Me and ET

[Stevef10]

Hi have just been diagnosed with ET.  This is my first blog.  Very emotional to start with but now coming to terms with it a bit. Getting my Hydrea in a month. Can't wait after reading some comments on the site. Any guidance would be most helpful. Thank you in advance.  

[Twinkly]

Don't worry mate ..you are really not alone ..there are lots of us !! Just ask ,someone will know the answer ..life goes on ,,maybe a bit different. But just as rewarding ...maybe think of asking maz for a buddy ,,to chat to on line ..twinkly. Xx

[Stevef10 in reply to Twinkly]

THANK YOU FOR YOUR COMMENTS. WHO IS MAZ?

[Stevef10 in reply to Stevef10]

I have found MAZ and written to her thanks again. How are your DOGS and what bred are they?  

[Twinkly in reply to Stevef10]

I have dogs of all shapes and sizes ,,tiny poodles ,big Black Russian black terriers .i go to shows with them .and visit with them as pat dogs to disabled people ..xx

[Stevef10]

You look like a very busy lady

[Superwoman]

As Twinkly says Steve, you are not alone. I have ET and take Asprin and Hydroxy, along with some other tablets no need to bore everyone😌 With that lot, just pop them in the morning and get on with life. 

Maz is a gem and always there for any problems that you might not get answers to from your Haemotologist all be it that most are very skilled in this field, but saying that, there are the rest of us, this rare breed of people who are always there for each other to give advise as best we can, and normally with a lot of good humour.

So chin up we are here for each other.

Jean

[Stevef10]

Hi Jean thank you so much for your lovely and comforting words. It really is good to know I will have such support with humour.

My goal at the moment to learn all I can about ET then send him packing and get on with my life with my chin held high.

I am sure we will be in regular contact.

Thanks again SUPERWOMEN.   

[Superwoman in reply to Stevef10]

Hi Steve,

That's it go get it and face it full on. I know it all sounds a bit scary when you are first told you have an MPN, but Now you have found this great site we are all there for one another, the good humour is in abundance, always someone there to give us a lift and buoy us on. Eat well, keep fit and carry on, and there should never be a time when you need to Phone Home (ET) but I am not a green alien, thank god.

Jean

[Hidden]

Hi Steve, I was diagnosed last year with ET. Not everyone is on HU. I only take aspirin 100mg. My platelets are around 650 to 750. Good luck finding Info  Lyn NZ

[lizzieET]

Hi Steve.  We're a lovely bunch! !! One thing I'd suggest you do is give your diet and exercise a brush up. ... There's lots of us on here who have cut out processed food, limited our alcohol intake, eat loads of green veg & get out walking & exercising - all helps the body be its best. 

Ask away - there's loads of knowledge experience and support between us.

Liz 

[lizzziep]

Hi, it's very scary when you're first diagnosed, After making the mistake of Googling ET and then believing everything I read I thought I had days to live 😳! However 5 years on I'm still here! I have found more information and most importantly reassurance from this site than from the hospital. I'm on Hydroxycarbamide, 17 a week, which I take in the evening to combat the fatigue it can cause, plus aspirin in the morning. My platelets can be steady for a while then climb for no reason, however the hospital then adjust my hu to get them back on track. Apart from tiredness, which could be more to do with age, I don't have many symptoms. I get spleen pain but nothing I can't live with. If you have any questions about ET just ask, someone will have the answer!

Best wishes 

Lizzie x

[beetle]

Welcome to the forum which I find is the best there is!

Best wishes, Jan

[Mwalimu]

I agree with everyone else - there is life (and it's been a good one for me) after ET diagnosis so take heart from all of us! Why have you got to wait a month for the HU?

Sallie

[Stephen399b]

Hello from another Steve

I was recently diagnosed with ET (by chance) age 65 and take 3x 500 Hydroxicarbomide, plus asprin, allopurinol to stop gout and lately Lansoprazole to help with the indegestion that I was getting.

I had platelets at about 920, but they are now down to 220, so I hope the HU can reduce.

Apart from that I feel fine, sometimes a bit tired, but really no different, so I am lucky. Keep hydrated! Life seems to go on and I have found a lot of help from this site.

Keep calm and carry on!

[Spirit123 in reply to Stephen399b]

220 is quite low. What number does your haematologist want you to be at. I was told below 400 would be good.

[funnyfeet]

Hello and welcome,

You will find lots of advice and support here. Everyone is so very helpful and you will get lots of advice if you want it. 

Karen. 

[Tintins]

Hi Steve. I was diagnosed with ET about 3 years ago  and remember feeling very overwhelmed . With time and hearing other people's advice I've got used to it . I find drinking plenty of water helpful and making sure i do things that make happy and enjoying life more. I live more in the moment now . Taking HU was worrying at first but within a few months my platelets came down from 1200 to 400. I sometimes have mouth ulcers but otherwise no side effects. I try to keep up to date with research at patient forums which are great especially meeting other MPN patients and encouraging to hear about the medical advances.