Posts - MPN Voice | HealthUnlocked

MPN Voice

10,992 members•15,371 posts

All posts for April 2019

Itchy moles!

Does anyone else have really itchy moles? Mine are driving me crazy at the minute. Not sure if it’s mpn related or if I should be concerned about skin cancer...

Does anyone else have really itchy moles? Mine are driving me crazy at the minu...

Louise2870

•6 years ago

5 Replies

Hydroxy

Well today Ive been given my first box of HU and I will be honest I am terrified . I am very sensitive to medication and get every side effect going. Can...

Well today Ive been given my first box of HU and I will be honest I am terrifie...

jodary

•6 years ago

26 Replies

Diagnosis with Polycythemia today

Today I went to see my Hematologist he said I have mpn Polycythemia. I had bloods taken shows my bloods are evaluating and everything else. My ct scan shows...

Today I went to see my Hematologist he said I have mpn Polycythemia. I had bloo...

Zar77

•6 years ago

10 Replies

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Breathlessness with ET

Hi everyone. Can anyone advise on what they do when short of breath with ET. I was diagnosed over 2 years ago with Jak2+, I have been lucky in that apart from...

Hi everyone. Can anyone advise on what they do when short of breath with ET. I w...

Charliemills

•6 years ago

16 Replies

ET symptoms

Hi everyone I’m feeling very low at the moment. I was diagnosed with ET jak2 + on 11th April.... my haematologist is very blase about the whole diagnosis. I...

Hi everyone I’m feeling very low at the moment. I was diagnosed with ET jak2 + ...

Dazakella2010

•6 years ago

15 Replies

IE - mystery diagnosis

Maz, Would it be possible to get some clarification about the symptoms, possible causes and any other relevant info about IE from Prof Harrison please. I feel...

Maz, Would it be possible to get some clarification about the symptoms, possible...

Aime

•6 years ago

7 Replies

Thinking of you all 😘

Very true 😊

Sand-Dancer

•6 years ago

11 Replies

Thrombocyte removal/transfusion!

Does anyone know if we could give our platelets to other people? I just found out that my mother-in-law has Myelodiplastic Syndrom, a type of blood cancer more...

Does anyone know if we could give our platelets to other people? I just found ou...

Anag

•6 years ago

28 Replies

Update on MPNs from the National Institute for Health

This is the link to the US NIH update on MPNs. Like orange juice, comes in two varieties: with bits, for those who like to know about the data/ science (...

This is the link to the US NIH update on MPNs. Like orange juice, comes in two v...

Rachelthepotter

•6 years ago

3 Replies

Update

Hi All, Thought it was about time I wrote with an update. Last year I wrote a few posts about my first transplant (MUD) to treat myelofibrosis. It failed to...

Hi All, Thought it was about time I wrote with an update. Last year I wrote a fe...

Simon96

•6 years ago

20 Replies

Waiting for a donor

We had good and bad news yesterday re husband’s MF. No donor match on the international register (we already knew his sister is not a full match), apparently...

We had good and bad news yesterday re husband’s MF. No donor match on the intern...

Brienne

•6 years ago

7 Replies

New member diagnoses w ET

hi...i’m new to this community, i recently diagnosed w ET. my paletes reached 1000, and now i’m taking thromboreductin for 2 months already (2 tablets per...

hi...i’m new to this community, i recently diagnosed w ET. my paletes reached 10...

vivihtp

•6 years ago

37 Replies

VWD Screening

Hello, hope everyone is well. Can anyone enlighten me as to what VWD screening is please? Many thanks Mich

Hello, hope everyone is well. Can anyone enlighten me as to what VWD screening i...

Mich10

•6 years ago

14 Replies

Thought I had PV, maybe it's IE? Anyone with IE out there?

Hi, I have been told I have PV, or some variant of it as I do not have the JAK2 mutation or splenomegaly and the only blood abnormalities are RBC, HGB and HCT...

Hi, I have been told I have PV, or some variant of it as I do not have the JAK2 ...

meaboutthis

•6 years ago

6 Replies

Sequel to “Getting Desperate “

Hello again! At long last after more chasing I had an appointment with the haemo at the local infirmary! I’m going back this week to start on Pegasys so here’s...

Hello again! At long last after more chasing I had an appointment with the haemo...

hall2

•6 years ago

3 Replies

Interferon--does ones age make a difference?

I'm on Hydroxy and would like to try interferon. My hematologist has told me that she will apply to see if I can go on it (I'm in Canada) however she warned...

I'm on Hydroxy and would like to try interferon. My hematologist has told me th...

jeanr

•6 years ago

18 Replies

Another possible MF ‘cure’ but very early stage....

https://www.apnews.com/Business%20Wire/569c6623ad784538ba40be42a99f087a “This clinical trial will evaluate the ability of AVID200 to achieve the...

https://www.apnews.com/Business%20Wire/569c6623ad784538ba40be42a99f087a “This cl...

