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MPN Voice

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All posts for July 2018

Diagnostic Criteria (WHO) for MF, PV and ET

Possibly of interest to some. https://www.mpnconnect.com/pdf/who-diagnostic-criteria-mf-pv-et.pdf

Possibly of interest to some. https://www.mpnconnect.com/pdf/who-diagnostic-crit...

Paul123456

•6 years ago

11 Replies

Diagnosis process

Hi all What tests did your haemotolgist order to diagnose ET? I'm under 40 and have had high platelets counts for several years albeit went largely unnoticed...

Hi all What tests did your haemotolgist order to diagnose ET? I'm under 40 and h...

Lina_uk

•6 years ago

15 Replies

Platelet update

Hey guys, Happy to report platelets are down again after 12 weeks on Peg I’m sitting at 458!! Was with a Reg today as my Cons is on annual leave but all...

Hey guys, Happy to report platelets are down again after 12 weeks on Peg I’m s...

Mackydee123

•6 years ago

2 Replies

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ET for 12 years

I am currently taking 1500mg of HU on 5 days and 2000mg on 2 days per week. This seems like a high dose to me. I would be interested to hear from anyone who...

I am currently taking 1500mg of HU on 5 days and 2000mg on 2 days per week. This...

Mufftreacs

•6 years ago

19 Replies

Good news... and not so good news 😏

Good news, I got my BMB results over the weekend, looks like typical ET currently, doesn't look like pre-fibrotic and no sign of fibrosis, so good news for now...

Good news, I got my BMB results over the weekend, looks like typical ET currentl...

Wentry

•6 years ago

12 Replies

Hip op. and ET

My wife has been told she will have a hip replacement in November. If anyone has experience of this operation whilst having ET we would appreciate your advice...

My wife has been told she will have a hip replacement in November. If anyone has...

martcar

•6 years ago

5 Replies

Positive Post for a Change.

Hi All, I saw a post on here a long while ago about chelated magnesium and Vit B12 taken together can help with energy levels. I have been on them for a few...

Hi All, I saw a post on here a long while ago about chelated magnesium and Vit B...

Mica11

•6 years ago

30 Replies

New combo drug (Ruxo) for MF

Umbralisib Still in trials but promising results so far.......

Paul123456

•6 years ago

9 Replies

Pegasys and acid reflux

Hi, is anyone on Pegasys suffering from acid reflux, I have it really badly and Omeprazole is not helping. Thanks, Frances.

Hi, is anyone on Pegasys suffering from acid reflux, I have it really badly and ...

francesb

•6 years ago

12 Replies

I have Myelofibrosis and my white cells are 43.6

I am new at this site

Chil67

•6 years ago

11 Replies

Hydroxyurea dose! About right or too much?

My darling wife still in hospital, no further towards getting better. Still vomits what little food she consumes. Since Wednesday she has been given...

My darling wife still in hospital, no further towards getting better. Still vomi...

jointpain

•6 years ago

26 Replies

Criticall illness insurance... stick at it!

Hi all my MPN friends. I wanted to share a success story around critical illness insurance and encourage those of you who have it to make a claim! Thanks to a...

Hi all my MPN friends. I wanted to share a success story around critical illnes...

lizzieET

•6 years ago

3 Replies

ET progression question

The Canadian lymphoma association says that the likelihood of ET progressing to MF or leukaemia is about 1%. My haematologist says maybe 3 to 5%. In any case...

The Canadian lymphoma association says that the likelihood of ET progressing to ...

WileyFrench

•6 years ago

15 Replies

Too much water in take and other drinks ?

Hi friends was wondering could there be a connection with way platelets rise quicker than they drop low ! Only I’m wondering in my case if I’m flushing a lot...

Hi friends was wondering could there be a connection with way platelets rise qui...

catwoman2015

•6 years ago

6 Replies

Achy fingers any one?

Hi dears members, I was diagnosed one year ago with PV, taking Hydroxy and asperin and since a few weeks my finger joints hurt, especially during the night...

Hi dears members, I was diagnosed one year ago with PV, taking Hydroxy and asper...

love0826

•6 years ago

23 Replies

Have you heard of this?

I have read in several places that Folic acid is important if taking hydroxy. Today I was on the website " National Onion Association" and read some very...

I have read in several places that Folic acid is important if taking hydroxy. T...

kp27kathleen

•6 years ago

7 Replies

Advice please, oh wise ones 😊

Has anyone taken out life insurance linked to a mortgage, after they were diagnosed? I’ve just bought a house with my partner and we need the insurance for...

Has anyone taken out life insurance linked to a mortgage, after they were diagno...

JaynieQ

•6 years ago

4 Replies

Essential Thrombocythaemia

I have had ET for 12 years + and am currently on a fairly high dose of Hydrea. I live in Australia but each year travel to the UK for several months. After...

