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MPN Voice

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ET but no HU

I was diagnosed with ET about a year ago, CALR, 750 platelets, age 66. I had a stroke about 10 yrs ago. I decided to take aspirin but on reviewing all the...

I was diagnosed with ET about a year ago, CALR, 750 platelets, age 66. I had a ...

NathanGalloway

•1 month ago

13 Replies

Interferon or Hydroxycarbamide?

Hi all, I've beed recently diagnosed with Essential Thromcythemia and have been presented with two treatment options, I guess it will all be around side...

Hi all, I've beed recently diagnosed with Essential Thromcythemia and have been ...

Basil4sybil

•1 month ago

24 Replies

Anybody out there still getting diagnosed?

Hi! I am still getting diagnosed. I have my doctors appointment on tuesday, where I'll find out if I really have an MPN or not. However, I've been dealing with...

Hi! I am still getting diagnosed. I have my doctors appointment on tuesday, wher...

fgo96

•2 months ago

15 Replies

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Can I ask to be seen at Guy’s Hospital??

Sorry if this has been asked before. I searched with no luck! I am having my first cancer-versary soon! It’s been a tough year. It all started a year ago...

Sorry if this has been asked before. I searched with no luck! I am having my ...

PVKween

•2 months ago

13 Replies

PV - need medical codes for allele burden test

I have polycythemia vera and have been on hydroxyurea since November 2023. My doctor has finally agreed to prescribe Besemri but, I have asked him to first...

I have polycythemia vera and have been on hydroxyurea since November 2023. My d...

FlannelPJs

•7 months ago

10 Replies

Essential thrombocythemia with non-canonical MPL mutations (e.g., MPL R102P or R102C or R102L, etc.)

Hi! I wanted to see if there are other people out there who have been diagnosed with essential thrombocythemia with non-canonical MPL mutation. Mine is MPL...

Hi! I wanted to see if there are other people out there who have been diagnosed ...

TTA_

•7 months ago

9 Replies

Pre-diagnosis advice - persistent mild thrombocytosis

Hello. I'm still waiting to see a haematologist but worried I have ET with no symptoms but a persistent mildly raised platelet count of around 460-480 over...

Hello. I'm still waiting to see a haematologist but worried I have ET with no s...

DS00

•8 months ago

7 Replies

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

•10 months 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

•1 year ago

10 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

•1 year ago

5 Replies

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

•1 year 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

•1 year 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

•1 year ago

10 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

•1 year 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

•1 year 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

•1 year 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

•2 years 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

•2 years ago

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"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

•2 years 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

•2 years 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

•2 years 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

•2 years 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

•2 years 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

•2 years 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

•2 years 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

•2 years 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

•2 years 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

•2 years 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

•2 years 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

•2 years ago

20 Replies

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Posts - MPN Voice | HealthUnlocked

MPN Voice

MPNs General posts

ET but no HU

Interferon or Hydroxycarbamide?

Anybody out there still getting diagnosed?

Can I ask to be seen at Guy’s Hospital??

PV - need medical codes for allele burden test

Essential thrombocythemia with non-canonical MPL mutations (e.g., MPL R102P or R102C or R102L, etc.)

Pre-diagnosis advice - persistent mild thrombocytosis

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

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