Guest guest Posted September 20, 2007 Report Share Posted September 20, 2007 Hi Tracey! Once again, you created excellent notes regarding the teleconference. I am still amazed at how you can take such through notes. ;-) I could hardly hear the teleconference on my phone; bad connection or bad microphone volume. I'm so glad Dr. Cortez brought up the serum level testing now being made available to patients in the U.S. I was the first patient in my Onc's office that has had this test done.(I pushed and pushed and pushed, and knew about it before the drug rep from Novartis even told the office that it was now available.) Although I have been PCRU, my side effects have been terrible, and after my serum level tests came back, I can see why. I was sky high on the test, and after my Dr. consulted with Dr. Druker, we are now dropping my dose to 300 mgs Gleevec and retesting the serum level soon, to see if I'm at a more appropriate serum level, along with keeping the PCR test favorable. I must have the metabolism of a snail! I have not seen a change in side effects yet, but hopefully, with time, the edema, swelling and fatigue will lessen. Keep your fingers and toes crossed! This has been a huge struggle. Lynn Dx'd 12/03 300 mg's PCRU > > Hi Everyone, > > In case any of you weren't able to listen to today's teleconference > but were interested in what Dr. Cortes said, I've written a summary > in two parts. This post will look at his initial " lecture " and my > next post will have the question/answer period. > > He started with a brief history of CML saying that it was the first > malignancy where a chromosomal change was found to cause a disease. > Past goals of CML therapy were simply to control blood counts but > thanks to Gleevec and other targeted therapies, our goal now is to > reach the source of the disease and allow patients to live long term. > > Between the years of 1997-2007 there hasn't been much of a change in > the number of people being diagnosed with CML. Prior to 1997, 2400 > patients died a year from CML and now there are less than 500 > patients dying a year due to CML. > > Survival has gone from 3-4 years prior to Gleevec, to now 95% of > patients are still alive after 5 years. The IRIS trial has shown us > that more than 80% of newly diagnosed patients have achieved a CCR > which has been very durable over 5 years. The longer the patients > are on Gleevec, the lower the rates of relapse are, which is very > encouraging. > > He said that blood levels of Imatinib (Gleevec) can predict the level > of response a patient will have. Low concentrations of imatinib in > the blood, don't give patients as good of a response as higher > levels. He also said that serum testing of Gleevec is now widely > available. > > The earlier the patient responds, the better the outcome. Patients > who are in CCR at 1 year, have the best probability of a durable > response. He mentioned that proper monitoring of disease is > essential. FISH tests can have a false positive rate of up to 10% so > that should be taken into consideration when evaluating a patients > results. > > A PCR test measures the patient's molecular response. A major > molecular response (MMR) is a 3 log reduction. Each lab has a > baseline value of what a newly diagnosed patient will have in terms > of a PCR result. If for instance, the baseline is 50, then a one log > reduction would be 5, a two log reduction would be 0.5, and a three > log reduction would be 0.05. > > Standard dose Imatinib has shown wonderful responses but higher dose > therapy can show faster and even deeper responses. He mentioned > though that higher dose therapy (800mg) is still considered > investigational, it's not by any means standard. > > Over the long term, side effects appear to ease up in most patients. > We used to be concerned about the long term effects of taking Gleevec > but after 5 years of use, we're not so worried anymore because people > seem to be doing better and better with fewer side effects over the > long term. > > Studies that have looked at heart problems have shown that Gleevec > does not cause any more heart problems than you would expect to see > in the general population. > > Dasatinib (Sprycel) is effective in all stages of disease and is well > tolerated. Cytopenias (low blood counts) are a common side effect > and pleural effusions can occur in 25-30% of patients but it can be > managed. Giving 100mg once daily is showing equal responses as the > 70mg twice daily dose and there's less side effects with the 100 mg > dose. > > Nilotinib (Tasigna) is also showing to be very effective and well > tolerated in patients who are taking it in clinical trials. It has > shown no pleural effusions but can sometimes cause liver enzymes to > rise. > > We continue to be excited about CML therapy as more hopeful drugs are > on the horizon. SKI-606 and INNO-406 are showing encouraging > responses in trials so far. > > With so many drugs to chose from, there will soon be a question as to > how to select a drug to use. Side effects should be considered when > choosing a drug. Various mutations are better targeted with some > drugs over others so that's another consideration to look at. > > 40%-60% of patients who fail imatinib have a mutation but most of > those mutations can be managed with one of the other second or third > generation drugs. MK-0457 is showing activity against the more > serious T315I mutation, which is encouraging. > > We want to eliminate the last leukemia cell, the " mother cell " so > that we can cure CML. We have had a significant amount of success in > treating CML but we still have a way to go to cure it. We are > hopeful for a cure in the " very near future " . > > Clinical trials are essential for gaining knowledge so it's > important that patients continue to participate in trials if they > can. > > Advances in CML have been very quick. We now have 3 generations of > inhibitors to chose from. