Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for July 2023

rux plus epo: any info as to effects on skin cancers?

Hi I have MF, and tho Ive been a member of this group for about 6 yrs haven’t posted for a while. I’m now being treated at the Marsden in Sutton ( BTW,...

Hi I have MF, and tho Ive been a member of this group for about 6 yrs haven’t p...

Rachelthepotter

•10 months ago

11 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

•10 months ago

18 Replies

EPO trending high

I got EPO result recently. As seen here it started slightly low at Dx but now is over range. I can't find much relevant info on high EPO as low is usually...

I got EPO result recently. As seen here it started slightly low at Dx but now i...

EPguy

•10 months ago

4 Replies

Want to take advantage of all our features? Just log in!

My VAF progress IFN to Rux

I recently got a 4th VAF update. 7% Jak 2 allele from 14% at Dx. The plot here shows the progress as it relates to my therapies. As seen here it continues...

I recently got a 4th VAF update. 7% Jak 2 allele from 14% at Dx. The plot here ...

EPguy

•10 months ago

13 Replies

Vitamin D3 and K2

Is it ok to take vit d3 and k2 with pv jack 2 positive, I am bruising so easily and I read the 2 vitamins can help with blood clotting, My hematologist has...

Is it ok to take vit d3 and k2 with pv jack 2 positive, I am bruising so easily ...

Chez1947

•10 months ago

15 Replies

Quarterly follow up - switching to interferon

hello all went to my quarterly check up today after being on HU for 3-4 months and the results were less than what we’d hoped for. My platelets came down...

hello all went to my quarterly check up today after being on HU for 3-4 months...

dbus1417

•10 months ago

7 Replies

FDA Grants Fast Track Designation to Selinexor for Myelofibrosis Treatment

»Fast track designation for selinexor highlights its potential to address the unmet medical need in myelofibrosis, an important acknowledgement as we continue...

»Fast track designation for selinexor highlights its potential to address the u...

Manouche

•10 months ago

Be the first to reply

Bruising

Hello all- I have been on Hydroxyurea for my ET for 3 years and have recently started bruising quite a bit even though I have been on Plavix and aspirin for 3...

Hello all- I have been on Hydroxyurea for my ET for 3 years and have recently st...

Auggie17

•10 months ago

21 Replies

Pegasys and periods and trouble sleeping

Hello to all the ladies out there, Sorry gents, this is a bit of a girly post! Of the ladies on here who are on Pegasys and are of child bearing age, do any...

Hello to all the ladies out there, Sorry gents, this is a bit of a girly post! ...

NCB1983

•10 months ago

18 Replies

Hydroxyurea and Anagrelide

hello everyone I posted a few weeks ago about my on going battle with fatigue. My haematologist has suggested switching medication from Hydroxyurea to...

hello everyone I posted a few weeks ago about my on going battle with fatigue. ...

YBSx

•10 months ago

10 Replies

Appointments

Hi all Hope all good, Had my 7th covid booster all gurd, had two 4 weekly appointments platelets count in 700 now, Dr going wait first tell I've had my...

Hi all Hope all good, Had my 7th covid booster all gurd, had two 4 weekly appo...

Jody00

•10 months ago

6 Replies

Stress and depression

Afternoon all, I struggle mentally and physically for the last year. The year before that I was diagnosed with a Brain Tumour and Essential thrombycythemia....

Afternoon all, I struggle mentally and physically for the last year. The year be...

Smudger0122

•10 months ago

39 Replies

hydroxycarbamide v Anagrelide

hi I’ve been on Hydroxycarbamide for nearly a year and for the past two months have had mouth ulcers. I drink plenty of water. Appointment with Pharmacist and...

hi I’ve been on Hydroxycarbamide for nearly a year and for the past two months h...

Hannah2308

•10 months ago

50 Replies

New ET diagnosis

Hello…..Was given my diagnosis a week ago today ..still getting my head around it. No obvious symptoms besides now I attribute it most likely to ET…...

Hello…..Was given my diagnosis a week ago today ..still getting my head around i...

Stargaye

•10 months ago

40 Replies

hot humid weather sweating

I have ET JAK2 positive. my medication is Aspirin 75mgs daily. im 64z I’m currently in southern Spain. It’s hot, and very humid (75 to 90%) I sweat, a...

I have ET JAK2 positive. my medication is Aspirin 75mgs daily. im 64z I’m cur...

Peachjoy

•10 months ago

2 Replies

Iron Deficiency

Are many people diagnosed with PV Iron deficient at the time of diagnosis? I’ve read on the internet that almost everyone with PV is iron deficient at time of...

Are many people diagnosed with PV Iron deficient at the time of diagnosis? I’ve ...

Hereforalongtime

•10 months ago

19 Replies

Good day to everyone,

After being on this site for several months now, I have learned so much about my JAK2+ ET and medications. I laud every one who shares their experiences so we...

After being on this site for several months now, I have learned so much about my...

