Hi @desmum , thanks for your message, so sorry to read you got this as you were about to retire. I’m also glad to read that you are now managing well with it and are living your life. I’m only taking aspirin at the moment and hoping it’ll stay that way.
I did have a few odd symptoms leading up to my diagnosis and one not very pleasant episode where my sight completely went along with my balance, that was scary but since then, all’s been ok and it was a bit of a relief to find out why my platelets kept rising.
@Hemwood glad to read that your platelets are stable and you’re healthy. It’s really reassuring to know with Essential thrombocythemia (ET) that we can expect to live a normal life span with taking a tablet each day for the rest of our lives. There definitely is light at the end of the tunnel and I feel way more positive than I did.
@Radius , thanks for this. I probably will go for it, I know they numb the area but obviously not the bone. I can cope with uncomfortable, plus I’ll find out if there is anything else going on. Think I’ll do a bit of reading up on it.
Hi - I’ve just signed up to this and wanted to read some stories as today I’ve also been diagnosed with Essential thrombocythemia (ET) and wasn’t sure what this meant at first as I have low risk so currently it’s positive but not been asked to take anything for this yet.
They always use the word cancer but assuming reading the diagnosis here, this means taking aspirins etc where to help thin your blood so it doesn’t clot.
I assume the haemotology department will keep track all the time and if platelets level are high then give you medication to reduce this?
Just trying to understand this and what this means so it’s useful to know from others what is low and high and what does it mean on our daily living?
I’m just reading this and I didn’t have any symptoms but have been diagnosed with Essential thrombocythemia (ET). So means we still able to live ok but sometimes have to be put on medication to control the platelets level right?
Hi @Jules17, we are almost Essential thrombocythemia (ET) twins. I was diagnosed on 20/5/25 with Essential thrombocythemia (ET): JAK2. I felt like my world had ended and was so frightened. I feel calmer now, primarily helped by the fact that I am now under Myeloproliferative neoplasms (MPN) specialist, I felt very unsafe under the original diagnosing team. Hope you’re feeling a bit brighter and more at ease navigating this new world we unwillingly find ourselves in. Happy to keep in touch and compare war stories. I’ve found it helpful talking to people. Take care.
Welcome to our forum. I am sorry to hear about your recent diagnosis of Essential thrombocythemia (ET). I can only imagine what a huge shock that must have been for you.
As you rightly said, Essential thrombocythemia (ET) is a type of blood cancer. It causes your body to make too many blood cells called platelets. It is part of a group of blood cancers called myeloproliferative neoplasms. I have enclosed some information here which you might find helpful Essential Thrombocythemia
Essential thrombocythemia (ET) is a chronic blood cancer and people with it can still live long and healthy lives with it. Treatment can’t cure Essential thrombocythemia (ET), but it aims to protect you from the problems it can cause, like heart attack and stroke. It also aims to control any symptoms you may have. Your haematology team will normally monitor your blood levels every few months if you are low risk and will decide if and when you need to start medication.
I am sure you will get lots more support and advice here from our lovely forum members, but if it would be helpful to talk things through, please do not hesitate to give our specialist nursing support line a call on 0808 2080 888
Thank you so much for this information.
It makes more sense so essentially this type of cancer makes you produce more plalettes but it terms of other types of cancer it sounds like it’s one where you worry abit less and assuming this cannot develop into something else?
I feel more relieved knowing life expectancy of this is the same as normal person.
If platelets levels are then high you will then get given medication to help reduce this as controlling the plalettes?
Thanks
Hi @Jules17. Like yourself, I was a little worried about having a bone marrow biopsy. I was led to understand by my haematologist that it was very helpful in confirming exactly which type of blood cancer I was experiencing. All of the previous data pointed towards Essential thrombocythemia (ET), but the biopsy would confirm once and for all.
Was it very painful? The short answer, in my case, was no. The flesh around my hip bone was anaesthetised locally so there was no pain as such. However it was a little uncomfortable - primarily because I had to lie in a foetal position for the duration and being quite a large bloke, the bed wasn’t quite big enough for me to be able to adopt that position easily. It was also quite a strange experience, whose strangeness was increased due to the fact that I was facing away from the team, staring at a blank wall and therefore there was nothing to think about or otherwise focus on apart from the procedure. However, it was all very quick - perhaps 10 minutes in total - and the team were very willing to give me as much time as I needed afterwards to gather myself together before leaving.
And ultimately it was very useful. Armed with the results of the biopsy, my haematologist was able to confirm that the condition was indeed Essential thrombocythemia (ET) and from there was able to recommend a treatment plan. One year later (more or less), I have now reached a point where my platelet count has come down to 390 and the haematologist has been able to stabilise my dosage of hyrdoxycarbamide at 5000mg per week.
