Posts - MPN Voice | HealthUnlocked

MPN Voice

10,564 members14,593 posts

All posts for May 2022

Monthly blog dedicated to young people living with MPNsAlice’s eighth blog: A Day in the Life: Having a Bone Marrow Biopsy

This month Alice talks about bone marrow biopsies, and tells us about her experi...
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First Visit With My MPN Specialist!

Oh my goodness! There was no comparison to the level of care I’ve been rec...

Aching and tingling… is this my PV?

Hello! I have PV, JAK2 diagnosed in 2015. I have been on Pegasys for the last...
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Update! Does anyone know?

Update from blood test. I had a hemorrhage in the calf after an injury so it may...
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Ruxolitinib

Husband has PV and MPN currently on Ruxolitinib which for him has been amazing a...
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Is this a sign of progression from ET to MF?

Hey there, I'm 28yrs old and was diagnosed a year ago with ET. Platelets were a...

MPN Specialist

We just got word that one of the lead MPN Specialists at Johns Hopkins (my curre...
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High platelet count, new doctor said normal. HELP

Hi, hope everyone is well. Im am 37 years old and I've been having blood tests e...

Burning sensation

Can anyone tell me if this is an MPN symptom please. At first I periodically get...
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Update ,coronery stent

I did had the stent procedure on Thursday, it went well but they informed that I...
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Night sweats

I am 62 with MF and wondering how u can tell the difference between a night swea...
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Discovery of a signaling feedback circuit that defines interferon responses in MPN

« Interferons (IFNs) are key initiators and effectors of the immune response aga...
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It never rains but it bleep bleep pours!

A follow up from my last post. It appears that the fungal/mould spores from our ...
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Home today!!!!!

Neutrophils are 0.6 and I'm going home today! Having a transfusion first and wai...
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BESREMI ACHIEVES PATIENT-SPECIFIC TREATMENT GOALS IN POLYCYTHEMIA VERA: FINAL RESULTS FROM THE PROUD-PV/CONTINUATION-PV STUDIES

« No phlebotomies were required to maintain hematocrit <45% in the 6th year of t...
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Immunotherapy with checkpoint inhibitors for MPN

Often the body's natural defense system can distinguish the cancer cells from he...
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Night sweats

Hi I’m a lady coming up to 70 been on HU 10 pills a week now since 2015 have ET...

Sepsis and Covid

I had ET in 2016, the re-diagnosed with MF and atrial fibrilation in 2017, var...
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Can Pv and peg interferon cause issues with your immune system

Morning Wondered if anyone else has had issues with immune system since being d...
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Latest CBC CMP Besremi 3+ months

Just an update on current numbers as Bes continues. I wrote about eye concerns ...
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Curcumin Real Clinical Study, Anti Inflam

Came across this one. I think it's a rare Curc study using real people, vs anim...
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How often should we have erythropoietin and LDH checked?

Hi there, When I was seeing my specialist at Vanderbilt, he was checking my Ery...
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Jardiance and lower HCT/Hgb

I am trying to sort an unusual but positive change in my PV. I am Jak2 + and was...
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Questions about Jakafi

Good morning everyone, I have PV. I am 75 and was diagnosed about 5 years ago. ...
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coronery stent

Hello friends I am programmed tomorrow for coronery stant, is there anyone who ...
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Considering Besremi

Hi all (first post) i am 76 & was diagnosed with PV 3 years ago. I am just being...
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Hydroxyurea-induced ankle ulcers

85, been on 1000 mg/day of Urea for five years fighting essential thrombocytosis...
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Hydroxycarbamide and Butec (buprenorphine) pain patch

Hello everyone. I thought I would post the information I have got about an inte...
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Liver Issues on Inf (Peg) (apologies for long post)

So spoke with my MPN specialist last night about my recent CBC results. The good...
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Sharing my experience with Covid19 and Antiviral meds!

On Saturday I tested positive for Covid19. Called 119 and reported it and was to...
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