Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for September 2023

Trouble getting interferon?

I was not tolerating hydroxyurea after taking it for a few years. My MPN specialist is trying to switch me to Jakafi, but we are having a hard time keeping...

I was not tolerating hydroxyurea after taking it for a few years. My MPN special...

Owl-fan

•8 months ago

6 Replies

ET calr mutation and high ferritin

hello . .. recently diagnosed with ET .. calr mutation and prescribed Hydroxurea. Question to group … I also have high ferritin levels and require regular...

hello . .. recently diagnosed with ET .. calr mutation and prescribed Hydroxurea...

Threestreams

•8 months ago

8 Replies

Moving towards disease modification in polycythemia vera

In this review, we provide an overview of the current and evolving treatment landscape of PV and outline our vision for a patient-centered, phlebotomy-free,...

In this review, we provide an overview of the current and evolving treatment lan...

Manouche

•8 months ago

8 Replies

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Drop Hydroxy for Pegasus?

Hello everyoneI have ET, JAK2. I started on Pegasys , 45mg, six weeks ago and my consultant told me to continue with Hydroxy also, 500mg daily. After the first...

Hello everyoneI have ET, JAK2. I started on Pegasys , 45mg, six weeks ago and my...

Sivasi

•8 months ago

3 Replies

Covid Antivirals

Hi, if we get Covid is it still advisable for us to ask for the antivirals or is it so mild now that patients with blood cancers don’t need them? Suzy

Hi, if we get Covid is it still advisable for us to ask for the antivirals or is...

SDJD

•8 months ago

17 Replies

Polycythemia Vera Leg Cramps

I have PV for last 2 years and on Daily Multiple Hydroxycarbamide. Last 6 weeks get Leg Cramps in bed every night. Amy advice please as next Consultant Appt...

I have PV for last 2 years and on Daily Multiple Hydroxycarbamide. Last 6 weeks ...

Paraic2021

•8 months ago

35 Replies

The forgotten half million?

We went from Shielding to being High Risk to being Vulnerable. Are we now the Forgotten? I ask, because we were told that the Autumn vaccination programme was...

We went from Shielding to being High Risk to being Vulnerable. Are we now the Fo...

quanglewangle

•8 months ago

22 Replies

Bumps in the Road

Since my SCT I have had a very smooth journey. Yesterday however, I found out that a small amount of JAK2 was again detectable in my blood. Only 0.9% but...

Since my SCT I have had a very smooth journey. Yesterday however, I found out th...

Otterfield

•8 months ago

31 Replies

Hydroxyurea vs Besremi

Which drug is considered less toxic on the body - hydroxyurea or besremi? My MPN specialist put me on hydroxyurea a few years ago with the plan to switch over...

Which drug is considered less toxic on the body - hydroxyurea or besremi? My MP...

ERei

•8 months ago

80 Replies

Increased Symptoms

Hi All Have been on HU for 13 months (ET JAK2) which has worked well in reducing platelet count but I’ve started in last 6 weeks to experience horrible...

Hi All Have been on HU for 13 months (ET JAK2) which has worked well in reducin...

Paisley24

•8 months ago

10 Replies

wbc keeps climbing

hello friends, anyone have an idea why my wbc would keep climbing ? My doctor can’t figure it out either . End of August was in the 30’s, testing each week...

hello friends, anyone have an idea why my wbc would keep climbing ? My doctor ca...

Ggrana3192

•8 months ago

6 Replies

update on Azacitidine

I’m sure my local haematologist is thinking “be careful what you wish for”. In recent communications with Claire Harrison she tells me that the the fourth...

I’m sure my local haematologist is thinking “be careful what you wish for”. In r...

beetle

•8 months ago

10 Replies

2 months on pegasys - first follow up

40 y/o male ET - CALR type 1. Started pegasys 2 months ago and platelets were in the 900 range with 2x500mg HU daily. Platelets were 1.2m before starting HU....

40 y/o male ET - CALR type 1. Started pegasys 2 months ago and platelets were ...

dbus1417

•8 months ago

1 Reply

weight gain and hydrea

Hello I have been on 500 Hydrea 7 days a week for one year and then 500 for 5 days a week.weight gain also an issue. I am a runner and weight train faithfully...

Hello I have been on 500 Hydrea 7 days a week for one year and then 500 for 5 d...

Sunnylesser

•8 months ago

1 Reply

Hydroxycarbamide

Hello, I was diagnosed with ET and JAK2+ last week. Have started aspirin and given information re Hydroxy. I’m not sure whether I want to start Hydroxy as I...

Hello, I was diagnosed with ET and JAK2+ last week. Have started aspirin and gi...

Carol0925

•8 months ago

19 Replies

Saw my Haematologist yesterday

An update - I last saw my Haematologist, Dr Rebecca Cleary 2 months ago. My platelet numbers hadn’t changed so she said to maintain the lower dose of Hydrea...

An update - I last saw my Haematologist, Dr Rebecca Cleary 2 months ago. My p...

