I’m Alix, a 43 year old woman living in Hertfordshire and have just (literally this evening) been diagnosed with essential thrombocythaemia. The platelet issue was picked up a couple of years ago after a thyroid blood test and this has been going on and on so I’m kind of relieved to know what’s happening but also scared and trying to learn as much as I can.
I’ve been told I need to go for an abdominal ultrasound and a bone marrow biopsy in the next couple of weeks and that my platelets aren’t very high just higher than they should be. The doctor also kept saying I was ‘so young!’ which was nice haha! I’m on 75mg of aspirin daily ‘for a very, very long time’ according to the doctor.
Sorry to rant - just trying to come to terms with everything and hoping to find other people going through the same thing.
Hello @alix and welcome to this forum although I guess you’d rather not be here. However I am glad you have found us so soon after your diagnosis. I trust you will find this a supportive space where you can say how you are feeling and share experiences with others in similar situations.
My story is that I was diagnosed at age 35 with an MPN (Myeloproliferative neoplasms) that had features of Essential thrombocythemia (ET) and myelofibrosis. This was over thirty years ago and in more recent years the disease has transformed and now has no features of Essential thrombocythemia (ET), just 100% myelofibrosis. At diagnosis my platelet count was over 1,000 so I needed treatment straightaway to lower my platelets. I won’t bombard you with too much information at this stage but wanted to hopefully encourage you that so much more is known about these MPN (Myeloproliferative neoplasms)’s these days. There are much better treatments than there were thirty years ago but hopefully all you will need is the aspirin to protect you from blood clots. My disease was rather complicated from the outset, whereas yours sounds more straightforward. I do understand what it feels like to be diagnosed at a young age with a condition that no one has ever heard of! It felt very lonely and confusing for me but of course I didn’t have this wonderful forum thirty years ago and had to try to find my own support.
I wish you well with your forthcoming investigations. I don’t think you have ranted at all so there is no need to apologise. Warm wishes Willow x
Hello there @alix, welcome to the forum. I’m so sorry to read of your diagnosis with Essential thrombocythemia (ET), but am glad you felt a sense of relief. Funnily enough I think I did too when I was diagnosed with another closely related type of MPN (Myeloproliferative neoplasms) called Polycythaemia vera (PV). Think I’d rather know what I’d be dealing with than tolerate all the anxious unknowns, I reckon.
Although I’m not a doctor, it sounds like you’re having tests that are typical with diagnoses like these. Perhaps when you fancy a read here’s the great Blood Cancer UK information about Essential thrombocythemia (ET): Essential thrombocythaemia | Blood Cancer UK
My doctors also called me young at diagnosis, although I suddenly felt aged by decades! I get the impression that people are usually diagnosed with MPN (Myeloproliferative neoplasms) later in life, so when diagnosed under age 60 we’re considered young and less at risk, unless there are additional health concerns. My haematologist tells me we can live into normal old age with these MPN (Myeloproliferative neoplasms) and that they’re unlikely to be our causes of death. Sounds good enough to me!
Thought you may be interested to know that sometimes our spleens can start producing blood cells with these MPN (Myeloproliferative neoplasms), hence why an ultrasound is done to check spleen size. As your platelets aren’t very high I would say try to take this as good news. It’s when our platelets are elevated that we are more at risk of blood clots, which carry on as our main risk. Treatments like that aspirin will help lower clotting risks.
There are many lovely forum members, like dear @Willow, who have years of lived experiences with these dratted MPN (Myeloproliferative neoplasms), and I wish you well too. We’re here for you as you go through testing, but please know you are not alone with that diagnosis. Perhaps you might like to see how other folks living with Essential thrombocythemia (ET) are managing in this lovely supportive thread: ET diagnosis finally sinking in
Thinking of you @alix, do please keep us posted about how you get on.
Welcome to the forum, and thank you for taking time to send on your post.
I had my diagnosis in April 25, and I remember how I felt, and I think I lost count of all the different emotions, but with time things got a little easier.
That said everyone is different, so its fair to say you’ll handle things in your own way and in your own time.
Welcome to the forum. I’ve only been on the forum since the start of the year but was diagnosed with Myelofibrosis in October 2023.
It’s always a shock when you get your diagnosis. There’s a lot to take in.
At the same time there’s so much information and support here on the forum.
My strategy from day 1 has been to take things a day at a time.
I’m sure others will say that it can be a bit of rollercoaster. That’s definitely a phrase I can relate to.
My advice would be to work collaboratively with your clinical team. Write down questions you have and if possible have someone with you at appointments who can take notes for you.
And remember to ask even if it seems like a trivial question.