Posts - MPN Voice | HealthUnlocked

MPN Voice

10,414 members • 14,355 posts

All posts for January 2014

I suffer from really dry eyes. My optician says that my tear film volume is very low and breaks up quickly.

I have had E.T. for 9 years and have been on hydroxycarbamide for over 8 years. Just wondered if anyone else who has a MPD and/or is on hydroxy suffers from...

I have had E.T. for 9 years and have been on hydroxycarbamide for over 8 years. ...

mol56

•10 years ago

6 Replies

Different brands of Hydroxicarbamide

Hi everyone, I'm thinking of decamping to the Christie hospital in Manchester - we live in a fairly rural area, and I never see the same haematologist twice,(...

Hi everyone, I'm thinking of decamping to the Christie hospital in Manchester - ...

LouisePRV

Volunteer•10 years ago

7 Replies

Hydroxy and live vaccines

My grandson aged 3 has just had his MMR, polio, whooping cough and diphtheria vaccines. The nurse told my daughter that he should stay away from anyone on...

My grandson aged 3 has just had his MMR, polio, whooping cough and diphtheria va...

piggie50

•10 years ago

9 Replies

Want to take advantage of all our features? Just log in!

Ruxolitinib Relief Trial.

Hi all . Just an update on my trial experience . Was unblinded today to find out I'd been taking my normal Hydroxy for last 24 weeks and from today will be...

Hi all . Just an update on my trial experience . Was unblinded today to find out...

maestromaverick

•10 years ago

20 Replies

Does anyone on HU have painful urination. I have painful joints and awful itch at night. My hair has also got very thin. Is it only me

myelo

•10 years ago

11 Replies

Over the last few weeks i have started to itch on my back and arms doesn't last very long and only seems to be when i get hot

I have PV and this has never happened before my counts are good at the moment just wanted to know if this is normal with PV or do most people have the itching...

I have PV and this has never happened before my counts are good at the moment ju...

sparko35

•10 years ago

11 Replies

Can I finish work early ? Have a nhs pension am now self employed.... Got ET. Had it 17 years. HU 1000mg a day for 12 years

...I am 50 this year..arghh! Got 17 years nhs superannuation pension. Was wondering if anyone knows I I would be eligible to draw my pension early due to...

...I am 50 this year..arghh! Got 17 years nhs superannuation pension. Was wonder...

DENMOOR

•10 years ago

18 Replies

dose anyone get bad pains in there legs

i have et and the pain is really bad

tommy123

•10 years ago

3 Replies

Hello - New Member

Hi, i have just found this page and joined. I am a 42 yo male in the UK. I had my diagnosis confirmed in August as PRV, having initially been diagnosed as MF...

Hi, i have just found this page and joined. I am a 42 yo male in the UK. I had ...

Paul42

•10 years ago

5 Replies

Hello All has any one had intravenous Vitamin C infusions for ET?

Seea

•10 years ago

11 Replies

psychological maybe???

I hope i am worrying for nothing, maybe my symptoms slight pain in my ears and jaw, food coming back because of overeating are psychological as I am worried...

I hope i am worrying for nothing, maybe my symptoms slight pain in my ears and j...

margie1

•10 years ago

7 Replies

symptoms psychological ????

I hope i am worrying for nothing, maybe my symptoms slight pain in my ears and jaw, food coming back because of overeating are psychological as I am worried...

I hope i am worrying for nothing, maybe my symptoms slight pain in my ears and j...

margie1

•10 years ago

1 Reply

Hi everyone, REALLY IMPORTANT Please email me your experiences of living with PV......

I'm to be interviewed by a medical journalist on Saturday, and the resulting video will be shown to haematologists all round the world. Obviously I'll be...

I'm to be interviewed by a medical journalist on Saturday, and the resulting vid...

LouisePRV

Volunteer•10 years ago

6 Replies

How do you deal with the emotions linked with hospital appointments?

I find myself looking forward to going in a strange kind of way, I like to know what is happening with my counts and know that they are roughly what I expect....

I find myself looking forward to going in a strange kind of way, I like to know ...

Foss33

•10 years ago

14 Replies

Hi everyone. I have been getting mouth ulcers on my throat ( because of hydroxy). Now lost voice 2 wks ago. Doc done blood test no infection

Has anyone else had this problem.starting to get me down. Can't talk to anyone. Lol. X thanks.

Has anyone else had this problem.starting to get me down. Can't talk to anyone. ...

corrins

•10 years ago

9 Replies

ET - is this a blood cancer, a bone marrow disease or what? I was diagnosed in 2007 - ET (JAK 2 positive) but I am still confused.

janesid

•10 years ago

15 Replies

unsupportive manager

Hi i hwas off work due to having esophageal and stomach cancer and underwent intensive chemo and major surgery to reove my oesophagus and part of my...

Hi i hwas off work due to having esophageal and stomach cancer and underwent int...

margie1

•10 years ago

7 Replies

unsupportive management

Hi I went back to work in September after having treatment for esophageal and stomach cancer I had chemo and major surgery so was off work for over 12...

Hi I went back to work in September after having treatment for esophageal and st...

margie1

•10 years ago

Be the first to reply

Hot/cold flushes are particularly bad at the moment. How do others cope given not wise to hang out of window during cold nights?

linds

•10 years ago

12 Replies

When is the next forum at St Thomas hospital London & how do I get an invite.

divot

•10 years ago

4 Replies

I was diagnosed with ET 10 months ago. I have times when I experience shortness of breath. I am very active , work out 4-5 times per week.

