Hi there I’m hoping someone can offer a bit of advice my 25 year old has just got a jak2 positive result and been diagnosed with ET doctors are saying it’s very rare in his age group so much stuff online my main question is what are the long term complications I know people say life expectancy is normal but am I right in thjnk this is only if your diagnosed around 50-60?
Hi Deermand welcome to this corner of the Community. I am Mike and I help out around our blood cancer groups.
I don't have Essential thrombocythaemia (ET) but I was diagnosed way back in 1999 with another rare, incurable type of blood cancer Stage 4a so I do know this journey rather well.
In the early days it’s all about understanding the condition and once you get more information and talk with others the journey will get more understandable.
Let's look for the members with this condition to pick up on your post, you can also look through all the group threads (hit the group name and scroll down) and as always you can hit reply to any older posts.
Talking to people face to face can help a lot but during these strange times it’s not that available but do check to see if any Local Macmillan Support in your area has opened up. Do also check out for a local Maggie's Centre in your area as these folks are amazing and each centre do run monthly Heamatology Support Groups most are online at the moment….. the one i attend does have a few folks with ET in it so worth checking and one person is in their late 20s
The Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear. You may also find our Ask an Expert section helpful but do allow a few working days for a reply.
You may also want to check out MPN VOICE UK for some good information and have various support platforms.
Always around if you need further help or just want to talk.
Hi again Deerm you are in the correct group for ET.
We can’t have a group for every type of blood cancer, for instance there are over 60 types of Lymphoma so we can’t have 60 groups but this group covers a few of the rare types that are not Lymphoma, Leukaemia or Myeloma and was only set up a few years back.
Do have a search through the various threads in the group (just hit the main group name) and have look at the ET posts and as always you can hit reply to see if the members are still using the site.
Always around to chat ((hugs))
