don’t know how I should feel

[Staroftheday]

am feeling confused scared then ok I got diagnosed last month with ET and the Jak2 am currently taking aspirin go to see the doctors tomorrow

[Mostew]

So glad you have found this great forum .

Please don't feel you should feel anything but how you are feeling.! If you are anything like moat of us that will be anxious and unsure...

Do you mean Dr. At hospital? If so...

Make a list of any questions you have to take with

If you don't already, ask for copy of your blood teat results. Someone on here will help make sense of them if you need advice.

Let us know how you get on

Carolyn

[Staroftheday in reply to Mostew]

Thanks ya I feel very anxious I work full time and also help out with child care for my grandson xx

[Scottishterrier]

Please please don't feel afraid I have had et jak2+since 1994 I was young when I was diagnosed with it yes when they say it is a cancer of the blood or bone marrow but it is not malignant as I was told it is chronic but treatable also I have been to the states on holiday with it as long as you take your meds and I have never had a bad consultants but a lot of GPS are not so clued up on MPN's never ever be scared to ask questions when you go to the clinics sometimes they give you a choice of medication if you need additional medication to your aspirin never be afraid to come on here like you have done you will always get a good adviceStay safe

Scottish terrier

[Ratton]

I felt just the same,Don't be afraid you will be fine- I take aspirin and another drug for the platelets-all will be explained to you-which drug does what job etc etc.

Good Luck-take care

Ratton 726

[gset]

It might be worthwhile looking at MPN voice website - there is helpful info and contacts .

[gilded]

Hello! I was recently diagnosed with ET (CALR positive). It was a terrific blow and a shock as I’d never experienced a day’s illness in 79 years! However, with the right medication, regular blood tests, and regular consultations with my clued up Haematologist , I’m confident I’m on course to reach 100! I haven’t altered any habits. Still enjoy a glass or three of wine, partying and socialising. So, to echo Morecambe and Wise:”Look on the bright side of life.” My dog also keeps me on my toes.

[Catbells66]

Hi, I also have ET JAK two positive , I was diagnosed five years ago ( when I was 51) , I was put on asprin , and only recently ( 9 mths ago) I was prescribed hydroxycarbamide which I take alongside asprin.Apart from oral thrush, which they think is connected to taking an oral steroid inhaler for asthma as well, and feeling a wee bit tired now and again I haven't had any side effects. I live a perfectly happy, normal life which includes climbing mountains ! I was petrified when I started the treatment after reading all the side effects , but so far, so good.

Best wishes and all the best x

[hunter5582]

Hello and welcome to the forum. This is the right place to be for support and information.

It is quite normal to be confused and scared at first when you find out that you have a JAK2 positive ET. What you may see with Dr. Google can make it sound quite a lot worse than it actually is for most of us. The reality is that while ET is a "blood cancer" it is not an acute disease. It is a chronic condition that can be successfully managed. Most people with ET live a normal lifespan. You are more likely to die with ET than from it.

There are things to learn about ET and the JAK2 mutation that causes it. One key piece of information is that the JAK2 mutation does more than cause the body to make too many blood cells. It also causes the body to make too many inflammatory cytokines. This is thought to cause many of the secondary/constitutional symptoms we experience with MPNs. At the core, MPNs are inflammatory disorders.

At age 48 and in the absence of co-occurring medical conditions or other risk factors, you would be considered low-risk ET. The normal treatment protocol would be aspirin and monitor. This will help protect you from thrombosis and microvascular symptoms. You will also need to monitor for hemorrhage (bleeding/bruising) which can also occur with ET.

It is very important at this point to consult with a MPN Specialist rather than a regular hematologist. Most doctors have little experience with MPNs, including hematologists. Optimal MPN care requires a doctor with MPN expertise. Here is a list. mpnforum.com/list-hem./

Here are a few links to reliable resources you may find helpful.

mpnvoice.org.uk/

powerfulpatients.org/help-b...

patientpower.info/myeloprol...

FYI - I was diagnosed with ET about 30 years ago. It progressed to PV about 8 years ago. I have lived a rich life and at age 67 continue to do so. There have been some issues to manage, particularly in the last several years. I have had the opportunity to learn how to successfully manage the issues that the MPN and other conditions have caused. Know that you can manage this condition and live a good life too.

All the best.

[Mazcd Partner MPNVoice]

hello Staroftheday, and welcome to our forum. I hope that all went well for you at your appointment yesterday and that you were given some more information. It can be very scary and daunting when you are newly diagnosed, we all understand how you are feeling, so I hope that reading the replies from the lovely people on this forum have helped you as well.

Have a look at the information on our website, mpnvoice.org.uk, there is lots on there to help you understand more about ET, the different medications and lots of practical and general advice.

Take care and best wishes, Maz

[Eloise70]

Hello, I have also very recently been diagnosed with ET. We are at the beginning of a new journey, but there are many fellow travellers who we can refer to for advice & encouragement. That, at least, is positive!

[WileyFrench]

I was diagnosed with ET in 2017. I take low-dose aspirin and Clopidogrel as blood thinners and hydroxyurea to keep platelets in the normal range. I, too, was SO nervous, scared and focused on the diagnosis. Now, 5 years later it’s just something I live with. My travel, exercise and wine consumption have all carried on. This forum was great for info and assurance that I wasn’t alone and it will be for you too I’m sure. One of the best pieces of advice I got here was do NOT Google for answers. The information online is not tailored to you; studies may be small and include people who have conditions you don’t, studies may be out of date and much more. In short it can just cause you to worry for no reason. We have lots of other stuff we can worry about!

[Eloise70 in reply to WileyFrench]

May I ask whether you had side effects from hydroxy?