Guest guest Posted March 26, 2010 Report Share Posted March 26, 2010 Hi , Thank you for your kind words. The 1300 Zero Club members are only a fraction of the number of the people who have achieved Zero. Lets do the math. 5,000 new CML patients in North America annually. Over 10 years that would be 50,000 CMLers. If only 50% achieved CCR there would be 25,000 members in the Zero Club. We are a unique club. Just think about those of us who failed on their treatment and through the various CML support lists were able to contact the CML experts to get help. I am one of those patients and am forever grateful to those helped me on my journey. Zavie Zavie (age 71) 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 3.6 log reduction Sep/08 3.7 log reduction Jan/09 3.8 log reduction May/09 3.8 log reduction Aug/09 4.0 log reduction Dec/09 e-mail: zmiller@... Tel: 613-726-1117 Fax: 613-482-4801 Cell: 613-282-0204 ID: zaviem Tel in FL: 561-429-5507 _____ From: [mailto: ] On Behalf Of nchando@... Sent: March-26-10 7:58 AM Subject: [ ] 10+ list Thank you to the members of the 10+ list for encouraging the newer people. I was dx'd. in Jan.,2004, so I have already reached over 6 yrs. I can't believe it! I remember finding the list back then, spending hours online searching for encouragement and information. I thank Zavie for calling me on the phone the first Saturday morning, to help me get into the chat. One thing: I was surprised that the 10+ list wasn't longer. Are there others we've known online who haven't made it? I certainly remember the young woman named Jen, who died after a bmt. She wanted the cure so she could raise her young son, didn't want to try Sprycel. So sad. I congratulate the 10+ people and hope to join that list as it continues to grow. in NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2010 Report Share Posted March 26, 2010 Zavie: Your list (and the other great patient oriented things you do) has been a tremendous incentive and morale booster for CMLers. Many thanks for your humanitarian efforts. By the way, what is my number? I have been in molecular remission with Sprycel for 6 months now. Best regards, Carl ________________________________ From: Zavie <zmiller@...> Sent: Fri, March 26, 2010 6:55:38 AM Subject: RE: [ ] 10+ list Hi , Thank you for your kind words. The 1300 Zero Club members are only a fraction of the number of the people who have achieved Zero. Lets do the math. 5,000 new CML patients in North America annually. Over 10 years that would be 50,000 CMLers. If only 50% achieved CCR there would be 25,000 members in the Zero Club. We are a unique club. Just think about those of us who failed on their treatment and through the various CML support lists were able to contact the CML experts to get help. I am one of those patients and am forever grateful to those helped me on my journey. Zavie Zavie (age 71) 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 3.6 log reduction Sep/08 3.7 log reduction Jan/09 3.8 log reduction May/09 3.8 log reduction Aug/09 4.0 log reduction Dec/09 e-mail: zmiller@... Tel: 613-726-1117 Fax: 613-482-4801 Cell: 613-282-0204 ID: zaviem Tel in FL: 561-429-5507 _____ From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of nchandoaol (DOT) com Sent: March-26-10 7:58 AM groups (DOT) com Subject: [ ] 10+ list Thank you to the members of the 10+ list for encouraging the newer people. I was dx'd. in Jan.,2004, so I have already reached over 6 yrs. I can't believe it! I remember finding the list back then, spending hours online searching for encouragement and information. I thank Zavie for calling me on the phone the first Saturday morning, to help me get into the chat. One thing: I was surprised that the 10+ list wasn't longer. Are there others we've known online who haven't made it? I certainly remember the young woman named Jen, who died after a bmt. She wanted the cure so she could raise her young son, didn't want to try Sprycel. So sad. I congratulate the 10+ people and hope to join that list as it continues to grow. in NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2010 Report Share Posted March 26, 2010 # 598 Great news. Thank you for the kind words. Zavie Zavie (age 71) 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 3.6 log reduction Sep/08 3.7 log reduction Jan/09 3.8 log reduction May/09 3.8 log reduction Aug/09 4.0 log reduction Dec/09 e-mail: zmiller@... Tel: 613-726-1117 Fax: 613-482-4801 Cell: 613-282-0204 ID: zaviem Tel in FL: 561-429-5507 _____ From: [mailto: ] On Behalf Of Carl Davies Sent: March-26-10 10:17 AM Subject: Re: [ ] 10+ list Zavie: Your list (and the other great patient oriented things you do) has been a tremendous incentive and morale booster for CMLers. Many thanks for your humanitarian efforts. By the way, what is my number? I have been in molecular remission with Sprycel for 6 months now. Best regards, Carl ________________________________ From: Zavie <zmillersympatico (DOT) <mailto:zmiller%40sympatico.ca> ca> groups (DOT) <mailto:%40> com Sent: Fri, March 26, 2010 6:55:38 AM Subject: RE: [ ] 10+ list Hi , Thank you for your kind words. The 1300 Zero Club members are only a fraction of the number of the people who have achieved Zero. Lets do the math. 5,000 new CML patients in North America annually. Over 10 years that would be 50,000 CMLers. If only 50% achieved CCR there would be 25,000 members in the Zero Club. We are a unique club. Just think about those of us who failed on their treatment and through the various CML support lists were able to contact the CML experts to get help. I am one of those patients and am forever grateful to those helped me on my journey. Zavie Zavie (age 71) 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 3.6 log reduction Sep/08 3.7 log reduction Jan/09 3.8 log reduction May/09 3.8 log reduction Aug/09 4.0 log reduction Dec/09 e-mail: zmiller@... Tel: 613-726-1117 Fax: 613-482-4801 Cell: 613-282-0204 ID: zaviem Tel in FL: 561-429-5507 _____ From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of nchandoaol (DOT) com Sent: March-26-10 7:58 AM groups (DOT) com Subject: [ ] 10+ list Thank you to the members of the 10+ list for encouraging the newer people. I was dx'd. in Jan.,2004, so I have already reached over 6 yrs. I can't believe it! I remember finding the list back then, spending hours online searching for encouragement and information. I thank Zavie for calling me on the phone the first Saturday morning, to help me get into the chat. One thing: I was surprised that the 10+ list wasn't longer. Are there others we've known online who haven't made it? I certainly remember the young woman named Jen, who died after a bmt. She wanted the cure so she could raise her young son, didn't want to try Sprycel. So sad. I congratulate the 10+ people and hope to join that list as it continues to grow. in NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2010 Report Share Posted March 26, 2010 > One thing: I was surprised that the 10+ list wasn't longer. Are there > others we've known online who haven't made it? ___________________________ Hi , NY, Yes there are definitely others...some are on other cml lists, like: Jerry Mayfield Sharon Ann Jody Capik and many of the healthy old timers, especially who's first medication did the trick for them, are not active on lists anymore...they have moved on. Gale, you just recently posted, was one of them. PS Hi Gale.....I will post you a note when I have a bit more time. I have just moved on to Tasigna (my 3rd drug). On Jerry's list there has been quite a bit of discussion about the trials to get off drugs, combining with Peg-inf.....I guess the dose is so low and only once a week, that it is not very noticeable for many. There is also someone who has a running blog about his experience....The CML Kid. And Cheryl-Ann from Montreal has experience with it also. I guess now I don't have to write you another note. C. (Maui Nanc) Quote Link to comment Share on other sites More sharing options...
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