Hi,
I was diagnosed with Essential thrombocythemia (ET) on April 9th, having been identified with the Jak2 gene.
I am currently on aspirin plus ferrous sulphate, but I have been informed that I may move onto other treatment as per the wait and see regime, depending on how the level of my platelet count fluctuates over time and how well my low ferritin levels respond to the current treatment.
I am 74 years old and male.
I feel very fortunate with the hospital help which I have received so far including both the initial tests followed by the subsequent diagnosis and the way the registrar discussed the implications of being diagnosed with a blood cancer and the nature of living with a chronic disease, plus link to a specialist haematology nurse led phone helpline.
I have been reading the range of comments on this forum for the past couple of weeks and feel comfortable with both the range of content and the structure of the site providing a focal point and access for constructive help and honest opinions as one tries on an individual basis to digest what is a significant and life impacting change to what was ânormal lifeâ prior to the diagnosis.
I am also fortunate in having a supportive home environment and family around me.
Lastly I have found the range of literature published by the charity (Blood Cancer UK) excellent in the terms of its range and the comprehensive down to earth commonsense language used to explain various aspects and implications of living with a diagnosed blood cancer.
Hi @Greevz a great big welcome to our forum and thanks for posting what is going on for you.
The Blood Cancer UK support line is also there for you on 0808 2080 888.
It sounds as if you have a really good medical team and family support, it makes such a difference.
How are you and your family coping emotionally and practically?
I know I felt in a weird bubble when I was first diagnosed with the world going on around me and I was in shock for a long time.
I entered into another medical world that spoke a foreign language.
You might see watch and see written as watch and wait or active monitoring sometimes on here.
I look forward to hearing more about you so please do keep posting
Look after yourself
Hi Erica,
Thank you for welcoming to this forum and yes, it does take a while to adjust to the diagnosis etc.
Today I popped a vein in the back of my right hand resulting in an egg sized hematoma.
The doctor at the local Urgent Treatment Centre has put a pressure bandage on it and advised me to keep it on for the next couple of days until the swelling goes down.
I was only wringing out a jumper I had hand washed for my wife, when it happened!
The doctor has a
Oops, pressed send key by mistake!
To finish my story;
The doctor has advised me to give up activities such as cycling in case of the increased danger of falling off and causing a head injury.
What is the general advice I should follow and adhere to to minimise increased risk?
Hi @Greevz that sounds painful Iâm sorry that happened! Wishing you a speedy recovery.
In terms of general advice, you may find the âJust diagnosedâ section of our website useful as it contains some of the things people newly diagnosed may find useful to know -
Iâve just been told I have blood cancer | Blood Cancer UK
You mentioned that youâve seen our range of literature so apologies if youâre already aware, but we also have a booklet on Essential thrombocythemia (ET) which you can download or order a hard copy of for free - Essential thrombocythaemia (ET) | Blood Cancer UK Shop
You also mentioned cycling and how youâve been advised to give this up due to risk - I imagine this might be tough to hear if itâs something you enjoy doing and/or is a big part of your daily life. We have a webpage on keeping active with blood cancer here Blood cancer and keeping active | Blood Cancer UK, but weâd also encourage you to contact the specialist haematology nurse led helpline youâve been given, if you have any questions whatsoever, as they should be able to offer more tailored advice to your individual circumstances.
If thereâs anything we can do to support you, at any point, please donât hesitate to contact us on the support line. You can reach us on 0808 2080 888 and support@bloodcancer.org.uk
All the best, Alice