Posts - MPN Voice | HealthUnlocked

MPN Voice

10,523 members • 14,539 posts

All posts for April 2023

Arm/Shoulder pain

Hi all. MF and Jak2 positive ET here. My shoulder got wrenched in January whilst playing ball games with my dog. It had started to get better but then my wife...

Hi all. MF and Jak2 positive ET here. My shoulder got wrenched in January whils...

mystic_shrimp

•1 year ago

3 Replies

Hematocrit question

Currently Hematocrit is 43.1, Hbg 12.4. Am going on a trip so won’t have access to phlebotomy for over 3 weeks & don’t want to go over 45 especially while...

Currently Hematocrit is 43.1, Hbg 12.4. Am going on a trip so won’t have access ...

wateron

•1 year ago

16 Replies

alcohol intolerance

Hello All, I am 51 male had ET for 20 years currently on Interferon. After drinking alcohol I have a feeling of nausea and tiredness for days after. I’m...

Hello All, I am 51 male had ET for 20 years currently on Interferon. After dr...

stevenjust

•1 year ago

27 Replies

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Besremi Side Effects

Hello, I would like to hear from anyone who has experience with Besremi. After 9 years on Hydroxyurea, it stopped working for me. I now have some scarring in...

Hello, I would like to hear from anyone who has experience with Besremi. After 9...

Artelu

•1 year ago

20 Replies

Rare gene

Has anyone else got the rare gene ENGL1

Blm230408

•1 year ago

1 Reply

interferon alpha effectiveness for ET

hi again 😃 I recently asked how long it takes for interferon alpha perg to start working and decrease my platelet count. My diagnosis is ER (triple negative)....

hi again 😃 I recently asked how long it takes for interferon alpha perg to star...

Maxamber

•1 year ago

23 Replies

Really red faced and feeling like I was going to pass out and sweating

Hi Everyone I wanted to ask if anyone has experienced having a really red face and feeling shaky and feeling like they are going to pass out , with PV ?This...

Hi Everyone I wanted to ask if anyone has experienced having a really red face a...

Blonde25

•1 year ago

10 Replies

BMB pathologist won't commit to a diagnosis?

Hi, I'm new here and just trying to learn as much as I can about MPNs. I was recently diagnosed with Jak2+ ET, however the pathologist who completed my BMB...

Hi, I'm new here and just trying to learn as much as I can about MPNs. I was re...

WRLM

•1 year ago

17 Replies

Frustrated

First off, I have NOT been diagnosed with an MPN. I have had high platelets (between 450-520) since at least 2017 (not sure exactly because I wasn't monitoring...

First off, I have NOT been diagnosed with an MPN. I have had high platelets (bet...

levismama

•1 year ago

4 Replies

Variations in Patient Response to interferons

Had an interesting discussion with my MPN doc today. I have PV and have been on Besremi for 14 months and recently increased to the maximum dose of 500 mcg...

Had an interesting discussion with my MPN doc today. I have PV and have been on ...

mfh7

•1 year ago

35 Replies

Durability of IFN, my n=1 experiment

As promised here are some plots showing two counts while off IFN therapy for 3 months. Leuk were also rising nicely. I stopped Besremi at the red line, mid...

As promised here are some plots showing two counts while off IFN therapy for 3 m...

EPguy

•1 year ago

7 Replies

Changing blood results x

Hi, I'm on 90mcg of Pegasys Interferon at present and my HCT and platelets are finally reducing without venesection which it good....but my most recent plasma...

Hi, I'm on 90mcg of Pegasys Interferon at present and my HCT and platelets are f...

RCBr

•1 year ago

4 Replies

Aspirin which type and when to take

I had assumed that Entric asprin would be better for me in the longterm than dispersable. I asked my GP abut this who disagreed. A quick bit of research latter...

I had assumed that Entric asprin would be better for me in the longterm than dis...

DougyW

•1 year ago

14 Replies

Jakafi and H/H PCV

Hi Everyone, Hi Everyone, I was on Jakafi for about 5 weeks. Labs were fine 2 weeks in and then 2 weeks later Hct/hemoglobin dropped to 36 and 12. I...

Hi Everyone, Hi Everyone, I was on Jakafi for about 5 weeks. Labs were fin...

JeanieRN

•1 year ago

8 Replies

"Guardian" article.

Sorry just been reading the posts people put up yesterday that I missed before I posted. I meant to do this yesterday but then chocolate bunnies got in the...

Sorry just been reading the posts people put up yesterday that I missed before I...

