Guest guest Posted August 1, 2007 Report Share Posted August 1, 2007 Hi Mark, BCR/ABL RATIO 0.00005 This is certainly a good result (0.005%) and I believe it's well below MMR. My lab, Stanford hospital (as I think MD ), gives the result as this ratio. In simple terms it's the number of cells with the cml gene (with the translocation) divided by the total number of cells in the blood sample, but in fact it's more complicated than that (it's the ratio of the number of copies after making the cells proliferate a number of cycles) and it changes from lab to lab, even with the ones that are converging towards an emerging international standard. MMR is defined as a 1000 fold reduction (3 log) of this ratio from the value at dx (often an average value for the lab). Depending on the labs (the ones that use this ratio) MMR is around 0.001 and 0.0005. To really tell what is the reduction of your cml cells something is missing in this report : the ratio at dx, or the average ratio at dx (over previous patients). On my test this baseline ratio is 1.04, but it has no reason to be the same at your lab. Also the limit of detection at 1 over 1000 cell is weird, it should be 1 to 100000 or better. Anyway it's a darn good result at one year, I have still about 50 times that (dx in march 05) and I am not so worried, it is still going down, slowly getting to MMR, and I am staying at 400mg to keep enjoying scuba, unless it goes up. Cheers, Marcos. -- Marcos Perreau Guimaraes Suppes Brain Lab Ventura Hall - CSLI Stanford University 220 Panama street Stanford CA 94305-4101 650 614 2305 650 630 5015 (cell) marcospg@... montereyunderwater@... www.stanford.edu/~marcospg/ On 7/31/07, markostapiak <no_reply > wrote: > > Hello all, > > I'm a 29 year old white male who was diagnosed with CML in June 2006. > My WBC at the time was 335,000. That's down to normal and all my other > numbers are stable. > > I was started on 400mg of Gleevec in July 2006 and stepped up to 600mg > in August 2006, which is my current dosage. > > Here's a copy of my latest test: > > bcr/abl,t(9;22) Translocation Quantitative Assay by RT-PCR > > BCR/ABL SOURCE NOT SPEC > > BCR/ABL QUANTITATIVE 1 Q POS > > Positive: There is evidence of the bcr/abl fusion > > trancript by RT-PCR analysis. > > This result has been reviewed and approved by > > D. B., M.D. [used initials to protect doc's identity] > > Results are reported as a ratio of bcr/abl transcripts to > > G6PDH transcripts.The limit of detection for this assay > > is 1 in 1,000 cells. > > BCR/ABL RATIO 0.00005 > > BCR/ABL PREVIOUS SOURCE NOT APPL > > BCR/ABL PREVIOUS DRAW DT/TIME NOT APPL > > BCR/ABL PREVIOUS QUANT 1 NOT APPL > > BCR/ABL PREVIOUS QUANT RATIO NOT APPL > > So, my doctor said that this means a Major Molecular Response. What > does that really mean? I know that's pretty good, but is that as good > as it can get? > > Put it in laymans terms, please. I appreciate the help. > > Sincerely, > Mark > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2007 Report Share Posted August 1, 2007 Hi Mark and Marcos, Anytime a number is that low it's a good thing but I'm not sure how significant it is if the PCR's sensitivity was only 1 in 1,000. By definition, the famous 3 log reduction that we're all aiming for (which is how they define a major molecular response) , is a reduction in transcripts by 1000 fold. Now if someone is still positive on a test that only has a sensitivity of 1,000, would that not mean that their reduction is less than a 1000? As I've stated in previous posts, math is hardly my strong suit but I do know that the experts have said that PCR's with sensitivities of less than 1 in 100,000 are unreliable and give little information. Mark, I would suggest that you ask if you can send your samples to another lab where they do more sensitive testing and this way you'll know exactly where you stand. Tracey > > > > Hello all, > > > > I'm a 29 year old white male who was diagnosed with CML in June 2006. > > My WBC at the time was 335,000. That's down to normal and all my other > > numbers are stable. > > > > I was started on 400mg of Gleevec in July 2006 and stepped up to 600mg > > in August 2006, which is my current dosage. > > > > Here's a copy of my latest test: > > > > bcr/abl,t(9;22) Translocation Quantitative Assay by RT-PCR > > > > BCR/ABL SOURCE NOT SPEC > > > > BCR/ABL QUANTITATIVE 1 Q POS > > > > Positive: There is evidence of the bcr/abl fusion > > > > trancript by RT-PCR analysis. > > > > This result has been reviewed and approved by > > > > D. B., M.D. [used initials to protect doc's identity] > > > > Results are reported as a ratio of bcr/abl transcripts to > > > > G6PDH transcripts.The limit of detection for this assay > > > > is 1 in 1,000 cells. > > > > BCR/ABL RATIO 0.00005 > > > > BCR/ABL PREVIOUS SOURCE NOT APPL > > > > BCR/ABL PREVIOUS DRAW DT/TIME NOT APPL > > > > BCR/ABL PREVIOUS QUANT 1 NOT APPL > > > > BCR/ABL PREVIOUS QUANT RATIO NOT APPL > > > > So, my doctor said that this means a Major Molecular Response. What > > does that really mean? I know that's pretty good, but is that as good > > as it can get? > > > > Put it in laymans terms, please. I appreciate the help. > > > > Sincerely, > > Mark > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2007 Report Share Posted August 1, 2007 O!!! YIPPEEE!!! Number 1086 in the Zero Club Zavie Marko, could you please send me your email address. I have some questions and information for you. In layman’s terms, a 3 log reduction is as good as it gets. There is virtually no chance that you will relapse given this response. A very small percentage of patients achieve PCRU, but it doesn’t change the long term outcome. 