Posts - MPN Voice | HealthUnlocked

MPN Voice

10,992 members•15,371 posts

All posts for July 2016

Great North Run 6 weeks to go my training's going well x. 🙏

Well I'm happy been out walking this morning With the hubby he's like my personal Trainer Kept the pace at 3:5 all the way We managed to walk 12 MILES...

Well I'm happy been out walking this morning With the hubby he's like my person...

Phelpsy

•8 years ago

23 Replies

Diet?

Hi Everyone I am reading up about healthy and anti cancer diets. I have a pretty good diet as it is, but I am looking out for any views on what might have...

Hi Everyone I am reading up about healthy and anti cancer diets. I have a pretty...

Mrs_Average

•8 years ago

11 Replies

Great North Run - Training update

Hello - This is my latest update. Training has been going well and planning my first 10 mile run tomorrow. Have been managing to train 4 times a week, doing...

Hello - This is my latest update. Training has been going well and planning my ...

Chrissie2885

•8 years ago

13 Replies

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Newcastle Forum

If anybody from Teesside would like to attend the Newcastle Forum but has no transport, I am perfectly happy to give them a ride to the event. Just message me...

If anybody from Teesside would like to attend the Newcastle Forum but has no tra...

jillydabrat

•8 years ago

7 Replies

Happy Friday to you all

Hi everyone hope your keeping well , in delighted to be going to the Newcastle MPN Voice Meeting at Centre of Life With my Husband , I feel he really needs...

Hi everyone hope your keeping well , in delighted to be going to the Newcastle ...

Phelpsy

•8 years ago

8 Replies

will imagine im here !

Just realised before Lisa wedding. i have my glaucomma check Aug 8th , Gp 19th blood pressure ,osteoporosis scan 23rd , yearly Heart Echo 31st ( results...

Just realised before Lisa wedding. i have my glaucomma check Aug 8th , Gp 19th ...

Hidden

•8 years ago

7 Replies

Life cover & PV

Hi all, im about to turn 43 and while i do have existing life policies, i would like to get a new policy. Does anyone have any recommendations for a company...

Hi all, im about to turn 43 and while i do have existing life policies, i would...

johoho

•8 years ago

3 Replies

Saw big chief at hospital today

Hi was told in a nice way , i need to start hydroxycarbamide , because of risk to me if i was to wait much longer or i could get more symptoms than i have !...

Hi was told in a nice way , i need to start hydroxycarbamide , because of risk t...

Hidden

•8 years ago

32 Replies

Just started Pegeses/Interferon

Hello all, I just started this drug Pegeses /Interferon, also taking 5 mg of Jakafi twice a day. I have MF 2-3, JAK+. Also transfusion dependent, platelets...

Hello all, I just started this drug Pegeses /Interferon, also taking 5 mg of Jak...

Realtorlin

•8 years ago

7 Replies

C reactive protein blood test

Hi Guys, I recently had a range of blood tests due to an increase in osteoarthritis and joint pains. I will soon have to get a partial replacement of at least...

Hi Guys, I recently had a range of blood tests due to an increase in osteoarthri...

Aime

•8 years ago

8 Replies

Hydroxycarbamide to Angrelide?

I've finally seen a dermatologist today about my messy toe. She examined both my feet and said the problem was the hydroxy. I thought it originated from a...

I've finally seen a dermatologist today about my messy toe. She examined both my...

lizzziep

•8 years ago

17 Replies

Recurring UTIs with Hydroxycarbamide

I have Polycythaemia Vera and take Hydroxycarbamide (16 per week). I have extremely painful urinary tract and bladder infections every 3 or 4 months. I have...

I have Polycythaemia Vera and take Hydroxycarbamide (16 per week). I have extrem...

Hidden

•8 years ago

8 Replies

Newcastle patients’ forum – Friday 14th October 16

1.30 pm – 5 pm, registration and complimentary buffet lunch from 1 pm The Darwin Suite, The Centre for Life, Times Square, Newcastle-upon-Tyne, NE1...

1.30 pm – 5 pm, registration and complimentary buffet lunch from 1 pm The Darw...

Mazcd

Partner•8 years ago

2 Replies

Donations

Hi Maz, This is a question for you. I would like to donate the £40 to MPN Voice received from the recent survey and wondered the best way to do this? I am so...

Hi Maz, This is a question for you. I would like to donate the £40 to MPN Voice...

Aime

•8 years ago

6 Replies

HU dosage

Hello I had my check up today and my heamotologist has advised me to increase my HU to 1000 mg a day as my platelet count has been around 575 for 10 months. I...

Hello I had my check up today and my heamotologist has advised me to increase my...

Hidden

•8 years ago

17 Replies

Water in shower hurts me

I have it on the coldest it'll go, but I still find it feels far too hot. It really burns. Anyone else have this?

I have it on the coldest it'll go, but I still find it feels far too hot. It rea...

lynnieb

•8 years ago

2 Replies

Pegasys and hair loss???

