Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for September 2014

When I was asked to join the Majic trial ,I was given a diary sheet ,every day I fill in ,when I take my drugs ,and how I feel .its useful .

It's a full scap sheet ,put 4 lines down .put date on left column ,time in middle ,on right how I feel today ..I write in when I don't sleep .if I can't eat...

It's a full scap sheet ,put 4 lines down .put date on left column ,time in middl...

Twinkly

•10 years ago

5 Replies

I have booked a date for Cambridge get together at scotsdales garden centre on October 22 nd ,,please let maz know if you need directions ,x

I spoke to Mary .iv booked the date ,do please come if you can ..myself. Bob. Gill will be there from eleven o'clock on that Wednesday .morning .the centre is...

I spoke to Mary .iv booked the date ,do please come if you can ..myself. Bob. Gi...

Twinkly

•10 years ago

3 Replies

Living Well with cancer using chemo-lite or chemo-free regimens

Is it time for a paradigm shift? In this video recorded at the 2014 International Workshop on Non-Hodgkin Lymphoma, Dr. Owen O’Connor, the chief of hematology...

Is it time for a paradigm shift? In this video recorded at the 2014 Internation...

mcints2

•10 years ago

2 Replies

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Follicular & Indolent Lymphomas

Patient Power has been busy! Here is a series of three videos from the 2014 iwNHL in Scottsdale, AZ where Dr. Wyndham Wilson, Head of Lymphoma Therapeutics at...

Patient Power has been busy! Here is a series of three videos from the 2014 iwN...

mcints2

•10 years ago

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Shall we have a coffee morning in Cambridge in October ? Let maz know a date if you are interested ! I can arrange it with cancer support ,,

Get in touch to let us know if interested ,a Wednesday in October ,your best date ?

Get in touch to let us know if interested ,a Wednesday in October ,your best dat...

Twinkly

•10 years ago

5 Replies

What best time to take hydra

I take two 500 mg five times a week and 500mg two days take one dose morn then 2nd dose at 2 any idears

I take two 500 mg five times a week and 500mg two days take one dose morn then ...

chrissie1959

•10 years ago

12 Replies

Cutting out added sugar and processed foods

Hello everyone. I've been reading posts about putting on weight and fatigues with hydroxycarbemide and I just wanted to tell you what's happening to me since...

Hello everyone. I've been reading posts about putting on weight and fatigues wit...

lizzieET

•10 years ago

4 Replies

I am new to group am in Nottingham i would like to meet others so me and my daughter can get more information from other patients

Who would like to meet for coffee and a chat please pm me i am new to group and would like to meet others for more information and tips how to cope my daughter...

Who would like to meet for coffee and a chat please pm me i am new to group and ...

Shelly1960

•10 years ago

34 Replies

Low Platelets

My husband who has myelofibrosis, has just had his bi monthly check-up and his platelets have dropped to 97, hence the extreme fatigue I would think. He also...

My husband who has myelofibrosis, has just had his bi monthly check-up and his p...

cheridiane

•10 years ago

5 Replies

Have you heard of Pomi.T .the four super foods in one capsule?

I sent off to try it .let you know how well it works ..nothing tried nothing gained ...

I sent off to try it .let you know how well it works ..nothing tried nothing gai...

Twinkly

•10 years ago

3 Replies

MPN VOICE SEPTEMBER 2014 FUNDRAISING UPDATE

Hello Everyone We hope that you are keeping well and that you have had a wonderful summer, long may the sunshine last. We would like to thank all our...

Hello Everyone We hope that you are keeping well and that you have had a wonder...

Mazcd

Partner•10 years ago

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Post to Lizziep-How are you doing?

Hello, Was reading your old post of approx. 6 mos. ago, explaining your reduction in taking the Hu (hydrea) results taking 2-500mg 5 days & 3-500mg 2days...

Hello, Was reading your old post of approx. 6 mos. ago, explaining your reducti...

