Guest guest Posted March 31, 2000 Report Share Posted March 31, 2000 Beth, Do you know what your genotype is? I'd bet that your story happens way too often. Claudine ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2000 Report Share Posted March 31, 2000 Beth, Do you know what your genotype is? I'd bet that your story happens way too often. Claudine ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2011 Report Share Posted January 8, 2011 Wow, Beth, you have always been willing to share your story from time to time, but this one has a collasal ending. You started from the beginning of your journey and brought us up to date and what an ending! This is what is so great about Ariad, it also attacks the T315i mutation. I never had a mutation, but in the very beginning about 15 years ago, they told me I had a new cell line, but didn't know what it was. Eventually it was no longer on the radar screen, but I was always curious about what it was and what happened to it. The first trial I was on was as useless as teats on a boar hog. I had to adjust my Hydrea every week because of the highs and lows. Eventually I had to take more and more and after I called the NCI to ask about the drug, they said they couldn't tell me anything for 10 years. Well I had already used up 4 of the 3 1/2 to 5 years they gave me, so I quickly went to MDACC and have been kicking myself in the rear end ever since for not moving faster. I belonged to the ACOR group and once left over an argument with Joyce, we heard zilch. During that time, I met Gay Bratton way down in San who recommended Dr. Keating. At the time I didn't know he was a CLL specialist, but hey, he was absolutely the best and he did for me what everyone else was doing and as soon as they opened up the BMS trials, he got me into it. I know Gay will agree with me that you will not find anyone sweeter and on the ball. It is strange that my journey had so many twists and turns over the years and all the trials. At the time I met Gay, she had foot surgery and was in a wheel chair. When Dr. Keating called and said to come to Houston immediately for the BMS trial, I was recovering from foot surgery and was also in a wheel chair. We got ready and left in 2 days and stayed for 7 1/2 weeks. One of the best things to remember about the trials is the people I have met along the way, in person and online. Everyone has a story to tell, like me and Beth and I hope you all will consider sharing yours. Let's make next week sharing week to tell your story. I am so happy for you, Beth, that you have found that place where you no longer panic and have found peace. I certainly understand your words of wisdom, " ....I'm in a good place and I want to enjoy the present. I'll deal with tomorrow when it comes. " I always remember Annie's song, " The Sun Will Come Up Tomorrow " . I saw the broadway show and the movie and I will never forget her singing that song and the positive message it gave me. I want you to look back and remember this as a happy time for a long, long time. It was your own courage that brought you this far, that and the grace of God. Blessings to everyone, Lottie Duthu Quote Link to comment Share on other sites More sharing options...
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