Guest guest Posted March 27, 2008 Report Share Posted March 27, 2008 Hi , The FISH test has a built in 'false positive' in the test. You need to ask your lab what the number is. For most labs it is between 3-5%. 2 in 500 is 0.4 % which is well below the 3-5% and is a big fat Zero. Nothing to worry about. Your doctor should have a good reason for increasing your dose. If you listened to Dr. Druker yesterday, he said that maintaing CCR is good enough to keep you free of relapse. You are well past a 3 log reduction and almost at PCRU. What Druker said is that there is no long term advantage in attaining PCRU over CCR. In your case I would think it doesn't make any sense to increase your dose of Gleevec from your present 400 mg. 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 3.5 log reduction Feb/08 e-mail: zmiller@... Tel: 613-726-1117 Fax: 309-296-0807 Cell: 613-202-0204 ID: zaviem YM: zaviemiller Skype: Zavie _____ From: [mailto: ] On Behalf Of nchando@... Sent: March 27, 2008 9:53 AM Subject: [ ] Re: teleconference I listened to the teleconference and found it very encouraging. Congratulations to Tracey for getting through with her question! I had a question but wasn't chosen. Maybe someone here can help me. I noticed Dr. Druker spoke quite a bit about cytogenic testing and pcr, but he never mentioned FISH testing! I wonder if he still does it or doesn't think it's valuable? My question is important to me, because although my cytogenics remain zero, and my pcr is 0.003%, my FISH came back 2 positive cells out of 500. How concerned should I be about that? My doctor mentioned increasing my Gleevec from 400 to 800, but I haven't done it yet. What do you think? Thanks, in NY **************Create a Home Theater Like the Pros. Watch the video on AOL Home. (http://home. <http://home.aol.com/diy/home-improvement-eric-stromer?video=15?ncid=aolhom0 0030000000001> aol.com/diy/home-improvement-eric-stromer?video=15?ncid=aolhom00030000000001 ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2008 Report Share Posted March 27, 2008 I get so tired of the Doctors wanting to increase the dosage. I would not do it. See what happens in another three months. I had high platlets 517 and he wanted to increase my Tasigna to 800mg right away. Well guess what.my next test showed it had dropped down to 240. I could have told him that the platelets went up because I was off all meds for about a month. I just told him I did not want to increase. I have been on Tasigna for 2 weeks and I have never felt so good. I am taking advantage of it because who knows what comes next. Ask him is you could wait awhile Sharon _____ From: [mailto: ] On Behalf Of Cogan Sent: Thursday, March 27, 2008 12:24 PM Subject: [ ] Re: teleconference Maybe someone here can help me. I noticed Dr. Druker spoke quite a bit about cytogenic testing and pcr, but he never mentioned FISH testing! I wonder if he still does it or doesn't think it's valuable? My question is important to me, because although my cytogenics remain zero, and my pcr is 0.003%, my FISH came back 2 positive cells out of 500. How concerned should I be about that? My doctor mentioned increasing my Gleevec from 400 to 800, but I haven't done it yet. What do you think? _____________________ Hi in NY, I am a Dr. Druker patient and I just saw him for testing. On me he does cyto, pcr and FISH.....but that is because I have not been CCR for that long (just 6 months). My cyto was zero.....my FISH is 2.5% (or 5 bad cells in 200) and my pcr is about .52. YOU should not be concerned at all.......with your low pcr....your FISH value is most certainly a false positive (which happens with FISH). I don't think you need to change your dose at all....you have a very good response to Gleevec, which your prc indicates. IF you onc. does not understand this better than this, ask him/her to contact Dr. D for advice. _________________ To Lottie: about being the oldest turtle.....I think you may be, but I am one of your clan. The best I ever got to on 800mg Gleevec was about 25-35% ph+ (a major cyto response). Slowly on 100mg Sprycel, my number went down and at the 2 year mark I got my first zero (CCR). This was 9 years post dx. Dr. D told me just the other day that mostly he wants to see stable or a decrease in the ph+ count....that is the important thing. Us slow turtles should do fine....we already have! C. (the Maui Turtle) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2008 Report Share Posted March 27, 2008 I think some doctors don't realize how stressful they make their patients when they want to increase dosage over one hundreth of a point. I am no longer in CCR, my pcr has gone from 0.087 to 5.5 and even though we realize that is not what we want, Dr. Talpaz said he will re-evaluate me in another month. I had been in CCR for 2 1/2 years, according to Dr. Druker this is good, right? I think perhaps I am going into the XL228 trial until the new Ariad trial comes up. My point is, as high as my pcr has gone up, none of us are in a dither about it. I can't go higher on Sprycel, I've had PE twice, and am still on 20 mg Prednisone. Why are we waiting on the XL228? Perhaps that is when the next dose increase is, I'm not sure. I'm happy if I reach CCR again, and just stay there. Blessings everyone, Bobby Cogan <ncogan@...> wrote: Maybe someone here can help me. I noticed Dr. Druker spoke quite a bit about cytogenic testing and pcr, but he never mentioned FISH testing! I wonder if he still does it or doesn't think it's valuable? My question is important to me, because although my cytogenics remain zero, and my pcr is 0.003%, my FISH came back 2 positive cells out of 500. How concerned should I be about that? My doctor mentioned increasing my Gleevec from 400 to 800, but I haven't done it yet. What do you think? _____________________ Hi in NY, I am a Dr. Druker patient and I just saw him for testing. On me he does cyto, pcr and FISH.....but that is because I have not been CCR for that long (just 6 months). My cyto was zero.....my FISH is 2.5% (or 5 bad cells in 200) and my pcr is about .52. YOU should not be concerned at all.......with your low pcr....your FISH value is most certainly a false positive (which happens with FISH). I don't think you need to change your dose at all....you have a very good response to Gleevec, which your prc indicates. IF you onc. does not understand this better than this, ask him/her to contact Dr. D for advice. _________________ To Lottie: about being the oldest turtle.....I think you may be, but I am one of your clan. The best I ever got to on 800mg Gleevec was about 25-35% ph+ (a major cyto response). Slowly on 100mg Sprycel, my number went down and at the 2 year mark I got my first zero (CCR). This was 9 years post dx. Dr. D told me just the other day that mostly he wants to see stable or a decrease in the ph+ count....that is the important thing. Us slow turtles should do fine....we already have! C. (the Maui Turtle) a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 02/2000 - Gleevec Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 - Gleevec/Zarnestra Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months #840 - Zavie's Zero Club 09/2006 - out of CCR SKYPE: RCD1929 Quote Link to comment Share on other sites More sharing options...
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