Posts - MPN Voice | HealthUnlocked

MPN Voice

10,722 members • 14,842 posts

All posts for December 2018

Has anyone had a bone marrow transplant who has PV?

My husband has PV he was diagnosed in 2012. He's had a scan and his spleen has doubled in size. He's had to have a bone marrow biopsy. We have got the biopsy...

My husband has PV he was diagnosed in 2012. He's had a scan and his spleen has ...

•6 years ago

MF transplant update - days +41 to +80

Hi All, Unfortunately my MF transplant story has not turned out as positively as I was hoping when I wrote my first MF transplant post. Essentially the donor...

Hi All, Unfortunately my MF transplant story has not turned out as positively as...

•6 years ago

Blepharitis

Just back from seeing local pharmacist. For last few days I've had an itchy eyelid, the skin on my eyelid is flaky and occasionally sore. Pharmacist says it's...

Just back from seeing local pharmacist. For last few days I've had an itchy eyel...

•6 years ago

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Pegasys and low White cells

Hi everyone , I'm have frst time problem with Pegasys , and I'm thinking now stop Pegasys or going on low 45. I'm have PV. And I'm on venosection (12 in 15...

Hi everyone , I'm have frst time problem with Pegasys , and I'm thinking now st...

•6 years ago

Ropeg versus HU/BAT results after 3 years

This is very interesting summary of trial results after 3 years. (CHR is Complete Haematological Response.) “After 36 months of treatment Ropeginterferon...

This is very interesting summary of trial results after 3 years. (CHR is Complet...

•6 years ago

I am very confused.

I hope someone can provide me with some insight here because I think I’m going mad. I was diagnosed with ET 13 yrs ago however going back on old reports it...

I hope someone can provide me with some insight here because I think I’m going m...

•6 years ago

Universe don't like me lol

The universe has given me a grate present for Xmas.........our car just blew up and we have no funds for another car. Oh yay now web got to hitch 12km...

The universe has given me a grate present for Xmas.........our car just blew up ...

•6 years ago

Kids flu drops

Hi folks, tried to find the answers that were posted a little while ago regarding our children and grandchildren who are receiving the flu drops at school, my...

Hi folks, tried to find the answers that were posted a little while ago regardin...

•6 years ago

Ash Conference Review by Dr Mesa

http://mpnadvocacy.com/ash-updates-2018

http://mpnadvocacy.com/ash-updates-2018

•6 years ago

Abnormal bleeding ladies?

Hi all,this post is really for the more mature ladies out there. I'm 49 in less than 2 weeks and it was assumed by my gp that i had gone through an early...

Hi all,this post is really for the more mature ladies out there. I'm 49 in less ...

•6 years ago

Polycythemia and Jakafi

I have had ET for 13 years and then PV for a year. I am a 74 YO white male. I have been taking 1000mg of hydra every day for 14 years. I got some bad mouth...

I have had ET for 13 years and then PV for a year. I am a 74 YO white male. I ha...

•6 years ago

GvHD

This is very early days but could be a breakthrough https://www.eurekalert.org/pub_releases/2018-11/uoz-nst112818.php

This is very early days but could be a breakthrough https://www.eurekalert.org/...

•6 years ago

Homeopathy and MPN

Has anyone ever used homeopathy to address MPN ,s ? If so please narrate your experience......

Has anyone ever used homeopathy to address MPN ,s ? If so please narrate your ex...

•6 years ago

Ash Conference - Peg/Ruxo Combo for MF

Phase 1 (based on three levels of Peg/Ruxo dosage) concluded, now starting Phase 2 Blind Trial to optimise dosage levels. Early results appear encouraging...

Phase 1 (based on three levels of Peg/Ruxo dosage) concluded, now starting Phase...

•6 years ago

I'm new to Essential Thrombocythemia

Is there anyone out there to talk about ET experience, doubts and futures? I was diagnosed this summer but I've probably had it at least 2 years since...

Is there anyone out there to talk about ET experience, doubts and futures? I wa...

•6 years ago

Aspirin or ??

A few weeks ago my haematologist arranged an endoscopy and colonoscopy to see if they could find a bleed as I have been anaemic for some time. (such fun!)...

A few weeks ago my haematologist arranged an endoscopy and colonoscopy to see if...

•6 years ago

PV classification

Does anyone know when World Health Organisation classified PV as cancer - BUPA are still saying it is not!

Does anyone know when World Health Organisation classified PV as cancer - BUPA a...

•6 years ago

Bone broth

Has anyone heard about the benefits of bone broth

Has anyone heard about the benefits of bone broth

•6 years ago

Does Hydroxurea give you nightmares?

Hello Lovely members, I have ET ( JAK2 ), aged 56 and for 9 years just took I Cartia per day (1/2 aspirin) as level was around 900. This year, I had an...

Hello Lovely members, I have ET ( JAK2 ), aged 56 and for 9 years just took I C...

•6 years ago

Statins and PV

Hi, The ASH 2018 conference is underway in San Diego and there are number of MPN related papers that sound very interesting but one in particular caught my...

Hi, The ASH 2018 conference is underway in San Diego and there are number of MP...

•6 years ago

New mpn

Hi diagnosed with ET 3 years ago age 28 been stable since now 31 and platelets high at 1560 started interferon last week last check platelets dropped to 1200!!...

Hi diagnosed with ET 3 years ago age 28 been stable since now 31 and platelets h...

•6 years ago

Is a BMB always the only way to diagnose an MPN?

I have been seeing a heamotoligist at the hospital for over a year now, and still have no diagnosis. I have had a BMB in July which was negative for any MPN....

I have been seeing a heamotoligist at the hospital for over a year now, and stil...

•6 years ago

PV and taking Anastrozole

Hello all I’m wondering if anyone in this lovely community has had the experience of taking Anastrozole (an immunotherapy for breast cancer) when they have...

Hello all I’m wondering if anyone in this lovely community has had the experien...

•6 years ago

Pegasys

Hi everyone I saw my haematologist yesterday for my ET. Platelet count is gradually going up. He has said in a few months I may need to start treatment other...

Hi everyone I saw my haematologist yesterday for my ET. Platelet count is gradua...

•6 years ago

Hydroxy with ET, CALR+

I was diagnosed with ET back in 2012 (I was 55). I had high platelet counts (700s). I was immediately put on Hydroxy and the only side effect I've ever had...

I was diagnosed with ET back in 2012 (I was 55). I had high platelet counts (...

•6 years ago

What a year - and some good news to end it

Hi all, Thought I would share some positive news from me after a pretty crazy year - if nothing else to get my head around it. Back in January I was...

Hi all, Thought I would share some positive news from me after a pretty crazy y...

•6 years ago

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