Guest guest Posted December 10, 2007 Report Share Posted December 10, 2007 Hi Congratulations on your good response to Gleevec! I'm not sure what you mean by " your doctor is a cml specialist " as I don't know of any specialists who wouldn't be doing PCR now. FISH has a false negative which varies by lab anywhere from 1-10%. Do you know what the false negative at your lab is? You might be FISH negative at 2.5%--many labs consider that a negative as it's not distinguishable from a false positive. The recommendation at your stage of remission is typically a PCR every 3 months. I would ask for a conversation about this topic and maybe bring in a paper showing the monitoring recommendations. If you want help putting your hands on that, let me know. Best wishes, Dorothy dx 5/2000 PCRU On Dec 10, 2007, at 4:03 PM, silvermusic54022 wrote: > Hello everyone. I have a general question/concern about the > frequency and type of testing that I am receiving. I was diagnosed > in April 07 and started Gleevec at 400mg. I reached CHR within one > month. The first FISH test (early May) read 77%. In late July, a > FISH test from a BMB revealed 14/200 or 7% testing positive for BCR > ABL signal with no sign of mutations. So my response to Gleevec is > good. A third FISH test (by blood) was done at the end of October > and the results were 2.5% testing positive for BCR ABL. I received > the results on Nov. 7. > > I feel very comfortable talking to my oncologist, who is a CML > expert, but I have a few concerns after my last visit about " next > steps. " He would like me to get a CBC done bi-monthly and repeat the > BMB in April. No testing from now until then other than the CBCs. > No mention of PCR testing outside of the initial test at diagnosis. > I believe the logic from his standpoint is that there is no need to > do PCR testing until I reach FISH =0%. I guess I'm just a little > concerned about a 5 month gap in testing, even though I am having a > good response to Gleevec. It's obvious to me that my Dr. is pleased > with my progress, but 5-6 months seems like a pretty big span within > a year of dx. > > Any thoughts would be appreciated. > > Chris > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2007 Report Share Posted December 10, 2007 Hi Welcome to the club that nobody really wants to be a member of. Your response has been outstanding. You have achieved CCR within 6 months and it gets you a number in the Zero Club. O!!! YIPPEEE!!! Number 1136 in the Zero Club Zavie All the CML experts that I know insist on PCR monitoring right from the onset. Certainly after you reach CCR. A FISH of 2.5% is as good as Zero. All FISH testing overestimates the BCR-ABL counts. Each lab has a value for theirown threshold. It is usually around 5%. All the experts will test for BCR-ABL every 3 months. Your doctor is doing it at 6 months. This immediately raises a flag. I would insist on a PCR test ASAP in order to establish a baseline value and then a PCR every 3 months afterwards. If he/she doesn't agree to this, then I would start looking for someone else to treat your CML. Zavie Zavie (age 69) 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 3.2 log reduction Jun/07 3.6 log reduction Sep/07 e-mail: zmiller@... Tel: 613-726-1117 Fax: 309-296-0807 Cell: 613-202-0204 ID: zaviem _____ From: [mailto: ] On Behalf Of silvermusic54022 Sent: December 10, 2007 4:04 PM Subject: [ ] Testing Protocol Hello everyone. I have a general question/concern about the frequency and type of testing that I am receiving. I was diagnosed in April 07 and started Gleevec at 400mg. I reached CHR within one month. The first FISH test (early May) read 77%. In late July, a FISH test from a BMB revealed 14/200 or 7% testing positive for BCR ABL signal with no sign of mutations. So my response to Gleevec is good. A third FISH test (by blood) was done at the end of October and the results were 2.5% testing positive for BCR ABL. I received the results on Nov. 7. I feel very comfortable talking to my oncologist, who is a CML expert, but I have a few concerns after my last visit about " next steps. " He would like me to get a CBC done bi-monthly and repeat the BMB in April. No testing from now until then other than the CBCs. No mention of PCR testing outside of the initial test at diagnosis. I believe the logic from his standpoint is that there is no need to do PCR testing until I reach FISH =0%. I guess I'm just a little concerned about a 5 month gap in testing, even though I am having a good response to Gleevec. It's obvious to me that my Dr. is pleased with my progress, but 5-6 months seems like a pretty big span within a year of dx. Any thoughts would be appreciated. Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2007 Report Share Posted December 11, 2007 Zavie and Dorothy, Thanks for your quick response!! You have confirmed that I need to have a talk with my Dr. Although he never used the term CCR, it is reassuring to know that my percentage can be considered as good as zero. As for club membership, I appreciate the encouragement! > > Hi > > Welcome to the club that nobody really wants to be a member of. > > Your response has been outstanding. You have achieved CCR within 6 months > and it gets you a number in the Zero Club. > > O!!! YIPPEEE!!! > Number 1136 in the Zero Club > Zavie > > All the CML experts that I know insist on PCR monitoring right from the > onset. Certainly after you reach CCR. > > A FISH of 2.5% is as good as Zero. All FISH testing overestimates the > BCR-ABL counts. Each lab has a value for theirown threshold. It is usually > around 5%. > > All the experts will test for BCR-ABL every 3 months. Your doctor is doing > it at 6 months. This immediately raises a flag. I would insist on a PCR test > ASAP in order to establish a baseline value and then a PCR every 3 months > afterwards. If he/she doesn't agree to this, then I would start looking for > someone else to treat your CML. > > Zavie > > Zavie (age 69) > 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 > 3.2 log reduction Jun/07 > 3.6 log reduction Sep/07 > e-mail: zmiller@... > Tel: 613-726-1117 > Fax: 309-296-0807 > Cell: 613-202-0204 > ID: zaviem > > _____ > > From: [mailto: ] On Behalf Of > silvermusic54022 > Sent: December 10, 2007 4:04 PM > > Subject: [ ] Testing Protocol > > Hello everyone. I have a general question/concern about the > frequency and type of testing that I am receiving. I was diagnosed > in April 07 and started Gleevec at 400mg. I reached CHR within one > month. The first FISH test (early May) read 77%. In late July, a > FISH test from a BMB revealed 14/200 or 7% testing positive for BCR > ABL signal with no sign of mutations. So my response to Gleevec is > good. A third FISH test (by blood) was done at the end of October > and the results were 2.5% testing positive for BCR ABL. I received > the results on Nov. 7. > > I feel very comfortable talking to my oncologist, who is a CML > expert, but I have a few concerns after my last visit about " next > steps. " He would like me to get a CBC done bi-monthly and repeat the > BMB in April. No testing from now until then other than the CBCs. > No mention of PCR testing outside of the initial test at diagnosis. > I believe the logic from his standpoint is that there is no need to > do PCR testing until I reach FISH =0%. I guess I'm just a little > concerned about a 5 month gap in testing, even though I am having a > good response to Gleevec. It's obvious to me that my Dr. is pleased > with my progress, but 5-6 months seems like a pretty big span within > a year of dx. > > Any thoughts would be appreciated. > > Chris > > > > Quote Link to comment Share on other sites More sharing options...
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