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 e-mail: zmiller@... Tel: 613-726-1117 Fax: 309-296-0807 Cell: 613-202-0204 ID: zaviem _____ From: [mailto: ] On Behalf Of markostapiak Sent: August 1, 2007 1:51 AM Subject: [ ] Major Molecular Response Hello all, I'm a 29 year old white male who was diagnosed with CML in June 2006. My WBC at the time was 335,000. That's down to normal and all my other numbers are stable. I was started on 400mg of Gleevec in July 2006 and stepped up to 600mg in August 2006, which is my current dosage. Here's a copy of my latest test: bcr/abl,t(9;22) Translocation Quantitative Assay by RT-PCR BCR/ABL SOURCE NOT SPEC BCR/ABL QUANTITATIVE 1 Q POS Positive: There is evidence of the bcr/abl fusion trancript by RT-PCR analysis. This result has been reviewed and approved by D. B., M.D. [used initials to protect doc's identity] Results are reported as a ratio of bcr/abl transcripts to G6PDH transcripts.The limit of detection for this assay is 1 in 1,000 cells. BCR/ABL RATIO 0.00005 BCR/ABL PREVIOUS SOURCE NOT APPL BCR/ABL PREVIOUS DRAW DT/TIME NOT APPL BCR/ABL PREVIOUS QUANT 1 NOT APPL BCR/ABL PREVIOUS QUANT RATIO NOT APPL So, my doctor said that this means a Major Molecular Response. What does that really mean? I know that's pretty good, but is that as good as it can get? Put it in laymans terms, please. I appreciate the help. Sincerely, Mark Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2007 Report Share Posted August 1, 2007 Hi Tracey, If I had to bet I d say the 1000 is wrong (typo ?), 1/0.00005 is 20000 so the sensibility should be at least 1:20000. I find strange also that they don't give the baseline and the log reduction, what is the standard interpretation of this test. Though they give the house keeping gene (G6PDH) what I don't have on my reports. Marcos. On 8/1/07, Tracey <traceyincanada@...> wrote: > > Hi Mark and Marcos, > > Anytime a number is that low it's a good thing but I'm not sure how > significant it is if the PCR's sensitivity was only 1 in 1,000. > > By definition, the famous 3 log reduction that we're all aiming for > (which is how they define a major molecular response) , is a > reduction in transcripts by 1000 fold. Now if someone is still > positive on a test that only has a sensitivity of 1,000, would that > not mean that their reduction is less than a 1000? > > As I've stated in previous posts, math is hardly my strong suit but I > do know that the experts have said that PCR's with sensitivities of > less than 1 in 100,000 are unreliable and give little information. > > Mark, I would suggest that you ask if you can send your samples to > another lab where they do more sensitive testing and this way you'll > know exactly where you stand. > > Tracey > > > > > > > > Hello all, > > > > > > I'm a 29 year old white male who was diagnosed with CML in June > 2006. > > > My WBC at the time was 335,000. That's down to normal and all my > other > > > numbers are stable. > > > > > > I was started on 400mg of Gleevec in July 2006 and stepped up to > 600mg > > > in August 2006, which is my current dosage. > > > > > > Here's a copy of my latest test: > > > > > > bcr/abl,t(9;22) Translocation Quantitative Assay by RT-PCR > > > > > > BCR/ABL SOURCE NOT SPEC > > > > > > BCR/ABL QUANTITATIVE 1 Q POS > > > > > > Positive: There is evidence of the bcr/abl fusion > > > > > > trancript by RT-PCR analysis. > > > > > > This result has been reviewed and approved by > > > > > > D. B., M.D. [used initials to protect doc's identity] > > > > > > Results are reported as a ratio of bcr/abl transcripts to > > > > > > G6PDH transcripts.The limit of detection for this assay > > > > > > is 1 in 1,000 cells. > > > > > > BCR/ABL RATIO 0.00005 > > > > > > BCR/ABL PREVIOUS SOURCE NOT APPL > > > > > > BCR/ABL PREVIOUS DRAW DT/TIME NOT APPL > > > > > > BCR/ABL PREVIOUS QUANT 1 NOT APPL > > > > > > BCR/ABL PREVIOUS QUANT RATIO NOT APPL > > > > > > So, my doctor said that this means a Major Molecular Response. > What > > > does that really mean? I know that's pretty good, but is that as > good > > > as it can get? > > > > > > Put it in laymans terms, please. I appreciate the help. > > > > > > Sincerely, > > > Mark > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2007 Report Share Posted August 1, 2007 Hi Marcos, I have heard in the past that some labs are only doing 1 in 1,000 PCR's but of course it is very possible that Mark made a typo when he reported it. It seems to me that a PCR that's that low in sensitivity is a waste of time and not much better than a FISH. I have a few old PCR reports that mention the housekeeping gene. My more recent ones don't mention it though and it makes me wonder which gene they're using but then again, I don't think I really care Being mathematically challenged the way I am, I'm just very grateful that my lab says exactly what my log reduction is, this way I don't have to figure anything out Tracey -- In , " Marcos Perreau Guimaraes " <montereyunderwater@...> wrote: > > Hi Tracey, > If I had to bet I d say the 1000 is wrong (typo ?), 1/0.00005 is 20000 so > the sensibility should be at least 1:20000. I find strange also that they > don't give the baseline and the log reduction, what is the standard > interpretation of this test. Though they give the house keeping gene (G6PDH) > what I don't have on my reports. > Marcos. > > > On 8/1/07, Tracey <traceyincanada@...> wrote: > > > > Hi Mark and Marcos, > > > > Anytime a number is that low it's a good thing but I'm not sure how > > significant it is if the PCR's sensitivity was only 1 in 1,000. > > > > By definition, the famous 3 log reduction that we're all aiming for > > (which is how they define a major molecular response) , is a > > reduction in transcripts by 1000 fold. Now if someone is still > > positive on a test that only has a sensitivity of 1,000, would that > > not mean that their reduction is less than a 1000? > > > > As I've stated in previous posts, math is hardly my strong suit but I > > do know that the experts have said that PCR's with sensitivities of > > less than 1 in 100,000 are unreliable and give little information. > > > > Mark, I would suggest that you ask if you can send your samples to > > another lab where they do more sensitive testing and this way you'll > > know exactly where you stand. > > > > Tracey > > > > > > > > > > > > Hello all, > > > > > > > > I'm a 29 year old white male who was diagnosed with CML in June > > 2006. > > > > My WBC at the time was 335,000. That's down to normal and all my > > other > > > > numbers