Posts - MPN Voice | HealthUnlocked

MPN Voice

10,564 members • 14,593 posts

All posts for February 2022

Another question are: 4th Covid Vac.

Hello all, just a quick question. I have finally managed to get an appointment for 4th Covid Vaccination through letter from Haematologist to GP who’s admin...

Hello all, just a quick question. I have finally managed to get an appointment f...

azaelea

•2 years ago

6 Replies

Not diagnosed

Hi I'm in the UK. Some years ago I was sent to haematology with high platelets snd high whites. Back in 2008 2009. I had a diagnosis of thrombocytosis only and...

Hi I'm in the UK. Some years ago I was sent to haematology with high platelets s...

Notdiagnosed

•2 years ago

49 Replies

Switch from HU to Pegasys - update 2.0!

6 weeks in and latest call from consultant: Platelets: 395, Hb: 155, Hct: 0.459 Will stay on 3x500mg a week for a while longer as PEG can take time to fully...

6 weeks in and latest call from consultant: Platelets: 395, Hb: 155, Hct: 0.459 ...

FG251

•2 years ago

16 Replies

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Leg pain

Just wondering if anyone with myleofibrosis experiences leg pain

Stripecat

•2 years ago

6 Replies

MPN Progression Webinar

Topic MPN Progression: What We Know and What We Hope to Learn Description MPN Advocacy & Education International hosts this event with the MPN Research...

Topic MPN Progression: What We Know and What We Hope to Learn Description MPN Ad...

hunter5582

•2 years ago

5 Replies

Pediatric/Young Adult MPN Webinar

Topic A Conversation with MPN Specialists: Pediatric and Young Adults with MPNs Description MPN Advocacy & Education International hosts this event for young...

Topic A Conversation with MPN Specialists: Pediatric and Young Adults with MPNs ...

hunter5582

•2 years ago

Be the first to reply

I'm new here

But not new to PV, diagnosed 8.5 years ago. I've been through most of the drugs available for PV and am now on Besremi.

But not new to PV, diagnosed 8.5 years ago. I've been through most of the drugs ...

Orangeboykitty

•2 years ago

12 Replies

My query

Hi everyone, I would like to thank each and every one of you who replied to my query. I see my CNS 2 weeks time (not seen haematologist since hospital opened...

Hi everyone, I would like to thank each and every one of you who replied to my q...

Simris

•2 years ago

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Anti virals

Has anyone had the IV anti viral medication? I’ve been offered it tomorrow morning but I’m a bit unsure…

Has anyone had the IV anti viral medication? I’ve been offered it tomorrow morni...

DoubleF79

•2 years ago

17 Replies

Burning sensation

Feels as if my body is on a slow burn apologise l just lost a quite detailed post about how lm feeling right now probably for the best anyway anyone have...

Feels as if my body is on a slow burn apologise l just lost a quite detailed p...

Hidden

•2 years ago

17 Replies

et

I have et but my platelets are nearly normal now with no treatment, but my hb is slightly low so been offered another bone marrow biopsy,what are they looking...

I have et but my platelets are nearly normal now with no treatment, but my hb is...

glyndale

•2 years ago

5 Replies

Cold Water Snorkelling

I’m off to Iceland & my son wants to do cold water snorkelling (with a dry suit). The water is a mere 2 degrees. Just wanted to see if anyone had done similar...

I’m off to Iceland & my son wants to do cold water snorkelling (with a dry suit)...

Threelions

•2 years ago

2 Replies

Hydroxy query etc

Good morning, I was diagnosed 2019 ET Jak2, platelets almost 1000, my haemo started me off on low low dose hydroxy to lower platelets, increasing each time I...

Good morning, I was diagnosed 2019 ET Jak2, platelets almost 1000, my haemo sta...

Simris

•2 years ago

23 Replies

Hydroxy or just aspirin for ET?

I am 78 with diabetes diagnosed two years ago. Two months ago I was diagnosed with ET, CALR positive and prescribed low dose aspirin and hydroxy. Platelets...

I am 78 with diabetes diagnosed two years ago. Two months ago I was diagnosed wi...

Hombre

•2 years ago

19 Replies

?4th Covid vaccine

Hi - I have ET & take Hydroxycarbamide - no probs so far luckily.I have received a letter recommending I take a 4th 'booster' dose of the Covid vaccine. I am...

Hi - I have ET & take Hydroxycarbamide - no probs so far luckily.I have received...

Annula

•2 years ago

33 Replies

Informed, thanks to you

While I don’t want to waste your precious time, I do so want to reach out and say, although new here, I have read practically everything that gets written...

While I don’t want to waste your precious time, I do so want to reach out and sa...

Buddhability

•2 years ago

53 Replies

Painful cramping in legs,feet and neck muscles.

Hello friends l have ET and take warfrin and 500 milagrames of hydroxy daily, and had my 4th pfizer jab 3 weeks ago. Right now feel not so good and struggling...

