Guest guest Posted October 4, 2009 Report Share Posted October 4, 2009 Dear Serj, In answer to your question, I am on SKI for about 2 years now, in the last phase of the trial. I have only met one other person who is in the same trial. There is another person in our group who was removed from it some time ago because of a mutation. She is now in another trial, so to my personal knowledge there are 2 of us who go to MDACC and we met last time I was there. I think we were both excited to meet each other and exchange our experiences. There must be more out there, but they have not introduced themselves to the group. Perhaps your post will spur them on to write and identify themselves if they are in the SKI trial. I have tolerated 300 mg. for some time now, but at first I had hives and had to stop the drug and take steriods and use steriod creams. I have shown some success, but I am still not where I want to be. It's up one visit and down the next visit, but I am not giving up. Presently I have pleural effusions and that was the reason they took me off Sprycel. I am hoping they will allow me to take Lasix for the swelling, but so far they have not recommended it. They would prefer to put me in another trial. I had hoped to get into Tasigna, but the trial was over and there were no longer any openings. Just remember that when one door closes, another one opens. I wish you luck with your treatment. Of course we welcome you to our group and are glad to know that you are receiving adequate treatment for the CML. Many of us go to CML specialists and others are getting adequate treatment from their local oncologists because there are a number of drugs that they can fall back on if one fails. I was diagnosed over 14 years ago and there was very little in the way of drugs and they didn't talk about longevity or a substitute drug if one failed, and no remission, because we weren't given that hope. I expect to live as long as my family and friends, and I have already outlived some of them. Do keep your dream of hope alive because you are young and there will be other drugs for you if this one fails, hopefully not, but just in case. Hands & hearts, Lottie Duthu Diagnosed 7/96 at age 67 Quote Link to comment Share on other sites More sharing options...
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