Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for January 2019

Critical Illness cover and Polycythemia Vera

My husband was diagnosed with PV a year ago. I glanced at the Aviva policy at the time a year ago and saw that PV was classed as pre-malignant. Our policy was...

My husband was diagnosed with PV a year ago. I glanced at the Aviva policy at th...

TheFog

•5 years ago

20 Replies

Vertigo

Any body know how to stop episodes of vertigo I'm having really bad bouts of them thank you

Any body know how to stop episodes of vertigo I'm having really bad bouts of the...

cagsym

•5 years ago

11 Replies

No curcumin while on hydroxy?

ET, taking 1000 mg hydroxy per day and Dr. just told me not to take a curcumin supplement as "it will affect the metabolism of the hydroxy". Has anyone else...

ET, taking 1000 mg hydroxy per day and Dr. just told me not to take a curcumin s...

h2ogal

•5 years ago

23 Replies

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Bone marrow biopsy

I had a bone marrow biopsy 2 days ago,the procedure for me was surprisingly easy, I was told by the nurse that she was struggling to get enough sample, but she...

I had a bone marrow biopsy 2 days ago,the procedure for me was surprisingly easy...

trotty100

•5 years ago

17 Replies

Same sample of bone marrow, received different opinion

Hi all As early i had said that i have all test negative and bone marrow was normocellular... I just checked bone marrow block with another hematologist and he...

Hi all As early i had said that i have all test negative and bone marrow was nor...

Vigiindia

•5 years ago

7 Replies

Global Survey of MPN Patients’ Needs

The MPN Advocates Network is conducting a global survey of MPN Patients' needs and are inviting you to take part. We want to understand how MPN patients are...

The MPN Advocates Network is conducting a global survey of MPN Patients' needs a...

Mazcd

Partner•5 years ago

2 Replies

Pegasys!!

Hi just a little update I have triple negative ET I think no BMB not needed my professor states, am 31 and was diagnosed 3 years ago one of the young unlucky...

Hi just a little update I have triple negative ET I think no BMB not needed my ...

Samlowery17

•5 years ago

12 Replies

Confusing results

Hi everyone, Before testing i have HB 20.7(17) PCV-57(52) RBC-5.85(5.5) Platelates and WBC normal Now i have all test results in my hand jack2v617f-NEGATIVE...

Hi everyone, Before testing i have HB 20.7(17) PCV-57(52) RBC-5.85(5.5) Platelat...

Vigiindia

•5 years ago

8 Replies

Weak lower legs and thighs

Does anyone suffer from weakness in their legs. I can barely walk. I have ET/CALR and my fatigue is unbearable. Have an appt. at CFS Clinic in Bristol - my...

Does anyone suffer from weakness in their legs. I can barely walk. I have ET/...

Garden987

•5 years ago

9 Replies

Thanks

Thank you

Shelly1960

•5 years ago

Be the first to reply

Trying not to Panic about the possibility of MPN

A month ago I went to the Er with dizziness and chest pain. I thought I was having a heart attack. Full work up done at Er. Heart was ok. Labs were ok minus...

A month ago I went to the Er with dizziness and chest pain. I thought I was havi...

Hidden

•5 years ago

9 Replies

Thrombocytosis/ mild leucocytosis

Hi all, This is my first post here, as I'm new to this. Feeling quite stressed and somewhat confused, (despite being reasonably well informed re: my...

Hi all, This is my first post here, as I'm new to this. Feeling quite stressed ...

Hope2-Optimism

•5 years ago

10 Replies

Short videos re exciting advances from Ash 2018 re ET, PV and MF

Very useful review (and expert!) of the Ash Conference by Prof Harrison. She really is very impressive....

Very useful review (and expert!) of the Ash Conference by Prof Harrison. She rea...

Paul123456

•5 years ago

5 Replies

Azacitidine

anyone had Ruxo with Azacitidine? I have high risk MF which is unstable and tending towards AMF. Azacitidine sounds unpleasant and I'm not convinced that it's...

anyone had Ruxo with Azacitidine? I have high risk MF which is unstable and tend...

jane13

•5 years ago

31 Replies

I’m new and so pleased that this organisation exists.

I had my diagnosis of thrombocytaemia on 1 Aug 2018 following high white (platelet) count on a routine blood test I was prescribed hydroxycarbamide 100 mugs...

I had my diagnosis of thrombocytaemia on 1 Aug 2018 following high white (platel...

trotty100

•5 years ago

10 Replies

Stem cell transplant appointment for post PV MF

My husband met with the transplant team yesterday. They went through pros and cons of a transplant. The only option offered to him for his post PVMF was...

My husband met with the transplant team yesterday. They went through pros and co...

tracey13

•5 years ago

9 Replies

Back Pain Kidney Area

Hi, folks, Happy New Year. I’ve had a really awful back ache, for 6 weeks, roughly by both kidneys, I assume its nothing to do with my ET, I have MPL/ET...

Hi, folks, Happy New Year. I’ve had a really awful back ache, for 6 weeks, rough...

