Posts - MPN Voice | HealthUnlocked

MPN Voice

10,445 members • 14,398 posts

All posts for November 2015

Side Effects Hydroxea

Hello everyone, hope you had very interesting day at the London forum. Maz will you will be posting a video on it? My question to all is, been taking HU for...

Hello everyone, hope you had very interesting day at the London forum. Maz will...

mickey64

•8 years ago

4 Replies

Nottingham support meeting

Hi all who is going to the meeting on weds 18th also maz can we ask at the meeting who has flu jabs because my health could be put at risk being around people...

Hi all who is going to the meeting on weds 18th also maz can we ask at the meeti...

Shelly1960

•8 years ago

16 Replies

Big thank you to MPN Voice

I had such a great day in London yesterday at the event organised by MPN Voice and Claire Harrison from Guys. I enjoyed every moment. So fantastic to meet...

I had such a great day in London yesterday at the event organised by MPN Voice a...

Jane65

•8 years ago

3 Replies

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Myelofibrosis

Hi all, I was diagnosed with MF last year. I had ET for 30 years before that. I was never given anything for ET. I am now on a wait and watch for MF. Is anyone...

Hi all, I was diagnosed with MF last year. I had ET for 30 years before that. I ...

CeeCee123

•8 years ago

33 Replies

9th Dec 2015 Meet up Cambridge

Hi Everyone, I am trying to organize a coffee morning / day in Cambridge, same location as where twinkly has arranged some before. I was planning on 9th dec,...

Hi Everyone, I am trying to organize a coffee morning / day in Cambridge, same ...

Hidden

•8 years ago

6 Replies

Living with MPNs Day

Many thanks to Maz, the other members of the MPN Voice team, the medical professionals and everyone else who contributed to a very interesting and well...

Many thanks to Maz, the other members of the MPN Voice team, the medical profess...

AndyT

•8 years ago

2 Replies

Thanks Maz

Hi Maz. Just arrived in Florida and the three brochures were waiting. Thank you so much for sending. I haven't found anything this informative so I really...

Hi Maz. Just arrived in Florida and the three brochures were waiting. Thank you ...

katiewalsh

•8 years ago

3 Replies

Here's our thought for the weekend ,,I send it you on Friday ...

Patience is a virtue ..try to stay calm ..

Twinkly

•8 years ago

10 Replies

Genetics and MPNs

Greetings: We at Patient Power have been trying a new online conversational approach with experts and advocates. I'd love top now what you think. Here's a clip...

Greetings: We at Patient Power have been trying a new online conversational appr...

andrewschorr

•8 years ago

6 Replies

Raised red areas of irritation

I have ET, and I'm taking HU one pill 500 mg once a day, I started taking it in June, and my platelets are going down, currently about 465. For several months...

I have ET, and I'm taking HU one pill 500 mg once a day, I started taking it in ...

jeanr

•8 years ago

13 Replies

Alls well

A big thank you you my friends for your good wishes , platelets up a little , but she thinks way im feeling is because ,i have iritis in my eyes after having...

A big thank you you my friends for your good wishes , platelets up a little , bu...

Hidden

•8 years ago

16 Replies

Pegasys and Low Blood Counts

Hi Everyone, Can Pegasys (Inteferon) lower your counts too much? I've been taking Pegasys for just over a year now, and as I look back over my results, apart...

Hi Everyone, Can Pegasys (Inteferon) lower your counts too much? I've been taki...

MarieNZ

•8 years ago

15 Replies

Coping

how do some of you cope with the depression ? Not sure what I dislike the most at the moment ......the illness or the depression I'm hoping the cloud will...

how do some of you cope with the depression ? Not sure what I dislike the most ...

Hidden

•8 years ago

24 Replies

Nervous

Hi everyone , i should be used to things by now , but just feeling worried about my appoiment with heam at hospital tomorrow! i guess its because i havent been...

Hi everyone , i should be used to things by now , but just feeling worried about...

Hidden

•8 years ago

21 Replies

Check up

So today I had my quarterly check up at Guys and although my results were pants, and a biopsy booked for blackness to the roof of my mouth and I have now been...

So today I had my quarterly check up at Guys and although my results were pants,...

Karen1970

•8 years ago

13 Replies

Need a place to just be me !!

So we built this gazibo size summer house ,,here's a look for you all ....

Twinkly

•8 years ago

8 Replies

Window seat

Hi all A while back we spoke about your projected summer house build and my little window seat Twinkly. I see in your picture of the wedding your lovely new...

Hi all A while back we spoke about your projected summer house build and my litt...