Hello friends l have ET and take warfrin and 500 milagrames of hydroxy daily, a...

Hidden

•2 years ago

7 Replies

Tamoxifen and allele

This therapy has been discussed on the forum. A recent study says <those with high levels of STAT3 and STAT5 activation as well as possessing an inflammation...

This therapy has been discussed on the forum. A recent study says <those with h...

EPguy

•2 years ago

2 Replies

Paper on Misc Mutations

-- Another study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7465511/ <<Cytokines levels are higher in myelofibrosis compared to PV and ET, with higher...

-- Another study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7465511/ <<Cytok...

EPguy

•2 years ago

3 Replies

Study shows more Driver Mutations in General Population

The Denmark study used super sensitive tests.. MPNs may be far more common than current info suggets. The image here shows 3% have a Jak2 mutation even as...

The Denmark study used super sensitive tests.. MPNs may be far more common than...

EPguy

•2 years ago

41 Replies

Frank Hart

Big Ted I'm sorry to say my husband Frank passed away on Tuesday but he didn't die from his mpn he had aneurysm. He was wonderfully looked after by his...

Big Ted I'm sorry to say my husband Frank passed away on Tuesday but he didn't...

Big-Ted

•2 years ago

60 Replies

JAK2 (V617F) allele burden Update

Just got my latest allele burden number 1.22 BIG SMILE>>> Other bloods all within range, but, I'm still tired..

Just got my latest allele burden number 1.22 BIG SMILE>>> Other bloods all wi...

shiftzz

•2 years ago

22 Replies

ET

Just curious if anyone here has ET and if you have fatigue and if so have you tried Ritalin or anything else to deal with it? Thanks.

Just curious if anyone here has ET and if you have fatigue and if so have you tr...

lindabomba

•2 years ago

9 Replies

Why same treatment for PV as ET?

I’ve been reading. I understand that Hydroxycarbamide is used to treat both ET and PV. If it successfully lowers red blood cells (as well as platelets) for PV...

I’ve been reading. I understand that Hydroxycarbamide is used to treat both ET a...

Peachjoy

•2 years ago

9 Replies

ET JAK2 positive

Hello everyone I have always had a throbbing pain in my hands and lower legs. This gets worse in the evening and after exercise. The information I received...

Hello everyone I have always had a throbbing pain in my hands and lower legs. T...

YBSx

•2 years ago

5 Replies

Pegasys: oxidation (dividing a dose into two)

Hi! Does anyone know if Pegasys remains stable and biologically active if you divide the contents of a single syringe into two doses (by drawing off half of it...

Hi! Does anyone know if Pegasys remains stable and biologically active if you di...

Dovakin

•2 years ago

5 Replies

CAR-T, why it's not ready for MPNs

Today's CNN has an article about CAR-T being curative for leukemia CLL. So I checked it out a bit further....

Today's CNN has an article about CAR-T being curative for leukemia CLL. So I ch...

EPguy

•2 years ago

4 Replies

HU Resistance/Intolerance Prognostic from Dr Gotlib

I came across this interview including Dr. Gotlib, Stanford MPN expert. It's regarding MDM Inhibitors for HU resistant/intolerant PV, MF "Experts Explain...

I came across this interview including Dr. Gotlib, Stanford MPN expert. It's re...

EPguy

•2 years ago

17 Replies

Anyone with Chronic Idiopathic Myelofibrosis?

Hello I am new here. Polycythemia vera Jak 2 positive, have been taking hydroxyurea for 2yrs now. Have terrible leg pain in bed not all the time anyone else...

Hello I am new here. Polycythemia vera Jak 2 positive, have been taking hydroxy...

Mrbeasley

•2 years ago

7 Replies

My Cataract Surgery (Laser) is in 2 weeks

Just wondering from those who have had cataract surgery and taking aspirin and blood thinners, were you told to stop these prior to surgery. Your input would...

Just wondering from those who have had cataract surgery and taking aspirin and b...

Buggerbear

•2 years ago

18 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for February 2022

Another question are: 4th Covid Vac.

Not diagnosed

Switch from HU to Pegasys - update 2.0!

Leg pain

MPN Progression Webinar

Pediatric/Young Adult MPN Webinar

I'm new here

My query

Anti virals

Burning sensation

et

Cold Water Snorkelling

Hydroxy query etc

Hydroxy or just aspirin for ET?

?4th Covid vaccine

Informed, thanks to you

Painful cramping in legs,feet and neck muscles.

Tamoxifen and allele

Paper on Misc Mutations

Study shows more Driver Mutations in General Population

Frank Hart

JAK2 (V617F) allele burden Update

ET

Why same treatment for PV as ET?

ET JAK2 positive

Pegasys: oxidation (dividing a dose into two)

CAR-T, why it's not ready for MPNs

HU Resistance/Intolerance Prognostic from Dr Gotlib

Anyone with Chronic Idiopathic Myelofibrosis?

My Cataract Surgery (Laser) is in 2 weeks

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