MATEs FORUM

Hello there ET sounds like scary since it is cancer. The quality of life is now affected...how long will we live? How many years?What can we do with this? The chemo drugs makes me sick.

Hey Gracey...

Welcome to MATES! Glad you have found us okay...

Firstly, please try to stay calm... Because you should know that there are many people here that have ET, and who have been around for quite some time...

One member is Katie. Katie has ET and she is 78 years old... (Although I hope she won't mind me telling you her age).
And Kate is still happy and managing to live well even with ET over a very long time ...

You will soon find out that many, actually... MOST people with an MPN like ET, can and do still live very long and very useful lives...

I am sure that both Katie, Merry & Warwick will be along soon to welcome you to MATES, where we have a growing membership of people that have a variety of different types of Myeloproliferative Neoplasms (MPNs). That's what they call these rare types of blood disorders...

It is also quite normal to feel a bit afraid at first, but after a while... Well, we just all learn how to get on with our lives, and you will too...

It is true that HU can be hard to adjust to in the beginning, however, many people get used to it after a while... Others, might go on to find other drugs that work better for them...

Because you are still quite young, you might not need to take as much HU as other people (?) But really, only your medical team should be making those decisions...

As we are all just Patients here... But we can ask doctors for their opinions every now & then, to try to help find answers to questions for you...

Sometimes Gracey, it is worthwhile to ask a different doctor in your own country for a 2nd opinion about what drugs you might need to be taking...

In any event, you can always find us here to talk to about your worries and concerns... Just remember Gracey, only a few people with ET go on to become fatally ill... The other 85-90% live almost completely normal lives...

Stay positive & strong because the news is not all bad after all... okay?

Best wishes

Steve

Hi Gracey,

Steve mentioned me in his post to you. My name is Katie and I was told I had ET in 2005. I took Hydrea for many years. At first the drug made me sick too but it gets better after a few weeks.
Don’t be frightened. We all feel like this at first but you begin to realise although ET is not completely curable, it is not as difficult to live with as you imagine . Many people go on to have children and lead very normal lives.

Keep posting on the forum and we will do our best to help and advise you until you feel stronger.

Best wishes,
Katie

My advice would be to reach out for support from professionals looking after you and to other people who understand on forums like this one.

I was originally diagnosed with ET in 2012 and have only recently started drugs to reduce my platelets. While there are some symptoms with the disease, the aim in many cases is purely to prevent clots.

The disease can remain stable for a long time but it is important to have regular checks with someone you trust. Alert your doctor if you feel anything is different or changing.

Annie

Thank you so much everyone for your comments. I really appreciated it from you guys. Yeah ...I am nervous everyday life here having this kind of rare illness since I am young and would like to start a family, but I am happy now to hear you guys with same illness like me. Thanks for your time reading my thoughts here. Thanks for welcoming me as your family MPN. I really really appreciate for your time writing your messages for me.Thank you very much for the encouragement. I love you all..
❤❤❤

Love,
Gracey