Posts - MPN Voice | HealthUnlocked

MPN Voice

10,438 members • 14,387 posts

All posts for February 2024

Red spots palm of hands

I have PV since October 2023. I a, on Hydroxyurea 500 7 pills week to 9 per week. I am having red marks on palms of hands and they hurt when bend hand. I...

I have PV since October 2023. I a, on Hydroxyurea 500 7 pills week to 9 per wee...

Rainyday22

•2 months ago

1 Reply

Unknown

I am Amanda aged 47 I was diagnosed 2 years ago with Polycemia Vera and Jak 2 positive. And I am still unaware of things like insurance cover ! Meds I think...

I am Amanda aged 47 I was diagnosed 2 years ago with Polycemia Vera and Jak 2 po...

Mandz12

•2 months ago

20 Replies

The prognostic impact of non-driver gene mutations and variant allele frequency in primary myelofibrosis.

The prognostic impact of non-driver gene mutations and variant allele frequency in primary myelofibrosis. To the Editor: Myelofibrosis is a...

The prognostic impact of non-driver gene mutations and variant allele frequency ...

PhysAssist

•2 months ago

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Differences in Clinical Outcomes Between Hydroxyurea-Resistant and-Intolerant Polycythemia Vera Patients

Differences in Clinical Outcomes Between Hydroxyurea-Resistant and -Intolerant Polycythemia Vera Patients ABSTRACT Background: Previous studies have...

Differences in Clinical Outcomes Between Hydroxyurea-Resistant and -Intolerant P...

PhysAssist

•2 months ago

3 Replies

Besremi

Is Besremi used for ET or just PV? I was thought to have PV due to being Jak2+ & having elevated hemoglobin/hematocrit levels. When I had a bone marrow...

Is Besremi used for ET or just PV? I was thought to have PV due to being Jak2+ ...

ERei

•2 months ago

10 Replies

SCT starts next week

Had my last meeting yesterday with consultant and sign all the forms etc. All the organ function tests were ok with no problems and my spleen is only just...

Had my last meeting yesterday with consultant and sign all the forms etc. All th...

Flyingsteamer

•2 months ago

30 Replies

Just wanted to share my Primary Myelofibrosis journey so far…….

Hi all, My diagnosis is Primary Myelofibrosis +Jak-2 &V617F mutation which was in August 2022. This was found after several visits to GP for chest infections...

Hi all, My diagnosis is Primary Myelofibrosis +Jak-2 &V617F mutation which was ...

LFCLove

•2 months ago

25 Replies

Peg Interferon Journey

Just to encourage those starting on Peg Interferon to be patient & to be your own advocate on your treatment. I started on Peg 2 years ago after asking for...

Just to encourage those starting on Peg Interferon to be patient & to be your ow...

Exeter21

•2 months ago

24 Replies

How much daily water should I drink on Pegasys?

Hi everyone I will be starting Pegasys in 10 days time and see that the MPN Voice leaflet says to drink 3 litres of water daily. I do drink a lot of water but...

Hi everyone I will be starting Pegasys in 10 days time and see that the MPN Voic...

Na56

•2 months ago

17 Replies

Scientists devise novel strategy to seek and destroy leukemia stem cells

** Scientists at City of Hope, one of the largest cancer research and treatment organizations in the United States, have devised an innovative approach to...

** Scientists at City of Hope, one of the largest cancer research and treatment...

PhysAssist

•2 months ago

6 Replies

BESREMi now recommended as a Preferred First-line Cytoreductive Therapy for PV in Updated NCCN Clinical Practice Guidelines in Oncology

« The National Comprehensive Cancer Network Clinical Practice Guidelines in Oncology (NCCN Guidelines®) have recently been updated to include ropeginterferon...

« The National Comprehensive Cancer Network Clinical Practice Guidelines in Onc...

Manouche

•2 months ago

7 Replies

HU and Osteoblasts

Hi Group, I have ET Jak2 + and am 64yrs old My bone mass has been declining faster than I would have expected given my level of activity, genetic history and...

Hi Group, I have ET Jak2 + and am 64yrs old My bone mass has been declining fa...

nightshadow

•2 months ago

2 Replies

ET and Eylea injections for macular degeneration

I have been treated for ET for almost three years very successfully with 500 mg. daily hydroxycarbamide, 20 mg daily Rivaroxaban and 75 mg aspirin on some days...

I have been treated for ET for almost three years very successfully with 500 mg....

Jelbea

•2 months ago

4 Replies

Hydroxyurea Side Effects

66 year old male diagnosed with PV last fall (October) put on Hydroxyurea oral, 500 mg/day. I have Hashimoto's thryoiditis (auto-immune condition...

66 year old male diagnosed with PV last fall (October) put on Hydroxyurea oral...

hsdale3

•2 months ago

21 Replies

following last post

Objective: Platelet activation and aggregation play major role in the pathophysiology of atherothrombosis. Mean platelet volume (MPV), a determinant of...

Objective: Platelet activation and aggregation play major role in the pathophysi...

Mostew

•2 months ago

2 Replies

Any connection ?

I'm wondering if there is a connection between platelets and underactive thyroid / hashimoto. Don't mean thyroid is causing platelets to be high ,but if...

I'm wondering if there is a connection between platelets and underactive thyr...

