Guest guest Posted September 7, 2006 Report Share Posted September 7, 2006 Hi Sheila, The FISH test always overestimates the number of CML cells it finds. You need to know what the error level is at the lab that is doing the testing. A simple phone call should get you the answer. The labs that I have seen range anywhere for 2% to 10%. If your lab has an error of 6%, then a result of 3.8% would mean that you qualify for my Zero Club. You need to remember that it is my Zero Club and I created the entry requirements to this club. My standard is: 0 out of 20 cells by BMB gets you into the club. Chances are that with a FISH test of 3.8% you have made it into the club. Make the phone call and let me know what their tolerance level is. Once you hit this value, you have to move to the PCR test to monitor how well you are doing. The PCR test can have a sensitivity of 1 in 1,000,000 cells. At your stage in the disease, I would insist that they start doing PCR testing on your blood. Because the test is very sensitive, you can now track your progress. Because the BMB and FISH tests look at so few cells, they will always report as Zero and you will not know at what level of remission you are at. The best level of remission you can achieve is to be at PCRU. This means that the PCR test was unable to detect any CML cells in your system. The results of the PCR test are reported as a % or a log reduction. The correlation between the two reporting methods are roughly like this 1.0 = 1 log reduction 0.1 = 2 log reduction 0.01 = 3 log reduction I hope that this helps. Get back to me and I expect that you will qualify for a number in the Zero Club. Zavie Zavie (age 68) 67 Shoreham Avenue Ottawa, Canada, 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 PCRU 5/02 at RVH 2.8 log reduction Sep/05 3.0 log reduction Jan/06 e-mail: zmiller@... Tel: 613-726-1117 Fax: 309-296-0807 Cell: 613-202-0204 ID: zaviem [ ] Zero Club Hello Zavie! I dopn't post too often but have in the past and have e-mailed you directly. I was just curious how low you FISH has to be to get in the zero club? I was diagnosed in Aug. 2005 with 98% of my cells being leukemic and started 400mgs of gleevec. I have the problem of nutropenia and my local hemo/onc started playing with my dose and by Christmas I was on 400 mgs every other day. By March my cells started rising they were at 28% and Mayo clinic ordered another bmb. I then started taking 400 mgs every day and repeated the FISH to show an increase in May to 68% so I stared taking 800 mgs (ordered by my Mayo doc) and have tolerated it very well, other than the netropenia so I've had a few nulasta shots. Last FISH I had 2 weeks ago showed 3.8% and I am due to have another draw Oct. 4. I'm just glad things are going in the right direction again. In Nov. of last year my FISH showed 3.4% but that's when my local doc started messing with the dose. THANKS! Sheila dx 8/3/05 Zavie miller <zmiller@...> wrote: Chat Reminder - Tuesday 9:00 PM I'm back. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2006 Report Share Posted September 8, 2006 Hi Zavie! Thanks for the info, I will call Mayo tomorrow and find out the info from the lab and I will be getting back to you. My Mayo doc did discuss starting to do the more sensitive tests after I hit zero with the FISH. Let me see if I understand this though if my FISH shows zero a bmb could show something different? How many cells do they look at with the FISH test? THANKS! Sheila Zavie miller <zmiller@...> wrote: Hi Sheila, The FISH test always overestimates the number of CML cells it finds. You need to know what the error level is at the lab that is doing the testing. A simple phone call should get you the answer. The labs that I have seen range anywhere for 2% to 10%. If your lab has an error of 6%, then a result of 3.8% would mean that you qualify for my Zero Club. You need to remember that it is my Zero Club and I created the entry requirements to this club. My standard is: 0 out of 20 cells by BMB gets you into the club. Chances are that with a FISH test of 3.8% you have made it into the club. Make the phone call and let me know what their tolerance level is. Once you hit this value, you have to move to the PCR test to monitor how well you are doing. The PCR test can have a sensitivity of 1 in 1,000,000 cells. At your stage in the disease, I would insist that they start doing PCR testing on your blood. Because the test is very sensitive, you can now track your progress. Because the BMB and FISH tests look at so few cells, they will always report as Zero and you will not know at what level of remission you are at. The best level of remission you can achieve is to be at PCRU. This means that the PCR test was unable to detect any CML cells in your system. The results of the PCR test are reported as a % or a log reduction. The correlation between the two reporting methods are roughly like this 1.0 = 1 log reduction 0.1 = 2 log reduction 0.01 = 3 log reduction I hope that this helps. Get back to me and I expect that you will