I’ve recently been diagnosed with Esstential Thromocythaemia, a rare blood cancer. I wonder if there is anyone else living with the condition who would be willing to chat?
Welcome to Cancer Chat Esther although I'm sorry to hear you've been diagnosed with Essential Thrombocythaemia.
Hopefully some of our members who have the same diagnosis will stop by soon to share their stories and advice but if you have any further questions that you'd like to discuss you can give our team of cancer nurses a call. They're available on 0808 800 4040, Monday - Friday between 9a.m - 5p.m and they will do all they can to support you and address any worries or concerns you have about living with ET.
If you haven't done so already, it may be worth having a look at the Blood Cancer UK website as well as they have a lot of information about your diagnosis and an online forum just like ours where you can connect with others who are also on this journey.
I was diagnosed with ET in 2023 and am on Peg Interferon Alpha 2a (Pegasys), injecting once every 3 weeks now, and daily aspirin. Platelets are well controlled and I am tolerating the interferon well, with some adjustments made to the dosage.
I have just about come to terms with the diagnosis, which followed referall to haematology after pre-op blood tests for a scheduled knee replacement. It is surreal, worrying and disorientating to have a chronic and incurable blood cancer diagnosis out of the blue. Beginning treatment I was resistant to the idea that I was high risk for stroke and thrombosis, having been pretty healthy and with no symptoms that I was aware of. Treatment reduced my platelets well enough to have my surgery after a delay of only 4/5 months. I know it is very difficult to get one’s head around this diagnosis, and to think about the future. I hope that your treatment is effective and that you reach a stage where you can almost forget about the ET while carrying on with your life as normal. I have found that I need to be kind to myself sometimes and just rest and relax- at other times I definitely need to exercise, go out for a walk and energise that way.
As the previous reply mentioned, the best forum I have found to talk to other people with MPNs and to get information is Blood Cancer UK. I joined this forum to find out more about a new issue I have- but that’s another story!
I replied to you a couple of days ago, but forgot to mention a really good website for MPNs. I found this site really helpful when I was first diagnosed, and still use it when I need information or reassurance.
Hi Esther, ive only just joined this group for other people's insight into ET.
My husband was diagnosed on 2nd April this year. Life changing is putting it mildly. We had no idea that there was anything more serious than a course of iron tablets needed. He went in on his own to the appointment and was told he had a blood cancer.
Our son drove him over to the appointment as my hubby had taken epilepsy in 2025 and had to give his driving licence in, Thinking that it was something like he was low in iron, our son just sat in the car waiting on him.
I had fallen the week before and was in hospital. Other than that, I would have been with him.
How are you coping, do you have support? Have you had much support from this page.
I have a very rare complaint in my lungs and I've searched the Internet high and low and there is no support for it online. I have been ill 33 years. I think this group and groups like it are amazing. People need this. Just to know they aren't on their own
If you ever need to talk I'm here. I know im not the one who's ill but I am willing to listen and support you if I can. Maybe we can support each other.