are stable. > > > > > > > > I was started on 400mg of Gleevec in July 2006 and stepped up to > > 600mg > > > > in August 2006, which is my current dosage. > > > > > > > > Here's a copy of my latest test: > > > > > > > > bcr/abl,t(9;22) Translocation Quantitative Assay by RT-PCR > > > > > > > > BCR/ABL SOURCE NOT SPEC > > > > > > > > BCR/ABL QUANTITATIVE 1 Q POS > > > > > > > > Positive: There is evidence of the bcr/abl fusion > > > > > > > > trancript by RT-PCR analysis. > > > > > > > > This result has been reviewed and approved by > > > > > > > > D. B., M.D. [used initials to protect doc's identity] > > > > > > > > Results are reported as a ratio of bcr/abl transcripts to > > > > > > > > G6PDH transcripts.The limit of detection for this assay > > > > > > > > is 1 in 1,000 cells. > > > > > > > > BCR/ABL RATIO 0.00005 > > > > > > > > BCR/ABL PREVIOUS SOURCE NOT APPL > > > > > > > > BCR/ABL PREVIOUS DRAW DT/TIME NOT APPL > > > > > > > > BCR/ABL PREVIOUS QUANT 1 NOT APPL > > > > > > > > BCR/ABL PREVIOUS QUANT RATIO NOT APPL > > > > > > > > So, my doctor said that this means a Major Molecular Response. > > What > > > > does that really mean? I know that's pretty good, but is that as > > good > > > > as it can get? > > > > > > > > Put it in laymans terms, please. I appreciate the help. > > > > > > > > Sincerely, > > > > Mark > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2007 Report Share Posted August 2, 2007 Hi, I'm so glad that folks have chimed in on this one. I double checked my PCR results, and they report 1:1000 sensitivity ratio (sensitivity ratio? Is that the correct terminology?). I'll have to ask my doctor. When I go in for a check up in September, I'll ask him all the questions that you've raised, as well as discuss the answers you've offered, especially one mentioning that a 3log reduction means " virtually no chance of relapse. " Truly? This is pretty confusing stuff. Sincerely, Mark > > > > > > > > > > Hello all, > > > > > > > > > > I'm a 29 year old white male who was diagnosed with CML in > June > > > 2006. > > > > > My WBC at the time was 335,000. That's down to normal and all > my > > > other > > > > > numbers are stable. > > > > > > > > > > I was started on 400mg of Gleevec in July 2006 and stepped up > to > > > 600mg > > > > > in August 2006, which is my current dosage. > > > > > > > > > > Here's a copy of my latest test: > > > > > > > > > > bcr/abl,t(9;22) Translocation Quantitative Assay by RT-PCR > > > > > > > > > > BCR/ABL SOURCE NOT SPEC > > > > > > > > > > BCR/ABL QUANTITATIVE 1 Q POS > > > > > > > > > > Positive: There is evidence of the bcr/abl fusion > > > > > > > > > > trancript by RT-PCR analysis. > > > > > > > > > > This result has been reviewed and approved by > > > > > > > > > > D. B., M.D. [used initials to protect doc's identity] > > > > > > > > > > Results are reported as a ratio of bcr/abl transcripts to > > > > > > > > > > G6PDH transcripts.The limit of detection for this assay > > > > > > > > > > is 1 in 1,000 cells. > > > > > > > > > > BCR/ABL RATIO 0.00005 > > > > > > > > > > BCR/ABL PREVIOUS SOURCE NOT APPL > > > > > > > > > > BCR/ABL PREVIOUS DRAW DT/TIME NOT APPL > > > > > > > > > > BCR/ABL PREVIOUS QUANT 1 NOT APPL > > > > > > > > > > BCR/ABL PREVIOUS QUANT RATIO NOT APPL > > > > > > > > > > So, my doctor said that this means a Major Molecular Response. > > > What > > > > > does that really mean? I know that's pretty good, but is that > as > > > good > > > > > as it can get? > > > > > > > > > > Put it in laymans terms, please. I appreciate the help. > > > > > > > > > > Sincerely, > > > > > Mark > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2007 Report Share Posted August 2, 2007 Hi Mark, The followup of the IRIS patients (from initial clinical trials to last year) shows that 100% of these people that reach MMR in the 1st 18 months of treatment have no disease progression in 5 years (going from chronic phase to more advanced accelerated or blast phases). For the people that reach CCR at 12 month 97% have no disease progression in 5 years. The other very good thing is the available data show the odds of having cml progressing decrease with time : longer you stay in remission, better are the chances of staying in remission. Here's a link to the IRIS 5 year update slides from Novartis : http://www.glivec.com/pdfs/2-IRIS-5YearUpdate.pdf For your PCR test you should ask your doctor, I agree with Tracey, 1:1000 is not good enough. Marcos. On 8/2/07, markostapiak <no_reply > wrote: > > Hi, > > I'm so glad that folks have chimed in on this one. I double checked my > PCR results, and they report 1:1000 sensitivity ratio (sensitivity > ratio? Is that the correct terminology?). I'll have to ask my doctor. > > When I go in for a check up in September, I'll ask him all the > questions that you've raised, as well as discuss the answers you've > offered, especially one mentioning that a 3log reduction means > " virtually no chance of relapse. " Truly? > > This is pretty confusing stuff. > > Sincerely, > Mark > > > > > > > > > > > > > > Hello all, > > > > > > > > > > > > I'm a 29 year old white male who was diagnosed with CML in > > June > > > > 2006. > > > > > > My WBC at the time was 335,000. That's down to normal and all > > my > > > > other > > > > > > numbers are stable. > > > > > > > > > > > > I was started on 400mg of Gleevec in July 2006 and stepped up > > to > > > > 600mg > > > > > > in August 2006, which is my current dosage. > > > > > > > > > > > > Here's a copy of my latest test: > > > > > > > > > > > > bcr/abl,t(9;22) Translocation Quantitative Assay by RT-PCR > > > > > > > > > > > > BCR/ABL SOURCE NOT SPEC > > > > > > > > > > > > BCR/ABL QUANTITATIVE 1 Q POS > > > > > > > > > > > > Positive: There is evidence of the bcr/abl fusion > > > > > > > > > > > > trancript by RT-PCR analysis. > > > > > > > > > > > > This result has been reviewed and approved by > > > > > > > > > > > > D. B., M.D. [used initials to protect doc's identity] > > > > > > > > > > > > Results are reported as a ratio of bcr/abl transcripts to > > > > > > > > > > > > G6PDH transcripts.The limit of