qualify for a number in the Zero Club. Zavie Zavie (age 68) 67 Shoreham Avenue Ottawa, Canada, 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 PCRU 5/02 at RVH 2.8 log reduction Sep/05 3.0 log reduction Jan/06 e-mail: zmiller@... Tel: 613-726-1117 Fax: 309-296-0807 Cell: 613-202-0204 ID: zaviem [ ] Zero Club Hello Zavie! I dopn't post too often but have in the past and have e-mailed you directly. I was just curious how low you FISH has to be to get in the zero club? I was diagnosed in Aug. 2005 with 98% of my cells being leukemic and started 400mgs of gleevec. I have the problem of nutropenia and my local hemo/onc started playing with my dose and by Christmas I was on 400 mgs every other day. By March my cells started rising they were at 28% and Mayo clinic ordered another bmb. I then started taking 400 mgs every day and repeated the FISH to show an increase in May to 68% so I stared taking 800 mgs (ordered by my Mayo doc) and have tolerated it very well, other than the netropenia so I've had a few nulasta shots. Last FISH I had 2 weeks ago showed 3.8% and I am due to have another draw Oct. 4. I'm just glad things are going in the right direction again. In Nov. of last year my FISH showed 3.4% but that's when my local doc started messing with the dose. THANKS! Sheila dx 8/3/05 Zavie miller <zmiller@...> wrote: Chat Reminder - Tuesday 9:00 PM I'm back. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2006 Report Share Posted September 8, 2006 The BMB is the least sensitive test. It looks at 20 cells. The FISH test looks at 200 cells. So, if you are Zero by a FISH test, then you would certainly be Zero by a BMB. Zavie [ ] Zero Club Hello Zavie! I dopn't post too often but have in the past and have e-mailed you directly. I was just curious how low you FISH has to be to get in the zero club? I was diagnosed in Aug. 2005 with 98% of my cells being leukemic and started 400mgs of gleevec. I have the problem of nutropenia and my local hemo/onc started playing with my dose and by Christmas I was on 400 mgs every other day. By March my cells started rising they were at 28% and Mayo clinic ordered another bmb. I then started taking 400 mgs every day and repeated the FISH to show an increase in May to 68% so I stared taking 800 mgs (ordered by my Mayo doc) and have tolerated it very well, other than the netropenia so I've had a few nulasta shots. Last FISH I had 2 weeks ago showed 3.8% and I am due to have another draw Oct. 4. I'm just glad things are going in the right direction again. In Nov. of last year my FISH showed 3.4% but that's when my local doc started messing with the dose. THANKS! Sheila dx 8/3/05 Zavie miller <zmiller@...> wrote: Chat Reminder - Tuesday 9:00 PM I'm back. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2006 Report Share Posted September 8, 2006 Hi all I have a question on this post. Then why do doctors do the BMB is the FISH is more sensitive? I had a BMB in March, 06 and refused to have another one. Will be having a FISH this month. My last FISH showed 78% cancerous. Thanks for any answers. Pam Zavie miller <zmiller@...> wrote: The BMB is the least sensitive test. It looks at 20 cells. The FISH test looks at 200 cells. So, if you are Zero by a FISH test, then you would certainly be Zero by a BMB. Zavie [ ] Zero Club Hello Zavie! I dopn't post too often but have in the past and have e-mailed you directly. I was just curious how low you FISH has to be to get in the zero club? I was diagnosed in Aug. 2005 with 98% of my cells being leukemic and started 400mgs of gleevec. I have the problem of nutropenia and my local hemo/onc started playing with my dose and by Christmas I was on 400 mgs every other day. By March my cells started rising they were at 28% and Mayo clinic ordered another bmb. I then started taking 400 mgs every day and repeated the FISH to show an increase in May to 68% so I stared taking 800 mgs (ordered by my Mayo doc) and have tolerated it very well, other than the netropenia so I've had a few nulasta shots. Last FISH I had 2 weeks ago showed 3.8% and I am due to have another draw Oct. 4. I'm just glad things are going in the right direction again. In Nov. of last year my FISH showed 3.4% but that's when my local doc started messing with the dose. THANKS! Sheila dx 8/3/05 Zavie miller <zmiller@...> wrote: Chat Reminder - Tuesday 9:00 PM I'm back. