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MPN Voice

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Grounding? And other natural remedies?

Curious about results from "grounding." Grounding refers to absorbing the natural electrons from the earth (ground.) By standing barefoot outside, or by...

Curious about results from "grounding." Grounding refers to absorbing the natur...

PMac314

•1 month ago

14 Replies

MPN and palpitations

Good evening. I'm interested to learn if anyone else gets a lot of palpitations? It's been an issue in and off this year but a lot worse lately. I've had heart...

Good evening. I'm interested to learn if anyone else gets a lot of palpitations?...

Fivecatsandcounting

•6 months ago

9 Replies

IVIG while having ET?

Hi everyone. Has anyone with ET ever been treated with IVIG and if so did it help or hurt your symptoms? Almost 3 years ago I stopped taking peg for my...

Hi everyone. Has anyone with ET ever been treated with IVIG and if so did it ...

George1976

•6 months ago

5 Replies

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Lots of Bruising

Hello everyone I hope you are having a good day I have ET, and started taking 2 baby aspirin and 500 mg daily of Hydroxyurea last March ('22) when my platelets...

Hello everyone I hope you are having a good day I have ET, and started taking 2 ...

IrishSetterLover

•7 months ago

4 Replies

Jak2 now "Undetectable"

Hi I was diagnosed with Jak2 positive PV back in May 2019, after months of venesections I was put on Peginterferon in Nov 2019. The first year I was 0n 45mg...

Hi I was diagnosed with Jak2 positive PV back in May 2019, after months of ven...

WindyGale

•7 months ago

10 Replies

Looking for an MPN specialist near Washington DC

Living in Northern VA and looking for a local-ish MPN specialist recommendation. Not having any luck with local hematologist oncologists being well-informed...

Living in Northern VA and looking for a local-ish MPN specialist recommendation....

110srh

•7 months ago

9 Replies

newly diagnosed queries

Hi, recently diagnosed with ET, to say I was shocked is an understatement, as platelets elevated slightly 460 & JAK2 positive results was a surprise to...

Hi, recently diagnosed with ET, to say I was shocked is an understatement, as p...

NickyRobinson

•7 months ago

10 Replies

PV with Exon 12 Mutation & Besremi Treatment Experiences

Hello, I'm reaching out to share my experience and gather insights from those who've walked this path before. A brief background: I was diagnosed with PV,...

Hello, I'm reaching out to share my experience and gather insights from those...

skakulec2

•8 months ago

15 Replies

Spleen embolisation gone wrong

Hello, Does anyone have any experience of why anyone with Polycythemia Vera and Portal Vein Thrombosis, with a 22cm spleen would be offered a partial...

Hello, Does anyone have any experience of why anyone with Polycythemia Vera and...

DeKa

•9 months ago

18 Replies

IDH2 R172 Linked With Improved Survival in Myeloid Neoplasms from April 14, 2023 Hematology Advisor- More r/t AML than MPNs- look below it..

Among patients with myeloid neoplasms including acute myeloid leukemia (AML), IDH2 R172 mutations (mR172) appear to be linked with improved overall...

Among patients with myeloid neoplasms including acute myeloid leukemia (AML), ID...

PhysAssist

•1 year ago

11 Replies

Important to know, but sucks to have: TP53 Mutations Confer High Risk in Patients With Myelofibrosis Undergoing HSCT

Patients with myelofibrosis who harbored multi-hit TP53 mutations were at increased risk for relapse, shorter survival, and leukemic transformation after...

Patients with myelofibrosis who harbored multi-hit TP53 mutations were at increa...

PhysAssist

•1 year ago

Be the first to reply

"The Verify Study" for PV Patients

Watching today CBS Saturday Morning News showed a short ad for the "The Verify Study" for PV Patient There were not many details mentioned but if interested...

Watching today CBS Saturday Morning News showed a short ad for the "The Verify...

Pat032018

•1 year ago

2 Replies

Progression Question/Experiences

Hello everyone, I’ll try to keep this short. I was diagnosed with ET in March of 2020. My platelet levels were well above the 600 mark and after biopsy ET...

Hello everyone, I’ll try to keep this short. I was diagnosed with ET in March ...

924-924

•1 year ago

8 Replies

Just saw MPN Specialist | ET+CALR

Last week I saw an MPN Specialist at Stanford in Palo Alto, CA (Dr. Gotlib) and it was nothing short of AMAZING! I waited months for this appointment so by the...

