Posts - MPN Voice | HealthUnlocked

MPN Voice

11,284 members•15,761 posts

All posts for February 2025

High platelets

I have had p.v for 5 years on I am currently approaching 50 platelets currently 1420 and white blood cells currently at 16.0. I am very close to the limit of...

I have had p.v for 5 years on I am currently approaching 50 platelets currently ...

Jrc2019

•2 months ago

4 Replies

medication

I have ET with Jak2 following an appointment with my haematologist on Monday, I am due to start Hydroxycarbamide 500mg on Monday, due to age as my platelets...

I have ET with Jak2 following an appointment with my haematologist on Monday, I ...

Footballwidow66

•2 months ago

12 Replies

Bone marrow

Can anyone tell me is the one marrow hurts

superburning628

•2 months ago

35 Replies

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Hydroxychloroquine & ET

Anyone ever take hydroxychloroquine while having an MPN? After several years of hints that I have an autoimmune disorder I’ve been diagnosed officially with...

Anyone ever take hydroxychloroquine while having an MPN? After several years ...

George1976

•2 months ago

24 Replies

Update

I was diagnosed some 11 years ago. My numbers here high WBC 12.7 Hb 18.2 HCT 0.614 Platelets 1143 Neuts 9.59 You can imagine that I felt rough I...

I was diagnosed some 11 years ago. My numbers here high WBC 12.7 Hb 18.2 HC...

shiftzz

•2 months ago

6 Replies

Absolute Eosinophil Count

Hi I was wondering if any of you have a hi absolute Eosinophil Count in bloods and what it lead to as mine is always high Stuart

Hi I was wondering if any of you have a hi absolute Eosinophil Count in bloods a...

superburning628

•2 months ago

6 Replies

Update on Doctor Visit

Had my appointment yesterday ,they were one hour and 15 minutes late but I digress. My platlets are bumping 900,000 so They asked me to try to take the hydrox...

Had my appointment yesterday ,they were one hour and 15 minutes late but I digre...

Strumin210

•2 months ago

3 Replies

Bruising

I have prefibrotic myleofibrosis since 2022, treated with hydroxy 500mg daily. I bruise very easily. The back of my hands usually show dark bruise patches. Is...

I have prefibrotic myleofibrosis since 2022, treated with hydroxy 500mg daily. I...

Eloise70

•2 months ago

2 Replies

Colitis and diverticulitis

I was in hospital in April with colitis and diverticulitis in January of this year diagnosed with mpn is there any connection

I was in hospital in April with colitis and diverticulitis in January of this ye...

superburning628

•2 months ago

2 Replies

ET Jak2

I know ET can cause burning and tingling in hands and feet, but I feel it up my arms and across my back. Has anyone else experienced that? Are my nerves...

I know ET can cause burning and tingling in hands and feet, but I feel it up my ...

Smoothie2020

•2 months ago

3 Replies

Pv ruxolitinib and ulcerative colitis

Hi does anyone with pv have ulcerative colitis was it a consultation when given ruxolitinib i never give it a second thought until I got a message...

Hi does anyone with pv have ulcerative colitis was it a consultation when giv...

Squirrelnuts403

•2 months ago

6 Replies

Mpn thrombocytosis

I have recently been diagnosed with mpn thrombocytosis I would like to add I was suffering with very high blood pressure and am on 5 separate blood pressure...

I have recently been diagnosed with mpn thrombocytosis I would like to add I was...

superburning628

•2 months ago

Be the first to reply

Mpn for life

Hi I have just been diagnosed with mpn. I am currently in hospital with with the shakes and cannot walk they say it's not the mpn I also am getting gaps in my...

Hi I have just been diagnosed with mpn. I am currently in hospital with with the...

superburning628

•2 months ago

21 Replies

Ongoing discomfort in arms

Hello everyone, I have been experiencing extremely achy arms (and slightly shoulders too) for the past few months. I initially put this down to having changed...

Hello everyone, I have been experiencing extremely achy arms (and slightly shoul...

Hat3

•2 months ago

4 Replies

Effect of Interferon (Besremi) on cell count

Hi again, I started with Besremi (100 mcg, biweekly) 8 weeks ago and so far there hasn't been any visible effect on my platelets count - still in the range of...

Hi again, I started with Besremi (100 mcg, biweekly) 8 weeks ago and so far ther...

berlin_72

•2 months ago

22 Replies

Hydroxycarbamide

Hello all, I’ve just joined MPN Voice after reading the many helpful comments. I’m 83 and was diagnosed with PCV and Jak 2, last July following a stroke...

Hello all, I’ve just joined MPN Voice after reading the many helpful comments. ...

Ipheion25

•2 months ago

9 Replies

Transplant postponed

Hey everyone, Just a quick update—my transplant has been postponed until March 13 due to donor availability issues. It’s frustrating, but I’m staying positive...