Hi All I've just started on Pegasys (a week ago) and so far so good, I feel pretty good... I know that being on treatment is the right thing for me and I'm...

Hi All I've just started on Pegasys (a week ago) and so far so good, I feel pret...

Loubielou

•8 years ago

4 Replies

Platelets 890, Hcrit 0.49, Low Iron. Treatment options?

I'm posting because I've had a search and can't seem to find many people in a similar situation. I'm only 24, reasonably fit, no other conditions and don't...

I'm posting because I've had a search and can't seem to find many people in a si...

MattLovesu

•8 years ago

24 Replies

Mast Cells and Histamine in MPN Related Itching Explained, by Kate Newberry, Phd

PV Reporter is very pleased to welcome Kate Newberry, Phd as contributing writer. She is a Senior Research Scientist in the Leukemia Dept at MD Anderson...

PV Reporter is very pleased to welcome Kate Newberry, Phd as contributing writer...

PVReporter

•8 years ago

5 Replies

Travel insurance & PV

Hi all, any tips for an understanding travel insurance provider please? Jo

johoho

•8 years ago

8 Replies

FATIGUE

Hi all,. Separate from my fatigue that's related to heat, I seem to have it other times for no apparent reason. So for the past 7 days I've been consuming...

Hi all,. Separate from my fatigue that's related to heat, I seem to have it othe...

katiewalsh

•8 years ago

7 Replies

Hi there

Hi I'm Steph, I'm stage 1 mf

Steph_1976

•8 years ago

24 Replies

Polycythemia Jak2 negative

Hi I was diagnosed with Polycythemia Jak 2 negative about 6 years ago and up until about 2 months ago i never had any symptoms apart from having to have the V...

Hi I was diagnosed with Polycythemia Jak 2 negative about 6 years ago and up unt...

Nozboz

•8 years ago

21 Replies

How long for bone marrow results

my daughter had hers done yesterday, she's had it done before but i cant remember how long it took for the results. just wondering whats the average wait

my daughter had hers done yesterday, she's had it done before but i cant remembe...

kentuckyrain

•8 years ago

3 Replies

Eye Infection

I am recently diagnosed PV Jak2 and just started Pegasys on low dose weekly injection and Aspirin. Yesterday I woke with a very painful swollen eyelid and...

I am recently diagnosed PV Jak2 and just started Pegasys on low dose weekly inje...

Edgbastonian

•8 years ago

10 Replies

Are my blood levels good, bad or indifferent

hi my Mpn family. I had a letter in the post today following my check up with the haemaologist. It was a copy of the letter to my GP and it looks like...

hi my Mpn family. I had a letter in the post today following my check up with t...

jillydabrat

•8 years ago

13 Replies

Low ferritin levels

Hi All, Got my letter back from the haematology department saying everything was fine with my blood tests apart from low ferritin levels at 18 mcg/L which is...

Hi All, Got my letter back from the haematology department saying everything was...

MarkD6701

•8 years ago

11 Replies

Improvement with diet

I have PV diagnosed nearly 7 years ago, treated with Hydrea and venesection, plus low-dose aspirin. I was diagnosed late last year with reflux (stomach to...

I have PV diagnosed nearly 7 years ago, treated with Hydrea and venesection, plu...

lucieboo

•8 years ago

7 Replies

hot / sore face ?

Hi does anyone get hot / and face feels sore like burning,but face doesnt feel hot to touch or look hot , strange one i know ! and yes weather been far too hot...

Hi does anyone get hot / and face feels sore like burning,but face doesnt feel h...

Hidden

•8 years ago

6 Replies

Hotter than July ??

Hi Folks , , having been stuck indoors for long periods I'd forgotten just how hot and uncomfortable it can get. Popped out for an hour earlier and realised I...

Hi Folks , , having been stuck indoors for long periods I'd forgotten just how h...

JediReject

•8 years ago

54 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for July 2016

Great North Run 6 weeks to go my training's going well x. 🙏

Diet?

Great North Run - Training update

Newcastle Forum

Happy Friday to you all

will imagine im here !

Life cover & PV

Saw big chief at hospital today

Just started Pegeses/Interferon

C reactive protein blood test

Hydroxycarbamide to Angrelide?

Recurring UTIs with Hydroxycarbamide

Newcastle patients’ forum – Friday 14th October 16

Donations

HU dosage

Water in shower hurts me

Pegasys and hair loss???

Platelets 890, Hcrit 0.49, Low Iron. Treatment options?

Mast Cells and Histamine in MPN Related Itching Explained, by Kate Newberry, Phd

Travel insurance & PV

FATIGUE

Hi there

Polycythemia Jak2 negative

How long for bone marrow results

Eye Infection

Are my blood levels good, bad or indifferent

Low ferritin levels

Improvement with diet

hot / sore face ?

Hotter than July ??

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