Hidden

•8 years ago

8 Replies

HU and funny taste in mouth

I just notice today I have a weird taste in my mouth, just recently started the meds, been on them over a week now. Take at night with plenty of water. Its...

I just notice today I have a weird taste in my mouth, just recently started the ...

mickey64

•8 years ago

7 Replies

Busy weekend ,judging a dog show at Clacton ..boy was I beat after 5 hours on my feet !!

Keeping busy ,,keeping alert and contacted ,that's the secret !! Never allow the blood problem to rule your life ..always say "I can try " not " I can't do...

Keeping busy ,,keeping alert and contacted ,that's the secret !! Never allow th...

Twinkly

•8 years ago

11 Replies

Breathlessness

Does anyone else here suffer from breathlessness? I often feel breathless and don't know if it's the ET, enlarged spleen, or the meds (hydroxicarbomide and...

Does anyone else here suffer from breathlessness? I often feel breathless and do...

janwh

•9 years ago

19 Replies

ET and Supplements

Would like to find out what kind of supplements do people take. I now take Vitamin C, Vitamin D, Fish oil, and magnesium oh and baby aspirin. Was wondering...

Would like to find out what kind of supplements do people take. I now take Vita...

mickey64

•9 years ago

7 Replies

Colds

Hi Just wondering Does anyone suffer with frequently with sore throats and colds while on hydroxy Do you take any over the counter medicines for it Or were...

Hi Just wondering Does anyone suffer with frequently with sore throats and cold...

Hidden

•9 years ago

8 Replies

Important opportunity to comment on NICE draft decision re Ruxolitinib for MF patients

THE DEADLINE IS TODAY - TUESDAY 10 NOVEMBER - for commenting on this decision by NICE, please can you all do your utmost to comment and urge NICE to approve...

THE DEADLINE IS TODAY - TUESDAY 10 NOVEMBER - for commenting on this decision by...

Mazcd

Partner•9 years ago

6 Replies

Stomach problems

Hi everyone this is my first post on the forum but I have had a lot of questions answered from others posts which have helped me a lot since my diagnoses 2...

Hi everyone this is my first post on the forum but I have had a lot of questions...

Linda1950

•9 years ago

15 Replies

New Gal...

I was diagnosed in 2007 with PV, at 40 years old. I have been told all along that it's not cancer exactly, but cancer-like. Well, I finally got my doctor to...

I was diagnosed in 2007 with PV, at 40 years old. I have been told all along th...

BeckyM4

•9 years ago

32 Replies

Hydroxea and indigestion

Does anyone have problems with indigestion while being on HU. I just started taking it but my indigestion is through the roof. Tums taken all day does not...

Does anyone have problems with indigestion while being on HU. I just started ta...

mickey64

•9 years ago

10 Replies

Good news

Hi all I had my routine appointment this week and my platelet count had dropped to 434!! I was so pleased as it had been climbing since being stable at about...

Hi all I had my routine appointment this week and my platelet count had dropped ...

Nickthedevil

•9 years ago

22 Replies

Hello!

Thankyou so much for the add. I was diagnosed with PV June 2013, I'm Jak2+, currently taking daily asprin, and have been on Pegasys for about a year as the...

Thankyou so much for the add. I was diagnosed with PV June 2013, I'm Jak2+, curr...

MarieNZ

•9 years ago

10 Replies

Low dose naltrexone

I've been reading about this. It says it treats cancers so can it be used if diagnosed with ET. Consultant told me ET is a mild form of blood cancer

I've been reading about this. It says it treats cancers so can it be used if dia...

130396

•9 years ago

2 Replies

Fatigue and headaches

Like many of you I'm suffering with fatigue constantly and not sure if that's giving me a headache or wether it just feels like a headache because my heads...

Like many of you I'm suffering with fatigue constantly and not sure if that's gi...

Hidden

•9 years ago

8 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for November 2015

Side Effects Hydroxea

Nottingham support meeting

Big thank you to MPN Voice

Myelofibrosis

9th Dec 2015 Meet up Cambridge

Living with MPNs Day

Thanks Maz

Here's our thought for the weekend ,,I send it you on Friday ...

Genetics and MPNs

Raised red areas of irritation

Alls well

Pegasys and Low Blood Counts

Coping

Nervous

Check up

Need a place to just be me !!

Window seat

HU and funny taste in mouth

Busy weekend ,judging a dog show at Clacton ..boy was I beat after 5 hours on my feet !!

Breathlessness

ET and Supplements

Colds

Important opportunity to comment on NICE draft decision re Ruxolitinib for MF patients

Stomach problems

New Gal...

Hydroxea and indigestion

Good news

Hello!

Low dose naltrexone

Fatigue and headaches

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