Last week I saw an MPN Specialist at Stanford in Palo Alto, CA (Dr. Gotlib) and ...

Zeppelin11

•1 year ago

11 Replies

Starting phlebotomies soon but not sure if this is the right approach?

Hi all, I'm 65 and was diagnosed last summer via bone marrow biopsy and genetic testing as having JAK2 positive ET. I started taking hydroxyurea 3 times a...

Hi all, I'm 65 and was diagnosed last summer via bone marrow biopsy and genetic ...

Maximo06

•1 year ago

5 Replies

Kia Ora Koutou!

Kia Ora MPN whanau 😊it’s taken me a little while to write this post but I’d first like to introduce myself - hi 👋🏼 my name is Kylee and I am a 39 yr old New...

Kia Ora MPN whanau 😊it’s taken me a little while to write this post but I’d fir...

KyleeR

•1 year ago

9 Replies

MPN-U or MPN Unclassifiable

Initial Dx was PV but failed to meet all criteria. I began seeing an MPN specialist and had Next Generation Sequencing done, and he reclassified me as MPN-U. I...

Initial Dx was PV but failed to meet all criteria. I began seeing an MPN special...

Jimbosan

•1 year ago

11 Replies

Mouth ulcers and hydroxy

Happy New Year to you all! Since being on hydroxy, I’ve had ulcers in my mouth and with mouthwash prescribed by haematologist, they disappeared quickly. Last...

Happy New Year to you all! Since being on hydroxy, I’ve had ulcers in my mouth ...

Cokopops

•1 year ago

9 Replies

ET , newly diagnosed and have a couple of questions.

Hi. I'm was diagnosed with ET - Calr in October 22 (female aged 52) (taking Asprin), I had gone to my gp in Dec 21 as I found out my blood pressure was though...

Hi. I'm was diagnosed with ET - Calr in October 22 (female aged 52) (taking Aspr...

Cat_lady52

•1 year ago

19 Replies

On goin results on bomedemstat (LSD1 Inhibitor)

Hi All, I have been part of this great group for the last year or so, and although I wish none of us were here, I’m glad to have found an online community that...

Hi All, I have been part of this great group for the last year or so, and althou...

jafar09

•1 year ago

9 Replies

NAC benefits and side effects

Dear all, I am currently investigating the possibility to start an anti-inflammatory treatment based on NAC (on top of Besremi). Looking over the NAC side...

Dear all, I am currently investigating the possibility to start an anti-inflamma...

Dane12

•1 year ago

11 Replies

Odd symptoms for MPN

Quick question out of curiosity from this invaluable group:Does anyone have any unusual/atypical symptoms that isn't necessarily directly linked to your MPN...

Quick question out of curiosity from this invaluable group:Does anyone have any ...

Emmyroos

•1 year ago

15 Replies

Hydroxycarbamide and hair dye and perfume

Hello all. I’ve been on hydroxy for over a year now and I’m just wondering if my imagination is working overtime.. Has anyone noticed that hair dye doesn’t...

Hello all. I’ve been on hydroxy for over a year now and I’m just wondering if m...

Cokopops

•1 year ago

20 Replies

Dr. Fleischman shares the latest treatments for MF, when a clinical trial should be considered and the MPN - autoimmune disease connection.

Hope you enjoy the interview. https://www.pvreporter.com/is-there-a-connection-between-mpns-and-autoimmune-diseases/ Best, David

Hope you enjoy the interview. https://www.pvreporter.com/is-there-a-connection-...

PVReporter

•1 year ago

14 Replies

Great article for “the itch”.

Hi Yes I have the itch but only sometimes. Lately it has become almost unbearable. I have been on pegasys for 6 months. Read this article on Mast Cell...

Hi Yes I have the itch but only sometimes. Lately it has become almost unbeara...

MAP44

•1 year ago

6 Replies

Besremi

Hello all, I am on my 4th dose of besremi I have not had any terrible side affects. However my Lipase has been rising yesterday at 98ul I am concerned. The...

Hello all, I am on my 4th dose of besremi I have not had any terrible side affe...

josup26

•2 years ago

Be the first to reply

Make claim for PIP Allowance

I have polycythemia vera have since 2019. I want to claim PIP not sure i am entitled to it. My family telling me i should be applying for this because of my...