Plate

•10 months ago

4 Replies

Hydroxycarbamide sight

does anyone know if HU can affect vision ? If so, in what way?

130396

•10 months ago

11 Replies

Ruxolitinib

Hi all, I have PV and AB is high , around 81% , spleen size slightly increased but if I didn’t know I have PV I would think I am the healthiest person around...

Hi all, I have PV and AB is high , around 81% , spleen size slightly increased b...

Ameliav

•10 months ago

25 Replies

AKG and it’s anti platelet functions also it’s TET 2 effect.

You may find this interesting https://ashpublications.org/blood/article/140/Supplement%201/1095/492376/Transcriptional-and-Metabolic-Profiling-Reveals

You may find this interesting https://ashpublications.org/blood/article/140/S...

AnBee

•10 months ago

4 Replies

Clot symptoms

Hi everyone, I wanted to follow up on a post which I found really helpful from ETinNYC a few days ago regarding blood clots and whether fellow MPNers had...

Hi everyone, I wanted to follow up on a post which I found really helpful from E...

Lola367

•10 months ago

9 Replies

Confused - High Platelet Count - Risk of embolisms or bleeding.

I have heard from my doctor I am more at risk for embolisms with high platelet count, but I have also read and heard there is more of a risk for bleeding....

I have heard from my doctor I am more at risk for embolisms with high platelet c...

Buggerbear

•10 months ago

8 Replies

Is peg interferon always slow to reduce platelet count?

Morning everyone , I wondered if anyone has experienced a slow journey in platelet reduction on peg interferon alpha like me….. I’m 56, fit and healthy with...

Morning everyone , I wondered if anyone has experienced a slow journey in platel...

Maxamber

•10 months ago

40 Replies

why do we have plastic around our fruit and veg!!!

Has anyone watched ‘Celebrity save our Sperm’ channel 4 ? If not I thoroughly recommend it it. After reading Louprov ‘s ( sorry if misspelt)post on what to...

Has anyone watched ‘Celebrity save our Sperm’ channel 4 ? If not I thoroughly ...

Wyebird

•10 months ago

6 Replies

Further to my post on swallowing difficulty

I can see from what I said in my previous post that I gave the impression I was only having difficulty with swallowing the hydroxy capsules, but in actual fact...

I can see from what I said in my previous post that I gave the impression I was ...

Jelbea

•10 months ago

15 Replies

Surgery with an MPN ...XXX

I just wanted to write this post to help reassure any of you that may need surgery. I've had other health problems for quite some time now, and really needed a...

I just wanted to write this post to help reassure any of you that may need surge...

RCBr

•10 months ago

4 Replies

A New Study on Lowering Inflammation

A new study in mice shows that regular exercise reprograms macrophages, altering how they sense and respond to pathogens and reducing inflammation. Of...

A new study in mice shows that regular exercise reprograms macrophages, altering...

Elizka

•10 months ago

3 Replies

diagnosis process

Hi All. I’m new and in process of tests with my GP in Iowa USA. I’ve been having SOB and faint feeling for several months. I sleep a lot. I have chest pain and...

Hi All. I’m new and in process of tests with my GP in Iowa USA. I’ve been having...

Newbieonetwo

•10 months ago

9 Replies

Support

I am recently diagnosed with ET and was wondering where my wife could get support? Just being able to talk to other family members who are helping a loved one...

I am recently diagnosed with ET and was wondering where my wife could get suppor...

Presley1935

•10 months ago

10 Replies

Brilliant!

Hi everyone. Anyone out there who knows me (few probably on this website! ) knows that over the years I ve banged on at a few forums about the food we eat. I...

Hi everyone. Anyone out there who knows me (few probably on this website! ) kno...

Loubprv

Volunteer•10 months ago

16 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for July 2023

rux plus epo: any info as to effects on skin cancers?

Spleen embolisation gone wrong

EPO trending high

My VAF progress IFN to Rux

Vitamin D3 and K2

Quarterly follow up - switching to interferon

FDA Grants Fast Track Designation to Selinexor for Myelofibrosis Treatment

Bruising

Pegasys and periods and trouble sleeping

Hydroxyurea and Anagrelide

Appointments

Stress and depression

hydroxycarbamide v Anagrelide

New ET diagnosis

hot humid weather sweating

Iron Deficiency

Good day to everyone,

Hydroxycarbamide sight

Ruxolitinib

AKG and it’s anti platelet functions also it’s TET 2 effect.

Clot symptoms

Confused - High Platelet Count - Risk of embolisms or bleeding.

Is peg interferon always slow to reduce platelet count?

why do we have plastic around our fruit and veg!!!

Further to my post on swallowing difficulty

Surgery with an MPN ...XXX

A New Study on Lowering Inflammation

diagnosis process

Support

Brilliant!

Search posts

Pinned Posts

Latest poll

What age were you when your MPN was diagnosed?

Topics

Archive