Raphael_UK

•5 years ago

17 Replies

MPN Voice Nottingham Support Group 2019 meeting dates and CHANGE OF VENUE

The MPN Voice Nottingham Support Group has a CHANGE OF VENUE until further notice, the meetings will be held in: Clinical Haematology, The Exercise...

The MPN Voice Nottingham Support Group has a CHANGE OF VENUE until further notic...

Mazcd

Partner•5 years ago

10 Replies

Denied coverage on "Cancer" insurance policy

Hi All, I have ET. I was diagnosed a while ago. I had a "Big" company cancer policy which was to help if I got cancer and couldn't work. I was DENIED coverage...

Hi All, I have ET. I was diagnosed a while ago. I had a "Big" company cancer pol...

tapkeyes

•5 years ago

12 Replies

MPN Chronicles Podcast - Episode 04, First Hematologist appointment. Always Ask your Doctor for your CBC and your test results.

Just a bit more about my personal story, hopefully you will find a tip or relate to the situation.......

Just a bit more about my personal story, hopefully you will find a tip or relate...

PVReporter

•5 years ago

2 Replies

ET but with falling platelet counts

Hi All, I went for my annual blood test and found my platelet count had fallen from 800 to 250. Doc ordered an ultrasound and my spleen has grown to 18cm up...

Hi All, I went for my annual blood test and found my platelet count had fallen f...

Alired

•5 years ago

8 Replies

Total Body Irradiation Dose Escalation Decreases Risk Of Progression And Graft Rejection

Promising trial results reducing risk of GVHD and progression. “The primary endpoint was day 200 hematopoietic cell transplant failure, with the objective of...

Promising trial results reducing risk of GVHD and progression. “The primary end...

Paul123456

•5 years ago

1 Reply

Myelofibrosis and using medical CBD/ marijuana.

I was diagnosed with Myelofibrosis in 2015 I have both JAK viruses. Gulf War Veteran struggling with PTSD/Anxiety, insomnia and severe arthritis. Got really...

I was diagnosed with Myelofibrosis in 2015 I have both JAK viruses. Gulf War Ve...

Boriqua

•5 years ago

23 Replies

Second time with a cold!

Hi, I just wanted to write about what is happening to me this winter. End November beginning of December I had this terrible cold that lasted long. Now...

Hi, I just wanted to write about what is happening to me this winter. End Novemb...

Kelly2

•5 years ago

13 Replies

Meditation treatment

I read on one of the posts that MPN can offer Meditation disks/Material sorry can't find original posts. Could you give me any information and how to...

I read on one of the posts that MPN can offer Meditation disks/Material sorry...

Garden987

•5 years ago

3 Replies

Ischemic Colitis caused by ET

After having ET for approximately 8 years, last month I ended up with ischemic colitis. A CAT scan and Endoscopy and Colonoscopy (biopsy) determined that...

After having ET for approximately 8 years, last month I ended up with ischemic c...

MacDWild

•5 years ago

9 Replies

ET - increased risk of dementia?

Hi all When I was diagnosed with ET my biggest concern was that I may have an increased risk of dementia and in particular vascular dementia. My grandfather...

Hi all When I was diagnosed with ET my biggest concern was that I may have an in...

Lina_uk

•5 years ago

12 Replies

Just joining chat group

I was diagnosed with Polycythemia Vera last week after lots and lots of blood tests and a CT scan. Fortunately, no enlarged spleen or problems with any of my...

I was diagnosed with Polycythemia Vera last week after lots and lots of blood te...

follies

•5 years ago

9 Replies

New research on exosomes

New research in exosomes targeted cancer cells - Does anyone know if this research would help MPN sufferers.

New research in exosomes targeted cancer cells - Does anyone know if this resear...

Raphael_UK

•5 years ago

2 Replies

Anyone taking a BET inhibitor?

Have secondary MF with mega splenism though it gives me little to no problem apart from making tying shoes up without feeling SOB. Have had BET inhibitor trial...

Have secondary MF with mega splenism though it gives me little to no problem apa...

skodaguy

•5 years ago

2 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for January 2019

Critical Illness cover and Polycythemia Vera

Vertigo

No curcumin while on hydroxy?

Bone marrow biopsy

Same sample of bone marrow, received different opinion

Global Survey of MPN Patients’ Needs

Pegasys!!

Confusing results

Weak lower legs and thighs

Thanks

Trying not to Panic about the possibility of MPN

Thrombocytosis/ mild leucocytosis

Short videos re exciting advances from Ash 2018 re ET, PV and MF

Azacitidine

I’m new and so pleased that this organisation exists.

Stem cell transplant appointment for post PV MF

Back Pain Kidney Area

MPN Voice Nottingham Support Group 2019 meeting dates and CHANGE OF VENUE

Denied coverage on "Cancer" insurance policy

MPN Chronicles Podcast - Episode 04, First Hematologist appointment. Always Ask your Doctor for your CBC and your test results.

ET but with falling platelet counts

Total Body Irradiation Dose Escalation Decreases Risk Of Progression And Graft Rejection

Myelofibrosis and using medical CBD/ marijuana.

Second time with a cold!

Meditation treatment

Ischemic Colitis caused by ET

ET - increased risk of dementia?

Just joining chat group

New research on exosomes

Anyone taking a BET inhibitor?

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