Paul123456

•6 years ago

10 Replies

Trauma related polycythemia Vera?

Has anyone's polycythemia Vera started from a trauma?

Kimmyk

•6 years ago

16 Replies

Aspirin Alternatives!

I personally take only 3-4 x 50mg of aspirin per week and 3x60mg Ginkgo Biloba per day in order to keep my blood from clotting. This is working very well, with...

I personally take only 3-4 x 50mg of aspirin per week and 3x60mg Ginkgo Biloba p...

Anag

•6 years ago

2 Replies

Honesty...not policy

I'm not usually given to general whinging but sometimes, some things just merit a bit of a moan. I've had travel insurance cover with Staysure for a few years,...

I'm not usually given to general whinging but sometimes, some things just merit ...

DENICE66

•6 years ago

10 Replies

Oxford Forum

A big hello to all those who attended the Oxford Forum on Wednesday and a great big thank you to the organisers and speakers who made it all possible. As...

A big hello to all those who attended the Oxford Forum on Wednesday and a great ...

Ovingite

•6 years ago

3 Replies

Haemo appointment

Haematology appointment this morning 🤔 first one since I stopped all the HU and Ruxolitinib. Interesting to see what my bloods are today. My platelets had...

Haematology appointment this morning 🤔 first one since I stopped all the HU and...

Graham7694

•6 years ago

8 Replies

Low RDW-CV

Hi everyone! Got my CBC result yesterday with the following results: WBC Count- 8400 RBC Count- 3.91 Hemoglobin- 13.4 Hematocrit- 40.3 Platelet Count- H......

Hi everyone! Got my CBC result yesterday with the following results: WBC Count- ...

Yona

•6 years ago

9 Replies

Absolutely different experience entirely!

Hi all,I had my new appointment with a new haematologist at a new NHS authority yesterday and the contrast to when i was first diagnosed and my treatment in...

Hi all,I had my new appointment with a new haematologist at a new NHS authority ...

Tico

•6 years ago

46 Replies

What does a normal karyotype means in ET?

I have my BMB results and my heamatologist told me that i have normal karyotype, and no fibrosis. I have mild ET and she didnt mentioned anything about...

I have my BMB results and my heamatologist told me that i have normal karyotype,...

Aneliv9

•6 years ago

2 Replies

Having teeth out

Hi anyone had any experience having teeth out? I’m in agony, been to the emergency dentist and been given penicillin for 5 days, but advised I need 2 teeth...

Hi anyone had any experience having teeth out? I’m in agony, been to the emergen...

Grumpyfairy

•6 years ago

12 Replies

Anaemic?

I've been to the clinic today, my platelets were back in the normal range (hurray!) however I am anaemic, (102) and have been for months. I previously had iron...

I've been to the clinic today, my platelets were back in the normal range (hurra...

lizzziep

•6 years ago

15 Replies

SO MY JOURNEY BEGINS

when I was diagnosed 3 weeks ago for PV JAK2+ my readings wern't too bad to I wasn't put on any meds. I got my blood test results today although my blood went...

when I was diagnosed 3 weeks ago for PV JAK2+ my readings wern't too bad to I wa...

Chez1947

•6 years ago

13 Replies

Mouth ulcers

I am PV and taking hydroxy. Does anyone have any suggestions as to how to deal with mouth ulcers?

I am PV and taking hydroxy. Does anyone have any suggestions as to how to deal w...

Bluetop

•6 years ago

4 Replies

Scared 😒

I’ve had high platelets since 2016 after a fall one night I fell and hit the back of my head lost my sense of smell after that as well then I went to emergency...

I’ve had high platelets since 2016 after a fall one night I fell and hit the bac...

faith949

•6 years ago

2 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for April 2019

Itchy moles!

Hydroxy

Diagnosis with Polycythemia today

Breathlessness with ET

ET symptoms

IE - mystery diagnosis

Thinking of you all 😘

Thrombocyte removal/transfusion!

Update on MPNs from the National Institute for Health

Update

Waiting for a donor

New member diagnoses w ET

VWD Screening

Thought I had PV, maybe it's IE? Anyone with IE out there?

Sequel to “Getting Desperate “

Interferon--does ones age make a difference?

Another possible MF ‘cure’ but very early stage....

Trauma related polycythemia Vera?

Aspirin Alternatives!

Honesty...not policy

Oxford Forum

Haemo appointment

Low RDW-CV

Absolutely different experience entirely!

What does a normal karyotype means in ET?

Having teeth out

Anaemic?

SO MY JOURNEY BEGINS

Mouth ulcers

Scared 😒

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