Diagnosed ET CALR mutation 30/12/25

[Niks85]

Hi everyone. Newbie here! I just want to firstly say I feel that finding this forum has really helped me. To read so many different experiences/stories from so many other people across the world who have also been diagnosed Essential thrombocythemia (ET) really makes me feel not alone in this. So thank you everyone .

So my story is ( apologises for the lenghtyness ) back end of 2023 I developed ulnar neuritis in my right elbow. Ended up having 6 months of work, numerous bloods then referred to a specialist. Given my blood results at the time I was referred for a scan. Thankfully all organs where fine and no bleeding. My injury eventually went away. This ended around March 2023 whilst living in Nottingham. In April 2024 my marriage ended abruptly leading me into a mental health crisis. I can confidently say that I did the work and have came out of that state as a new person now. Throughout 2025 I believe I had about 14-17 blood tests carried out from around June - December 2025 as I was just always feeling exhausted. I assumed being a single mum to a little 3/4 and working fulltime was the reason so assumed maybe B12s would help massively. However my GP believed I was anemic but never prescribed me any medication. Come Sept 2025 - December 2025 literally back to back for those 3 months i was on antibiotics. I had a chest infection then conjunctivitis and then 3 days later tonsilitus. So you can imagine just how shattered I was by the time Christmas break came. Anyways my results where all coming back abnormal but GP wouldn’t put a distinct “label” on it until I was referred to to diagnostic clinic for yet again more blood tests in Mid November 2025. I didnt recieve my results from that, rather instead get told I have an apt with the haematologist on 30th Dec 25 for yes again… another blood test but a review directly after. It was then that I was eventually identified as having Essential thrombocythemia (ET). I remember going into the room and when the Dr asked me how I am I straight up asked “ is it leukemia or cancer “ think I stumped him for a while tbh. He went around the house and it was only after looking again on the system notes did he tell me I have Essential thrombocythemia (ET) w/CALR mutation. With that he quickly went outside to welcome me with what I now believe the be the “Red Bible” that Im lead to believe we have all had the pleasure of being past over from the specialist. I remember asking him whilst looking at this red book that had the C word on it…. So I have cancer…. His response “ we dont like to refer to it as that” my ADHD at this point is going into overdrive and nothingness all at once with the confusion. He then says that I’m classed as a young patient (40 yrs old) and aspirin a day and bloods/reviews every 3 months will now be my norm. Obviously (for me anyways) with the C word being seen I’m thinking wtf how long do I have etc etc. Dr says cause of my age and all my other results (white cells, iron etc) all being fine then come my 60s I may have to take a “little” chemo pill daily. Im so dissociating at this point i dont know what to do verbally or physically. So… I ended up crying for a bit whilst in the room. The drive back home all I kept saying out loud to myself was “okay. Okay.” “Wtf” literally I was just on loop with these two quotes all the way home. I tell me parents ( as me and my daughter are currently living with them til my divorce/sale of house goes through). Everyone is in this state of disbelief, upset, anger, shock… like non of my family have ever heard of this before or been around it before. So we are all like in a forest of darkness about it. Just being sensitive to the C word as the backbone to our immediate feelings.

This past week has been crazy in terms of emotions, vision of my future and so fourth. Its such a peculiar thing to experience, for me at least….

Christmas 2025 has without a doubt been the maddest year I have ever experience. Having this diagnosis, being diagnosed with ADHD and unfortunately my nan passing away on boxing day……

… I dont really know at the moment how to explain my feelings. I think a few words would be euphoric, confused, lost… it’s just a very, very weird time

I mean given my mental crisis last year Im no newbie to having a cluster or thoughts of feelings BUT this, this experience is quite something.

Back to work tomorrow after christmas break and will be meeting with my line manager to discuss every that has happened over the past 2 weeks. Its that all it has been! That’s mad. Hopefully the conversation will go well x

Sorry everyone. Maybe I should have written all this in a journal or something. Just dont have the time at present single parent, 4 year old girl on school holiday etc x

[FunshineBear]

Hello Niks85

First time on the forum for me but I read your post and felt compelled to respond. I think you’re doing amazingly well considering everything you’re going through.

I also have been diagnosed with Essential thrombocythemia (ET) Calr mutation. (Found out in September) Finding it hard to carry on as normal because it’s always there at the back of your mind, niggling away. I’ve had other health issues in the past such as abrupt premature menopause at 37 and heart surgery at 43. (I’m 47) So adding this diagnosis to everything is a bit of a kick in the teeth.

Anyway, I just wanted to say that I’m glad you reached out and I hope you feel listened to and supported, even if it is by total strangers…or as I like to describe us… fellow mutants (Doing my best to tackle this shoddy situation with humour) Your post helped me by reminding me, that even though we have rare illnesses, we’re certainly not alone, and reading other people’s stories helps to calm the fears somewhat.

Stay strong

FunshineBear

[David293]

Hello Niks85

Welcome to the Forum and please post and reach out. I also have Essential thrombocythemia (ET) - caused by a JAK2 mutation. I was diagnosed in June 2024 and had a similar meeting with a hematologist and was left with lots of questions and quite a lot of confusion. I am 57 and have been taking chemo tablets - hydroxycarbamide since June 2024. At first it was tiring, with lots and lots of thoughts and questions. However, as the months progressed and I got used to the diagnosis, things have got better and easier. Life is pretty much back to normal. I take a couple of tablets at night and do pretty much what I did before my diagnosis. It may help to speak with our @BloodCancerUK_Nurses on the Support Line (0808 2080 888). They are a source of clear, reliable medical information, which is particularly helpful when trying to navigate so much new information, but they’re also incredibly skilled at helping people navigate the emotional side of a diagnosis; the fear, the uncertainty, how it affects day-to-day life and relationships.