I have polycythemia vera have since 2019. I want to claim PIP not sure i am enti...

Taz777

•2 years ago

3 Replies

NGS Panel - Multiple Mutations/ Does Order Matter?

Going over my medical records just realized that the MPN specialist ordered a full NGS panel when he did the BMB - I had thought we had just determined the...

Going over my medical records just realized that the MPN specialist ordered a fu...

Solyesh

•2 years ago

5 Replies

An antibody for myelofibrosis – “that’s a true discovery”

Recently, one of our MATES members showed me this (extract) article (MiaGrace), & I believe that many others might wish to see it too... A new monoclonal...

Recently, one of our MATES members showed me this (extract) article (MiaGrace)...

socrates_8

•2 years ago

30 Replies

Update

just got a call to say that my husband's JAK2 results are back. They wanted to discuss it with him over the phone but I pointed out he has major brain...

just got a call to say that my husband's JAK2 results are back. They wanted to...

CelticCrow68

•2 years ago

4 Replies

Write a post or ask a question

Posts - MPN Voice | HealthUnlocked

MPN Voice

MPNs General posts

Grounding? And other natural remedies?

MPN and palpitations

IVIG while having ET?

Lots of Bruising

Jak2 now "Undetectable"

Looking for an MPN specialist near Washington DC

newly diagnosed queries

PV with Exon 12 Mutation & Besremi Treatment Experiences

Spleen embolisation gone wrong

IDH2 R172 Linked With Improved Survival in Myeloid Neoplasms from April 14, 2023 Hematology Advisor- More r/t AML than MPNs- look below it..

Important to know, but sucks to have: TP53 Mutations Confer High Risk in Patients With Myelofibrosis Undergoing HSCT

"The Verify Study" for PV Patients

Progression Question/Experiences

Just saw MPN Specialist | ET+CALR

Starting phlebotomies soon but not sure if this is the right approach?

Kia Ora Koutou!

MPN-U or MPN Unclassifiable

Mouth ulcers and hydroxy

ET , newly diagnosed and have a couple of questions.

On goin results on bomedemstat (LSD1 Inhibitor)

NAC benefits and side effects

Odd symptoms for MPN

Hydroxycarbamide and hair dye and perfume

Dr. Fleischman shares the latest treatments for MF, when a clinical trial should be considered and the MPN - autoimmune disease connection.

Great article for “the itch”.

Besremi

Make claim for PIP Allowance

NGS Panel - Multiple Mutations/ Does Order Matter?

An antibody for myelofibrosis – “that’s a true discovery”

Update

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What age were you when your MPN was diagnosed?

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Posts - MPN Voice | HealthUnlocked

MPN Voice

MPNs General posts

Grounding? And other natural remedies?

MPN and palpitations

IVIG while having ET?

Lots of Bruising

Jak2 now "Undetectable"

Looking for an MPN specialist near Washington DC

newly diagnosed queries

PV with Exon 12 Mutation & Besremi Treatment Experiences

Spleen embolisation gone wrong

IDH2 R172 Linked With Improved Survival in Myeloid Neoplasms from April 14, 2023 Hematology Advisor- More r/t AML than MPNs- look below it..

Important to know, but sucks to have: TP53 Mutations Confer High Risk in Patients With Myelofibrosis Undergoing HSCT

"The Verify Study" for PV Patients

Progression Question/Experiences

Just saw MPN Specialist | ET+CALR

Starting phlebotomies soon but not sure if this is the right approach?

Kia Ora Koutou!

MPN-U or MPN Unclassifiable

Mouth ulcers and hydroxy

ET , newly diagnosed and have a couple of questions.

On goin results on bomedemstat (LSD1 Inhibitor)

NAC benefits and side effects

Odd symptoms for MPN

Hydroxycarbamide and hair dye and perfume

Dr. Fleischman shares the latest treatments for MF, when a clinical trial should be considered and the MPN - autoimmune disease connection.

Great article for “the itch”.

Besremi

Make claim for PIP Allowance

NGS Panel - Multiple Mutations/ Does Order Matter?

An antibody for myelofibrosis – “that’s a true discovery”

﻿Update

Search posts

Pinned Posts

Latest poll

What age were you when your MPN was diagnosed?

Topics

Archive

Update