Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for July 2018

Patient Power

Hi everyone. I wonder if any of you find Patient Power helpful. Much of what they say is not available here as they are in the States so may not be...

Hi everyone. I wonder if any of you find Patient Power helpful. Much of what...

•6 years ago

What Patients Should Expect: An Expert Breaks Down the Procedure for a Bone Marrow Biopsy

Hey guys... Found this short talk about Bone Marrow Biopsy (BMB) that I thought might be useful for those who have never undergone the procedure previously....

Hey guys... Found this short talk about Bone Marrow Biopsy (BMB) that I thought ...

•6 years ago

Night sweats

Since diagnosis and commencing on hydroxycarbamide I have suffered from nightsweats. I would wake in the night with my pillow soaking wet and my hair like I'd...

Since diagnosis and commencing on hydroxycarbamide I have suffered from nightswe...

•6 years ago

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Platelet levels above normal range despite treatment on Hydrea

I am 12 year ET Jak2. I take Asprin and 500 Hydrea daily. I also take Gabapentin, Tramadol for Chronic pain that started around the time ET started. My...

I am 12 year ET Jak2. I take Asprin and 500 Hydrea daily. I also take Gabapentin...

•6 years ago

Shortness of breathing n chest pain came out to be bcz of inflamed liver because of blood thinner.

Hello everyone, I am again here with update regarding my visit to dr. For shortness of breathing n chest pain..All of folks advised me to take it seriously...

Hello everyone, I am again here with update regarding my visit to dr. For short...

•6 years ago

Laura Ashley have lovely 100% cotton voile tops in sale

Hi everyone, I mentioned very lightweight cotton voile tops earlier as great cover ups. Laura Ashley have about 5 different ones in their sale reduced from...

Hi everyone, I mentioned very lightweight cotton voile tops earlier as great cov...

Volunteer•6 years ago

Platelets now at 1336000. Is this OK or should my wife be seen urgently?

Been over a week since our return from France. My wife saw the GP last Monday, though he knows nothing about MPN he did saw he would refer her to a hematology...

Been over a week since our return from France. My wife saw the GP last Monday, t...

•6 years ago

Let’s make the most of summer while we can

Hi I notice that many of you struggle in the heat, as we all seem to. I love the sun but it no longer loves me, what a b.......... but, you know, we simply...

Hi I notice that many of you struggle in the heat, as we all seem to. I love the...

Volunteer•6 years ago

Larger red blood cells than normal

Morning all ET jak2 pos, just had a review from docs and now he wants to see me as I now have a larger red blood cells than normal my platelet count was normal...

Morning all ET jak2 pos, just had a review from docs and now he wants to see me ...

•6 years ago

Lightheadedness

Hi folks, I’m CALR ET. Can anyone discribe their lightheadedness symptoms please?Over the last few weeks I have had moments of lightheadedness. I had one...

Hi folks, I’m CALR ET. Can anyone discribe their lightheadedness symptoms pleas...

•6 years ago

What a good holiday

Well folks, my week in glorious Devon was wonderful, such wonderful views from the cottage in Bideford which I hasten to add also had its own swimming pool,...

Well folks, my week in glorious Devon was wonderful, such wonderful views from t...

•6 years ago

Struggling in the heat

With temperatures in the 30s at the moment, I'm really struggling. The slightest bit of sunshine that touches my skin hurts really badly. It feels like nettles...

With temperatures in the 30s at the moment, I'm really struggling. The slightest...

•6 years ago

Peg Update

Hi guys, So I’m just out of my 2nd blood count since starting Peg, it’s a week early as it’s holiday season...after 6 injections (7th this evening) my...

Hi guys, So I’m just out of my 2nd blood count since starting Peg, it’s a week...

•6 years ago

MF and low HGB

Hi I am early MF but due to worsening itching enlarged spleen and tiredness my haematologist started me on 30mg a day Rux. For the first couple of weeks I felt...

Hi I am early MF but due to worsening itching enlarged spleen and tiredness my h...

•6 years ago

Is This Medical Negligence. High Platlet count unknown to myself for 10 years causing mini stroke & Being diagnosed with ET.

Hi i wounder if anyone else has experienced the same as myself were GP's have not informed you that your Platlet count is to high and acted upon it. I have had...

Hi i wounder if anyone else has experienced the same as myself were GP's have no...

Mycancerconcern1

•6 years ago

Pegylated Interferon available in Australia?

Hi guys, I’m from Melbourne, Aus. Can someone let me know if pegysus (pegylated interferon) is available in Australia? I’ve been finding conflicting...

Hi guys, I’m from Melbourne, Aus. Can someone let me know if pegysus (pegylated ...

•6 years ago

Problems with the sun/heat

I used to love the sun when I used to live in southern Italy it got to the forty's in the summer but since I changed years ago from hydrea to interferon then...

I used to love the sun when I used to live in southern Italy it got to the forty...

•6 years ago

Critical illness claim for essential thrombocythemia

Has anyone been able to make a successful claim on critical illness for ET?

Has anyone been able to make a successful claim on critical illness for ET?

•6 years ago

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