Hello Everyone, after being diagnosed with Essential thrombocythemia (ET) in 2023, just a few months before helping my beautiful Mum during her final weeks with MLD, I am now actively searching for some much needed support as I am struggling to do this alone. Then I came across this wonderful group. I just wanted to say ‘hi’ and introduce myself. My blood count is climbing each year, and I am trying not to feel too helpless about the fact that there are no cures; instead I focus my dream of watching my children all grow up, and to be the best Grandmum I can possibly be to their littles. I find it odd that Essential thrombocythemia (ET) is apparently not hereditary, and yet my Mum passed from an equally rare blood cancer in the same family. I am also actively searching for any trials I might be able to take part in. After having multiple blood clot episodes throughout my life prior to being diagnosed (a brain embolism when I was 19, a heart attack when I was 28, multiple miscarriages and on it goes) I am hopeful that a trial will come out that I am suitable for, and offers a hopeful prognosis. So there it is, I apologise if I am in the wrong place to do this, or if I have spoken too much about myself. Thanks to everyone here, just knowing there are so many other people in a similar boat really does help.
Good morning @Nikkie
Welcome to the group, and thank you for taking time to post. I too have found the group incredibly supportive.
My heart goes out to you as you given your circumstance. I am a Chronic lymphocytic leukaemia (CLL) patient and i too have come to realise that there is no cure, but my experience to date has been a positive one, keeping a good diet, taking exercise and resting (including a good sleep pattern)
Do feel free to post on the forum, as you will find it a great source of comfort and information that I hope helps you.
Take good care of yourself.
Mike.
Thanks so much Mike! How wonderful it is to hear you sound so calm and positive with your diagnosis - one which I am sorry to hear you have. I am struggling with a healthy sleep patterns, this is a big one! I’m currently experimenting with different supplements that help to get a restful sleep through the night without multiple wakings - and to find the discipline to get to bed at a reasonable time. And yes, exercise! You have given me another reminder of my need to improve there as well. Take care, and again, thank you!
Hello there @Nikkie, a great big welcome to the forum to you. I’m so sorry to read of your diagnosis with Essential thrombocythemia (Essential thrombocythemia (Essential thrombocythemia (ET))) and all those years of serious health concerns and losing your mum, I’m in awe of how much you’ve handled.
Just wanted to say I love your attitude about wanting to seek ways to treat that Essential thrombocythemia (Essential thrombocythemia (Essential thrombocythemia (ET))) like trials, and perhaps you might be surprised to know there are many treatments already available.
Although I live with a different blood cancer called Polycythaemia vera (Polycythaemia vera (Polycythaemia vera (PV))), it’s in the same family of disorders as Essential thrombocythemia (Essential thrombocythemia (Essential thrombocythemia (ET))) called Myeloproliferative neoplasms (Myeloproliferative neoplasms (Myeloproliferative neoplasms (MPN))). Our treatments are often very similar as we live with the same potential symptoms of our bodies overproducing blood cells and risks of clotting.
Maybe you’d like to read the great Blood Cancer UK information about Essential thrombocythemia (Essential thrombocythemia (Essential thrombocythemia (ET))): Essential thrombocythaemia | Blood Cancer UK
Here’s their information about Myeloproliferative neoplasms (Myeloproliferative neoplasms (Myeloproliferative neoplasms (MPN))): What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK
Like you, I had a heart attack many moons ago and lived to tell the tale. I now believe it was likely an early sign of Polycythaemia vera (Polycythaemia vera (PV)), like other blood-related health concerns I’ve had. Thank goodness we survived, right?!
So I’d say from my non-medical perspective that if our blood cell numbers get too high too often then that’s when treatments typically start. I was classed as being at high risk at diagnosis so was put straight onto daily hydroxyurea, a ‘mild’ type of chemotherapy. It slows down our bodies overproducing blood cells and thus minimises our risk of clotting. There are other similar medicines that folks around the forum who live with Essential thrombocythemia (ET) take instead. Some people don’t need active treatment at all but we all should have regular blood tests and checkups.
Something my lovely haematologist reminds me of, which I like to share around the forum, is that we can live into normal old age with Essential thrombocythemia (ET) and Polycythaemia vera (PV) with minimal adaptations. We’re more likely to pass away with these Myeloproliferative neoplasms (MPN) than due to them.
Anway, that’s probably more than enough from me! I hope you find the forum supportive @Nikkie, I see @GenesisDevice has already offered a lovely welcome.
Maybe have a look around for others living with Essential thrombocythemia (ET) as you’re not alone with it anymore.