ET

[Sweetones]

Just diagnosed with ET. put on hydroxyrea. Looking for support and info on treatments.

[wendycu]

This is a great support group.

I’ve had E.T for 10 years now and take hydroxyrea and aspirin. Xx

[Tintins]

Hi. I have ET and was diagnosed 5 years ago. I take asprin and HU. I remember feeling shocked and confused when I was diagnosed. Gradually I have become used to it and life is pretty normal again. This is a fabulous site for picking up advice and remembering we are not alone. There is always someone who has similar experiences to our own. Best wishes.

[Ebot]

Hi. Aside from the posts on this forum check out the MPN Voice website. And I'm sure the lovely Maz will pop up here with an offer to send you leaflets and info about the buddy scheme (it's all on the website). All the best.

[Jellybean129]

Hi Sweetones

You are not alone now you have found this forum. I am ET Jak2 + and just take Clopidagrel at the moment. Diagnosis can be a scary time but don’t panic - the advice here is solid and all who post here are great people who just want to share their experiences and give hope to those who need answers or just a pick me up. Have a look at the MPN Voice website (as mentioned earlier) as it is full of information which you can trust.

All the best to you

Gill xx

[Jocko]

I am 54 ET Cal R+, I am on pegasys interferon alpha, been on it since sept 17. So far so good, to be honest I didn"'t fancy hydroxy. Good luck.

[jamieisabella]

This is a great site you’ll get all the info and support you need from here. Best wishes JW

[Superwoman]

Hi Sweetones, welcome to our forum where you will find many a wonderful and rare people who are all in the same boat but are all here for each other with a good ear and some some sound advice if needed.

I have ET JAK 2posative was diagnosed nearly five years ago now, I take Hydroxycarbamide, Enteric Coated Aspirin, and numerous other tablets and so far all is good, platelets are normal.

A must when taking Hydroxy is to step up your water intake to at least 2ltrs if you can, as this flushes any toxins through your body. Also I now eat a lot of fruit and veg and do a lot more exercise every day this is also for my well being, and to stop my joints seizing up as I turn 69 this year and love life to the full.

So welcome, and can I just say do not do Dr Google as this can can be quite friegtening and can give you unnecessary worry stick to this forum, and if you need anymore information ask Maz, to send you some booklets and if you want to arrange a buddy who you can talk to on a one to one basis.

Take care

Jean

[Superwoman]

Left out water doh!!!

Jean

[Mazcd Partner MPNVoice]

hello Sweetones, welcome to our forum, as the lovely people on here have said, have a look at our website, mpnvoice.org.uk there are some great videos of patients and consultants talking about MPNs. If you would like to have any information booklets posted to you email me at [e-mail]. Kind regards, Maz

[Johnsb]

I am JAK2+ with PV. I have been on Hydroxy and aspirin and phlebotomy for almost a year. My levels slowly creep up over a 7 week period now as opposed to in a week, just a few months ago.

Expect things to change quickly and unexpectedly and know that this is typical. Scary, yes but typical. Also, your body may go through some odd changes as well. But, that too will stable out.

You can expect to be tired at first as the hydroxy kicks in, blood production goes down, and your iron (ferritin) levels drop. That is all expected. Then over a few months, yes months 2-3, you will get accustomed to the drugs and how your body works.

Keep drinking water like people have told you and do some light exercise every day if you can. A short walk for example or more if you can, but not to exhaustion!

Good luck and ask lots of questions.

[mjfin72]

Hi Sweetones welcome to the forum.

I have ET diagnosed in Sept 16. Was on aspirin only until Monday of this week when I started Hydroxy. There is always plenty of good advice on this forum.

Wishing you well.

Mandy

[Roger41]

Hi Sweettones.

Every thing has been said.

I bought,a small salt lamp, this helps with mood swings.

Try to get a balence between, diet, sleep, exercise and sound common sense information.

Get a good team around you, don't go it alone, as this is not necessarily appropriate, be consistent with your medication and keep a diary on how you are doing.

All of us on here have been in the same space as your are now.

This condition as rare as it is is manageable and it is not life debilitating.

I enjoy holidays abroad, aplenty, keeping fit, the occasional gin and tonic and trying new exciting things like a sponsored zip line adventure on March the 20, at Bournmouth??????

So if anyone out there is not doing anything that afternoon. Come and join me and make yourself known to me.

I am attending an inner wheel conference until Thursday so remember you are not alone.

[Wyebird]

Hi Sweetones,

I was diagnosed with ET Calr in October 2015. I’m on hydroxicarbomide and and other meds for other illnesses. I was devasted. It’s taken me over two years to come to terms with it, mostly down to another underlying medical issue that surfaced due to my ET fatigue. I now usually forget I’ve got it.

This forum offers little tit bits of valuable advice and info. Along with Maz of course.

Don’t be afraid to ask what you might think, even the most trivial of questions.

Best wishes,

Wyebird

[forwardocho]

I was diagnosed January 2016. I'm on HU and have just been taken off aspirin altogether. This group is very helpful and supportive. Welcome to the family!

[Coradelphine]

I was diagnosed with ET back in 2003. I was on hydroxy for years and didn’t have a problem. I was put on anagralide some years ago because it was so difficult to get my playlets stable. Although it’s rare it doesn’t really affect your life span so I put it in a box at the back of my mind and rarely think about it. The incident rate is 1.5 in every 225,000 we are pretty special people!🤗!

Keep smiling, getting your blood tested and taking your tablets and enjoy your life👍