Myelofibrosis on Jakafi experiencing occasional internal body heat like if you are burning inside?

Anyone with Myelofibrosis on Jakafi experiencing occasional internal body heat l...

•5 years ago

Clopidogrel

Hello, so good to have this forum. I am struggling with pv. My levels are up and down like a yo yo as are the amounts of hydroxy I take, plus I’m back on...

Hello, so good to have this forum. I am struggling with pv. My levels are up and...

•5 years ago

Pneumonia Jab...is it safe for us?

Just been for my 2nd ever flu jab and was offered Pneumonia jab as well. Told the nurse I had ET and she advised I ask my consultant first. Are we allowed...

Just been for my 2nd ever flu jab and was offered Pneumonia jab as well. Told th...

•5 years ago

PHYSICAL ACTIVITY & LONGEVITY

Post by MPN-MATE Admin » Sat Nov 02, 2019 12:20 am Hi everyone... :D I know that I do go one and on about the need for consistent physical activity,...

Post by MPN-MATE Admin » Sat Nov 02, 2019 12:20 am Hi everyone... :D I know t...

•5 years ago

MPN VACCINE STUDY – 2018

Post by MPN-MATE Admin » Fri Nov 01, 2019 10:55 pm Morning everyone... :D This is a study from last year. However, it just shows that we should always remain...

Post by MPN-MATE Admin » Fri Nov 01, 2019 10:55 pm Morning everyone... :D This...

•5 years ago

Thankyou!

Can I just thank everyone who replied to my query regarding Hydroxycarbamide or Anagrelide, lots of food for thought.

Can I just thank everyone who replied to my query regarding Hydroxycarbamide or ...

•5 years ago

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Travelling with Interferon

Does anyone know if Frio cooling insulated packs are suitable for keeping interferon injections cool whilst travelling. I noe that Interferon data sheet says...

Does anyone know if Frio cooling insulated packs are suitable for keeping interf...

•5 years ago

5+Years with PV and halfway to Everest!

Proud that PV did not hold me back on a hike to the highest (major) village in Nepal...and halfway to the Everest Base Camp.Will not lie that it was not easy...

Proud that PV did not hold me back on a hike to the highest (major) village in N...

•5 years ago

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