I have had ET for 12 years + and am currently on a fairly high dose of Hydrea. ...

Mufftreacs

•6 years ago

9 Replies

Video re PV and progression

Well worth watching, makes some reassuring points. I don’t quite believe the 10% chance of progression claim, I was last told 15% chance every 15 years....

Well worth watching, makes some reassuring points. I don’t quite believe the 10%...

Paul123456

•6 years ago

2 Replies

MPN RESEARCH FOUNDATION LAUNCHES STEM CELL TRANSPLANT TIMING TOOL FOR MPN PATIENTS WITH MF

A new tool to improve stem cell transplant outcomes was announced today by the MPN Research Foundation (MPNRF). The SCT Spectrum Transplant Timing tool (SSTT)...

A new tool to improve stem cell transplant outcomes was announced today by the M...

Mazcd

Partner•6 years ago

5 Replies

Keto Diet and MF

Been on the Keto Diet for about 3 months now. Went for my 6 monthly visit to my Hemo. Red blood cell has count has gone from 90 to 115 since the last test. It...

Been on the Keto Diet for about 3 months now. Went for my 6 monthly visit to my ...

Hidden

•6 years ago

10 Replies

NEW ET

Hi I am a 57 yrs female ET Jak2+ current treatment Hydrea and Aspirin.

Hidden

•6 years ago

18 Replies

Looking for an alternative hematology specialist.

My wife is back in hospital due to the ineptitude of the hematologist. It is a long contorted story. But to shorten it quickly this hematologist stopped the...

My wife is back in hospital due to the ineptitude of the hematologist. It is a l...

jointpain

•6 years ago

15 Replies

My BMB is all over and I'm so glad!!!!

Hello everyone. I had my BMB today and although it was very, very uncomfortable, it was just about bearable! The aspiration was the worst part, a wierd and...

Hello everyone. I had my BMB today and although it was very, very uncomfortable,...

Sarahjane100

•6 years ago

22 Replies

Joint Swelling and PV

Has anyone had issues with swelling of the joints? At night I have three fingers that swell and "go to sleep" and when I wake up just the index finger is...

Has anyone had issues with swelling of the joints? At night I have three finger...

Sheryljean

•6 years ago

5 Replies

Cancer survivor helping others

I'm proud to receive coverage in the local community for supporting the cause of helping fellow MPN patients and raising awareness of our funky blood cancers!...

I'm proud to receive coverage in the local community for supporting the cause of...

PVReporter

•6 years ago

2 Replies

Showers and itching

Years ago I was a sufferer, hot showers itch like hell... Now.. Hydro, Interferon, Itch whe I have COLD showers...

Years ago I was a sufferer, hot showers itch like hell... Now.. Hydro, Interfe...

shiftzz

•6 years ago

4 Replies

2 years with polycythaemia vera

2 years today i made that trip to a&e. I thought I had a trapped nerve in my neck. Turns out it was PV and my HCT was 68! I'm thankful it was spotted before a...

2 years today i made that trip to a&e. I thought I had a trapped nerve in my nec...

EleanorPV

•6 years ago

12 Replies

puritis for PenelopeMK

I have ET on HU and also have same symptom also for body itch my MPN clinical nurse specialist prescribed cetrizine also which has worked during day but i have...

I have ET on HU and also have same symptom also for body itch my MPN clinical nu...

Scottishterrier

•6 years ago

1 Reply

Bites

I was wondering if anyone else with pv finds that whilst on holiday they are the main feast for the mosquitoes. It has definitely worsened since my diagnosis....

I was wondering if anyone else with pv finds that whilst on holiday they are the...

Jackgirl10

•6 years ago

10 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for July 2018

Diagnostic Criteria (WHO) for MF, PV and ET

Diagnosis process

Platelet update

ET for 12 years

Good news... and not so good news 😏

Hip op. and ET

Positive Post for a Change.

New combo drug (Ruxo) for MF

Pegasys and acid reflux

I have Myelofibrosis and my white cells are 43.6

Hydroxyurea dose! About right or too much?

Criticall illness insurance... stick at it!

ET progression question

Too much water in take and other drinks ?

Achy fingers any one?

Have you heard of this?

Advice please, oh wise ones 😊

Essential Thrombocythaemia

Video re PV and progression

MPN RESEARCH FOUNDATION LAUNCHES STEM CELL TRANSPLANT TIMING TOOL FOR MPN PATIENTS WITH MF

Keto Diet and MF

NEW ET

Looking for an alternative hematology specialist.

My BMB is all over and I'm so glad!!!!

Joint Swelling and PV

Cancer survivor helping others

Showers and itching

2 years with polycythaemia vera

puritis for PenelopeMK

Bites

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