Hello everyone out there in the MPN community. I would just like to introduce myself. My name is Mary, I am nearly 61 and have been recently diagnosed with Essential Thrombocythemia -Jak2 positive. I have been on aspirin for the last three months awaiting diagnosis, and after seeing hematologist have been prescribed hydroxyeura (hope I've spelt that right). So far I have taken the news very well - but I'm sure that there will be day's when I'll appreciate your support. May I thank yoiu in advance for that.


17 Replies

  • Hi Mary, My Daughter has ET also, she is 16 years old and was diagnosed a few months ago. You are in the right place for reliable information and lots of support. We first came to the forum a couple of months back and everyone is so supportive and we learned so much. My Daughter takes aspirin daily but has not yet been given any other medication so we have little experience of the meds. I'm sure it won't be long before you get lots of "welcomes" and the forum is great for asking questions and getting lots of reassurance :)

    Sue x

  • Hi Sue,

    My daughter is 19 and was diagnosed 3 months ago, you are the first person I have come across in the same circumstances as me , we are still coming to terms with this, up one day and down the next....

  • Hi, My daughter was diagnosed in January so we are just a little bit further in than you are. It's such a difficult time for her as she is at the moment taking her GCSE's. We have found this site and MPN Voice such a great help. Our Consultant has given us little info and left us with 3 monthly blood tests and the next outpatient visit in August so we were feeling like we've been left out in the cold a bit! We are thinking about getting an appointment with Prof Harrison at Guy's to get a bit more reassurance and we'll sort that out when her exams are all done. It is hard when it's your "child", I would much rather have the condition myself than my Daughter have it. But it is what it is and given time it will become just part of everyday life. We have found so much information through this forum and also with MPN Voice which has been such a comfort. You're not alone and this forum is great, real people with real experience of the condition, no disrespect to the professionals but they know the "science" of it but the people on here live with it and know how their bodies feel x :)

  • Hi Sue,

    I cannot imagine for one moment how it must be as a Mother to have a child diagnosed with an MPN. I think you have definitely chosen the right path with Professor Harrison. I watched her on a you tube video speaking at an MPN conference and she certainly sounds like she has expert knowledge in this field - also endorsed by people on this site. I too have found this site a great comfort - just knowing there are people out there who understand makes all the difference.

    How has your daughter taken the diagnosis?

    Thinking of you


  • Hi Mary, My Daughter didn't take it very well in the beginning. It's taken up until 2 weeks ago for it to sink in and she although she and I talked about things a lot she didn't tell her friends etc. She suddenly decided 2 weeks ago to put a post on Facebook to all her friends explaining why she had been off school etc. She has had nothing but lovely comments and support since then and it really has made a huge difference now people understand. I think that was the point when she accepted the condition and she has been a lot happier since :) x

  • Hi Sue,

    Thanks for replying, my daughter started uni last September and she also has been hesitant about telling anyone yet except very close friends. We also had an appointment with a haematologist and then left with questions and no one to ask.

    Best of luck to your daughter with her GCSE'S

  • Hi Mary - welcome! I have ET CALR +ve. Diagnosed 13 years ago and only on aspirin till last year, when rising platelets (1100) and advancing years (60 next week..!) led to me starting treatment with Pegasys, which has worked very well so far. I'm lucky to be free of ET symptoms and drug side effects so I live a pretty normal life and no longer give ET much thought on a daily basis. This forum and the MPN Voice site are great sources of information and support so explore them as much as you can. Good luck..! Andy

  • make that hydroxyurea! or hydroxycarbamide or just hydroxy :-)

  • Hi Mary

    I have an MPN "unclassified" - they can't pin down an exact diagnosis - and take a fairly high dose of Hydroxy with no real problems, fatigue being the main issue. I manage this by doing everything earlier in the day rather than later and going to bed very early. On the whole I'm doing fine and am sure a positive attitude helps so keep "taking the news well" - I determined I would not let this thing rule or ruin my life! I was diagnosed 3.5 years ago and see my haematologist regularly for FBC. I'm sure you'll find reading the posts in this site very encouraging and helpful and everyone is very friendly. Best wishes, Frances.

  • I would just like to thank everyone who has warmly welcomed me.

    There is one question that I would like to ask (I'm sure there will be many more later). Does anyone know what the 'allele burden' linked to jak2 positive is and what it means for the individual? An 'Essential Thrombocythemia' diagnosis is very complex, and I'm trying to slowly educate myself to strange medical terms and what it means for me.

    My platelet count is only 500 (steady since October last year). I have no symptoms and am 'heart healthy,' low blood pressure, good cholesterol levels - so I was hoping to get away with just aspirin, but presumably my age (60) and jak2 status determines that I have to go down the hydroxy path?

    Whoops, 2 questions!


  • Hello and welcome! I can tell you this, I am from the US and I saw two experts here in the US, they both said there is no magic number (as far as age) to go on medicine. They both also said it is a natural thing that our arteries age and narrow as we get older and we have more problems but they do not count that as a risk factor, they take everything else into consideration, your current health, blood work and symptoms. They were both True Experts and It get quite confusing because there is a lot of disagreement among the experts today but I think more and more are leaning that magic number of 60 being no more. Most local Hemo Dr put you on medicine right away once your over 60. Your platelet counts is very low, I would see an expert before you went down the medicine path. much luck, I am 64, was 63 when diag. My platelets were much higher then yours

  • Hi Mickey,

    thanks for your response. I did question the Consultant about my platelets being only 500, and she said something along the lines when platelets are just over as in my case they act in a more adverse way (clumping together) than people with really high counts. Indeed, it is all very complex!! She also said if it wasn't for my age I would only be intermediate risk. I suppose I wouldn't ever be low risk because of the jak2 positive status? She also pointed out the risk of heart attacks and strokes and highlighted the disabilities associated with that. It was this in particular that made me decide to try the hydroxy. I just have to hope that she has my best interest at heart. I will be back at clinic in a couple of weeks so I guess I can ask more questions then. How about you, do you have many symptoms and how are you coping ?


  • Hi Mary and welcome to the site.

    You will gets lots of advice and support from all the lovely people here.

    Good luck.

    Karen. X

  • Hi Mary, welcome to the MPN family. You can visit sites but you will never find better help and support than you do here. Everyone is going through the same thing so their knowledge and experience is invaluable. We all seem to have had problems getting medical experts to understand what is happening to our bodies, this being due to the rarity of the disease. I hope you find what you need here, at the least you will find good friends


  • Hi Mary please do see an expert in this disease. It sounds like you are completely free of symptoms and any other issues only to be put on medicine because of age?. The age thing is slowing going away with many of the experts here in the US. Many of the MPN experts are saying there is no magic number to start medication it is others things combined. Although over 60 people it is known they have much more difficulty that is true but it should be based on the indivudual. You are very low on your platelets also. Welcome to this site it is a very good site. Mickey

  • Hello.

    I am 65 and diagnosed in February with ET/ JAK2 +. My platelets were 970 and now down to 230. The one thing to watch is that whites/reds don't fall too much at the same time. I have felt pretty good but over last few weeks have got more tired, especially after a day at work. Perhaps down to lower reds=less oxygen? I am with very experienced Haematologist in Birmingham, but you do have to pester for answers and be careful not to get Google paranoia! This site is fantastic for good advice from real people.


  • Welcome Mary. We are all here to support one another. Keep us up to date with whatever is going on with you. XX Harlie

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