Hello Everyone

[Debborah]

Hello I was just diagnosed on Tuesday with ET and so I am still trying to find out as much information as I can.

[susieq75]

Hello Debborah,

Welcome, sorry to hear of your diagnosis. I am just on here less than a year and it ks a wonderful site. You will find great clear information, lived experiences, support, hope and reassurance here. The people on here are amazingly kind, informed and supportive.

I wish you all the best

Susieq

[Nickthedevil]

Hi Debborah and welcome to the forum. I was diagnosed with ET Jak2+ nearly 5 years ago and don't know what I would have done without this site. You will certainly get all the help and info you need here. Just ask anything you like and someone is sure to have experience of what you want to know. Maz our administrator will be able to send you booklets which will answer all your questions too.

Karen

[Mazcd Partner MPNVoice]

Hello Debborah, welcome to our forum, I would suggest that you have a look at our website mpnvoice.org.uk this will help you find out more about ET, there are some very informative videos as well you can look at with patients and consultants talking about MPNs. As Karen has said, I can send you some information booklets as well, email me at [e-mail] best wishes, Maz

[socrates_8]

Hey Debborah

Welcome to our rather exclusive little club...

My name is Steve, and I was originally diagnosed just over a year ago w/ ET - Cal-R+, that subsequently became Myelofibrosis after my first Bone Marrow Biopsy (BMB).

I am one of those people who simply must learn as much as I possibly can about my new MPN condition, and having access to university libraries, I naturally took to tracking down almost every article/journal ever written concerning MPNs.

However, the best thing I ever found was actually, MPN Voice...

This website, and the people here have a wealth of knowledge in relation to their various MPN conditions, and as a result, often know more about MPNs than many local GPs, and even some specialists...

So don't be surprised or dismayed if you eventually discover that small tid-bit for yourself. MPNs are rare chronic forms of blood cancer... and they are mostly manageable today.

In addition, the people here are all extremely helpful, and all understand how overwhelming all of this (MPN knowledge/diagnosis), might at first appear... simply because we are all at various stages in similar journeys.

Nevertheless, for those real medical questions, please do only rely upon the advice of your own medical team of consultants, and if you are in the UK... (?) You are most fortunate, as one of the world's foremost MPN specialists (Dr Clare Harrison), is based at St Guys, in the event you ever do require some specialist assistance...

Best wishes Debborah

Steve

(Sydney)

[harleydavidson]

Hi Debborah and welcome to the family. Sorry for your diagnosis. I have had PV for 14 years I think and am no expert on ET but wish you well and I know you will get great advice from every one in this forum. Take care. Mel x

[Aime]

Hi Deborah and like the others a big welcome to our forum and family. You are now in touch with people, who although they are strangers, will take the time to help you and they really DO understand what you are going through. I joined the forum in 2012 and it was the best thing I ever did for me, my family and my Polycythaemia.

Keep in touch, look at the MPN website like Maz says and you will feel supported and not alone in your MPN.

Kindest regards Aime xx😺😺

[lizzziep]

Hi Debborah! Welcome to the club 😄 It's not one any of us wanted to join, but hey ho such is life. It is very scary when you're first diagnosed, even more so when you start Googling! The best thing I found on Google was this site. Most of the other "info" I found turned out to be just scary rubbish.

When I started on Hydroxycarbamide I thought I would glow in the dark or at least grow another head because of all the mis-information I'd read online. I was on it for 3 years, I've now been on Anagrelide for nearly a year. Still not glowing and no extra appendages! (But think of the money I could make if I did!)

You'll find lots of information on this site, and if you want to know something just ask, even if you think it might sound a bit daft. Someone will either have asked it before or will know the answer.

I wanted to know if I could still dye my hair - the answer is yes!! Not that I'm going grey - I just wanted to cover my natural highlights 😳

Anyway best wishes for the future - and you do have one even though ET is a cancer. You could be suffering from something a lot worse, so smile and consider how rare and special you are!

Lizzie x

[ChrisAnnSen]

Hi Debbo - we chatted over in the Macmillan Community - glad to see you over here. You have a lot of reading to do here and in MPNVoice, take it slowly and ask questions. Someone is sure to know the answer and there is always Mazcd you can contact if you're really stuck.

[Debborah in reply to ChrisAnnSen]

Hello, yes you were very kind - unfortunately my mother passed away in February and I was hoping not to have to go near a hospital for a long time. I actually thought I might have ovarian cancer like my mum but that is all clear - instead I have ET.

[ChrisAnnSen]

A very difficult time for you Debborah. Personally I've not had a great many hospital appointments, initially every six weeks for a blood test and a talk to the Haematologist, now I've progressed to 3-monthly visits as my platelet count is steadily going down. My hospital is close to the town centre so we make an 'event' of it and go somewhere nice for lunch afterwards.

[ladydriva]

Hello Deborah,

I'm also new to ET ad this site.

I've googled the hell out of ET ad this is the most informative and non doom n gloom place I've found.

I've joined manynfacebook groups but they have sent me near the edge with the amount of doom

and gloom.

Anyways a big hello to you x

[katiewalsh]

Hi Debborah,

I also have ET and am jak2 positive. I've had it a few years now and am on Hydroxyurea, Eliquis (blood thinner) and baby aspirin. I rarely am even aware I have it. I'm 66 so it's hard to tell if things are symptoms of my ET or being older. I don't tolerate high heat as well and rarely feel a littl unexplained fatigue. I've seen a few top experts who have agreed I'm more likely to die of a normal old age problem than from my ET. So try not to worry and do ask questions whenever you have one. Many on here have the answers. Welcome aboard. Katie