Hey everyone, Just a quick update—my transplant has been postponed until March 1...

Hatchie

•2 months ago

21 Replies

I can not stop feeling as though I were in the ring with Mine Type when I wake up in the morning

This disease sucks

Codybear1499

•2 months ago

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drop foot is a bitch

I have it bad when I walk

Codybear1499

•2 months ago

1 Reply

Today’s visit 😊 Besremi

Well, saw local oncologist today. He said I have been in hematological remission for almost 2 years. He said his reaction usually would be to reduce, but...

Well, saw local oncologist today. He said I have been in hematological remissio...

KLCTJC

•2 months ago

30 Replies

Two studies of Rux, molecular response and outcomes

I'm posting this partly just to get it in one place. This info has been discussed before, but now at least I can find it easily as the relevance of VAF comes...

I'm posting this partly just to get it in one place. This info has been discuss...

EPguy

•2 months ago

28 Replies

I have been on Hydoxurrea on and off for a year now and quit taking it about a month ago .

I started the medication back for 3 days and started getting cramps,massive cramps so I quit it again. My platelets are around 900,000 at the moment. I have a...

I started the medication back for 3 days and started getting cramps,massive cram...

Strumin210

•2 months ago

6 Replies

Trouble with Health Insurance

Hi Guys, Has anyone’s health insurance been refused for ro-peginterferon because their spleen was enlarged? Axa have just told me they won’t authorize my...

Hi Guys, Has anyone’s health insurance been refused for ro-peginterferon becau...

DarcyShepp

•2 months ago

6 Replies

Experience with Eliquis/apixaban blood thinner

Greetings MPN family, I currently take a drug called Eliquis, whose generic name is apixaban and which is a blood thinner that protects against the formation...

Greetings MPN family, I currently take a drug called Eliquis, whose generic nam...

SouthSideA

•2 months ago

17 Replies

Update on Besremi combo with Jakafi

I'm now 6 weeks on Besremi + Jakafi (5 mg 2x daily) Today my WBC measured low for the first time at 2.83. Doc thinks these numbers have stabilized. Three...

I'm now 6 weeks on Besremi + Jakafi (5 mg 2x daily) Today my WBC measured low f...

Luthorville

•2 months ago

33 Replies

AB results. Less than 1% allele burden. Yay!

Hi all After some time on Pegasys Inteferon, my haematologist agreed to retest my allele burden. When diagnosed it was 14%, now less than 1%. (Blood, not...

Hi all After some time on Pegasys Inteferon, my haematologist agreed to retest m...

Looolooo

•2 months ago

23 Replies

Besremi question

Hi. Ive managed to mess up injection with Besremi and have had to use the second needle. Does anyone know if the pharmacy will be able to give me another...

Hi. Ive managed to mess up injection with Besremi and have had to use the second...

Scarlett500

•2 months ago

11 Replies

Optimizing Care: Integrative Oncology in Myeloproliferative Neoplasm

Very interesting article in Springer Nature regarding Integrative Onclology interverentions for MPNs. It is helpful to see a review of evidence that support...

Very interesting article in Springer Nature regarding Integrative Onclology inte...

hunter5582

•2 months ago

12 Replies

Diagnosed with Polythemia Vera in August 2024

I have had high white blood cells and high red blood cells since 2009. Finally found an awesome Oncologist Hematologist in 2016. She has been monitoring me...

I have had high white blood cells and high red blood cells since 2009. Finally f...

Froggy64

•2 months ago

1 Reply

Thyroid update

I posted on here recently about my enlarged thyroid which has unfortunately been confirmed as papillary thyroid cancer. I have surgery to remove total thyroid...

I posted on here recently about my enlarged thyroid which has unfortunately been...

Sorrell1

•2 months ago

11 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for February 2025

High platelets

medication

Bone marrow

Hydroxychloroquine & ET

Update

Absolute Eosinophil Count

Update on Doctor Visit

Bruising

Colitis and diverticulitis

ET Jak2

Pv ruxolitinib and ulcerative colitis

Mpn thrombocytosis

Mpn for life

Ongoing discomfort in arms

Effect of Interferon (Besremi) on cell count

Hydroxycarbamide

Transplant postponed

I can not stop feeling as though I were in the ring with Mine Type when I wake up in the morning

drop foot is a bitch

Today’s visit 😊 Besremi

Two studies of Rux, molecular response and outcomes

I have been on Hydoxurrea on and off for a year now and quit taking it about a month ago .

Trouble with Health Insurance

Experience with Eliquis/apixaban blood thinner

Update on Besremi combo with Jakafi

AB results. Less than 1% allele burden. Yay!

Besremi question

Optimizing Care: Integrative Oncology in Myeloproliferative Neoplasm

Diagnosed with Polythemia Vera in August 2024

Thyroid update

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