Guest guest Posted September 29, 2008 Report Share Posted September 29, 2008 Dear Group, I read every letter and I think everyone is right. Each has a different opinion, a different experience and emotions, so all thoughts and questions are valid and true to them singly. Some experience the same side effects, so they can relate to that person. I relate to everyone who has been in numerous trials, because we share that same experience. Almost all of my trials have been at MDACC, but Bobby is the Travel Queen, she really gets around. I think Len would be next. She certainly has the record for staying away from home the longest. When they were passing out genes, we not only got the one with CML, we got the one for perseverance. Warriors all are we, and since we have the same enemy, we stick together and plan our stratergies together. We share our pain with each other, and our victories with Zavie's s and Yipees. Will get back to you as soon as I can, Blessings from me to you, Lottie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2008 Report Share Posted September 30, 2008 Hi Lottie, One thing we must never forget. The majority of patients have not been in trials and it is because of those who participated in trials who made iit safe for us who came afterwards. Many of us are doing well on the current approved meds because of the brave warriors who tested the drugs. If down the road one of us will need a drug like XL228, it will be because of patients like our own Bobby that participated in a trial to help figure out the correct dosage and to be the guinea pig to learn what the side affects are. I can claim to be part of a clinical trial for Gleevec, but that would be a sham. The trial that I was in was called the expanded access trial (#113). This was a trial cooked up by Novartis to make Gleevec available to those patients who needed the drug and couldn't get it.. All the clinical were closed and Novartis was waiting for FDA approval before it could be released to the public. I am ever in debt to Novartis and all the trial warriors for saving my life. Thank you all, Zavie Zavie (age 70) 67 Shoreham Avenue Ottawa, Canada, K2G 3X3 dxd AUG/99 INF OCT/99 to FEB/00, CHF No meds FEB/00 to JAN/01 Gleevec since MAR/27/01 (400 mg) CCR SEP/01. #102 in Zero Club 2.8 log reduction Sep/05 3.0 log reduction Jan/06 2.9 log reduction Feb/07 3.6 log reduction Apr/08 e-mail: zmiller@... Tel: 613-726-1117 Fax: 309-296-0807 Cell: 613-282-0204 ID: zaviem YM: zaviemiller Skype: Zavie _____ From: [mailto: ] On Behalf Of Lottie Duthu Sent: September 29, 2008 6:29 PM CML Subject: [ ] Everyone is right Dear Group, I read every letter and I think everyone is right. Each has a different opinion, a different experience and emotions, so all thoughts and questions are valid and true to them singly. Some experience the same side effects, so they can relate to that person. I relate to everyone who has been in numerous trials, because we share that same experience. Almost all of my trials have been at MDACC, but Bobby is the Travel Queen, she really gets around. I think Len would be next. She certainly has the record for staying away from home the longest. When they were passing out genes, we not only got the one with CML, we got the one for perseverance. Warriors all are we, and since we have the same enemy, we stick together and plan our stratergies together. We share our pain with each other, and our victories with Zavie's s and Yipees. Will get back to you as soon as I can, Blessings from me to you, Lottie Quote Link to comment Share on other sites More sharing options...
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