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2007 Report Share Posted September 20, 2007 Thank you Tracey for the notes, that is very kind of you. On the serum level question I had it tested by my hemato in Paris as part of one of their clinical trial, as I am close to but not quite MMR, although I was CCR in 12 month. It turned out I had a rather low level but not below acceptable. So the question to raise the dose of gleevec was a tricky one. As the PCR is still slowly going down and I am not too willing to give quality of life without sharp reasons I am staying on 400mg for now. The drs still need some time to learn how to best use the new tool. I had an amazing dive Saturday, that's not going to make me willing to give up deep diving Marcos. On 9/20/07, Tracey <traceyincanada@...> wrote: > > Hi Everyone, > > In case any of you weren't able to listen to today's teleconference > but were interested in what Dr. Cortes said, I've written a summary > in two parts. This post will look at his initial " lecture " and my > next post will have the question/answer period. > > He started with a brief history of CML saying that it was the first > malignancy where a chromosomal change was found to cause a disease. > Past goals of CML therapy were simply to control blood counts but > thanks to Gleevec and other targeted therapies, our goal now is to > reach the source of the disease and allow patients to live long term. > > Between the years of 1997-2007 there hasn't been much of a change in > the number of people being diagnosed with CML. Prior to 1997, 2400 > patients died a year from CML and now there are less than 500 > patients dying a year due to CML. > > Survival has gone from 3-4 years prior to Gleevec, to now 95% of > patients are still alive after 5 years. The IRIS trial has shown us > that more than 80% of newly diagnosed patients have achieved a CCR > which has been very durable over 5 years. The longer the patients > are on Gleevec, the lower the rates of relapse are, which is very > encouraging. > > He said that blood levels of Imatinib (Gleevec) can predict the level > of response a patient will have. Low concentrations of imatinib in > the blood, don't give patients as good of a response as higher > levels. He also said that serum testing of Gleevec is now widely > available. > > The earlier the patient responds, the better the outcome. Patients > who are in CCR at 1 year, have the best probability of a durable > response. He mentioned that proper monitoring of disease is > essential. FISH tests can have a false positive rate of up to 10% so > that should be taken into consideration when evaluating a patients > results. > > A PCR test measures the patient's molecular response. A major > molecular response (MMR) is a 3 log reduction. Each lab has a > baseline value of what a newly diagnosed patient will have in terms > of a PCR result. If for instance, the baseline is 50, then a one log > reduction would be 5, a two log reduction would be 0.5, and a three > log reduction would be 0.05. > > Standard dose Imatinib has shown wonderful responses but higher dose > therapy can show faster and even deeper responses. He mentioned > though that higher dose therapy (800mg) is still considered > investigational, it's not by any means standard. > > Over the long term, side effects appear to ease up in most patients. > We used to be concerned about the long term effects of taking Gleevec > but after 5 years of use, we're not so worried anymore because people > seem to be doing better and better with fewer side effects over the > long term. > > Studies that have looked at heart problems have shown that Gleevec > does not cause any more heart problems than you would expect to see > in the general population. > > Dasatinib (Sprycel) is effective in all stages of disease and is well > tolerated. Cytopenias (low blood counts) are a common side effect > and pleural effusions can occur in 25-30% of patients but it can be > managed. Giving 100mg once daily is showing equal responses as the > 70mg twice daily dose and there's less side effects with the 100 mg > dose. > > Nilotinib (Tasigna) is also showing to be very effective and well > tolerated in patients who are taking it in clinical trials. It has > shown no pleural effusions but can sometimes cause liver enzymes to > rise. > > We continue to be excited about CML therapy as more hopeful drugs are > on the horizon. SKI-606 and INNO-406 are showing encouraging > responses in trials so far. > > With so many drugs to chose from, there will soon be a question as to > how to select a drug to use. Side effects should be considered when > choosing a drug. Various mutations are better targeted with some > drugs over others so that's another consideration to look at. > > 40%-60% of patients who fail imatinib have a mutation but most of > those mutations can be managed with one of the other second or third > generation drugs. MK-0457 is showing activity against the more > serious T315I mutation, which is encouraging. > > We want to eliminate the last leukemia cell, the " mother cell " so > that we can cure CML. We have had a significant amount of success in > treating CML but we still have a way to go to cure it. We are > hopeful for a cure in the " very near future " . > > Clinical trials are essential for gaining knowledge so it's > important that patients continue to participate in trials if they > can. > > Advances in CML have been very quick. We now have 3 generations of > inhibitors to chose from. > > > -- 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 September 20, 2007 Report Share Posted September 20, 2007 Hi Marcos, I understand your dilemma and I want you to know that it is very very common for people to reach MMR later on in their treatment. The longer a person stays on Gleevec, the greater their response is. It wouldn't surprise me at all if after another year (or maybe even less), you hit that holy grail of a MMR response. I know people who took over 4 years to get there but what matters is that they were stable during the time they were " working on it " . If your PCR's are consistent, there isn't much cause for concern just because you're not at MMR yet. Like they say, patience is a virtue Take care and happy diving, Tracey dx Jan 2002 400mg Gleevec Feb 2002 -- In , " Marcos Perreau Guimaraes " <montereyunderwater@...> wrote: > > Thank you Tracey for the notes, that is very kind of you. On the serum level > question I had it tested by my hemato in Paris as part of one of their > clinical trial, as I am close to but not quite MMR, although I was CCR in 12 > month. It turned out I had a rather low level but not below acceptable. So > the question to raise the dose of gleevec was a tricky one. As the PCR is > still slowly going down and I am not too willing to give quality of life > without sharp reasons I am staying on 400mg for now. The drs still need some > time to learn how to best use the new tool. > I had an amazing dive Saturday, that's not going to make me willing to give > up deep diving > Marcos. > > > On 9/20/07, Tracey <traceyincanada@...> wrote: > > > > Hi Everyone, > > > > In case any of you weren't able to listen to today's teleconference > > but were interested in what Dr. Cortes said, I've written a summary > > in two parts. This post will look at his initial " lecture " and my > > next post will have the question/answer period. > > > > He started with a brief history of CML saying that it was the first > > malignancy where a chromosomal change was found to cause a disease. > > Past goals of CML therapy were simply to control blood counts but > > thanks to Gleevec and other targeted therapies, our goal now is to > > reach the source of the disease and allow patients to live long term. > > > > Between the years of 1997-2007 there hasn't been much of a change in > > the number of people being diagnosed with CML. Prior to 1997, 2400 > > patients died a year from CML and now there are less than 500 > > patients dying a year due to CML. > > > > Survival has gone from 3-4 years prior to Gleevec, to now 95% of > > patients are still alive after 5 years. The IRIS trial has shown us > > that more than 80% of newly diagnosed patients have achieved a CCR > > which has been very durable over 5 years. The longer the patients > > are on Gleevec, the lower the rates of relapse are, which is very > > encouraging. > > > > He said that blood levels of Imatinib (Gleevec) can predict the level > > of response a patient will have. Low concentrations of imatinib in > > the blood, don't give patients as good of a response as higher > > levels. He also said that serum testing of Gleevec is now widely > > available. > > > > The earlier the patient responds, the better the outcome. Patients > > who are in CCR at 1 year, have the best probability of a durable > > response. He mentioned that proper monitoring of disease is > > essential. FISH tests can have a false positive rate of up to 10% so > > that should be taken into consideration when evaluating a patients > > results. > > > > A PCR test measures the patient's molecular response. A major > > molecular response (MMR) is a 3 log reduction. Each lab has a > > baseline value of what a newly diagnosed patient will have in terms > > of a PCR result. If for instance, the baseline is 50, then a one log > > reduction would be 5, a two log reduction would be 0.5, and a three > > log reduction would be 0.05. > > > > Standard dose Imatinib has shown wonderful responses but higher dose > > therapy can show faster and even deeper responses. He mentioned > > though that higher dose therapy (800mg) is still considered > > investigational, it's not by any means standard. > > > > Over the long term, side effects appear to ease up in most patients. > > We used to be concerned about the long term effects of taking Gleevec > > but after 5 years of use, we're not so worried anymore because people > > seem to be doing better and better with fewer side effects over the > > long term. > > > > Studies that have looked at heart problems have shown that Gleevec > > does not cause any more heart problems than you would expect to see > > in the general population. > > > > Dasatinib (Sprycel) is effective in all stages of disease and is well > > tolerated. Cytopenias (low blood counts) are a common side effect > > and pleural effusions can occur in 25-30% of patients but it can be > > managed. Giving 100mg once daily is showing equal responses as the > > 70mg twice daily dose and there's less side effects with the 100 mg > > dose. > > > > Nilotinib (Tasigna) is also showing to be very effective and well > > tolerated in patients who are taking it in clinical trials. It has > > shown no pleural effusions but can sometimes cause liver enzymes to > > rise. > > > > We continue to be excited about CML therapy as more hopeful drugs are > > on the horizon. SKI-606 