Hope that my experience is helpful. I appreciate that a diagnosis of Essential thrombocythemia (ET) can be an awful lot to take in and can give rise to floods of emotion and doubt. I have learned over the course of the past 18 months or so to trust in the haematology team. Not blindly; I often have lots of questions and challenges at check-ins and if they say anything which I don’t quite understand I always ask them to give me further detail - in layperson’s language - so that I can better grasp the context. On the whole, I have found their advice and recommendations to be very helpful in navigating my condition and learning to live happily with it.
Hi @Cli. It’s very understandable that you have quite a few questions and uncertainties at this time. I think many of us who have had an Essential thrombocythemia (ET) diagnosis will appreciate how those early days feel. I can only talk from my own personal experience but I hope the following may be of some help.
One of the things I do before each check-in with my haematology team is to sit down for a few minutes and jot down any questions, doubts, concerns that are on my mind and I make sure to raise all of these with my haematologist when we meet. This has been very useful. There are so many things which I half-understood, advice which I perhaps misheard or misinterpreted - and having my questions written down so that I can work through them fairly methodically is very helpful.
Hang in there and try not to let the doubts and questions overwhelm you. I’m sure that like many people with Essential thrombocythemia (ET), you’ll become much more knowledgeable about the condition and its treatment over the next few months and earn to live purposefully and well with the diagnosis and its management
You are very welcome. It is completely understandable that you have a lot of questions and concerns.
Whilst it is very rare. Essential thrombocythemia (ET) can progress to another type of blood cancer. It may develop into another type of Myeloproliferative neoplasms (MPN) called myelofibrosis, or into acute myeloid leukaemia (AML).
Medication is recommended by your haematology team based on your age, your level of risk of blood clots as well as your platelet count. Treatment for Essential thrombocythemia (ET) aims to lower your platelet count. This lowers your risk of blood clots.
Hi Aidan
Thanks so much for your advise. It is very much overwhelming at first and takes a few days to digest what this means and how this may affect your life etc.
I will take on board on the list of questions when I next see the haematologist.
At first it’s a shock to hear this as had no idea this kind of blood type exists.
Much appreciated and this forum helps to understand that there are many other people going through the same journey.
Thank you Fiona for the information.
I find this is very useful with the online forum as the booklet I was given had alot of information to digest and to the point….but the way how you have explained this is much easier to understand of what this is and what it could develop into. However now I have been diagnosed I can only be grateful that I will be having these regular check ups etc and can try to live normally.
I’ve recently been diagnosed with essential thrombocythemia as well, im 36 and my platelet levels were 581 the last time they checked my blood, got to have a bone marrow biopsy dreading that. Only on aspirin at the moment, I’ve just joined this and this Is the first thread I’ve read on here and ive found It helpful
Can we all lead a normal lifespan with this condition? Im worried incase It turns Into leukemia and my blood specialist said their Is a small chance of It happening
Hi @RA2000 - a big welcome to our forum. I’m so glad that you found us - it’s a great place to connect and share with others going through similar experiences.
I’m very sorry to hear about your diagnosis. It can be an extremely tough and overwhelming time as you start to process it all. So don’t be afraid to ask all the questions you have - as you are already doing
I have a different blood cancer, but can relate to what you are going through and also your uncertainty around having a bone marrow biopsy. I’ve had a few of these and like @Aidan mentions above it wasn’t as bad as I had anticipated. I also had a local anaesthetic and didn’t find the procedure painful rather it felt uncomfortable and a little bit odd. Of course, everyone one is different. I’d encourage you to talk through your worries with your care team and I always used to take someone with me to hold my hand and be a distraction
I see that you also have questions around lifespan and progression of the condition. All completely understandable questions. One of our specialist support nurses touches on this in the thread above - I’ve pasted here for ease..
If it would be helpful to talk anything through with one of our nurses over the phone or via email, please do get in touch on 0808 2080 888 or via support@bloodcancer.org.uk.
Hello @RA2000 and welcome to this forum. I am glad you have found us. I hope you find it a supportive space where you can share how it really is for you and connect with others. I relate to much of what you have written. I was 35 when diagnosed over thirty years ago. At that time not much was known about these Myeloproliferative neoplasms (MPN)’s. However the first bone marrow biopsy I had revealed I had features of Essential thrombocythemia (ET) combined with MF (myelofibrosis) which has made things more complicated from the word go. However, although there are certainly challenges along the way, I hope I can be of some encouragement to you in that I have lived with this condition for over thirty years. I won’t bombard you with information at this stage as I guess you are already feeling lots of different emotions. Thinking of you very much. Do let us know how you get on if you feel up to it and if I can be of any further help do get in touch. Warm wishes Willow x
Hello @RA2000. I tried to keep on working but I found the fatigue and the fact that I was susceptible to picking up infections meant that it was too much. Fortunately I had a very understanding GP who supported my decision. However I did some voluntary work which I enjoyed. I found that voluntary work put me under less pressure and my colleagues understood if I wasn’t able to work on some days. I wish you well. Willow x
Im worried that’s going to happen to me and the fatigue will get too much, do you mind me asking If you were entitled to any benefits having this condition? Hope you’re keeping well