detection for this assay > > > > > > > > > > > > is 1 in 1,000 cells. > > > > > > > > > > > > BCR/ABL RATIO 0.00005 > > > > > > > > > > > > BCR/ABL PREVIOUS SOURCE NOT APPL > > > > > > > > > > > > BCR/ABL PREVIOUS DRAW DT/TIME NOT APPL > > > > > > > > > > > > BCR/ABL PREVIOUS QUANT 1 NOT APPL > > > > > > > > > > > > BCR/ABL PREVIOUS QUANT RATIO NOT APPL > > > > > > > > > > > > So, my doctor said that this means a Major Molecular Response. > > > > What > > > > > > does that really mean? I know that's pretty good, but is that > > as > > > > good > > > > > > as it can get? > > > > > > > > > > > > Put it in laymans terms, please. I appreciate the help. > > > > > > > > > > > > Sincerely, > > > > > > Mark > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2007 Report Share Posted August 2, 2007 Hello Tracey, Marcos, and Mark, I go to University of California San Diego (UCSD) which sends PCRs to ARUP lab in Salt Lake City, Utah. The PCR report lists no lab baseline, no log reduction, and a 1:1000 sensitivity. Yep, only three zeros. I have already discussed this with my onc who, after contacting someone at ARUP, is OK with the ARUP sensitivity. But I am not comfortable with a PCR with only a 1:1000 sensitivity. So, at my own expense, I send an additional PCR sample to OHSU in Portland which has a 1:100,000 sensitivity. Both ARUP and OHSU use the G6PDH housekeeping gene. My only PCR results are: ARUP 1-07 .00076 OHSU 3-07 .083 ARUP 5-07 .00021 OHSU 6-07 .079 Though I haven't had a PCR at both ARUP and OHSU done the same month, you still can see that the ARUP results and the OHSU results are not similar. I do so wish that UCSD contracted with a lab with a more sensitve quantitative PCR or let me send my sample to a lab with a 1:100,000 sensitivy, but as they do neither, I will eat the cost and send additional samples to OHSU. JoAnn Dx: 8/06 Gleevec 400 mg. > > > > Hi Mark and Marcos, > > > > Anytime a number is that low it's a good thing but I'm not sure how > > significant it is if the PCR's sensitivity was only 1 in 1,000. > > > > By definition, the famous 3 log reduction that we're all aiming for > > (which is how they define a major molecular response) , is a > > reduction in transcripts by 1000 fold. Now if someone is still > > positive on a test that only has a sensitivity of 1,000, would that > > not mean that their reduction is less than a 1000? > > > > As I've stated in previous posts, math is hardly my strong suit but I > > do know that the experts have said that PCR's with sensitivities of > > less than 1 in 100,000 are unreliable and give little information. > > > > Mark, I would suggest that you ask if you can send your samples to > > another lab where they do more sensitive testing and this way you'll > > know exactly where you stand. > > > > Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2007 Report Share Posted August 2, 2007 Hi JoAnn, Thanks for the information. From what my hematologists here (California) and in France told me they are trying to get some standardization of the molecular monitoring, but it looks that there's still a lot to be done. There is about a factor 100 between you results from ARUP and OSHU. What does the OSHU report says ? For what it costs you should have some detailed information. Marcos. On 8/2/07, basuinokelly2002 <basuinokelly@...> wrote: > > > Hello Tracey, Marcos, and Mark, > > I go to University of California San Diego (UCSD) which sends PCRs to > ARUP lab in Salt Lake City, Utah. The PCR report lists no lab > baseline, no log reduction, and a 1:1000 sensitivity. Yep, only three > zeros. I have already discussed this with my onc who, after contacting > someone at ARUP, is OK with the ARUP sensitivity. But I am not > comfortable with a PCR with only a 1:1000 sensitivity. So, at my own > expense, I send an additional PCR sample to OHSU in Portland which has > a 1:100,000 sensitivity. Both ARUP and OHSU use the G6PDH housekeeping > gene. My only PCR results are: > > ARUP 1-07 .00076 > OHSU 3-07 .083 > ARUP 5-07 .00021 > OHSU 6-07 .079 > > Though I haven't had a PCR at both ARUP and OHSU done the same month, > you still can see that the ARUP results and the OHSU results are not > similar. I do so wish that UCSD contracted with a lab with a more > sensitve quantitative PCR or let me send my sample to a lab with a > 1:100,000 sensitivy, but as they do neither, I will eat the cost and > send additional samples to OHSU. > > JoAnn > Dx: 8/06 > Gleevec 400 mg. > > > > > > > > Hi Mark and Marcos, > > > > > > Anytime a number is that low it's a good thing but I'm not sure how > > > significant it is if the PCR's sensitivity was only 1 in 1,000. > > > > > > By definition, the famous 3 log reduction that we're all aiming for > > > (which is how they define a major molecular response) , is a > > > reduction in transcripts by 1000 fold. Now if someone is still > > > positive on a test that only has a sensitivity of 1,000, would that > > > not mean that their reduction is less than a 1000? > > > > > > As I've stated in previous posts, math is hardly my strong suit but I > > > do know that the experts have said that PCR's with sensitivities of > > > less than 1 in 100,000 are unreliable and give little information. > > > > > > Mark, I would suggest that you ask if you can send your samples to > > > another lab where they do more sensitive testing and this way you'll > > > know exactly where you stand. > > > > > > Tracey > > > -- Marcos Perreau Guimaraes Suppes Brain Lab Ventura Hall - CSLI Stanford University 220 Panama street Stanford CA 94305-4101 650 614 2305 650 630 5015 (cell) marcospg@... montereyunderwater@... www.stanford.edu/~marcospg/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2007 Report Share Posted August 2, 2007 Hi Joann-- Do you mind if I ask how much your PCR tests cost if you go through OHSU? My husband is the CML patient, we just were at OHSU with Dr. Druker one week ago today, for a consultation. We, too, live in Southern Cal (Long Beach area), and have Kaiser as insurance. Kaiser did not cover the Dr. Druker visit as my husband's onc would not give us a direct referral to see him. We understand that healthcare is really just " big business " , so we opted to still go see Dr. Druker and pay out of our pocket. I am interested in how much a PCR test would cost if we also paid out of our pocket...just wondering. I guess the next question is that we should find out from Kaiser, which lab they use--right? I dont even know how to go about finding that out...seems like our onc wouldnt know that...is that a question for the medical records dept., or the lab? Thanks! >From: " basuinokelly2002 " <basuinokelly@...