Posts - MPN Voice | HealthUnlocked

MPN Voice

10,532 members • 14,551 posts

All posts for February 2022

Besremi check with RN

Hi, Today, I had a check-in with my HEM's RN because I've had two Besremi shots. While she was pleasant enough, several of her comments have continued to...

Hi, Today, I had a check-in with my HEM's RN because I've had two Besremi shots...

Elizka

•2 years ago

12 Replies

Vertigo with ET

Does anyone has vertigo severe headache im swaying all day and diagnosed ET…. Give some advice been taking betahistine for vertigo.

Does anyone has vertigo severe headache im swaying all day and diagnosed ET…. Gi...

shiela23

•2 years ago

7 Replies

Stubborn platelets

At the start of treatment nearly 2 years ago my platelet count was 725, I was responding to hydroxy but struggling with side effects, the lowest they got 425,...

At the start of treatment nearly 2 years ago my platelet count was 725, I was re...

ciye

•2 years ago

14 Replies

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Update 6.2

Besremi dose 2 is today. Things are actually looking pretty good and I will be sticking with the 100mcg dose for now. While my HCT is at 45% we are not going...

Besremi dose 2 is today. Things are actually looking pretty good and I will be ...

hunter5582

•2 years ago

47 Replies

Advice please, for travel insurance with ET.

I'm in the UK and was diagnosed two and a half years ago with ET JAC+ and haven’t travelled abroad since then. Some friends and I are planning a short trip to...

I'm in the UK and was diagnosed two and a half years ago with ET JAC+ and haven’...

Blaablaablaa

•2 years ago

8 Replies

Great results from Mylofibrosis clinical trial.

I’ll add another photo in the comments if I can. It’s one that mentions what she’s been taking. But if that doesn’t work you can just go to Facebook and search...

I’ll add another photo in the comments if I can. It’s one that mentions what she...

Magentas

•2 years ago

11 Replies

Unsure about where to go next

I’m still undiagnosed - it will be a year next month I’ve been dangling, waiting on a definite “yes you have MPN ET.” I’m triple negative and BMB is also...

I’m still undiagnosed - it will be a year next month I’ve been dangling, waiting...

Megabyte

•2 years ago

22 Replies

Motherhood and MPNs

Hello, I'm wondering if anyone would be open to sharing about their experience of having an MPN and also having a baby/being a mom. I'm trying to figure out...

Hello, I'm wondering if anyone would be open to sharing about their experience o...

Lucy2022

•2 years ago

12 Replies

Pegasys works on allele burden!!

Great news! Been on Peg for nearly two years now - first at 45mcg then up to 90mcg. My allele burden two years ago was 6, switched to a new lab and got a 10.2...

Great news! Been on Peg for nearly two years now - first at 45mcg then up to 90m...

JT_Marlin

•2 years ago

15 Replies

Anybody take two baby aspirins each day?

Hi all, I’ve been having a few symptoms with PV (cold feet, dizzy spells) despite fairly normal bloods. Currently on aspirin and monthly venesections. I asked...

Hi all, I’ve been having a few symptoms with PV (cold feet, dizzy spells) despit...

Timjonze

•2 years ago

30 Replies

High liver value

Hello everyone, I am new in the forum. Pre Covid I was diagnose with ET jack2. I was on hydria pills for 6 months and then started with pegasys. 135mcg weekly...

Hello everyone, I am new in the forum. Pre Covid I was diagnose with ET jack2. I...

Adamidis

•2 years ago

4 Replies

Meds queries

Has anyone noticed any difference with their red blood cell count whilst on Hydroxycarbamide ? I’ve just had a phone call from my nurse , saying my red blood...

Has anyone noticed any difference with their red blood cell count whilst on Hydr...

10061950

•2 years ago

19 Replies

Quite normal

Hi I was diagnosed 7 years ago with ET+ Jak2. I have my blood checked every three months and my hyroxy tweaked, if necessary when my consultant deems it’s...

Hi I was diagnosed 7 years ago with ET+ Jak2. I have my blood checked every thre...

Linda1950

•2 years ago

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Feelings about travel

I’m wondering how people with ET feel about travelling. I would like to consider flying, a max 4 hour flight, my first for 2 years but feel very anxious about...

I’m wondering how people with ET feel about travelling. I would like to consider...

Linda1950

•2 years ago

6 Replies

Venturing out?

Hi everyone. Apologies for two questions today but I would like to hear from anyone who has braved the outside world and lived to tell the tale! Like many of...

Hi everyone. Apologies for two questions today but I would like to hear from an...

MWxxxx

•2 years ago

31 Replies

Antibody and Antiviral Treatments in UK

Hi. I'm interested in hearing from anyone who has had access to the above treatments who has an MPN and are on Hydroxy. The cancer charities, including MPN...

Hi. I'm interested in hearing from anyone who has had access to the above treatm...

MWxxxx

•2 years ago

5 Replies

Busulfan vs Allele

I stumbled on some studies of the old Chemo drug busulfan. It seems it can affect allele burden, as well as hem responses. I had no idea about this. They...

I stumbled on some studies of the old Chemo drug busulfan. It seems it can aff...

