New to group - coming to terms with diagnosis

Hi all,

I've recently been diagnosed with ET (awaiting Bone marrow results to confirm) JAK2 positive and taking daily aspirin.

Im a 30 year old female and other than fatigue and light headed/dizziness (which I put down to a busy lifestyle) I haven't really had any other symptoms to date so the diagnosis was a bit of a shock.

Since I've been told the news my emotions are literally all over the place. I constantly find myself worrying about the future and if/when my symptoms will become worse. I've found some posts on here really reassuring and I want to be in a place where I can see this as a positive, as I know I will be closely monitored now and my haematologist will react quickly to any further issues...but I can't get passed the worrying stage yet.

I know everyone will react differently to a diagnosis, but I suppose I'm looking for some reassurance that how I feel is in some way 'normal'

Many thanks

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12 Replies

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  • Hi ET30, and a warm welcome to the forum. It's understandable that your emotions are all over the place at the moment. I think the best thing you can do is to educate yourself as much as possible but from reputable sources such as MPN Voice.

    I was diagnosed with ET (Jak2+) in early 2016. I am 61 years old, so was immediately put on hydroxycarbamide and aspirin. At the time of diagnosis I had no symptoms and only found out through a routine blood test. One year on from diagnosis I feel fine apart from suffering from fatigue from time to time - but that could be partly age related too. I still work part time.

    Like you say you will be monitored closely so try not to worry too much. Ask for print outs of your blood results to so you can self monitor and don't be afraid to ask questions - be your own advocate!

    We're all here to support you.

    Mary x

  • Thanks Mary x

  • Hi ET30, welcome to MPN Voice. I was diangnosed four years ago with ET JAK 2 positive but mine was done through the JAK mutant blood test have not had a BMB as it showed clearly my diagnoses, I take Enteric Coated Asprin, and Hydroxycarbamide.

    At first when told I was devastated, but glad to say once I was introduced to this forum I have never looked back, they are all a great bunch of very rare people.

    If and when you get your results please do not be afraid, talk to us we are all here for one another also get in touch with Maz, at MPN Voice and she will send you booklets and loads of information, also if you want to a buddy who is someone that you can talk too who has the same condition as yourself and knows exactly how you feel.

    Life expectancy with ET is good, I keep fit, eat lots of fruit and veg, drink at least 2 litres of water a day, which is also good for your skin 😃 life is good for me I enjoy every day of it, ok I might have the occasional bad one but that is normal and few and far between.

    One other thing, if you every have a problem please do not do google or Facebook for answers, stick with MPN Voice you will always have someone on here with good advice.

    Oh and one other thing I still enjoy a glass or two of wine, plus I get my hair coloured just thought I would add that.

    Good luck

    Jean

  • Thanks Jean x

  • It affects most in different ways. My advice, contrary to others, is to Google/read as much as you can about ET to enable you to have a reasonable knowledge so that you can understand what you are being told by your Haematologist and you can put together questions that you want answers to.

    On the practical side complete the form to get your prescriptions free and of course if you have a critical illness policy put your claim in.

  • Hi. I was diagnosed in January. I'm a little older (45), but still 'young', given that diagnosis is usually aged 60+. It is scary initially. I found out through the Internet. My GP's surgery phoned me to say an additional test result was back, and asking if I'd had my haematology appointment yet. They mentioned JAK2, and I asked if it was positive or negative and was told it was positive. Cue research and then a trolley full of worry. It think it's ingrained into the human psyche now that cancer is very, very bad with only one outcome. I've quickly learned that with ET and PV, it's not like that at all. I take a massive amount of comfort from this forum. There are people who have been diagnosed for donkeys years. I'm on aspirin only, like yourself. I initially freaked at the news, but now I look at it philosophically. I largely feel fine. I do what I did before, and the main issue for me is fatigue. But it's manageable. I exercise, and I enjoy my life. If anything, it has caused me to really enjoy the here and now. I'm not planning on letting life pass me by. But I keep reminding myself, when I get down, that there are some really vile illnesses out there. So what I say to myself is that it's not what I'd have wished for; I'd rather I didn't have it; but in the wide scheme of things, it could be worse and now I know what the risks are (clotting etc) I'm in good hands with experts who are far cleverer than me and who will help me get to the point where I'm playing with my grand children too. I know it's horrible and scary to start with. But take support from the great people here and you'll find that you do relax over time. Im sure others who have been diagnosed for years and years will say you don't completely forget about the condition, but you will over time find your coping strategy and get on with getting on. Good luck. Ask questions. Knowledge (quality) is key.

