On 10/22/2008 ghostgirl1977 wrote:
Well, after 10 years I'm finally on Hydrea. I had to go in for sugery last week (to have my gallbladder removed) so I had plateletpheresis to lower my counts enough for surgery. My hem/onc decided it would be best to start Hydrea in an effort to keep my counts low while I recover. I'm assuming it's to prevent blood clots? When they placed my port for pheresis, they had to remove it and put in a new one the next day because my blood clotted so much it blocked the port completely. My blood was as thick as pudding when they drew back on the first line. I've been taking 2000mg a day for two weeks now but my counts have already gone back up to 777. I was just told to increase to 3000mg a day and I'm also on injections of a blood thinner. So far the only side effects I've encountered are losing a little hair and some constipation, which I'm told is to be expected. As of now my doctor thinks I'll be on meds temporarily but it's making me nervous when every time I go in to have my blood drawn, my dose is increased. I thought I'd have a little soreness for a few weeks then it would all be over, but I guess not!
Hi there,
I just found this message board, and am so glad that I did. I was diagnosed with ET in April of 2008. I'm a 42 year old female. I had never even heard of this disorder before then. My count when I was diagnosed was 920,000. It has fluctuated since then but not by much. I have had a BMB, not a pleasant experience might I say, and was just recently placed on 500 mg of hydrea once a day. No side effects except for a little nausea, and fatigue. I was in the doctors office earlier this week with a breathing problem, shortness of breath, my doc was sure that I had a blood clot in my lung, but low and behold none was found however they did find inflammation in there...like a bronchitis. I'm not sure what is in store for me, I'm in the regulation stage with my medication right now, with every 2 week visits to my doc for CBC. I'm glad to know that there are other people out there like me who I can talk to, who understand what I'm going through. The thing that bothers me the most is that you can't do anything to help yourself with this disorder. As with high cholesterol you can diet and excercise, with this you just go and have your CBC and you don't even know if your count is high or not until then....it's so frustrating. I'm scared at times and I get really mad at times...my family has been very supportive but they don't really know what to say to me sometime because so little is really known about this disorder. I'm scared to death that it will turn into luekemia. I guess that I just have to take it a day at a time. I guess that I just hoped that it would be longer from the time I was diagnosed to the time that I actually had to start taking the medication. I hoped that my counts wouldn't actually ever reach that million mark... but of course they did. I have a great doc, and I have complete faith in him and his course of treatment for me, he is very encourging with my prognosis, but we never really know what will happen, since all our bodies are different.