Cassandra61

•1 year ago

2 Replies

Tim Jonze - ET

https://www.theguardian.com/society/2023/apr/08/how-cancer-in-my-30s-brought-me-face-to-face-with-death Hiya, The above link is for an article by Tim...

https://www.theguardian.com/society/2023/apr/08/how-cancer-in-my-30s-brought-me-...

Cassandra61

•1 year ago

27 Replies

contact urticaria

hi, does anybody have any experience of contact urticaria or any effective treatment? I have PV and my symptoms are skin itchiness after shower but also when...

hi, does anybody have any experience of contact urticaria or any effective treat...

STK52

•1 year ago

11 Replies

Hydrea VS Jakavi

After 20 years with hudrea the moment has came when jakavi entered my life. Does anyone have experience with jakavi? I would appreciate it if someone could...

After 20 years with hudrea the moment has came when jakavi entered my life. Do...

MarPapa

•1 year ago

23 Replies

Jakafi

After trying HU and not being able to tolerate the side effects, my oncologist woukd like me to try Jakafi. Have any of you tried this for PV or currently on...

After trying HU and not being able to tolerate the side effects, my oncologist ...

K-itty

•1 year ago

4 Replies

Hydroxyurea

I was finally diagnosed after asking my dr‘s why my platelets stayed so high. Finally a new internal medicine doc sent me to a hemotologist/oncologist. +JAK2....

I was finally diagnosed after asking my dr‘s why my platelets stayed so high. Fi...

Plate

•1 year ago

37 Replies

Guardian article today

The Guardian today, 9 April, features a full and detailed account by journalist Tim Jonze of his own diagnosis of blood cancer. His journey was mixed and...

The Guardian today, 9 April, features a full and detailed account by journalist...

Inclement

•1 year ago

16 Replies

Mystery on hold

Hey folks, Been a while but I know some were interested after my weird encounter with MPNs, being at least temporarily diagnosed with PV as a child. I won’t...

Hey folks, Been a while but I know some were interested after my weird encount...

Chaucer89

•1 year ago

9 Replies

MRIs for marrow analysis?

In this study I just posed on there is a brief reference to using MRI for bone marrow....

In this study I just posed on there is a brief reference to using MRI for bone m...

EPguy

•1 year ago

13 Replies

Rux and IFN combo therapy

This recent report points to benefits of combining Rux and IFN. Of particular interest is the low doses that were enabled toward the end. -Notable: "The...

This recent report points to benefits of combining Rux and IFN. Of particular i...

EPguy

•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

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Latest appointment update…..ET investigation

Further to my previous post from yesterday I just thought I’d update you all of the outcome from my Consultants telephone appointment today incase my info may...

Further to my previous post from yesterday I just thought I’d update you all of ...

Purdy13

•1 year ago

9 Replies

Update

I saw a consultant yesterday, different from last time, after being off Anagrelide for four weeks my platelets had jumped to nearly 800, however my anaemia was...

I saw a consultant yesterday, different from last time, after being off Anagreli...

lizzziep

•1 year ago

16 Replies

Molecular Response vs progression, Rux

A long term study looked at molecular response (MR) vs progression for PV and ET. It was for Rux therapy, although it's possible these molecular correlations...

A long term study looked at molecular response (MR) vs progression for PV and ET...

EPguy

•1 year ago

27 Replies

Introduction and question

Hello everyone. My name is Tiffany. I've been reading through some of the posts relevant to my interests but haven't had a need to post myself until now....

Hello everyone. My name is Tiffany. I've been reading through some of the pos...

onlineallthetime

•1 year ago

20 Replies

Third clinic visit, third different consultant

I've had my third clinic visit in six months and seen a the third different consultant and got a third opinion on starting medication for my PV! The first...

I've had my third clinic visit in six months and seen a the third different cons...

Transporter

•1 year ago

11 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for April 2023

Arm/Shoulder pain

Hematocrit question

alcohol intolerance

Besremi Side Effects

Rare gene

interferon alpha effectiveness for ET

Really red faced and feeling like I was going to pass out and sweating

BMB pathologist won't commit to a diagnosis?

Frustrated

Variations in Patient Response to interferons

Durability of IFN, my n=1 experiment

Changing blood results x

Aspirin which type and when to take

Jakafi and H/H PCV

"Guardian" article.

Tim Jonze - ET

contact urticaria

Hydrea VS Jakavi

Jakafi

Hydroxyurea

Guardian article today

Mystery on hold

MRIs for marrow analysis?

Rux and IFN combo therapy

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

Latest appointment update…..ET investigation

Update

Molecular Response vs progression, Rux

Introduction and question

Third clinic visit, third different consultant

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