Posts - MPN Voice | HealthUnlocked

MPN Voice

10,520 members • 14,525 posts

All posts for January 2019

Reduction of allele burden on Pegasys?

I had an appointment with my haematologist yesterday and was a little disappointed to learn that my allele burden was unchanged (in fact even a little higher)...

I had an appointment with my haematologist yesterday and was a little disappoint...

Marossi

•5 years ago

11 Replies

I need your help again

Hi my MPN family. I had an appointment with my Haemo Consultant 2 days ago and I told her of the event about 6 weeks ago when I started having problems with...

Hi my MPN family. I had an appointment with my Haemo Consultant 2 days ago and ...

jillydabrat

•5 years ago

27 Replies

Secondary Polycythemia

Hi Everyone, JACK2 V617F test is negative and doctor advice to perform jack2exon12.After first blood removal my Hem Perform CBC which shows hb and hct...

Hi Everyone, JACK2 V617F test is negative and doctor advice to perform jack2exon...

Vigiindia

•5 years ago

4 Replies

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ET, HYDROXY AND MELANOMA

I turn 60 in September, ET jak2 positive. My consultant today said, they will be looking to start me on Hydroxy in September. Having had a malignant melanoma...

I turn 60 in September, ET jak2 positive. My consultant today said, they will b...

Tigger59

•5 years ago

23 Replies

PCV lowered without v-sect or drugs?

Hi all, this is essentially a positive post in that I had bloods back today to find that my PCV has gone from 0.41 (I don't feel great when it gets to 0.41)...

Hi all, this is essentially a positive post in that I had bloods back today to ...

johoho

•5 years ago

5 Replies

Raising funds across the Sahara.

Good morning Last year I posted a message to say that my youngest daughter would run six marathons in six days ,self supported across the Sahara desert to...

Good morning Last year I posted a message to say that my youngest daughter woul...

kevinbros

•5 years ago

8 Replies

Looking for feedback- staring Pegasy?

Hello, Im a 45yo guy that tries to be active despite fatigue and has a job in a warehouse. Ive been diagnosed with ET about 9 years ago. My platelets average...

Hello, Im a 45yo guy that tries to be active despite fatigue and has a job in a ...

BloodZero

•5 years ago

26 Replies

Polycythemia

Hi My wife is 30 and we just had our first baby about 5 months ago now . She been have light bleeding for 3 months now . The dr said it’s normal until the...

Hi My wife is 30 and we just had our first baby about 5 months ago now . She b...

Finn7ao

•5 years ago

2 Replies

Concerned after haemo. consultation

I spoke to my haemo. Yesterday and she said that HU appears detrimental to my bone maaqrrow. To stop Hydroxy for a week. White cells are high. She thinks...

I spoke to my haemo. Yesterday and she said that HU appears detrimental to my b...

Garden987

•5 years ago

17 Replies

Frustrated!

Hi, sorry this is a bit of a rant! I am looking for a little advice. I have ET, triple negative. I was diagnosed at 17 so have been living with this for 25...

Hi, sorry this is a bit of a rant! I am looking for a little advice. I have ET, ...

mac77

•5 years ago

30 Replies

Hereditary??

Hi everyone. Was diagnosed with ET 13 years ago...am approaching 40 this year(!) And have an 8 year old daughter.....just wondering if anyone knows if she...

Hi everyone. Was diagnosed with ET 13 years ago...am approaching 40 this year(!)...

GK40

•5 years ago

8 Replies

Et & Proteinuria?

Anyone with ET experiencing Proteinuria?

BloodZero

•5 years ago

Be the first to reply

Appointments!

In January I have appointments for breast screening, audiology, ophthalmology, stroke clinic, dentist, urology, haematology and that does not include the...

In January I have appointments for breast screening, audiology, ophthalmology, s...

beetle

•5 years ago

7 Replies

Sport in polycythemia

Hi guys. My name is Sabin. I'm new here and i'm a little bit (in fact, it's a lot more) anxios about PV for witch I do some tests. Those of you with PV, do you...

Hi guys. My name is Sabin. I'm new here and i'm a little bit (in fact, it's a lo...

Sabilioiu

•5 years ago

4 Replies

Epo normal values

Hi in a wonderful site! I would like to ask if epo 7.2 its a normal value ?Futhermore I want to ask about my hct 47.6 and hgb 16.2 .Spleen and liver normal.if...

Hi in a wonderful site! I would like to ask if epo 7.2 its a normal value ?Futhe...

Kikoki

•5 years ago

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Dr. Michael Grunwald ASH 2018 interview with David Wallace - Multiple topics of discussion.

Dr. Michael Grunwald ASH 2018 interview with PV Reporter. We discuss multiple topics including "Risk Assessment and Treatment of Myelofibrosis Patients at...

Dr. Michael Grunwald ASH 2018 interview with PV Reporter. We discuss multiple to...

