Guest guest Posted January 5, 2010 Report Share Posted January 5, 2010 Dear Cheryl, Welcome to our group. I am also an old timer, having been diagnosed 14.5 years ago. I will try to be brief as I am sure everyone has heard my story so many times, it is giving them indigestion. LOL I don't know all there is to know, but like Tracey, I don't understand how they have come to the conclusion that you are in blast or accelerated phase. Did the doctor say how many blasts were in your marrow? We have several people who were diagnosed in accelerated phase and are doing well on the new Ariad drug. I didn't wait to be referred to a CML specialist, I decided who I wanted to see from reading posts and made my own appointment. You didn't say where you lived or what research center you were near, because that is where you will find the best specialists. An oncologist works with all cancers and can't be expected to be up to date with all treatments. My oncologist was nice as long as I saw him exclusively, but when I left to go to MDACC and the new trials, he held a grudge and has kept it for over 10 years. That is a long time to " get over it " . He lost a CML patient last week because he wouldn't send her to see a specialist. The patient's daughter works in his office and I think he even had her buffaloed. If I were her, I would be looking for another job. Tomorrow I am going to get my last CBC from his office and I will have the satisfaction of dumping him as he has tried to dump me, but I never gave him the satisfaction, I just kept showing up. You deserve the best and you will have to become your own advocate if you want the best treatment. Others will tell you of their experiences, don't give up, just keep your guard up and ask a lot of questions. There will always be someone behind you, before you and beside you, that is our promise to you and all new members. You will find a lending hand at every turn. Zavie didn't fabricate the truth to you, you will find everything you need in information and fellowship right here. Hands & hearts, Lottie Duthu Quote Link to comment Share on other sites More sharing options...
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