Hi all,
I was diagnosed with Essential thrombocythemia (ET) in 2018 after 2 years of blurred vision and migraines along with high platelets (1.2m at their peak). I have no anaemia, long term infections, cancers or immune conditions. I have genetic testing (triple neg) and a BMB which apparently gave just enough evidence of disease to diagnose. I was put on clopidogrel and told to watch and wait - great.
6 years later, my platelets have reduced (hooray) but without any cytoreductive therapy - to 388,000 at last count! This is good news but at the same time i am concerned that this may mean disease progression? I dont see a consultant but speak to a specialist nurse once every 4 months on the phone so dont really feel im being very well supported with this.
Any help would be appreciated. Thanks!
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Hi @Loverlygal yes, I reckon watch and wait (or called active monitoring) is good news in my book, too.
If you have any queries do you have a contact for a specialist nurse?
If you do they are the person to have a chat with in between your 4 months phone calls on emotional or medical matters. They know your whole medical history.
This might seem a straight forward question, but I have found on this forum that no medical question is straight forward.
I reckon we are very complex, individual beings which makes it so difficult.
Please do let us know how you get on and not knowing an answer I find makes me anxious.
Look after yourself and be very kind to yourself
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