Guest guest Posted June 18, 2008 Report Share Posted June 18, 2008 LLS Co-Pay Assistance Program http://www.leukemia-lymphoma.org/eMarketing/eNewsArchives/Hematologic_Cancer_New\ s/2007/June.htm#story2 New glucose monitors coming soon http://www.remedylife.com/diabetes/news/content?cid=32 & ctid=3 Personal CML journeys http://www.cancereducation.com/cmljourney/cml/ Blessings, Lottie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2008 Report Share Posted July 18, 2008 The link is to the MD newsletter I receive every so often. There is some news there about CML, even concerning vaccine development. Thought I'd pass it along. http://www.mdanderson.org/publications/insights/ As for me (I'm 1182 in Zavie's Zero club (although I don't know if I still qualify), I was PCR negative in January or so, 0.04% in April, and 0.032% in June. My next test is in September. My onc says I'm still in cytogenic remission. She will probably have a bmb done in October, just to make sure there is no cloning she says. My biggest problem is upset stomach and lack of energy, especially around the time I take the medicine. I've been lucky compared to some as to side effects, I know. ted Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2008 Report Share Posted July 18, 2008 Hi Ted, Your PCR values are very stable given the margin of error that these tests have. I've often said that a negative on a PCR isn't very useful and could potentially be misleading so I actually don't put any weight on a negative test result. Instead, when I see a negative result, I wonder if the test was performed properly, was the sample large enough, did the blood degrade before testing etc. Your results are not only stable but they're most likely in the 3 log or greater range (which is where you want them). I can't say forsure because I don't know the baseline that your lab uses but generally speaking, results in this range are considered to be at least in the 3 log reduction range for most labs. All in all, it looks like you're doing great and you do in deed get to keep your Zero Club number because Zavie's only requirement for it is to be CCR (a Complete Cytogenetic Response) besides that, he doesn't take away what he's given out so your number is yours for life. As far as the tummy issues goes, the best advice I can give is to experiment with the food you eat. It's with trial and error that you'll find what works for you. Take care, Tracey > > The link is to the MD newsletter I receive every so often. There is some news there about CML, even concerning vaccine development. Thought I'd pass it along. > > http://www.mdanderson.org/publications/insights/ > > As for me (I'm 1182 in Zavie's Zero club (although I don't know if I still qualify), I was PCR negative in January or so, 0.04% in April, and 0.032% in June. My next test is in September. My onc says I'm still in cytogenic remission. She will probably have a bmb done in October, just to make sure there is no cloning she says. > > My biggest problem is upset stomach and lack of energy, especially around the time I take the medicine. I've been lucky compared to some as to side effects, I know. > > ted > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2008 Report Share Posted August 1, 2008 Hi Ted, All you need to qualify for the Zero Club is to reach CCR. Once you get a number it is a lifetime membership. Even if you fall out of CCR and then achieve CCR again, your original Zero Club number remains. Zavie > > The link is to the MD newsletter I receive every so often. There is some news there about CML, even concerning vaccine development. Thought I'd pass it along. > > http://www.mdanderson.org/publications/insights/ > > As for me (I'm 1182 in Zavie's Zero club (although I don't know if I still qualify), I was PCR negative in January or so, 0.04% in April, and 0.032% in June. My next test is in September. My onc says I'm still in cytogenic remission. She will probably have a bmb done in October, just to make sure there is no cloning she says. > > My biggest problem is upset stomach and lack of energy, especially around the time I take the medicine. I've been lucky compared to some as to side effects, I know. > > ted > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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