> >Reply- > >Subject: Re: [ ] Major Molecular Response >Date: Thu, 02 Aug 2007 16:57:50 -0000 > > >Hello Tracey, Marcos, and Mark, > >I go to University of California San Diego (UCSD) which sends PCRs to >ARUP lab in Salt Lake City, Utah. The PCR report lists no lab >baseline, no log reduction, and a 1:1000 sensitivity. Yep, only three >zeros. I have already discussed this with my onc who, after contacting >someone at ARUP, is OK with the ARUP sensitivity. But I am not >comfortable with a PCR with only a 1:1000 sensitivity. So, at my own >expense, I send an additional PCR sample to OHSU in Portland which has >a 1:100,000 sensitivity. Both ARUP and OHSU use the G6PDH housekeeping >gene. My only PCR results are: > >ARUP 1-07 .00076 >OHSU 3-07 .083 >ARUP 5-07 .00021 >OHSU 6-07 .079 > >Though I haven't had a PCR at both ARUP and OHSU done the same month, >you still can see that the ARUP results and the OHSU results are not >similar. I do so wish that UCSD contracted with a lab with a more >sensitve quantitative PCR or let me send my sample to a lab with a >1:100,000 sensitivy, but as they do neither, I will eat the cost and >send additional samples to OHSU. > >JoAnn >Dx: 8/06 >Gleevec 400 mg. > > > > > > > > Hi Mark and Marcos, > > > > > > Anytime a number is that low it's a good thing but I'm not sure how > > > significant it is if the PCR's sensitivity was only 1 in 1,000. > > > > > > By definition, the famous 3 log reduction that we're all aiming for > > > (which is how they define a major molecular response) , is a > > > reduction in transcripts by 1000 fold. Now if someone is still > > > positive on a test that only has a sensitivity of 1,000, would that > > > not mean that their reduction is less than a 1000? > > > > > > As I've stated in previous posts, math is hardly my strong suit but I > > > do know that the experts have said that PCR's with sensitivities of > > > less than 1 in 100,000 are unreliable and give little information. > > > > > > Mark, I would suggest that you ask if you can send your samples to > > > another lab where they do more sensitive testing and this way you'll > > > know exactly where you stand. > > > > > > Tracey > _________________________________________________________________ More photos, more messages, more storage—get 2GB with Windows Live Hotmail. http://imagine-windowslive.com/hotmail/?locale=en-us & ocid=TXT_TAGHM_migration_HM\ _mini_2G_0507 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2007 Report Share Posted August 2, 2007 This all sounds correct....not that you need me to validate this info! But, we too were amazed at these numbers. My husband and I just spent 2.5 hours with Dr. Druker at OHSU last week, and he too was telling us these statistics. Seems like pretty awesome results, if you can reach MMR in the first 18 months, or CCR at 12 months! I think that for some reason, alot of people dont know these statistics, we need to broadcast them more...thanks for doing so, Marcos. Regards, Cervera >From: " Marcos Perreau Guimaraes " <montereyunderwater@...> >Reply- > >Subject: Re: [ ] Major Molecular Response >Date: Thu, 2 Aug 2007 09:17:42 -0700 > >Hi Mark, >The followup of the IRIS patients (from initial clinical trials to last >year) shows that 100% of these people that reach MMR in the 1st 18 months >of >treatment have no disease progression in 5 years (going from chronic phase >to more advanced accelerated or blast phases). For the people that reach >CCR >at 12 month 97% have no disease progression in 5 years. The other very good >thing is the available data show the odds of having cml progressing >decrease >with time : longer you stay in remission, better are the chances of staying >in remission. Here's a link to the IRIS 5 year update slides from Novartis >: >http://www.glivec.com/pdfs/2-IRIS-5YearUpdate.pdf > >For your PCR test you should ask your doctor, I agree with Tracey, 1:1000 >is >not good enough. >Marcos. > >On 8/2/07, markostapiak <no_reply > wrote: > > > > Hi, > > > > I'm so glad that folks have chimed in on this one. I double checked my > > PCR results, and they report 1:1000 sensitivity ratio (sensitivity > > ratio? Is that the correct terminology?). I'll have to ask my doctor. > > > > When I go in for a check up in September, I'll ask him all the > > questions that you've raised, as well as discuss the answers you've > > offered, especially one mentioning that a 3log reduction means > > " virtually no chance of relapse. " Truly? > > > > This is pretty confusing stuff. > > > > Sincerely, > > Mark > > > > > > > > > > > > > > > > > > Hello all, > > > > > > > > > > > > > > I'm a 29 year old white male who was diagnosed with CML in > > > June > > > > > 2006. > > > > > > > My WBC at the time was 335,000. That's down to normal and all > > > my > > > > > other > > > > > > > numbers are stable. > > > > > > > > > > > > > > I was started on 400mg of Gleevec in July 2006 and stepped up > > > to > > > > > 600mg > > > > > > > in August 2006, which is my current dosage. > > > > > > > > > > > > > > Here's a copy of my latest test: > > > > > > > > > > > > > > bcr/abl,t(9;22) Translocation Quantitative Assay by RT-PCR > > > > > > > > > > > > > > BCR/ABL SOURCE NOT SPEC > > > > > > > > > > > > > > BCR/ABL QUANTITATIVE 1 Q POS > > > > > > > > > > > > > > Positive: There is evidence of the bcr/abl fusion > > > > > > > > > > > > > > trancript by RT-PCR analysis. > > > > > > > > > > > > > > This result has been reviewed and approved by > > > > > > > > > > > > > > D. B., M.D. [used initials to protect doc's identity] > > > > > > > > > > > > > > Results