[Duncan]

Hello there folks, welcome to the forum @Niks85, @FunshineBear and @David293. Perhaps you already know the forum well @David293 as a support volunteer but I just wanted to say hello to my fellow Myeloproliferative neoplasms (MPN) survivors in this friendly new thread.

I’m really sorry you all had reason to find the forum and for your Essential thrombocythemia (ET) diagnoses. In 2023 I was diagnosed with the JAK2 gene mutation and Polycythaemia vera (PV) which I’m sure you know is closely related to Essential thrombocythemia (ET). Perhaps you’d like to read the great Blood Cancer UK information about Essential thrombocythemia (ET): Essential thrombocythaemia | Blood Cancer UK

This section describes gene mutations like CALR and JAK2 and how they might present in Essential thrombocythemia (ET), which may be of interest: What is essential thrombocythaemia (ET)? | Blood Cancer UK

Like you @David293 I take daily hydroxyurea and also experienced something like tiredness, and am feeling mostly back to normal in terms of energy. It’s still amazing to me that I can walk about living with this invisible blood cancer, getting out into nature, popping into the supermarket… I’m very grateful we have these treatment options and that there are others should hydroxyurea stop working so well.

My first haematologist tried telling me that the Polycythaemia vera (PV) he’d just diagnosed me with was not cancer, like yours @Niks85. Essential thrombocythemia (ET) and Polycythaemia vera (PV) have been defined as blood cancers known as MPNs since 2008 I believe. I can talk with my new haematologist about the emotional aspect of living with a chronic blood cancer and not have it dismissed. He also takes my physical symptoms seriously and we’ve been able to improve my sleep so I have more energy. The long-term anxieties of it all are not fun, but are easing.

So I’d say it helps to have a doctor on the same page. It’s definitely a WTF moment!!! What helped me after diagnosis was healthy distractions like walks, hikes, watching favourite films and shows… It gets easier. Take it easy on yourself and ask for help if you need. Do please share more here if it helps, you’re not alone with that diagnosis and people here really do get those rollercoaster emotions.

And @FunshineBear you made me laugh—my other half also jokes about me being a mutant X-Men character, dread to think which one hahaha. It can help to find some silliness in what we now live with, I find. What would be your mutant powers, I wonder?!

Anyway, welcome folks and try to give yourselves a break after getting these diagnoses, it can feel like shock. Do please have a look around the forum as you’ll find many other survivors of Myeloproliferative neoplasms (MPN) like Essential thrombocythemia (ET) and Polycythaemia vera (PV) around, sharing great support like yourselves.

[Katie1977]

Hello - I feel your pain but also want to reassure you, 20 years ago I was diagnosed with Essential thrombocythemia (ET) at the age of 28, looking back yes I had all the symptoms and a regular blood test confirm this. I took aspirin a short while, and then I took hydroxycarbamide (chemo) isn’t a harsh drug and I’ve been on a high dose for 19yrs. Challenges for me are fatigue, infections last longer, and you need to get antibiotics asap. Feeling cold, hot ‘ temperature control. I work full time, im now a nanny, love going to football, cricket, rugby and youll see me at coldplay and killers concerts on the dance floor, what I’ve learnt is do what you can when your feeling good and when your feeling tired take it easy, listen to yourself and chill. Emotionally - reach out, dont hide it - its good to talk and there’s more support now than there ever has been, share the information you read with people who are close to you - most importantly reach out! X

[Niks85]

Hi all apologises for the very delayed response in getting back to you all. For some reason I was accidently put on silenced so literally have been seeing the responses but just not been able to reply.

First though just want to say I fully appreciate the time everyone has put in, in responding to my “Declaration” lets say. This place is literally the only place I can talk about my diagnosis and feel support and understanding. So thank you

Im now experiening something new which id like to share and hopefully get some response too. Since sept-dec 25 I was back to back with some viral bacterial infection or another. 3 different forms of antibiotics. This made me at the time feel like I was walking threw mud.

The only way I can explain how I’m feeling at the moment is somewhat similar to end of last year. (Currently just coming out of my 4th course of antibiotics due to a throat infection) I find myself feeling a continuing combination of lost, anger, frustration,stress… not to mentioned my recent ADHD diagnosis so I’m feeling all the above and yet my ADHD has me wanting to go-go-go while the Essential thrombocythemia (ET) I feel is trying to keep my in a box. And I dont like boxes. Or more so maybe! The Essential thrombocythemia (ET) is trying to tell me to take things at a slower pace. But either way I can’t. Im a single mum to my beautiful little frankie working 37hrs a week. Just my mum and dad for support. Not a single friend (always struggled with this) and like i say, yet again, just getting better from another infection. Is THIS how my life is going to be. That’s what I find myself asking myself alot of the time lately. Like for goodness shape I USE to be so fit. Always in the gym etc l. It seems like my body just wants to keep getting poorly. I’ve got this to contend with whilst starting a new job just before christmas, still waitingn Occupational Health to sort out chair and work station. Can I continue like this? Am I just being dramatic over all of this? Am I being pathetic… really… is it time for me to just get a grip and carry on. I dont know. All I do know if that my head will not stop going round and round about this diagnosis. Then I’m trying to figure out if it’s just my life in general that makes me run down so more prone to sickness and fatigue or is it the Essential thrombocythemia (ET)…. Anyways got a Gp apt this evening to discuss my mental health. Cause it just needs sorting out in basic terms…. So yeah…. Anyone relate? X