Et

Hi I'm Suzanne! I was DX with ET in late dec of 1999. At the time I was 22.My count was 875. 2 months later is was 1600. 6 months later 2000. Time for meds the dr said. No Hydrea for me to young and the side effects of Lukemia down the road. So,Agrylin it was. 10 mgs a day.Highest,he had ever given anyone he said. Months later down to 255. Love it! Okay,side effects becasue I know everyone is worried. My herat races.So,I take meds to calm it down.

 My Et has progressed into that my bone marrow is not making red cells anymore. It has actually slowed down. So,I'm on Procrit every 2 weeks.That,helps alot! Keeps,my hemoglobin up! Thank God because I sure do get tired as I see most of you say that too. My hands ache once and a while. My spleen enlarges but not often and i run a low grade fever (99.9) Dr says that is normal with this.

 I live on the East coast and go to Penn Univ. as a sec Dr. in case my bone marrow shuts down and it's time for a bone marrow transplant. They take care of it there. My brother is my match. We,already lined that up.

  So,now that I'm 30 and have had it 8 years it's so nice to find a place where we can all talk. There are no "meetings" for ET patients that I can find. Feel.free to email me if you wanna chat.Would,love to hear from you.