are reported as a ratio of bcr/abl transcripts to > > > > > > > > > > > > > > G6PDH transcripts.The limit of detection for this assay > > > > > > > > > > > > > > is 1 in 1,000 cells. > > > > > > > > > > > > > > BCR/ABL RATIO 0.00005 > > > > > > > > > > > > > > BCR/ABL PREVIOUS SOURCE NOT APPL > > > > > > > > > > > > > > BCR/ABL PREVIOUS DRAW DT/TIME NOT APPL > > > > > > > > > > > > > > BCR/ABL PREVIOUS QUANT 1 NOT APPL > > > > > > > > > > > > > > BCR/ABL PREVIOUS QUANT RATIO NOT APPL > > > > > > > > > > > > > > So, my doctor said that this means a Major Molecular Response. > > > > > What > > > > > > > does that really mean? I know that's pretty good, but is that > > > as > > > > > good > > > > > > > as it can get? > > > > > > > > > > > > > > Put it in laymans terms, please. I appreciate the help. > > > > > > > > > > > > > > Sincerely, > > > > > > > Mark > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2007 Report Share Posted August 2, 2007 Hi , I also have Kaiser (I am in Northern California, in Palo Alto) and for me they send the samples to Stanford Hospital. I get a copy of the report from Stanford, that has number of p210 copies, ratio, baseline and log reduction. Could you also give an idea of the cost to see Dr Drucker ? I may be interested on doing that. Marcos. On 8/2/07, Cervera <weez_555@...> wrote: > Hi Joann-- > Do you mind if I ask how much your PCR tests cost if you go through OHSU? > My husband is the CML patient, we just were at OHSU with Dr. Druker one week > ago today, for a consultation. We, too, live in Southern Cal (Long Beach > area), and have Kaiser as insurance. Kaiser did not cover the Dr. Druker > visit as my husband's onc would not give us a direct referral to see him. We > understand that healthcare is really just " big business " , so we opted to > still go see Dr. Druker and pay out of our pocket. I am interested in how > much a PCR test would cost if we also paid out of our pocket...just > wondering. > > I guess the next question is that we should find out from Kaiser, which lab > they use--right? I dont even know how to go about finding that out...seems > like our onc wouldnt know that...is that a question for the medical records > dept., or the lab? > > Thanks! > > > > >From: " basuinokelly2002 " <basuinokelly@...> > >Reply- > > > >Subject: Re: [ ] Major Molecular Response > >Date: Thu, 02 Aug 2007 16:57:50 -0000 > > > > > >Hello Tracey, Marcos, and Mark, > > > >I go to University of California San Diego (UCSD) which sends PCRs to > >ARUP lab in Salt Lake City, Utah. The PCR report lists no lab > >baseline, no log reduction, and a 1:1000 sensitivity. Yep, only three > >zeros. I have already discussed this with my onc who, after contacting > >someone at ARUP, is OK with the ARUP sensitivity. But I am not > >comfortable with a PCR with only a 1:1000 sensitivity. So, at my own > >expense, I send an additional PCR sample to OHSU in Portland which has > >a 1:100,000 sensitivity. Both ARUP and OHSU use the G6PDH housekeeping > >gene. My only PCR results are: > > > >ARUP 1-07 .00076 > >OHSU 3-07 .083 > >ARUP 5-07 .00021 > >OHSU 6-07 .079 > > > >Though I haven't had a PCR at both ARUP and OHSU done the same month, > >you still can see that the ARUP results and the OHSU results are not > >similar. I do so wish that UCSD contracted with a lab with a more > >sensitve quantitative PCR or let me send my sample to a lab with a > >1:100,000 sensitivy, but as they do neither, I will eat the cost and > >send additional samples to OHSU. > > > >JoAnn > >Dx: 8/06 > >Gleevec 400 mg. > > > > > > > > > > > > Hi Mark and Marcos, > > > > > > > > Anytime a number is that low it's a good thing but I'm not sure how > > > > significant it is if the PCR's sensitivity was only 1 in 1,000. > > > > > > > > By definition, the famous 3 log reduction that we're all aiming for > > > > (which is how they define a major molecular response) , is a > > > > reduction in transcripts by 1000 fold. Now if someone is still > > > > positive on a test that only has a sensitivity of 1,000, would that > > > > not mean that their reduction is less than a 1000? > > > > > > > > As I've stated in previous posts, math is hardly my strong suit but I > > > > do know that the experts have said that PCR's with sensitivities of > > > > less than 1 in 100,000 are unreliable and give little information. > > > > > > > > Mark, I would suggest that you ask if you can send your samples to > > > > another lab where they do more sensitive testing and this way you'll > > > > know exactly where you stand. > > > > > > > > Tracey > > > > _________________________________________________________________ > More photos, more messages, more storage—get 2GB with Windows Live Hotmail. > http://imagine-windowslive.com/hotmail/?locale=en-us & ocid=TXT_TAGHM_migration_HM\ _mini_2G_0507 > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2007 Report Share Posted August 2, 2007 Marcos-- Our cost for the visit was $500. Probably the best $500 we have ever spent! Dr. Druker now has all of of 's records and, if need be, he will answer " out of the norm " questions that maybe 's onc cannot answer. Dr. Druker is an amazing man whose mission is to cure CML, so he likes to gather all info he can. The experience was an amazing one for both and I. Also, we are planning on moving back up to Northern Cal in the next 6-9 months and have already started researching docs up there. Most likely I am going to try and keep my job, in which case I will have Kaiser Northern Cal coverage. I have contacted Dr. Neil Shah (Dr. Druker recommended him), he is at UCSF. He has said that he definitely could be 's specialist. However, the insurance thing...dont know how that would work yet. Do you see a Kaiser general onc and then consult with specialists when need be? >From: " Marcos Perreau Guimaraes " <montereyunderwater@...> >Reply- > >Subject: Re: [ ] Major Molecular Response >Date: Thu, 2 Aug 2007 11:06:52 -0700 > >Hi , >I also have Kaiser (I am in Northern California, in Palo Alto) and for >me they send the samples to Stanford Hospital. I get a copy of the >report from Stanford, that has number of p210 copies, ratio, baseline >and log reduction. Could you also give an idea of the cost to see Dr >Drucker ? I may be interested on doing that. >Marcos. > >On 8/2/07, Cervera <weez_555@...