E.T/ Mylofibrosis

Hello,

I am new to the forum and I am looking for support, information and any other general conversation regarding a condition my mom has been diagnosed with. I recieved a phone call last week of my parents to tell me my Mom has E.T which is a form of blood cancer, straight away I am a nervous wreck. She then tells me she has a mutant Jak2 gene which could mean she also has Mylofibrosis. 

I've done some research and from what I've read E.T sounds like one of the least aggressive cancers but on the other hand Mylofibirosis sounds horrible. Life expectancy is normal with E.T but with Mylofibirosis it is 5 years. I am pretty shell shocked and havent spoke about this to hardly anyone, I havent even told my best friends or my close cousin as I do not know what to say and get upset when I think about it or try to talk about it. 

My Mom has an appointment for a bone marrow biopsy soon and then has to have an ultrasound scan on her stomach so I am really worried. Does the Jak2 gene mean that Mylofibirosis is always positive or can people have the gene without having Mylofibirosis. My Mom is starting a low dose chemo soon so fingers crossed she improves, her count has risen from 400 to 600 in 18 months. 

 

Any help is much appreciated 

Rich

 

 

  • Hello Rich_2704

    Welcome to the forum although I'm sorry to hear about your Mum's recent diagnosis.

    We do have a few members who have ET and you might find it helpful to read through this thread and maybe post a comment there to connect with some of them. 

    I'm not sure if you've come across the website MPN Voice but they are a specialist site and have lots of information about ET and Myelofibrosis. 

    We know that this period of waiting for test and results can be really difficult but hopefully once your Mum has had the additional biopsy and scan her Consultant will have a full picture of what is going on for her and be able to answer all the questions. 

    If you think it would be helpful for you to talk to someone then you're welcome to call our team of nurses on 0808 800 4040, Monday to Friday 9am to 5pm. 

    I hope this helps. 
    Best wishes, 
    Jenn
    Cancer Chat moderator