Pachena

•8 months ago

17 Replies

glutathione

hi everyone was wondering if anyone has ever taken glutathione read it’s anti inflammatory will ask my doctor but just wondering if anyone has info on this

hi everyone was wondering if anyone has ever taken glutathione read it’s anti in...

Nc3500

•8 months ago

7 Replies

Bloating and weight gain solutions anyone?

I read that hydroxycarbamide treatment is likely to produce a weight gain. Even though I am now on the smallest dose (500mg/day), dealing with a bloated tummy...

I read that hydroxycarbamide treatment is likely to produce a weight gain. Even ...

Hidden

•8 months ago

4 Replies

A bit disappointed

I’ve seen my haematologist today. My blood results were pretty good, all in normal levels except a bit anaemic, so the EPO dose has been increased. I’ve been...

I’ve seen my haematologist today. My blood results were pretty good, all in norm...

lizzziep

•8 months ago

12 Replies

Don’t know if it’s true …..

This is from a Facebook MF site. The person (in the USA I think) is saying a drug is being developed in Australia that will attack CALR and ASLX1 - I have no...

This is from a Facebook MF site. The person (in the USA I think) is saying a dru...

lizzziep

•8 months ago

6 Replies

Burn or ?

Strange . I've been pondering about this for a couple of days. It's on my arm . Second options welcome

Strange . I've been pondering about this for a couple of days. It's on my arm...

Mostew

•8 months ago

6 Replies

Mosaicc study ?

Afternoon, does anyone know if we can volunteer for the MOSAICC study, if we aren’t a patient at one of the 19 sites / hospital ? if so how ? or how do we...

Afternoon, does anyone know if we can volunteer for the MOSAICC study, if we are...

Cat_lady52

•8 months ago

2 Replies

Roxadustat and Revolade for MPN

Hello everyone, Have you ever had such medication experience？ Because I am currently in China, and the only Jak STAT inhibitor available on the market in...

Hello everyone, Have you ever had such medication experience？ Because I am cur...

merlisa

•8 months ago

1 Reply

1 Year on Besremi results

Just a quick post to show my results of taking Besremi for 1 year. I started at 100mcg and titrated up 50mcg each injection until reaching the max dose of...

Just a quick post to show my results of taking Besremi for 1 year. I started at ...

PupsBestFriends

•8 months ago

13 Replies

Do I declare Esophageal varices (no longer found) on travel insurance?

Hi All, I've booked a holiday for April next year and I'm looking for a bit of advice regarding my travel insurance. Due to having a blood clot in my...

Hi All, I've booked a holiday for April next year and I'm looking for a bit o...

MarkD6701

•8 months ago

8 Replies

very itchy from Jakafi

hello friends, I was wondering if anyone else who started Jakafi 10mg a day has a terrible itch all over legs and arms . I didn’t have this before starting and...

hello friends, I was wondering if anyone else who started Jakafi 10mg a day has ...

Ggrana3192

•8 months ago

9 Replies

FDA Approves Momelotinib for Myelofibrosis With Anemia

Very good news for people with MF with anemia in the USA. Hopefully, momelotinib will become available to all in this circumstance....

Very good news for people with MF with anemia in the USA. Hopefully, momelotini...

hunter5582

•8 months ago

5 Replies

Bone Marrow Fibrosis

I was diagnosed with ET in 2014 and after a recent bone marrow biopsy have been told I have Grade 2 fibrosis. Is this the same as Myleofibrosis?

I was diagnosed with ET in 2014 and after a recent bone marrow biopsy have been ...

Dooright

•8 months ago

4 Replies

Decisions, decisions

I was diagnosed with post ET MF earlier this year. After NGS I was told I had the ASLX1 gene, amongst others, doctor said I was high risk for transforming to...

I was diagnosed with post ET MF earlier this year. After NGS I was told I had th...

lizzziep

•8 months ago

21 Replies

MPN Awareness Day

As its Blood Cancer awareness month and today is MPN awareness day, does anyone know if there is anything to share on Facebook etc. From memory I think in the...

As its Blood Cancer awareness month and today is MPN awareness day, does anyone ...

mark382

•8 months ago

4 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for September 2023

Trouble getting interferon?

ET calr mutation and high ferritin

Moving towards disease modification in polycythemia vera

Drop Hydroxy for Pegasus?

Covid Antivirals

Polycythemia Vera Leg Cramps

The forgotten half million?

Bumps in the Road

Hydroxyurea vs Besremi

Increased Symptoms

wbc keeps climbing

update on Azacitidine

2 months on pegasys - first follow up

weight gain and hydrea

Hydroxycarbamide

Saw my Haematologist yesterday

glutathione

Bloating and weight gain solutions anyone?

A bit disappointed

Don’t know if it’s true …..

Burn or ?

Mosaicc study ?

Roxadustat and Revolade for MPN

1 Year on Besremi results

Do I declare Esophageal varices (no longer found) on travel insurance?

very itchy from Jakafi

FDA Approves Momelotinib for Myelofibrosis With Anemia

Bone Marrow Fibrosis

Decisions, decisions

MPN Awareness Day

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