CancerCompass message board discussion started by Anne73 on 8/27/2007 http://www.cancercompass.com/message-board/message/all,15673,0.htm Sat, 06 Sep 2008 00:00:00 GMT Sat, 06 Sep 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi!  I am a 33 year old female...diagnosed with ET in April 2007.  My platelets have hovered around 1 - 1.2 million and I started taking Hydrea last week.  It's kind of hard to imagine taking something like this for the rest of my life....just wanted to hear from someone....hear your stories and how others with this disease are managing.  -Anne Anne73 Mon, 27 Aug 2007 00:00:00 GMT Hi,I was informed at 31 (now I'm 49---almost the big 50) that I had ET...It was very scary because at the time there was even less info than there is now..still now enough info now though....whats your story???  becca renee Thu, 30 Aug 2007 00:00:00 GMT My husband was diagnosed with ET in 1991.  His platelett countwas over 2 million.  He has been treated with Hydrea, Anagralide,Interferon shots and baby aspirin.  The side effects from many ofthese drugs are not good.  With Hydrea, he gets BIG mouthsores.  The doctors assured him that that was not what was causingthem, but then we did some research on the "net" and found out that isone of the side effects.  Every doctor he sees wants to curehim.  They just want to pump the drugs into him.  He hasgotten to the point where he is refusing the drugs.  He takesHydrea currently, but in low doses.  His count is near onemillion, but the side effects from more of this drug are worse than thedisease.  He actually had no side effects from the disease - onlythe drugs.  We have been told (and we have read on the net) thatHydrea taken over an extended period of time can cause Leukemia. His doctor told him that has not been proven.  We need to get moreinfo on that before his next visit. I guess what Ihave seen over the past 17 years is that the cure is worse than thedisease.  I have asked the questions "if the plateletts are notmature, how do you know a high count is not normal".  I guess thathas not been proven.  We feel we have to be our own doctor when itcomes to the drugs.  That is the only way to do it.  He can'tlive with big mouth sores and not being able to swallow or eat becausehe has taken all this medication.Good luck to you.  I guessthe only advise that I can give you is to monitor your medicationsyourself.  If the side effects are too much for you to handle, youwill know it.It's nice to know someone is out there that we can talk to that is in the same boat. Jean  frankaw Thu, 28 Aug 2008 00:00:00 GMT