Guest guest Posted December 12, 2008 Report Share Posted December 12, 2008 Sharon T: That is great news and a good start on the CML reduction train!? We rejoice with you. We don't normally use the word remission, although my wife likes to use it.? But without labels of any kind, he is responding well and moving in the right direction. The goal is to reside in Zavie's PCRU club. Again, congratulations! Responding and trending in the right direction is the hope that we all have in the beginning.? He will be living a long and fruitful life. Matt [ ] ie's PCR Results Dr. Shah called last night to say he's very happy with ie's latest PCR results (I've been on pins and needles waiting for that call). Anyway ie had a 2 log reduction since the last PCR done during BMB done around the time of his diagnosis so in August. I'm still learning and know this is really good for 3 months on Sprycel right? I'm still learning the terms, does this mean he's headed towards some sort of remission. He said if next PCR in February looks as good or better that ie may not have to do the next BMB in February it maybe can wait until the next PCR or 3 months after no promises though because he said it really depends on next PCR. Anyway, still trying to understand all this can someone help me does this mean he is CCR? Is he headed to that sweet word remission? Thanks everyone for your help. SharonT (ie 18 yr old with CML and CF) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2008 Report Share Posted December 13, 2008 O!!! YIPPEEE!!! Number 1232 in the Zero Club 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 3.6 log reduction Sep/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 Sharon Sent: December 12, 2008 4:15 PM Subject: [ ] ie's PCR Results Dr. Shah called last night to say he's very happy with ie's latest PCR results (I've been on pins and needles waiting for that call). Anyway ie had a 2 log reduction since the last PCR done during BMB done around the time of his diagnosis so in August. I'm still learning and know this is really good for 3 months on Sprycel right? I'm still learning the terms, does this mean he's headed towards some sort of remission. He said if next PCR in February looks as good or better that ie may not have to do the next BMB in February it maybe can wait until the next PCR or 3 months after no promises though because he said it really depends on next PCR. Anyway, still trying to understand all this can someone help me does this mean he is CCR? Is he headed to that sweet word remission? Thanks everyone for your help. SharonT (ie 18 yr old with CML and CF) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2008 Report Share Posted December 13, 2008 Hi Sharon, That " sweet word remission " is never used in CML because we will always have some level of disease that requires treatment (at least until a cure is found). In the mean time, there are different levels of responses to look for. The first is a hematological response when the blood counts return to normal. The second is a complete cytogenetic response (or CCR) when a bone marrow biopsy (BMB) is negative for the Philadelphia chromosome). The third is a major molecular response (MMR) when the patient achieves at least a 3 log reduction on a PCR test. And finally some are lucky enough to achieve a complete molecular response (CMR) which is when no cells are detected on a PCR. Most doctors caution not to read too much into such a result though as the sensitivity of the test must be questioned as well as the quality of the sample used in the test. Generally speaking, a 2 log reduction is usually in the neighbourhood of a CCR but the only way to confirm for sure is to have a BMB. In any case, it looks as though ie is responding very well to Sprycel so congratulations. Tracey > > Dr. Shah called last night to say he's very happy with ie's > latest PCR results (I've been on pins and needles waiting for that > call). Anyway ie had a 2 log reduction since the last PCR done > during BMB done around the time of his diagnosis so in August. I'm > still learning and know this is really good for 3 months on Sprycel > right? I'm still learning the terms, does this mean he's headed > towards some sort of remission. He said if next PCR in February looks > as good or better that ie may not have to do the next BMB in > February it maybe can wait until the next PCR or 3 months after no > promises though because he said it really depends on next PCR. > Anyway, still trying to understand all this can someone help me does > this mean he is CCR? Is he headed to that sweet word remission? > > Thanks everyone for your help. > > SharonT (ie 18 yr old with CML and CF) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2008 Report Share Posted December 13, 2008 Sharon Congratulations to and the family What a great christmas gift Zero Club 1232 in 2008 I remember when you first posted about - boy has he come along way. Just give him a hug - Zavies numbers are just fabulour from Sue (Aussie) Zero Club # 1197 I love those numbers rising - it would just awful if my number in the club was the last number given - as and my number are quite close together we can travel along checking on how far the club numbers are raised over the next decade or so. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2008 Report Share Posted December 13, 2008 Hi Sharon, Is there another email address that I can contact you at? Your internet provider will not accept any emails from my internet provider. This is the message I received when I wrote to you directly. This message was created automatically by mail delivery software. Your message did not reach some or all of the intended recipients. Reason: Your Root Domain was rejected based on our domain security policy. We do not accept email from these root domains. Solution: Because a large portion of our spam comes from either commercial domains or over seas, we block most of these. Commercial domains are primarily used for spam purposes or disposable email domains. Because 85% of the spam on the internet comes from these domains, most spam filters will block them. Examples of a root domain are emails domains that end in " .biz " , " .us " , " .tv " , " .es " If you have questions regarding this notice, please contact postmaster@... with the subject of the email containing " False Positive " . Delivery failed for the following recipient(s): postmaster@... So I tried contacting them with the 'False Positive' in the subject. Guess what? It gets rejected with the same message. How totally dumb!!! 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 3.6 log reduction Sep/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 Sharon Sent: December 12, 2008 4:15 PM Subject: [ ] ie's PCR Results Dr. Shah called last night to say he's very happy with ie's latest PCR results (I've been on pins and needles waiting for that call). Anyway ie had a 2 log reduction since the last PCR done during BMB done around the time of his diagnosis so in August. I'm still learning and know this is really good for 3 months on Sprycel right? I'm still learning the terms, does this mean he's headed towards some sort of remission. He said if next PCR in February looks as good or better that ie may not have to do the next BMB in February it maybe can wait until the next PCR or 3 months after no promises though because he said it really depends on next PCR. Anyway, still trying to understand all this can someone help me does this mean he is CCR? Is he headed to that sweet word remission? Thanks everyone for your help. SharonT (ie 18 yr old with CML and CF) Quote Link to comment Share on other sites More sharing options...
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