  • Hi ET30 Welcome to the forum. You really have come to the right place for support and good information. It is a bit of a shock at first, especially as many of us have no symptoms whatsoever but it is a condition that really does not have to change your life at all apart from taking care of yourself and doing all things in moderation. As far as getting more information of course MPNVoice is great, google is fine if you stick to sites like nhs but I agree with facebook being a no no. Good Luck and don`t worry. Regards Sue

  • From bossybo

    When I was first diagnosed it wasnot called cancer -just `disease`.much easier not to panic over.I,like the others ,live life to the full and it does not worry me at all ,especially as I have a godd consultant who answers every question and treats me like an intelligent being. Good luck!

  • Hello ET30, welcome to our forum, as you can see we all understand how you are feeling, it is a very scary thing to be told that you have a MPN and to read what it is about, but you have had some wise words of advice from the lovely people on this forum, so hopefully you will feel a bit better about it. As Jean has said, I can send you booklets and information about having a buddy, just email me at maz.cd@mpnvoice.org.uk. With regards to looking on the internet, that's fine, it's the thing we all do everyday for information on everything and anything, but I would advise you to stick to checking out information on MPNs from credible organizations, like us mpnvoice.org.uk and of course Macmillan etc. Best wishes, Maz

  • Hi, it is scary when first diagnosed. I am glad you have found this site, I was very relieved when I read some of the posts on here. Previously I had read all sorts of rubbish on other internet sites - 99% of which was untrue!

    There are lots of people on here who live relatively normal lives with ET, I have a lot more trouble from my arthritis than I do the ET. I was diagnosed late in 2010. I started just on aspirin and have had hydroxy and am now on Anagrelide.

    I've had a few ups and downs with the drugs, and my platelets have gone up and down, but I'm hopeful for better results when I go back to the hospital tomorrow.

    Best wishes for the future

    Lizzie x

  • Hi ET30, sorry that you find yourself here, and also welcome! I'm a 39 year old female, diagnosed two years ago at 37 with ET, but was later reclassified to PV (due to elevated hematorcrit). I found out after a routine physical for a nursing program that I had elevated platelets. Long story short, I eventually got a bone marrow biopsy which confirmed Jak2 + status. Like you, the only symptoms I had was nagging light headed was/dizziness, which I also chalked up to being on my feet all day. Nothing else at all to signify an MPN. My hematologist is not a specialist but has been treating other women with PV so he was very familiar with WHO and ASH protocols for diagnosis and treatment. I was on aspirin and phlebotomies only until just last month, when I was put on interferon since my platelets climbed over 1 million.

    When I got the initial diagnosis I was terribly scared. There was definately a sense of doom, and I thought the worst for a while. But, once I allowed myself to just go through the feelings and be scared and sad and disappointed and angry and...and...all sorts of feelings, I eventually moved past it and started living fully again, doing things I usually did without the cloud of worry constantly over me. After a number of months, the only thing that reminded me I had PV was the daily aspirin I took and the occasional phlebotomies (venesections).

    The silver lining (if there is one) is that it has forced me to be much more mindful of how I treat my body and I will say I make healthier choices now: from diet to exercise to hydrating. Nothing extreme really, but I've just gotten into the habit of choosing to live a quality lifestyle in many regards.

    I also learned (over many months of worrying) that worrying doesn't help. It had its place for a while but eventually you too will stop worrying and start getting back to living. It'll happen on its own time but it will happen.

    I will say, being knowledgeable about your MPN via reputable internet outlets and through medical journals make it easier to advocate for yourself when and if you need to. I would encourage it when you're ready.

    Remember that the disease process is as different as there are people in the world. No one goes through this the same. Not everyone has the same symptoms. It is wonderful though to have a community like MPN Voice where there is such diversity that you will probably find someone on here that can relate, help or answer a question. It's been very helpful for me.

    Take care of yourself. Try not to drive yourself crazy with worry. Reach out for support. Hydrate! ;)

  • Thankyou so much for all the responses and advice, I really appreciate it & so glad I found this group!

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