Mostew

•2 months ago

10 Replies

Thanks

Thanks for all your good wishes after I posted my SCT update.

SRH55

•2 months ago

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Body Acne

I was diagnosed with PV in 2010. In 2012, I started getting acne on one side of my torso. Over the years, it spread to the other side and front of my torso....

I was diagnosed with PV in 2010. In 2012, I started getting acne on one side of ...

marlenablue

•2 months ago

3 Replies

Recently Diagnosed

Hi There, I have recently been diagnosed with PV, I am JAk2 V617F positive 61% and my blood cells are all within normal levels, even my hematocrit. 3 years...

Hi There, I have recently been diagnosed with PV, I am JAk2 V617F positive 61%...

DarcyShepp

•2 months ago

15 Replies

Pegasys - Medicare Payment Options and Dosing Schedule

Hi Everyone, I live in Connecticut in the US , have PV (exxon 12 mutation) and have been on pegasys for about 3 years. I now am on an every other week dose...

Hi Everyone, I live in Connecticut in the US , have PV (exxon 12 mutation) and...

gvibes

•2 months ago

11 Replies

Best treatment for Post PV/MF ?

I'm wondering Which medication is more effective for post pv/mf. Ruxolitinib or interferon? I was diagnosed with pv in 2017. 2 years of hydroxy, then...

I'm wondering Which medication is more effective for post pv/mf. Ruxolitinib or ...

MCW22

•2 months ago

21 Replies

A poem to lift our spirits

Yaffle is a loud laughing call from a green woodpecker

Mostew

•2 months ago

4 Replies

Tet2 allele frequency

Hi Folks, after requesting my Tet2 VAF recently (diagnosed with ET 2020) my BMB was re analysed from 2020 and came out at 32%....when reading the letter I...

Hi Folks, after requesting my Tet2 VAF recently (diagnosed with ET 2020) my BMB...

Janis12

•2 months ago

8 Replies

SCT update

I just wanted to give you an update following my SCT. I am now on day +202, it is a slow recovery, which I knew it would be, but I am definitely having more...

I just wanted to give you an update following my SCT. I am now on day +202, it...

SRH55

•2 months ago

31 Replies

Rusfertide, a Hepcidin Mimetic, for Control of Erythrocytosis in Polycythemia Vera

Clinical trial news. https://www.nejm.org/doi/full/10.1056/NEJMoa2308809

Clinical trial news. https://www.nejm.org/doi/full/10.1056/NEJMoa2308809 ...

Lena70

•2 months ago

1 Reply

Masked pv?

Hi all, latest appointment today with my local hospital and back to the revolving door of doctors.The good news platelets still great 298 liver 's be...

Hi all, latest appointment today with my local hospital and back to the revolvin...

Spanelmad

•2 months ago

5 Replies

Jak 2 diagnosis

Hi, has anyone had a successful claim through Scottish widows for this? I was diagnosed back in December and have been told it is going to a senior doctor at...

Hi, has anyone had a successful claim through Scottish widows for this? I was d...

JackieMusic

•2 months ago

24 Replies

haemoglobin back to normal range?

after struggling with my Primary Myelofibrosis for 3 years(lots of downs, symptoms, massive splenomegaly, totally blocked portal veins, on and off rux until I...

after struggling with my Primary Myelofibrosis for 3 years(lots of downs, sympto...

Dan39

•2 months ago

5 Replies

Dental Issues with Hydroxy Use?

I have been taking hydroxyurea (500mg 3 times a week) since November 2023. I have recently heard that it can cause dental issues such as bleeding/ receding...

I have been taking hydroxyurea (500mg 3 times a week) since November 2023. I hav...

FlannelPJs

•2 months ago

14 Replies

Allele Burden

Quick update My interferon is currently 135 per week, its been extended from 7 to 10 days, numbers are all ok HCT 0.455, not concerned. My Allele Burden...

Quick update My interferon is currently 135 per week, its been extended from ...

shiftzz

•2 months ago

10 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for February 2024

Red spots palm of hands

Unknown

The prognostic impact of non-driver gene mutations and variant allele frequency in primary myelofibrosis.

Differences in Clinical Outcomes Between Hydroxyurea-Resistant and-Intolerant Polycythemia Vera Patients

Besremi

SCT starts next week

Just wanted to share my Primary Myelofibrosis journey so far…….

Peg Interferon Journey

How much daily water should I drink on Pegasys?

Scientists devise novel strategy to seek and destroy leukemia stem cells

BESREMi now recommended as a Preferred First-line Cytoreductive Therapy for PV in Updated NCCN Clinical Practice Guidelines in Oncology

HU and Osteoblasts

ET and Eylea injections for macular degeneration

Hydroxyurea Side Effects

following last post

Any connection ?

Thanks

Body Acne

Recently Diagnosed

Pegasys - Medicare Payment Options and Dosing Schedule

Best treatment for Post PV/MF ?

A poem to lift our spirits

Tet2 allele frequency

SCT update

Rusfertide, a Hepcidin Mimetic, for Control of Erythrocytosis in Polycythemia Vera

Masked pv?

Jak 2 diagnosis

haemoglobin back to normal range?

Dental Issues with Hydroxy Use?

Allele Burden

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