Posts - MPN Voice | HealthUnlocked

MPN Voice

10,647 members • 14,730 posts

All posts for June 2022

1st Besremi shot

1st Besremi shot under my belt- literally! 😀 You all know I was a nervous wreck. Not about a needle- about the medicine. I thought I was going to have a...

1st Besremi shot under my belt- literally! 😀 You all know I was a nervous w...

Barbiebreath

•2 years ago

9 Replies

Polycythemia Vera

Hi All, I was diagnosed with Polycythemia Vera last April. Since that date I have been having bloods every month and venesection monthly. I have pain in my...

Hi All, I was diagnosed with Polycythemia Vera last April. Since that date I hav...

iswhatitis1

•2 years ago

37 Replies

Change of meds

Well after changing hospital and consultant about 8 month ago I have a change of medication I was on Hydroxicarbimide 2500 daily. I have now changed to...

Well after changing hospital and consultant about 8 month ago I have a change of...

JeniMac

•2 years ago

4 Replies

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Excellent results of Bomedemstat in the Phase 2 study’s ET and Myelofibrosis..

Excellent results of Bomedemstat in the Phase 2 study’s ET and Myelofibrosis.. I think finally a very good successor for Hydrea.. This drug is not...

Excellent results of Bomedemstat in the Phase 2 study’s ET and Myelofibrosis.. I...

Paul1993et

•2 years ago

2 Replies

Erythromelalgia Advice for someone with ET

Hello everyone, I’m hoping for some advice on dealing with Erythromelalgia. I’m currently self diagnosed but based on my symptoms and it being more common in...

Hello everyone, I’m hoping for some advice on dealing with Erythromelalgia. I’m...

JojoWonder

•2 years ago

10 Replies

Hydroxyurea and aspirin.

Who else taking hydroxyurea and aspiriN for treatment et? Is it safe taking both.

Who else taking hydroxyurea and aspiriN for treatment et? Is it safe taking both...

shiela23

•2 years ago

13 Replies

Instow1

Dear friends just had 3 monthly boos test platelets up slightly so my hem consultant increased my does of hydroxycarbamide Does anyone know how I can help to...

Dear friends just had 3 monthly boos test platelets up slightly so my hem consul...

Instow1

•2 years ago

5 Replies

ET Fluctuating Platelets

I wonder if anyone has experienced this. I was diagnosed with ET in 2011, was on HU then Interferon then back on HU for the last 4 years. Since April this year...

I wonder if anyone has experienced this. I was diagnosed with ET in 2011, was on...

eastwood1932

•2 years ago

18 Replies

Finally, my first Pegasys injection!

Hi all! After waiting for 3 months for a drug change, I finally had my first Peg injection this past Tuesday. My local hem/onc doc prescribed 90mcg for my...

Hi all! After waiting for 3 months for a drug change, I finally had my first Peg...

Wewo01

•2 years ago

31 Replies

Polycythemia Vera & Menstruation

I have recently been diagnosed with Polycythemia Vera and have been getting phlebotomy’s every two weeks since December to reduce my Hematocrit. I used to have...

I have recently been diagnosed with Polycythemia Vera and have been getting phle...

Moonflowers_

•2 years ago

3 Replies

Success!

Just to report that I had my 5th COVID vaccine (or 2nd booster) on Friday. No problems at the vaccine centre. Didn’t even ask for any paperwork. I think...

Just to report that I had my 5th COVID vaccine (or 2nd booster) on Friday. No pr...

Peachjoy

•2 years ago

8 Replies

Anyone familiar with DNMT3A?

Hi everyone, hope all is well with everyone! Btw some updates about my mpn, I’ve just got my results from NGS test recently, as a result got my jak2 and DNMT3A...

Hi everyone, hope all is well with everyone! Btw some updates about my mpn, I’ve...

Dan39

•2 years ago

20 Replies

Besremi 1st month w/out Phleb since starting

Homozygous JAK2 / PV. Started Besremi January 29th. Previously on Pegasys at 135mcg effective dose. The attached image spells everything out for the most...

Homozygous JAK2 / PV. Started Besremi January 29th. Previously on Pegasys at 1...

jon1972

•2 years ago

21 Replies

Phlebotomy

Had my first phlebotomy today. HCT was 51.3. It went fine. I feel fine.

Barbiebreath

•2 years ago

6 Replies

Thrombocytosis of no known cause?

I have just been looking over my posts from 2008 2009 on another site when I was last at haematology with persistent high white count. Raised platelets and...

I have just been looking over my posts from 2008 2009 on another site when I was...

Notdiagnosed

•2 years ago

15 Replies

Help with info on rux

I recently posted my views on rux, sorry folks it was meant for plantfervour9 I hope they get to read it! Obviously hit wrong reply piece! Bruddery

I recently posted my views on rux, sorry folks it was meant for plantfervour9 I ...

bruddery

•2 years ago

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Request for my views on rux

Hi there I received a request re ruxilitinib. I have to admit that I consider it to have been my “life saver” I was on hydroxyurea from 2007 to 2016 and had...

