Been told to come off hydroxycarbamide for E.T. Anyone else?

Can anyone help me? I was diagnosed 15 years ago with et after a bone marrow biopsy. been on hydroxycarbamide ever since my platelets have never come down. 2 months ago they sent me for bone marrow biopsy rang me up and told me to stop taking the hydroxycarbamide.? And we will keep an eye on your blood pressure and cholesterol.i asked if I still had ET they said probably and that was that more or less. So my daughter rang the next day and told them we don't understand and they said I could go and have a face to face in a month so I'm doing that .  I'm confused. So been of hydroxycarbamide for a few weeks now and I feel awful . Anybody got any thoughts would be very appreciated

  • Hi Carrieg,

    Welcome to Cancer Chat. I can understand your confusion as it sounds like you haven't received much information about what's going on. Unfortunately I'm not able to advise but if you would like to talk things through with one of our nurses, you can reach them on 0808 800 4040 (Monday-Friday, 9-5), and this may be helpful for you.

    Wishing you all the best,

    Ben
    Cancer Chat Moderator