Hi all, just want to introduce myself, I’m Julia. I found out on 21st May that I have Essential thrombocythemia (ET), the JAK-2 kind. I’m a bit shocked and a bit scared but also relieved to know what is wrong with me after lots of blood tests and Hospital visits.
After specialist blood tests the Hospital gave me an appointment for mid July. The results took about 3 weeks and then my appointment was brought forward to 21st May so I knew I was going to be told something that I wasn’t going to particularly like.
I’m still coming to terms with this diagnosis and am experiencing mixed emotions, one minute ok and the next feeling a bit tearful.
Fortunately my platelets although high, are at the low end of high and I only need 75mg aspirin for the time being. I’m very encouraged by the stories I’ve read so far, both on here and on the website.
Wishing everyone on here the best of luck in your journey.
Hi @Jules17 I am so glad that you have found us, welcome to our support forum.
Reading your post brought back to me such similar thoughts and feelings as you are having, I think that they are completely natural, even those oscillating ones, because you have had a shock and I remember being in shock for ages.
Just take your time, really look after yourself and be very kind to yourself and please do keep posting as I look forward to hearing more about you.
Welcome to the Essential thrombocythemia (ET) club!! I was diagnosed with Essential thrombocythemia (ET) and Chronic lymphocytic leukaemia (CLL) just over a year ago and I remember vividly crying at night that I wouldn’t see the grandchildren grow up and scared at the thought of what was going to happen and how long I would have. Once I received my diagnosis I strangely felt more relaxed about it- sort of what would be would be! Roll on a year and interferon injections have brought my platelets down well into the normal range and I’m feeling better than I’ve felt for a long time.
My consultant gave me a very negative prognosis but having joined this forum as well as attending a conference it’s amazing to hear how well people are defying their prognosis’s.
So take heart, and live life to the full whilst taking as much rest time as you need!
@Jules17
Sounds like I have the same story as you.
The first week I was a mess but after Di ding this forum and seeing a different consultant I’m actually in a good place about it.
Hi Erica, thank you for your lovely message, it’s been really helpful to have been directed to this forum. I’m glad to know the feelings are normal. I’m actually comforted by the fact that this Essential thrombocythemia (ET) has a good prognosis in that you can be expected to live out a normal lifespan providing it doesn’t mutate into something more sinister.
May I ask how long you’ve been living with it? I’m hoping that when I get used to it, it won’t seem as bad. I’m thankful too that there doesn’t seem to be an urgency with any treatment which I take as a big positive.
I intend to keep up my exercise as that helps and I will take more ‘me time’ too
Thanks for your message. I’m glad to hear that you’re in a better place about it. This forum and the website has made me feel more positive about the future so I’m getting there in coming to terms with it all the best with your journey x
Hi Gillyj, thanks for your lovely message. I’m sorry to hear you’ve got both Essential thrombocythemia (ET) and Chronic lymphocytic leukaemia (CLL), that must have been extremely difficult to deal with and I can’t imagine the anxiety it caused you. I consider myself fortunate to just have the Essential thrombocythemia (ET). There is also no urgency with my appointments and treatment too which I’m all taking as a big positive.
I think finding out you’ve got something that isnt going to go away and it’s hearing that C word that panics you.
I’m so pleased to hear you’re responding well to the treatment and are feeling well in yourself too. I certainly intend to carry on with as normal life as possible but not feeling guilty about taking ‘me time’ too. I noticed a decline in my energy levels leading up to all this so like you said, it’s also a relief to find out what’s wrong and understand why I’ve been feeling different in certain aspects of my life.
I wish you all the very best in your journey you’ve made me feel a lot more positive
Hi @Jules17 Just to make it clear I actually have another blood cancer, Chronic lymphocytic leukaemia (CLL), but shared and share similar thoughts and emotions to you.
I was diagnosed 21 yrs ago and I have always been on active monitoring and manage my symptoms.
I went on a stunning walk in a park today.
I am work in progress on the ‘me time’ , it is my New Years Resolution every year!!
Sorry to hear you have Chronic lymphocytic leukaemia (CLL), I’m really pleased to read that you’re managing your symptoms though and you’ve been doing it for a long time, a very encouraging read so thank you for sharing that.
I think to begin with it’s the emotions of finding out you have a life-long condition that you weren’t expecting. I’m sure as the weeks turn into months and then years that I’ll live side by side with it and all will be ok.
I do have a positive mindset and will continue with that. I work full time and exercise regularly and that really helps.
Good luck with sorting that new year’s resolution for more ‘you time’
Hi Julia.
I too have Essential thrombocythemia (ET) having been diagnosed over 10 years ago. After a routine blood test I was informed that I had a platelet count of over 1,000! The haematologist I then saw explained that he suspected Essential thrombocythemia (ET) and confirmed it after a bone marrow biopsy which also revealed a faulty Jak 2 gene.
