I'm 23 and have just been diagnosed with ET after a routine blood test found high platelets. I'm just on asprin now and not to worried about the condition as it stands but I am worried about it progressing.
I've been told it is very rare many times but most figures are between 5 and 10% (Which is not what I would call 'very rare'"). My hematologist says that these figures are for the average patient who is much older than me and therefor has less time for the condition to progress. This would make my odds even worse that 5-10% surely as if I were to make it to normal life expectancy the condition would have to lay around dormant for almost 6 decades.
Does anyone have any figures for young patients or any reassuring words as to why my odds won;t be significantly worse than 1 in 10
Matt
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Hi. I was diagnosed at 37. I don't think anyone will be able to answer your question because very little is known about the progress of this condition for us youngsters! The rarity of the condition means that they just don't have the data available.
Whem I was first diagnosed I went through all the thoughts you are, but I very quickly realised what a waste of time and energy it was to do that. It doesn't change anything or help accept what has happened. I decided that I had to enjoy life and make the best of what I have every day.
welcome to the MPN-ET club. I was diagnosed at 27 and am now 41 - and still very much alive.
I hate to give you this news, but the answer is 'I don't know'. Every case is different, opinions vary and the statistics may give some indications about progression but nothing is definite. ET for me meant very little until 5 years after my diagnosis - I had a thrombotic event. Then, 8 years later, I had another event. I'm doing well now - on a few more meds than aspirin to protect me but I have been advised and I would advise you to eat healthily, avoid high-cholesterol foods, exercise routinely and don't get stressed. . .
Research is ongoing on MPNs and hopefully the next few years will provide us with more answers. For now, be positive and keep in touch with this forum. Arm yourself with information and do as advised by your haematologist. If unhappy / unsure about the advice, seek a second opinion.
Hello Matt, welcome to our forum, we can all completely understand how you are feeling, and although MPNs are considered very rare it is surprising how many people around the world actually have them. We are in the process of putting together more information for young people which we will publish on our website soon, we also have an article with some interviews in our next newsletter, out soon, which features young people. I have asked Prof Harrison at Guy's and St Thomas' Hospital for you about progression and life expectancy as you are young, this is what she said : Leukaemia would be much less than this likely lifetime less than 5%, MF is different but probably 10% lifetime risk is an underestimate for a young patient.
My words of reassurance that patients may develop MF but that is not a life sentence -- there are lots of new treatments available now, and more being trialled, and also lots of trials taking place around the world looking at how MPNs develop, progress etc which will help develop ways of controlling the progression of each of the MPNs, one study is the epidemiology study which is looking at how and why people get MPNs. The future for people with MPNs is very exciting in terms of the progress the medical profession is making in how to treat MPNs.
I hope this has reassured you, you will see from this forum that there are a lot of people who have been living with their MPN for many many years.
What does prof Harisson mean by 10% "lifetime" risk?
"Lifetime" expectansy is 15-20 years for older patients (or even lower!)? So 10% in these 20 years? Aren't there any new clues about young ET patients with 40-50 years of possible life expectansy ahead and progression??
I find it really confused not to know at least the general risk. I read about 1% risk every year. This is totally different than than "lifetime risk" of 1%!
Dear Aneliv9, I understand your concerns regarding progression, you recently asked for advice from Prof Harrison about this on another post, healthunlocked.com/mpnvoice...
Maz has very eloquently put my standard reply to those worrying about the future. Although older than you when diagnosed with ET (44 yrs) I have been in this "club" for 22+ years now. I am one of the small percent that have progressed but I am still excited about the scientific progress happening at the moment and looking for the cure just around the corner! I would be even more excited about the progress being made if I was at the beginning of my journey now. When I was diagnosed there was almost no information on the internet because it was itself in its infancy. Look at how things have changed and try not to worry too much about the future. Very best wishes, Jan
My 15 year old daughter was diagnosed with ET and she is now 18 and has PV she did progress quickly her platelets were over a million and her spleen was 24cm she started out with aspirin, has had two bone marrow aspirations too.
Hi Matt, I was diagnosed with ET in 1999, at the age of 19, and tomorrow I will be 36, so almost half my life I have ET. It didn't progress so far, but I am on interferon treatment because I read that it helps prevent the marrow from scarring. So far it is working, keeps my platelets down and no fibrosis in the marrow.
I believe that because of our age we will live to see the cure for some if not all types of MPDs/MPNs, because when I was diagnosed there was very few information on MPDs, doctors didn't know of JAK2 mutation, CALR or MPL, and I believe we can expect great things in the future.
Are you JAK positive or negative and what are your counts now?
Counts are 730 apparently fort platelets, I don't know what scale that uses, some people talk about being over a million. My hematologist says 400 is normal and 1500 is high risk.
Hemocrit (sp) is just over 45% which I'd where they want it.
My daughter was 15 when she was diagnosed with ET, she is now 18 and has PV to which I take her to the cancer institute and they have her on Hydroxy urea, which is a chemo medication. her platlets were over a million and they have brought them down and stabilized them between 500-700. All we hear is how rare it is and in mostly older people so why the heck did she get it so young. Its all about the Jak2 mutation which makes no sense and it is hard to find any books on anything.
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