PVReporter

•5 years ago

Be the first to reply

Iodine Anybody

Hi all Has anyone taken iodine, I’ve been reading “The Iodine Crisis “ book by Lynne Farrow, Very interesting read and can recommend it to anyone with breast...

Hi all Has anyone taken iodine, I’ve been reading “The Iodine Crisis “ book by L...

flfair

•5 years ago

5 Replies

Possible PV

Hello guys. I've been tested for polycythemia for the last 2 years (jak2 negative, erythropoietin normal, HB around 18 and Hematocrit around 52). Last time...

Hello guys. I've been tested for polycythemia for the last 2 years (jak2 negativ...

Sabilioiu

•5 years ago

1 Reply

One for the ladies

Does anyone get frequent bouts of thrush ? I have ET on HU and was wondering if a lowered immune system would be contributing to it . I was prescribed...

Does anyone get frequent bouts of thrush ? I have ET on HU and was wondering i...

Pippa63

•5 years ago

1 Reply

PV at 28

Hey guys! I'm a 28 year old man with recently diagnosed PV. My counts are "borderline"178hb, 50 hct and 460 platelets. Starting vanesections and aspirin soon....

Hey guys! I'm a 28 year old man with recently diagnosed PV. My counts are "borde...

Yeah12

•5 years ago

27 Replies

Bronchiectasis

Hello Does anyone here have, or know if anyone who has ET and bronchiectasis? I have both and it appears that bronchiectasis is affecting ET by raising the plc...

Hello Does anyone here have, or know if anyone who has ET and bronchiectasis? I ...

Ramy22

•5 years ago

9 Replies

ET Jak2

I have been diagnosed since Sept after blood tests. I have had reallybadnight sweats for more than 10 years but always put down to menopause. I now wonder if I...

I have been diagnosed since Sept after blood tests. I have had reallybadnight sw...

Markdazclare

•5 years ago

5 Replies

Introduction

Good evening, I have just joined. I was diagnosed with E.T. in November 2018 and I am still on sick leave from work. I am due to finish my initial treatment at...

Good evening, I have just joined. I was diagnosed with E.T. in November 2018 and...

Tomaj

•5 years ago

17 Replies

Blood results

Hi all happy new year , Anyone been told they have raised macrocytic in full blood count ? My platelets are raised yet again after a routine blood test via Gp...

Hi all happy new year , Anyone been told they have raised macrocytic in full blo...

catwoman2015

•5 years ago

17 Replies

Bone Pain

For those here suffering from bone pain, you might be interested in a site called PV Reporter. There is helpful information, including an explanation of bone...

For those here suffering from bone pain, you might be interested in a site calle...

BluePeony

•5 years ago

12 Replies

Long Term Pain Killers

Is anyone here on long term pain killers. I have bone and muscle pain that is keeping me awake. Tried extra water, salt, magnesium tablets, etc, nothing is...

Is anyone here on long term pain killers. I have bone and muscle pain that is ke...

Raphael_UK

•5 years ago

26 Replies

Parient Power

I regularly look at Patient Power and although it's an American programme I wonder how many of you find it helpful as my haemotologist doesn't seem aware of...

I regularly look at Patient Power and although it's an American programme I wond...

Garden987

•5 years ago

10 Replies

My World 💗💙

Carter & Reina , Grandchildren the best medicine of all x

Phelpsy

•5 years ago

14 Replies

Interesting (and free) course to get the new year started

Happy new year to all in our wonderful MPN family, I thought some of you might be interested in this mini course (MOOC) being hosted by FutureLearn. The...

Happy new year to all in our wonderful MPN family, I thought some of you might ...

Ovingite

•5 years ago

3 Replies

Happy New Year x

Hi I’ve missed you all , Hope you’ve enjoyed the festive season And had lots of goodies x It’s been a busy year My grandchildren keeping me on my toes I...

Hi I’ve missed you all , Hope you’ve enjoyed the festive season And had lots of...

Phelpsy

•5 years ago

20 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for January 2019

Reduction of allele burden on Pegasys?

I need your help again

Secondary Polycythemia

ET, HYDROXY AND MELANOMA

PCV lowered without v-sect or drugs?

Raising funds across the Sahara.

Looking for feedback- staring Pegasy?

Polycythemia

Concerned after haemo. consultation

Frustrated!

Hereditary??

Et & Proteinuria?

Appointments!

Sport in polycythemia

Epo normal values

Dr. Michael Grunwald ASH 2018 interview with David Wallace - Multiple topics of discussion.

Iodine Anybody

Possible PV

One for the ladies

PV at 28

Bronchiectasis

ET Jak2

Introduction

Blood results

Bone Pain

Long Term Pain Killers

Parient Power

My World 💗💙

Interesting (and free) course to get the new year started

Happy New Year x

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