Just a newbie with ET CalR. Still a little bit in denial as my diagnosis was not handled well at all. I was having regular blood tests for RA and my practitioner noticed my platelets were slightly elevated, 500ish.
I was given an appointment for Haematology and suddenly found myself in the Cancer centre. Surely this wasn't right, I just need my blood checked?
I emerged from my appointment quite shell-shocked, I had blood cancer! I went to the appointment on my own so I probably missed a lot that was said but when I got home , I felt like it had been a bad dream. and to be honest felt completely $#it!!
A few years ago my Dad had died from PV but, oh no, it's not hereditary. Really? Two rare blood conditions?
I have constantly refused to go onto treatment other than aspirin, as after a bit of internet trawling, the numbers don't look too bad. A few years ago my platelet count would have been acceptable. I am now under pressure to start Hydroxycarbamide but I don't like the look of the side effects, plus I already take a chemo drug for RA (MTX). Also I travel a lot to the Tropics and on this drug I would have to keep out of the sun!
I feel I need to reach out and ask people about the treatment, have you had side effects, how about the sun bit, any concerns?
Is my count really that high?
Help!! Real info and experience needed please!!