> wrote: > > Hi Joann-- > > Do you mind if I ask how much your PCR tests cost if you go through >OHSU? > > My husband is the CML patient, we just were at OHSU with Dr. Druker one >week > > ago today, for a consultation. We, too, live in Southern Cal (Long Beach > > area), and have Kaiser as insurance. Kaiser did not cover the Dr. Druker > > visit as my husband's onc would not give us a direct referral to see >him. We > > understand that healthcare is really just " big business " , so we opted to > > still go see Dr. Druker and pay out of our pocket. I am interested in >how > > much a PCR test would cost if we also paid out of our pocket...just > > wondering. > > > > I guess the next question is that we should find out from Kaiser, which >lab > > they use--right? I dont even know how to go about finding that >out...seems > > like our onc wouldnt know that...is that a question for the medical >records > > dept., or the lab? > > > > Thanks! > > > > > > > > >From: " basuinokelly2002 " <basuinokelly@...> > > >Reply- > > > > > >Subject: Re: [ ] Major Molecular Response > > >Date: Thu, 02 Aug 2007 16:57:50 -0000 > > > > > > > > >Hello Tracey, Marcos, and Mark, > > > > > >I go to University of California San Diego (UCSD) which sends PCRs to > > >ARUP lab in Salt Lake City, Utah. The PCR report lists no lab > > >baseline, no log reduction, and a 1:1000 sensitivity. Yep, only three > > >zeros. I have already discussed this with my onc who, after contacting > > >someone at ARUP, is OK with the ARUP sensitivity. But I am not > > >comfortable with a PCR with only a 1:1000 sensitivity. So, at my own > > >expense, I send an additional PCR sample to OHSU in Portland which has > > >a 1:100,000 sensitivity. Both ARUP and OHSU use the G6PDH housekeeping > > >gene. My only PCR results are: > > > > > >ARUP 1-07 .00076 > > >OHSU 3-07 .083 > > >ARUP 5-07 .00021 > > >OHSU 6-07 .079 > > > > > >Though I haven't had a PCR at both ARUP and OHSU done the same month, > > >you still can see that the ARUP results and the OHSU results are not > > >similar. I do so wish that UCSD contracted with a lab with a more > > >sensitve quantitative PCR or let me send my sample to a lab with a > > >1:100,000 sensitivy, but as they do neither, I will eat the cost and > > >send additional samples to OHSU. > > > > > >JoAnn > > >Dx: 8/06 > > >Gleevec 400 mg. > > > > > > > > > > > > > > > > Hi Mark and Marcos, > > > > > > > > > > Anytime a number is that low it's a good thing but I'm not sure >how > > > > > significant it is if the PCR's sensitivity was only 1 in 1,000. > > > > > > > > > > By definition, the famous 3 log reduction that we're all aiming >for > > > > > (which is how they define a major molecular response) , is a > > > > > reduction in transcripts by 1000 fold. Now if someone is still > > > > > positive on a test that only has a sensitivity of 1,000, would >that > > > > > not mean that their reduction is less than a 1000? > > > > > > > > > > As I've stated in previous posts, math is hardly my strong suit >but I > > > > > do know that the experts have said that PCR's with sensitivities >of > > > > > less than 1 in 100,000 are unreliable and give little information. > > > > > > > > > > Mark, I would suggest that you ask if you can send your samples to > > > > > another lab where they do more sensitive testing and this way >you'll > > > > > know exactly where you stand. > > > > > > > > > > Tracey > > > > > > > _________________________________________________________________ > > More photos, more messages, more storage—get 2GB with Windows Live >Hotmail. > > >http://imagine-windowslive.com/hotmail/?locale=en-us & ocid=TXT_TAGHM_migration_H\ M_mini_2G_0507 > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2007 Report Share Posted August 2, 2007 Thanks for the information. That's a lot more affordable than what I thougth (Stanford cost a lot more). I may see him if I am still failing MMR in the next year. I have Dr Feiner at Santa Clara Kaiser (near San ), I think they are ok as long as I stay in good remission. Cheers, Marcos. On 8/2/07, Cervera <weez_555@...> wrote: > Marcos-- > Our cost for the visit was $500. Probably the best $500 we have ever spent! > Dr. Druker now has all of of 's records and, if need be, he will answer > " out of the norm " questions that maybe 's onc cannot answer. Dr. Druker > is an amazing man whose mission is to cure CML, so he likes to gather all > info he can. The experience was an amazing one for both and I. > > Also, we are planning on moving back up to Northern Cal in the next 6-9 > months and have already started researching docs up there. Most likely I am > going to try and keep my job, in which case I will have Kaiser Northern Cal > coverage. I have contacted Dr. Neil Shah (Dr. Druker recommended him), he is > at UCSF. He has said that he definitely could be 's specialist. However, > the insurance thing...dont know how that would work yet. Do you see a Kaiser > general onc and then consult with specialists when need be? > > > > > >From: " Marcos Perreau Guimaraes " <montereyunderwater@...> > >Reply- > > > >Subject: Re: [ ] Major Molecular Response > >Date: Thu, 2 Aug 2007 11:06:52 -0700 > > > >Hi , > >I also have Kaiser (I am in Northern California, in Palo Alto) and for > >me they send the samples to Stanford Hospital. I get a copy of the > >report from Stanford, that has number of p210 copies, ratio, baseline > >and log reduction. Could you also give an idea of the cost to see Dr > >Drucker ? I may be interested on doing that. > >Marcos. > > > >On 8/2/07, Cervera <weez_555@...