Et with Jak2

Hi  and we l come to the community.

I don’t normally post in this group but your post caught my eye.

Does your son have Essential thrombocythaemia (ET)…. If so, this is completely different from bone cancer - ET is a blood cancer…… so if it is this you may want to joined and post in our dedicated MDS/MPN/ET/PV/myelofibrosis (MF) suppprt group.

Yes, Im sorry I meant to say blood cancer. He was given Interferon for a year which caused him to become suicidal and he had panic attacks. I did research and got him referred to a specialist who took him off Interferon and after a bone marrow biopsy he was given aspirin and has to have regular blood tests and venesections. I don’t understand exactly what is the prognosis for this? He looks perfectly healthy and lives a normal life but he is prone to tiredness and headaches. How does this disease(if that is the word) progress?

Is it true it can become leukemia? Is it life threatening? He works full time and worked all the way through the treatment with Interferon. I am very unsure what will happen in the future. Does anyone understand more about this?

Hi again  …..I don’t have ET but I have lived with and been treated for my very rare type of blood cancer for over 24 years….. it’s important to understand that the treatment of blood cancers can be ever so different across the various types (my type is a Non Hodgkins Lymphoma)

I have talked with many folks with ET over these years who are ‘living with’ their ET…… 

You need to be in the correct discussion room…… as this will allow you to connect up with others both patients and caregivers about the ET journey.

So please join our dedicated MF support group…… by clicking on the link below  

MDS/MPN/ET/PV/myelofibrosis (MF)

Once you have joined the group put up a post to introduce yourself and your son and this will help you connect with others with MF…… I will keep an eye open for you in the ET group as I help out across our various blood cancer groups.