EPguy

•2 years ago

4 Replies

WARWICK's Latest Update on his POST ASCT journey thus far...

Post by MPN-MATE Admin » Sat Feb 12, 2022 10:39 pm Evening all... :D As some of you may recall, sometime ago in 2021, Warwick, (one of our committee...

Post by MPN-MATE Admin » Sat Feb 12, 2022 10:39 pm Evening all... :D As some o...

socrates_8

•2 years ago

34 Replies

Childrens Vaccination

Has anyone got any information on children above 5 who live with Clinically Extremely Vulnerable getting vaccinated? This is now recommended along with...

Has anyone got any information on children above 5 who live with Clinically Extr...

Joerp

•2 years ago

10 Replies

Bone Marrow Biopsy

My consultant at the RD&E hospital has decided to carry out a bone marrow biopsy in March and an abdominal scan. The biopsy is so that he can get a base line...

My consultant at the RD&E hospital has decided to carry out a bone marrow biopsy...

Trueblue8

•2 years ago

50 Replies

New User Name (EPguy) and MPN as a Continuum

I'm starting my Besremi journey as in a recent post. I realize that my user name may have been a distraction, since quite reasonably it suggested I have a Dx...

I'm starting my Besremi journey as in a recent post. I realize that my user nam...

EPguy

•2 years ago

17 Replies

Tooth extraction

Thanks everyone for your help and advice. Brilliant as Usual. Getting tooth taken out next Friday, so stopping Aspirin from tomorrow, also taking an...

Thanks everyone for your help and advice. Brilliant as Usual. Getting tooth take...

Superwoman

•2 years ago

15 Replies

A virtual International Symposium: Shining the Light on Pediatric, Young Adult, and Pregnant Patients Living with MPNs

A virtual International Symposium facilitated by the Global MPN Scientific Foundation (GMPNSF) The 2 day virtual symposium will take place on Thursday 10...

A virtual International Symposium facilitated by the Global MPN Scientific Found...

Mazcd

Partner•2 years ago

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A webinar with The Patient Empowerment Network - Thriving with an MPN: What You Should Know About Care and Treatment

Watch online on Wednesday, March 2, 2022 at 1 PM Eastern (10 AM PT, 12 PM CT) for a 30-minute webinar. Please note these times are for the US, please check...

Watch online on Wednesday, March 2, 2022 at 1 PM Eastern (10 AM PT, 12 PM CT) fo...

Mazcd

Partner•2 years ago

2 Replies

Any Patients of Dr. Jason Gotlib?

Are there any members here who receive care from him or his group?

EPguy

•2 years ago

9 Replies

Starting Besremi

I will join the Besremi party next week. Here is a picture of the stuff that arrived yesterday. For $15,000 you get a "free" electronic timer and a pair of...

I will join the Besremi party next week. Here is a picture of the stuff that ar...

EPguy

•2 years ago

42 Replies

Tooth Extraction 🥴

Hi my friends, any advice as to what to do !! I have been told today that I am going to have a tooth extracted, originally had a gold crown on the tooth, but...

Hi my friends, any advice as to what to do !! I have been told today that I am g...

Superwoman

•2 years ago

16 Replies

Ruxolitinib and weight gain

Hello all I have been on ruxolitinib for a year and hydroxy for 5 years. I had lost weight as I now also gave cll. I was very pleased to be feeling better,...

Hello all I have been on ruxolitinib for a year and hydroxy for 5 years. I had l...

Mal42

•2 years ago

24 Replies

Blanket

Has anyone of my fellow ET +Jak 2 friends used a weighted blanket to aid sleep if you are not sleeping well wonder if I should try one

Has anyone of my fellow ET +Jak 2 friends used a weighted blanket to aid sleep ...

ChillyAsh34

•2 years ago

11 Replies

Osteoporosis

Is there any connection between Polycythemia and osteoporosis? I have been taking 500 mg of HU daily for the last 8 months. DEXA results show -2.8 for hip....

Is there any connection between Polycythemia and osteoporosis? I have been takin...

Ashtin

•2 years ago

9 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for February 2022

Besremi check with RN

Vertigo with ET

Stubborn platelets

Update 6.2

Advice please, for travel insurance with ET.

Great results from Mylofibrosis clinical trial.

Unsure about where to go next

Motherhood and MPNs

Pegasys works on allele burden!!

Anybody take two baby aspirins each day?

High liver value

Meds queries

Quite normal

Feelings about travel

Venturing out?

Antibody and Antiviral Treatments in UK

Busulfan vs Allele

WARWICK's Latest Update on his POST ASCT journey thus far...

Childrens Vaccination

Bone Marrow Biopsy

New User Name (EPguy) and MPN as a Continuum

Tooth extraction

A virtual International Symposium: Shining the Light on Pediatric, Young Adult, and Pregnant Patients Living with MPNs

A webinar with The Patient Empowerment Network - Thriving with an MPN: What You Should Know About Care and Treatment

Any Patients of Dr. Jason Gotlib?

Starting Besremi

Tooth Extraction 🥴

Ruxolitinib and weight gain

Blanket

Osteoporosis

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