Hidden

•10 years ago

9 Replies

A Holiday Story

I have just come back from A long trip to Niagra Falls Washington and New York . I was diagnosed with ET in May . I was worried about the flight and the very...

I have just come back from A long trip to Niagra Falls Washington and New York ....

Hidden

•10 years ago

7 Replies

MPN Voice Patients’ Forum – London - 24th November 2014

Monday 24th November 2014, 6 pm – 9 pm, registration from 5.45 pm, the forum will be held in the Robens Suite, 29th Floor Tower Wing, Guy’s Hospital, Great...

Monday 24th November 2014, 6 pm – 9 pm, registration from 5.45 pm, the forum wil...

Mazcd

Partner•10 years ago

10 Replies

Ever heard of a bakers cyst??.no! Nor had I .its symptoms are just like a thrombosis in the calf muscle ,I can't walk .had ultra sound scan

Spent all day at hospital yesterday ,having tests ,my trial nurse holding my hand ..bless her heart .we have a thrombosis treatment team ..they were so on the...

Spent all day at hospital yesterday ,having tests ,my trial nurse holding my han...

Twinkly

•10 years ago

9 Replies

Is there an alternative to drugs for PV?

I was diagnosed with polycythaemia vera a couple of years ago at the age of 61 and have been on daily low dose aspirin and regular venesections since then. I...

I was diagnosed with polycythaemia vera a couple of years ago at the age of 61 a...

reliabletony

•10 years ago

8 Replies

just joined, recent diagnosis .. very confused

recently diagnosed, and very confused, I am trying not to panic but now have to take asprin ach day. feeling overwhelmed is this ususal. im low risk which I...

recently diagnosed, and very confused, I am trying not to panic but now have to ...

heathermc

•10 years ago

10 Replies

Got a tattoo for my daughter

Since its blood cancer awareness month i wanted to do something. I'v always wanted a tattoo but wanted it to mean something, so i did this for my seven yr old...

Since its blood cancer awareness month i wanted to do something. I'v always want...

kentuckyrain

•10 years ago

4 Replies

Day/night sweats

Anyone else suffering with sweats? At night I sleep under a blanket or a sheet because I wake up throughout the night covered in sweat. During the day, it...

Anyone else suffering with sweats? At night I sleep under a blanket or a sheet b...

Chelle_

•10 years ago

9 Replies

Anyone had any implants before MPD

Anyone had implants or large amount of X-rays before MPD. Or exposure to organic chemicals such as Benzene?

Anyone had implants or large amount of X-rays before MPD. Or exposure to organic...

sschram

•10 years ago

12 Replies

PV and hip replacement

I have been diagnosed with PV. I was chatting with a friend and his neighbor also has Polycythemia Vera. What we both have in common is hip replacements....

I have been diagnosed with PV. I was chatting with a friend and his neighbor als...

sschram

•10 years ago

5 Replies

Anybody watch the documentary about cancer supplements and super foods ,how about the report on pomi.T.suppliment .anybody going to try it ?

My son sent away for this new found suppliment for me to try , it contains ,the food we need to help fight the cancer in our body , what's to lose , I'm going...

My son sent away for this new found suppliment for me to try , it contains ,the ...

Twinkly

•10 years ago

2 Replies

ET, early menopause and osteoporosis at 40, are they connected?

Hi, I was diagnosed with ET just a couple of weeks before I turned 40 and was put straight on Aspirin and Hu (18 x 500mg per week). A few months later my GP...

Hi, I was diagnosed with ET just a couple of weeks before I turned 40 and was pu...

DeniseC

•10 years ago

8 Replies

A question for Maz , hoping you can help .

Hi Maz , was wondering if you could ask Prof Harrison about this . Following my diagnosis of PV I then devolved IBS , which is so horrible at the moment . Am...