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2007 Report Share Posted February 10, 2007 Hi Sheila, Let me first explain when I started the Zero Club and why. Back in 2000 after I had failed in Interferon I was looking for something else for my CML. A BMT was out of the question. The trials for Gleevec (STI571) were showing excellent results. There were no trials in Canada, so my quest (and that of many CML patients) was to get into a clinical trial for Gleevec. Reading the lists and learning how many people were achieving CCR I was very hopeful. I knew in my heart that if I could get Gleevec, I would be fine. I was lucky to get a spot in the 113 trial at OHSU with Dr. Druker and Dr. Mauro. I started taking Gleevec on March 27, 2001. Starting on that day I began counting the number of patients that achieved 0/20 via a BMB. For myself it was the hope that I would reach that level of remission that kept me going. In September 2001 I achieved 0/20 and became number 102 in the Zero Club. The Zero Club is a club of HOPE. It is especially helpful for the newbies and for many of the turtles out there. My favorite turtle is Cogan. Back then, I reserved number 300 for . She is still not there, but is coming closer and closer to gaining entry in the Club. I also reserved number 1000 for her. She can have any number that she wishes. Now, we all know that being in CCR or PCRU doesn't free you from CML. In my mind, what does it matter if you reach Zero via a BMB or the most sensitive PCR test that is currently available ... you will still relapse if you don't take medication for your CML. Sure there have been cases where the CML hasn't returned after stopping medication, but these are pretty rare events. Now to the FISH test. Because of the nature of the test, it always overestimates the number of CML cells. Debending on the lab that your FISH test is done at, this overestimate will range from 3 to 10%. Without knowing the value for each of the labs, I arbitrarily set that number to 5%. If your FISH test comes back with a value of 5% of less, you gain entry into the Zero Club. I realize that this is an overkill explanation, but it needs to be done every once in a while. And now for everyone who has achieved Zero and hasn't been enrolled into the Zero Club, I urge you to post your story on this list and you will get the next number in sequence. For everyone who has achieved Zero, and hasn't sent a personal thank you message to Dr. Druker via the appreciation album on Jerry's site, I urge you to write one. To get there: go to www.newcmldrug.com click on THANK YOU in the left hand column then click on " view the Appreciation Album " then click on " view/sign the guest book " Last night I read all the personal messages thanking Dr. Druker. What a humbling and uplifting experience. Zavie [ ] Zero Club Hello Zavie! I dopn't post too often but have in the past and have e-mailed you directly. I was just curious how low you FISH has to be to get in the zero club? I was diagnosed in Aug. 2005 with 98% of my cells being leukemic and started 400mgs of gleevec. I have the problem of nutropenia and my local hemo/onc started playing with my dose and by Christmas I was on 400 mgs every other day. By March my cells started rising they were at 28% and Mayo clinic ordered another bmb. I then started taking 400 mgs every day and repeated the FISH to show an increase in May to 68% so I stared taking 800 mgs (ordered by my Mayo doc) and have tolerated it very well, other than the netropenia so I've had a few nulasta shots. Last FISH I had 2 weeks ago showed 3.8% and I am due to have another draw Oct. 4. I'm just glad things are going in the right direction again. In Nov. of last year my FISH showed 3.4% but that's when my local doc started messing with the dose. THANKS! Sheila dx 8/3/05 Zavie miller <zmiller@...> wrote: Chat Reminder - Tuesday 9:00 PM I'm back. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2007 Report Share Posted July 18, 2007 Good for you... I agree on Zavie as well he was and is very kind to me as well, and he trys to speak so we all understand SkipD --- Loggin <loggin23@...> wrote: > I've sat back and read all the dialogue and, quite > frankly, I don't care how any group other than > MYSELF thinks of Zavie and the zero club. He is my > hero and I appreciate a time when my daughter had no > insurance to help pay for Gleevec and he found a way > to get it. > I appreciate that he set up this group. And he > was there to greet us when we had to join it. > Like many others, I was met with the hope and > support we needed to get us through the most > horrendous time in our lives. > Zavie only said what others of us were thinking. > And yes, that might get some folks irate but I speak > the truth. I know from watching my daughter the > effects of Gleevec and CML and I know my daughter > can barely walk up a flight of stairs without > stopping for a breath. I am very thankful to know > she has been approved for her Social Security > Disability. What others are doing, I don't care. > My life centers with my own family. > Sue > > > > --------------------------------- > Need a vacation? Get great deals to amazing places > on Travel. > > [Non-text portions of this message have been > removed] > > SkipD Dx'ed Dec 1978 on Myleran(busulfan) 26 yrs on Hydroxyurea for about 1 year on Gleevec for approx 1.5 years on AMN107(Nilotinib) to now ________________________________________________________________________________\ ____ Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Games. http://get.games./proddesc?gamekey=monopolyherenow Quote Link to comment Share on other sites More sharing options...
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