I was initially on hydroxycarbamide which quickly reduced my platelet count. After a few years I was prescribed an additional oral chemo medication, Anagrelide. My hospital carries out a quarterly review, face to face or over the phone, following blood tests.
Other than unrelated illnesses I’ve never had a problem with Essential thrombocythemia (ET) and lead an otherwise normal life.
I wish you the same Julia,
Best wishes, Ray
Thanks for your message - I’m very glad to hear that you’ve never had a problem with Essential thrombocythemia (ET) and are leading a normal life - its very encouraging to read this. IIt’s good to know that there is medication that can lower the platelet count and fortunately, mines on the very low end of high so I’m ticking along with 75mg of Aspirin and hopefully it’ll stay that way for a while!
I’m currently considering the bone marrow biopsy but I’m going to wait until after my next lot of blood tests which are due in August. I don’t really like the idea of it and have been told it’s painful so I guess I’m waiting to find out if its really necessary at this early stage.
It’s been well over a month now since I found out and to be honest, I’m feeling a lot more settled about it than I was, which is good.
Thank you for your very encouraging message and I wish you all the best in your journey.
Hi @Jules17 .. to give you some encouragement I was diagnosed two years ago with Essential thrombocythemia (ET) JAK2 and platelets around 550.. now back in range and on regimen of hydroxycarbamide and aspirin.. Have just completed my first Macmillan mighty hike in the Yorkshire dales in just under 9 hours ,. so keeping going and living with it .,.. and doing a mighty hike certainly gave a positive mindset
Hi Julia
If you’re recommended to have a bone marrow biopsy I would do it. I’ve had 3 over the years and have found them uncomfortable but not painful.
Ray
Hi Julia, hope you are well. I too have Essential Thrombocythaemia and although initially it can be scary you soon get used to carrying on with life. I’ve had it for at least 17 years and only take an aspirin a day. I get a few pains in the fingers but have been lucky so far. I hope it all goes well with you.
Hi Julia - i was diagnosed with Jak2 Essential thrombocythemia (ET) about 11yrs ago just when I was about to retire! Like you I had all sorts going through my mind - i was put on daily chemo tablets (Hydroxycarbamide) that brought my plateletts down - i have my bloods done about every 2 months and the chemo is adjusted accordingly and apart from one blip ive remained really well and carry on with my life as normal - I had no symptoms beforehand at all so it came out of the blue for me but I’m grateful it was discovered before it caused any major problems - this site is invaluable if you have any concerna or questions - take care
Hi Jules! Welcome! I’m new here also, my name is Sue. I was diagnosed Essential thrombocythemia (ET) November 2024. I have calr mutation and also stage 1 myelofibrosis although no other symptoms of mf. Platelets were 1698 when I was diagnosed! Crazy high! 7 months later now on hydroxyurea 1500mg/1000 mg alternating days and platelets are close to normal but not quite. I also take an aspirin every day. I have experienced a wide range of emotions but my oncologist is very optimistic about my prognosis even with the mf. It’s something to keep track of and watch closely of course but I have resigned myself to living my best life, eating as healthy as I can and STAYING ACTIVE! At 63, I still work, have a ranch and I refuse to give up doing the things I want to do. I found that the first few months were hard because so many DR appts, labs, scans, etc and I just wanted to go back to my normal life, so that’s exactly what I did. I trust my DR, do what he says and keep on truckin! You will get there also! It takes a little time, give yourself some space and it’s ok to have a pity party every now and then!! God bless!!!
Hi, It’s always a shock to have the diagnosis, so I do understand. I was diagnosed with Essential thrombocythemia (ET) (CALr mutation) just over a year ago. Now a year later, my platelets are stable and, although I have to take Hydroxycarbamide every day for the rest of my life, I am healthy and my blood tests are now every three months. I have been assured that I can look forward to a normal life span. There is light at the end of the tunnel. Good luck everyone .
Hi @philip1 thanks for your message, that’s an amazing achievement and so inspiring to read. I’m so encouraged by the positivity on here, it’s certainly helping me keep a positive outlook. My platelet count was around the same as yours back in May, so hoping they’ve not changed too much when I go again in August. I’m going to the gym regularly and walking a lot in between working , plus keeping a good social life. Reading of your hike will set me a goal now
Hi @JDT, thanks for your message. I’m really pleased to read that you’ve managed well for 17 years and only taking the aspirin. I hope I manage the same and reading this has made me even more positive that it is something that can be managed.
Wishing you all the best in your continuing journey.
Hi @Sueogle, thanks for your message, so glad to read that you are living well with this and staying super active. It sounds like you had a bit of a tough time at the start with all the appointments, but now it’s more under control it’s great to read that you are living life to full as best you can.
I know fatigue can be a side effect’ with this but fortunately I’m not really suffering with that thankfully so like you, I’m keeping as active as I can with work, the gym and of course socialising, which is very important
Now that I’m about 6 weeks in I’m definitely not as stressed about it as I was and reading all these lovely positive messages has really helped my outlook, so thank you all.
all the best with your journey x