Hi Maura & Barbara,
I love that you can keep living your lives, strong and positive! I struggle, but I'm finally starting to get a little of my energy back and I'm feeling better since I've been on the Hydrea for 2 weeks. I saw my oncologist yesterday and my platelet count is down to 564. He said that's good, since he doesn't want the count to drop too rapidly. He will recheck my CBC in 4 weeks & adjust my dose, if needed, from there. He doesn't want me to stop the Hydrea to see if I'm in remission for at least a year. He told me that the platelet counts can sometimes stay normal for a while, but when a patient has ET, they will always go back up again at some point. He would prefer not using any drugs at all, except baby aspirin, but I had so many symptoms & my bone marrow was so abnormal, he felt the Hydrea was necessary to prevent stroke/heart attack, etc. He doesn't feel Plavix would provide any extra benefit. He also prefers Hyrea over Anagralide or Interferon because it's been his experience that Hydrea works better without as many side effects. As for friends/family, some seem to be able to grasp the nature of this disease, while others can't seem to understand. Usually, the bottom line is - do you have cancer or not? A few people have been supportive & reached out with offers of comfort or assistance, but not too many understand why I'm so tired most of the time. The Hydrea made me a little nauseated, dizzy & sleepy for the first week, but that seems to be subsiding, thank goodness! No one has said anything to me about flying, but when I questioned whether a Carotid Doppler would be a beneficial test, my oncologist was receptive to the idea. He wants to wait and schedule it at my next visit in 4 weeks, after we see what my platelets are doing. So far, my white count is "perfect", if there is such a thing. My RBCs are just slightly elevated. If I can continue on this path, I feel pretty lucky. I'm also thankful for this site, and for having others who are actually interested in bone marrow and platelet counts!! Take Care!