Guest guest Posted October 29, 2008 Report Share Posted October 29, 2008 Hi Kathy, My first concern is that you don't seem to be getting any standard of care here. Your tests are being sent all over the place and they're not done on any regular interval. You should have your PCR's done at the same lab each time and at regular 3 month intervals. The only tests that can be compared are the ones that were done at the same place so that basically means the last two from Quest since the first 3 that were done at MDA were too long ago to matter. It does appear from this that you increased more than a log but I wouldn't worry just yet. I would suggest you have another PCR sent to the same Quest lab to confirm your latest result and I would also suggest a BMB because that's your gold standard to know what's happening in your marrow. If another PCR test shows an increase I would also ask for a mutation test. It's important to know which mutation you have if any, before choosing a new drug since some mutations respond better to some drugs than others. As a general rule, a 2 log reduction is equivalent to CCR but because we're all different, the only way to know for sure is to have a BMB done with a peripheral blood PCR at the same time to compare. Hope this helps, Tracey > > T was dx'd in May 2005 and have taken 400 mg of gleevec since. These > are my PCR results: > 11/05 .007 Vanderbilt molecular lab > 5/06 .17 MD > 9/06 .32 MD > 4/07 .06 MD > 2/08 .0007 ARUP labs > 8/08 .006 Quest labs > 10/08 .015 Quest labs > > I know it is hard to compare different lab results. The dr at MD > said that Quest results looked more impressive b/c they > added an extra 0. Have I lost 1.5 log of response since Feb? My > local dr thinks we should up the gleevec or change drugs. First we > will do the Novartis test for gleevec levels, then I asked for 1 more > PCR from Quest in about 6 weeks. Should I ask for a BMB for > cytogenetics to be sure the CCR remains? Does a 2 log reduction > correspond to CCR? Sorry to have so much information and so many > questions, but any insight you may have would be really appreciated. > I will seek a new Dr at Vanderbilt in January, but I would like one > more Quest PCR before I go. > Thanks-- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2008 Report Share Posted October 29, 2008 Kathy: Listen to Tracey! I tried to Listen to my world renowned CML specialist who cared little For my QOL and once I quit Arguing with Tracey, I was Better for it. With warm regards, Matt Maynor 8132 Hollyridge Road ville, FL 32256 mtmaynor@... 904-219-9108 [ ] Re: Changing treatment Hi Kathy, My first concern is that you don't seem to be getting any standard of care here. Your tests are being sent all over the place and they're not done on any regular interval. You should have your PCR's done at the same lab each time and at regular 3 month intervals. The only tests that can be compared are the ones that were done at the same place so that basically means the last two from Quest since the first 3 that were done at MDA were too long ago to matter. It does appear from this that you increased more than a log but I wouldn't worry just yet. I would suggest you have another PCR sent to the same Quest lab to confirm your latest result and I would also suggest a BMB because that's your gold standard to know what's happening in your marrow. If another PCR test shows an increase I would also ask for a mutation test. It's important to know which mutation you have if any, before choosing a new drug since some mutations respond better to some drugs than others. As a general rule, a 2 log reduction is equivalent to CCR but because we're all different, the only way to know for sure is to have a BMB done with a peripheral blood PCR at the same time to compare. Hope this helps, Tracey > > T was dx'd in May 2005 and have taken 400 mg of [The entire original message is not included]= Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2008 Report Share Posted October 30, 2008 Hi Kathy, In addition to 's concerns and suggestions which you should follow up on, I have a concern. Why are you waiting until January to get to see an experienced CML doctor? You have been very fortunate so far because you have had a great response to Gleevec. A 1 log increase in your PCR sets off a red flag for me. You need to get another PCR test done ASAP in order to confirm that either the last test result was in error or that you are beginning to relapse. If you are becoming resistant to Gleevec, then you would want to do mutation testing ASAP in order to switch to the appropriate medication. Please don't wait so long, 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 Tracey Sent: October 29, 2008 3:55 PM Subject: [ ] Re: Changing treatment Hi Kathy, My first concern is that you don't seem to be getting any standard of care here. Your tests are being sent all over the place and they're not done on any regular interval. You should have your PCR's done at the same lab each time and at regular 3 month intervals. The only tests that can be compared are the ones that were done at the same place so that basically means the last two from Quest since the first 3 that were done at MDA were too long ago to matter. It does appear from this that you increased more than a log but I wouldn't worry just yet. I would suggest you have another PCR sent to the same Quest lab to confirm your latest result and I would also suggest a BMB because that's your gold standard to know what's happening in your marrow. If another PCR test shows an increase I would also ask for a mutation test. It's important to know which mutation you have if any, before choosing a new drug since some mutations respond better to some drugs than others. As a general rule, a 2 log reduction is equivalent to CCR but because we're all different, the only way to know for sure is to have a BMB done with a peripheral blood PCR at the same time to compare. Hope this helps, Tracey > > T was dx'd in May 2005 and have taken 400 mg of gleevec since. These > are my PCR results: > 11/05 .007 Vanderbilt molecular lab > 5/06 .17 MD > 9/06 .32 MD > 4/07 .06 MD > 2/08 .0007 ARUP labs > 8/08 .006 Quest labs > 10/08 .015 Quest labs > > I know it is hard to compare different lab results. The dr at MD > said that Quest results looked more impressive b/c they > added an extra 0. Have I lost 1.5 log of response since Feb? My > local dr thinks we should up the gleevec or change drugs. First we > will do the Novartis test for gleevec levels, then I asked for 1 more > PCR from Quest in about 6 weeks. Should I ask for a BMB for > cytogenetics to be sure the CCR remains? Does a 2 log reduction > correspond to CCR? Sorry to have so much information and so many > questions, but any insight you may have would be really appreciated. > I will seek a new Dr at Vanderbilt in January, but I would like one > more Quest PCR before I go. > Thanks-- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2008 Report Share Posted October 30, 2008 Thank you very much for responding. Your help is really appreciated. I will call my Dr to reschedule the 6 wk PCR and to schedule a BMB. I will also call Vanderbilt to schedule an appointment with a more experienced hem/onc. If mutation testing is needed, I'll get it through them. I do feel the need to do one more PCR with the current Dr to ensure it goes to Quest so that we can have a meaningful comparison. Your concern and your expertise are really a blessing to us all. Thank you again for guiding me through this. I hope I can soon report it was all a false alarm. Thanks, Kathy > > > > T was dx'd in May 2005 and have taken 400 mg of gleevec since. > These > > are my PCR results: > > 11/05 .007 Vanderbilt molecular lab > > 5/06 .17 MD > > 9/06 .32 MD > > 4/07 .06 MD > > 2/08 .0007 ARUP labs > > 8/08 .006 Quest labs > > 10/08 .015 Quest labs > > > > I know it is hard to compare different lab results. The dr at MD > > said that Quest results looked more impressive b/c they > > added an extra 0. Have I lost 1.5 log of response since Feb? My > > local dr thinks we should up the gleevec or change drugs. First we > > will do the Novartis test for gleevec levels, then I asked for 1 > more > > PCR from Quest in about 6 weeks. Should I ask for a BMB for > > cytogenetics to be sure the CCR remains? Does a 2 log reduction > > correspond to CCR? Sorry to have so much information and so many > > questions, but any insight you may have would be really > appreciated. > > I will seek a new Dr at Vanderbilt in January, but I would like one > > more Quest PCR before I go. > > Thanks-- > > > > > > Quote Link to comment Share on other sites More sharing options...
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