> wrote: > > > Hi Joann-- > > > Do you mind if I ask how much your PCR tests cost if you go through > >OHSU? > > > My husband is the CML patient, we just were at OHSU with Dr. Druker one > >week > > > ago today, for a consultation. We, too, live in Southern Cal (Long Beach > > > area), and have Kaiser as insurance. Kaiser did not cover the Dr. Druker > > > visit as my husband's onc would not give us a direct referral to see > >him. We > > > understand that healthcare is really just " big business " , so we opted to > > > still go see Dr. Druker and pay out of our pocket. I am interested in > >how > > > much a PCR test would cost if we also paid out of our pocket...just > > > wondering. > > > > > > I guess the next question is that we should find out from Kaiser, which > >lab > > > they use--right? I dont even know how to go about finding that > >out...seems > > > like our onc wouldnt know that...is that a question for the medical > >records > > > dept., or the lab? > > > > > > Thanks! > > > > > > > > > > > > >From: " basuinokelly2002 " <basuinokelly@...> > > > >Reply- > > > > > > > >Subject: Re: [ ] Major Molecular Response > > > >Date: Thu, 02 Aug 2007 16:57:50 -0000 > > > > > > > > > > > >Hello Tracey, Marcos, and Mark, > > > > > > > >I go to University of California San Diego (UCSD) which sends PCRs to > > > >ARUP lab in Salt Lake City, Utah. The PCR report lists no lab > > > >baseline, no log reduction, and a 1:1000 sensitivity. Yep, only three > > > >zeros. I have already discussed this with my onc who, after contacting > > > >someone at ARUP, is OK with the ARUP sensitivity. But I am not > > > >comfortable with a PCR with only a 1:1000 sensitivity. So, at my own > > > >expense, I send an additional PCR sample to OHSU in Portland which has > > > >a 1:100,000 sensitivity. Both ARUP and OHSU use the G6PDH housekeeping > > > >gene. My only PCR results are: > > > > > > > >ARUP 1-07 .00076 > > > >OHSU 3-07 .083 > > > >ARUP 5-07 .00021 > > > >OHSU 6-07 .079 > > > > > > > >Though I haven't had a PCR at both ARUP and OHSU done the same month, > > > >you still can see that the ARUP results and the OHSU results are not > > > >similar. I do so wish that UCSD contracted with a lab with a more > > > >sensitve quantitative PCR or let me send my sample to a lab with a > > > >1:100,000 sensitivy, but as they do neither, I will eat the cost and > > > >send additional samples to OHSU. > > > > > > > >JoAnn > > > >Dx: 8/06 > > > >Gleevec 400 mg. > > > > > > > > > > > > > > > > > > > > Hi Mark and Marcos, > > > > > > > > > > > > Anytime a number is that low it's a good thing but I'm not sure > >how > > > > > > significant it is if the PCR's sensitivity was only 1 in 1,000. > > > > > > > > > > > > By definition, the famous 3 log reduction that we're all aiming > >for > > > > > > (which is how they define a major molecular response) , is a > > > > > > reduction in transcripts by 1000 fold. Now if someone is still > > > > > > positive on a test that only has a sensitivity of 1,000, would > >that > > > > > > not mean that their reduction is less than a 1000? > > > > > > > > > > > > As I've stated in previous posts, math is hardly my strong suit > >but I > > > > > > do know that the experts have said that PCR's with sensitivities > >of > > > > > > less than 1 in 100,000 are unreliable and give little information. > > > > > > > > > > > > Mark, I would suggest that you ask if you can send your samples to > > > > > > another lab where they do more sensitive testing and this way > >you'll > > > > > > know exactly where you stand. > > > > > > > > > > > > Tracey > > > > > > > > > > _________________________________________________________________ > > > More photos, more messages, more storage—get 2GB with Windows Live > >Hotmail. > > > > >http://imagine-windowslive.com/hotmail/?locale=en-us & ocid=TXT_TAGHM_migration_H\ M_mini_2G_0507 > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2007 Report Share Posted August 3, 2007 Hello, I just have a Quantitative RT-PCR Analysis done early July. On the report, it has a comment of " This test can detect the BCR-ABL translocations e13a2, e14a2, e1a2 to a sensitivity level of > 1 in 100,000 transcripts (0.001%). > > > > > > Hi Mark and Marcos, > > > > > > Anytime a number is that low it's a good thing but I'm not sure how > > > significant it is if the PCR's sensitivity was only 1 in 1,000. > > > > > > By definition, the famous 3 log reduction that we're all aiming for > > > (which is how they define a major molecular response) , is a > > > reduction in transcripts by 1000 fold. Now if someone is still > > > positive on a test that only has a sensitivity of 1,000, would that > > > not mean that their reduction is less than a 1000? > > > > > > As I've stated in previous posts, math is hardly my strong suit but I > > > do know that the experts have said that PCR's with sensitivities of > > > less than 1 in 100,000 are unreliable and give little information. > > > > > > Mark, I would suggest that you ask if you can send your samples to > > > another lab where they do more sensitive testing and this way you'll > > > know exactly where you stand. > > > > > > Tracey > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2007 Report Share Posted August 4, 2007 Yes, I got my results from that lab in Salt Lake City. So, I'll talk to my onc. about sending them elsewhere. Thanks, Mark > > > > > > Hi Mark and Marcos, > > > > > > Anytime a number is that low it's a good thing but I'm not sure how > > > significant it is if the PCR's sensitivity was only 1 in 1,000. > > > > > > By definition, the famous 3 log reduction that we're all aiming for > > > (which is how they define a major molecular response) , is a > > > reduction in transcripts by 1000 fold. Now if someone is still > > > positive on a test that only has a sensitivity of 1,000, would that > > > not mean that their reduction is less than a 1000? > > > > > > As I've stated in previous posts, math is hardly my strong suit but I > > > do know that the experts have said that PCR's with sensitivities of > > > less than 1 in 100,000 are unreliable and give little information. > > > > > > Mark, I would suggest that you ask if you can send your samples to > > > another lab where they do more sensitive testing and this way you'll > > > know exactly where you stand. > > > > > > Tracey > Quote Link to comment Share on other sites More sharing options...
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