I feel like I have to take extra breaths or yawn frequently. Has anyone out there experienced anything similar?

I feel like I have to take extra breaths or yawn frequently. Has anyone out the...

Lunacdh

•10 years ago

19 Replies

Reading the latest news of breakthrough in research .makes me proud . I hope the racing greyhound gets to know how much we love him ........

We are so lucky to have such dedicated teams tirelessly working on our behalf.to find the breakthrough to relieve this awful illness, I for one want to send my...

We are so lucky to have such dedicated teams tirelessly working on our behalf.to...

Twinkly

•10 years ago

2 Replies

Researchers discover new genetic mutation in MPN.

The research from Prof Green and a second paper from Dr Kraloviks in Vienna was published in December 2013, in the New England Journal of Medicine....

The research from Prof Green and a second paper from Dr Kraloviks in Vienna was ...

Mazcd

Partner•10 years ago

7 Replies

Itchy Scalp, I have had a really hot, itchy, dry scalp for over a month now, I finally took myself to the Drs today and she said it was

dermatitis.. she told me to check with my haematologist if It could be a side effect of HU. I take 500mg daily for over 2yrs now. I have ET. has anyone else...

dermatitis.. she told me to check with my haematologist if It could be a side ef...

gbeam

•10 years ago

9 Replies

Confused

I am confused and a little angry with my 3 month check up today. I have seen a dr that I had not seen before, I have just moved hospitals and my notes still...

I am confused and a little angry with my 3 month check up today. I have seen a d...

stevenjust

•10 years ago

16 Replies

I'm Having Venesections For PV,Instead Of Chemo Tablets! Am I Doing The Right Thing?

Malaga88

•10 years ago

12 Replies

I just find some interesting discovery in new way of treating different types of cancers.

Cancer Immunotherapy Named Science Magazine's "Breakthrough of the Year" T cells(orange) attached to a tumor cell Memorial Sloan-Kettering researchers have...

Cancer Immunotherapy Named Science Magazine's "Breakthrough of the Year" T cel...

light

•10 years ago

2 Replies

Just wondering if anyone has suffered with shingles since they have been on Ruxolitinib. I was diagnosed with MF 7 years ago.

I have been on Ruxo for 10 months which has been marvellous and has reduced my spleen by 50%, but still low hg and have started to itch again. Shingles...

I have been on Ruxo for 10 months which has been marvellous and has reduced my s...

October

•10 years ago

7 Replies

How do others feel about the storyline in Coronation Street? I'm struggling to watch it on tele.We are working everyday to get as fit as pos

Cancer is the most terrifying word in our world.how do you feel watching someone giving up the fight ?? I find it impossible to think about it,I'm asking the...

Cancer is the most terrifying word in our world.how do you feel watching someone...

Twinkly

•10 years ago

4 Replies

as anyone got et with fibrosis

as anypne got et with fibrosis and on majic study

tommy123

•10 years ago

8 Replies

Posts - MPN Voice | HealthUnlocked

MPN Voice

All posts for January 2014

I suffer from really dry eyes. My optician says that my tear film volume is very low and breaks up quickly.

Different brands of Hydroxicarbamide

Hydroxy and live vaccines

Ruxolitinib Relief Trial.

Does anyone on HU have painful urination. I have painful joints and awful itch at night. My hair has also got very thin. Is it only me

Over the last few weeks i have started to itch on my back and arms doesn't last very long and only seems to be when i get hot

Can I finish work early ? Have a nhs pension am now self employed.... Got ET. Had it 17 years. HU 1000mg a day for 12 years

dose anyone get bad pains in there legs

Hello - New Member

Hello All has any one had intravenous Vitamin C infusions for ET?

psychological maybe???

symptoms psychological ????

Hi everyone, REALLY IMPORTANT Please email me your experiences of living with PV......

How do you deal with the emotions linked with hospital appointments?

Hi everyone. I have been getting mouth ulcers on my throat ( because of hydroxy). Now lost voice 2 wks ago. Doc done blood test no infection

ET - is this a blood cancer, a bone marrow disease or what? I was diagnosed in 2007 - ET (JAK 2 positive) but I am still confused.

unsupportive manager

unsupportive management

Hot/cold flushes are particularly bad at the moment. How do others cope given not wise to hang out of window during cold nights?

When is the next forum at St Thomas hospital London & how do I get an invite.

I was diagnosed with ET 10 months ago. I have times when I experience shortness of breath. I am very active , work out 4-5 times per week.

Reading the latest news of breakthrough in research .makes me proud . I hope the racing greyhound gets to know how much we love him ........

Researchers discover new genetic mutation in MPN.

Itchy Scalp, I have had a really hot, itchy, dry scalp for over a month now, I finally took myself to the Drs today and she said it was

Confused

I'm Having Venesections For PV,Instead Of Chemo Tablets! Am I Doing The Right Thing?

I just find some interesting discovery in new way of treating different types of cancers.

Just wondering if anyone has suffered with shingles since they have been on Ruxolitinib. I was diagnosed with MF 7 years ago.

How do others feel about the storyline in Coronation Street? I'm struggling to watch it on tele.We are working everyday to get as fit as pos

as anyone got et with fibrosis

Search posts

Pinned Posts

Latest poll

What age were you when your MPN was diagnosed?

Topics

Archive