Hi there I received a request re ruxilitinib. I have to admit that I consider i...

bruddery

•2 years ago

3 Replies

ET problem

Struggling everyday swaying my head dizziness and headache… who else experiencing this… is this symptoms of et? Blood test are fine. How to get rid this...

Struggling everyday swaying my head dizziness and headache… who else experiencin...

shiela23

•2 years ago

21 Replies

Rollercoaster Ride - MPN

Hi Everyone, I know I don’t post on here all the time but I do think it helps me to rationalise my thoughts My story - April 2020 I found out: - I had Varices...

Hi Everyone, I know I don’t post on here all the time but I do think it helps me...

FAM_KT

•2 years ago

8 Replies

Besremi and Zyrtec

Hi.........I'm going through the process of getting approved for Besremi. My not specialist hem is worried about me taking Zyrtec, She told me that I need to...

Hi.........I'm going through the process of getting approved for Besremi. My not...

nyelynndesigns

•2 years ago

11 Replies

Neutrophils?

I have ET, my friend has multiple myeloma, she has been in remission for a few years thanks to being on a clinical trial involving SCT. However, at the moment...

I have ET, my friend has multiple myeloma, she has been in remission for a few y...

lizzziep

•2 years ago

2 Replies

Peg jab

Given I succeeded self administering the jab on the last occasion, I was fairly confident I'd mastered the art. Alas, yesterday was a complete flop. I was...

Given I succeeded self administering the jab on the last occasion, I was fairly ...

gilded

•2 years ago

11 Replies

Has anyone moved from Hydroxy to Ruxolitinib.

I have an appointment next week to talk about changing my meds, because I have night sweats and bone ache for over 5 years now and it not getting better, the...

I have an appointment next week to talk about changing my meds, because I have n...

wendycu

•2 years ago

9 Replies

A follow up to my post about switching from hydroxyurea to interferon. Questions about switching to besremi or anagrelide.

I have ET jak 2 positive and can no longer tolerate hydroxyurea. I had a phone consultation with my hematologist yesterday and asked him about switching from...

I have ET jak 2 positive and can no longer tolerate hydroxyurea. I had a phone c...

Island-Lady

•2 years ago

16 Replies

Slightly disconcerting review

Four hours later than scheduled, my haem called to say that she thought I’d benefit from a venesection and that I should also increase my weekly PEG dose,...

Four hours later than scheduled, my haem called to say that she thought I’d bene...

FG251

•2 years ago

17 Replies

Heredity FB group?

Would anyone be interested in a FB group about this issue?

Copurnicus

•2 years ago

2 Replies

Underfloor heating

We are planning a house renovation, and I thought it would be handy to have the underfloor heating throughout. There are articles online stating that is not...

We are planning a house renovation, and I thought it would be handy to have the ...

flamboyant_hawking

•2 years ago

13 Replies

Sibling just diagnosed with a different blood cancer

Does anyone with an MPN have a sibling with the same or a different blood cancer? I have ET Jak 2 + and my brother has just been diagnosed with Non Hodgkin...

Does anyone with an MPN have a sibling with the same or a different blood cancer...

SDJD

•2 years ago

45 Replies

5th vaccine nightmare

Hi. Please can anybody advise? I’ve got my 5 th vaccine (COVID) booked for Saturday. The GP receptionists absolutely refuse to give me a support letter for me...

Hi. Please can anybody advise? I’ve got my 5 th vaccine (COVID) booked for Satur...

Peachjoy

•2 years ago

16 Replies

5th Covid Vaccination

Husband has PV and MPN and prescribed Ruxolitinib. He has been called for a further Covid vaccination. His last one his 4th being in February 2022. So this...

Husband has PV and MPN and prescribed Ruxolitinib. He has been called for a fur...

waddles22

•2 years ago

6 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for June 2022

1st Besremi shot

Polycythemia Vera

Change of meds

Excellent results of Bomedemstat in the Phase 2 study’s ET and Myelofibrosis..

Erythromelalgia Advice for someone with ET

Hydroxyurea and aspirin.

Instow1

ET Fluctuating Platelets

Finally, my first Pegasys injection!

Polycythemia Vera & Menstruation

Success!

Anyone familiar with DNMT3A?

Besremi 1st month w/out Phleb since starting

Phlebotomy

Thrombocytosis of no known cause?

Help with info on rux

Request for my views on rux

ET problem

Rollercoaster Ride - MPN

Besremi and Zyrtec

Neutrophils?

Peg jab

Has anyone moved from Hydroxy to Ruxolitinib.

A follow up to my post about switching from hydroxyurea to interferon. Questions about switching to besremi or anagrelide.

Slightly disconcerting review

Heredity FB group?

Underfloor heating

Sibling just diagnosed with a different blood cancer

5th vaccine nightmare

5th Covid Vaccination

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