Hi Maz , was wondering if you could ask Prof Harrison about this . Following my ...

maestromaverick

•10 years ago

10 Replies

Dryness .. ears, mouth, skin, everything!

Hi I have ET. Meds are Pegasys inteferon and clopidegrel. i am suffering from extreme dryness. Does this sound familiar? Sherry

Hi I have ET. Meds are Pegasys inteferon and clopidegrel. i am suffering from ex...

Sherry2

•10 years ago

3 Replies

Hello

Just like to introduce myself . My name is Helen . I was diagnosed with ET in May. I had come back from Jamaice and couldn't stop itching . I suppose I was...

Just like to introduce myself . My name is Helen . I was diagnosed with ET in Ma...

Hidden

•10 years ago

10 Replies

Interesting read...

https://attachment.fbsbx.com/file_download.php?id=1464654117138110&eid=ASuYM5zMxwO2bzyWK50DOR97gX3J7axKPTVweiXJ0L32QKL8phrmq-eO6gzf9QZN338&ext=1409847917&hash=A

https://attachment.fbsbx.com/file_download.php?id=1464654117138110&eid=ASuYM5zMx...

Chelle_

•10 years ago

4 Replies

Vintage Gathering and Road Run Fundraising for MPN Voice

Sunday 21st September 12noon at The Yew Tree Inn, Cauldon, Staffordshire, ST10 3EJ. Entry £5. Come and join Marion her husband and a group of friends for a...

Sunday 21st September 12noon at The Yew Tree Inn, Cauldon, Staffordshire, ST10 3...

Hidden

•10 years ago

Be the first to reply

Belfast City Half Marathon for MPN Voice

All best wishes to Sharon McBride who is running the Belfast City Half Marathon on 13th September for MPN Voice. Hope your training is going well Sharon. Have...

All best wishes to Sharon McBride who is running the Belfast City Half Marathon ...

Hidden

•10 years ago

1 Reply

Great North Run for MPN Voice

Hello Everyone. Please send lots of good wishes to Rebecca and Thomas who are doing the Great North Run this weekend for MPN Voice. Their dad Mark, who has an...

Hello Everyone. Please send lots of good wishes to Rebecca and Thomas who are d...

Hidden

•10 years ago

2 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for September 2014

When I was asked to join the Majic trial ,I was given a diary sheet ,every day I fill in ,when I take my drugs ,and how I feel .its useful .

I have booked a date for Cambridge get together at scotsdales garden centre on October 22 nd ,,please let maz know if you need directions ,x

Living Well with cancer using chemo-lite or chemo-free regimens

Follicular & Indolent Lymphomas

Shall we have a coffee morning in Cambridge in October ? Let maz know a date if you are interested ! I can arrange it with cancer support ,,

What best time to take hydra

Cutting out added sugar and processed foods

I am new to group am in Nottingham i would like to meet others so me and my daughter can get more information from other patients

Low Platelets

Have you heard of Pomi.T .the four super foods in one capsule?

MPN VOICE SEPTEMBER 2014 FUNDRAISING UPDATE

Post to Lizziep-How are you doing?

A Holiday Story

MPN Voice Patients’ Forum – London - 24th November 2014

Ever heard of a bakers cyst??.no! Nor had I .its symptoms are just like a thrombosis in the calf muscle ,I can't walk .had ultra sound scan

Is there an alternative to drugs for PV?

just joined, recent diagnosis .. very confused

Got a tattoo for my daughter

Day/night sweats

Anyone had any implants before MPD

PV and hip replacement

Anybody watch the documentary about cancer supplements and super foods ,how about the report on pomi.T.suppliment .anybody going to try it ?

ET, early menopause and osteoporosis at 40, are they connected?

A question for Maz , hoping you can help .

Dryness .. ears, mouth, skin, everything!

Hello

Interesting read...

Vintage Gathering and Road Run Fundraising for MPN Voice

Belfast City Half Marathon for MPN Voice

Great North Run for MPN Voice

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