and INNO-406 are showing encouraging > > responses in trials so far. > > > > With so many drugs to chose from, there will soon be a question as to > > how to select a drug to use. Side effects should be considered when > > choosing a drug. Various mutations are better targeted with some > > drugs over others so that's another consideration to look at. > > > > 40%-60% of patients who fail imatinib have a mutation but most of > > those mutations can be managed with one of the other second or third > > generation drugs. MK-0457 is showing activity against the more > > serious T315I mutation, which is encouraging. > > > > We want to eliminate the last leukemia cell, the " mother cell " so > > that we can cure CML. We have had a significant amount of success in > > treating CML but we still have a way to go to cure it. We are > > hopeful for a cure in the " very near future " . > > > > Clinical trials are essential for gaining knowledge so it's > > important that patients continue to participate in trials if they > > can. > > > > Advances in CML have been very quick. We now have 3 generations of > > inhibitors to chose from. > > > > > > > > > > -- > 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 September 20, 2007 Report Share Posted September 20, 2007 It was my pleasure Lynn. I hope you see a relief soon in those side effects. If not, you know that there are other drugs right around the corner. You will always have options which is such a nice thing to have. Take care, Tracey > > > > Hi Everyone, > > > > In case any of you weren't able to listen to today's teleconference > > but were interested in what Dr. Cortes said, I've written a summary > > in two parts. This post will look at his initial " lecture " and my > > next post will have the question/answer period. > > > > He started with a brief history of CML saying that it was the first > > malignancy where a chromosomal change was found to cause a > disease. > > Past goals of CML therapy were simply to control blood counts but > > thanks to Gleevec and other targeted therapies, our goal now is to > > reach the source of the disease and allow patients to live long > term. > > > > Between the years of 1997-2007 there hasn't been much of a change > in > > the number of people being diagnosed with CML. Prior to 1997, 2400 > > patients died a year from CML and now there are less than 500 > > patients dying a year due to CML. > > > > Survival has gone from 3-4 years prior to Gleevec, to now 95% of > > patients are still alive after 5 years. The IRIS trial has shown > us > > that more than 80% of newly diagnosed patients have achieved a CCR > > which has been very durable over 5 years. The longer the patients > > are on Gleevec, the lower the rates of relapse are, which is very > > encouraging. > > > > He said that blood levels of Imatinib (Gleevec) can predict the > level > > of response a patient will have. Low concentrations of imatinib in > > the blood, don't give patients as good of a response as higher > > levels. He also said that serum testing of Gleevec is now widely > > available. > > > > The earlier the patient responds, the better the outcome. Patients > > who are in CCR at 1 year, have the best probability of a durable > > response. He mentioned that proper monitoring of disease is > > essential. FISH tests can have a false positive rate of up to 10% > so > > that should be taken into consideration when evaluating a patients > > results. > > > > A PCR test measures the patient's molecular response. A major > > molecular response (MMR) is a 3 log reduction. Each lab has a > > baseline value of what a newly diagnosed patient will have in terms > > of a PCR result. If for instance, the baseline is 50, then a one > log > > reduction would be 5, a two log reduction would be 0.5, and a three > > log reduction would be 0.05. > > > > Standard dose Imatinib has shown wonderful responses but higher > dose > > therapy can show faster and even deeper responses. He mentioned > > though that higher dose therapy (800mg) is still considered > > investigational, it's not by any means standard. > > > > Over the long term, side effects appear to ease up in most > patients. > > We used to be concerned about the long term effects of taking > Gleevec > > but after 5 years of use, we're not so worried anymore because > people > > seem to be doing better and better with fewer side effects over the > > long term. > > > > Studies that have looked at heart problems have shown that Gleevec > > does not cause any more heart problems than you would expect to see > > in the general population. > > > > Dasatinib (Sprycel) is effective in all stages of disease and is > well > > tolerated. Cytopenias (low blood counts) are a common side effect > > and pleural effusions can occur in 25-30% of patients but it can be > > managed. Giving 100mg once daily is showing equal responses as the > > 70mg twice daily dose and there's less side effects with the 100 mg > > dose. > > > > Nilotinib (Tasigna) is also showing to be very effective and well > > tolerated in patients who are taking it in clinical trials. It has > > shown no pleural effusions but can sometimes cause liver enzymes to > > rise. > > > > We continue to be excited about CML therapy as more hopeful drugs > are > > on the horizon. SKI-606 and INNO-406 are showing encouraging > > responses in trials so far. > > > > With so many drugs to chose from, there will soon be a question as > to > > how to select a drug to use. Side effects should be considered > when > > choosing a drug. Various mutations are better targeted with some > > drugs over others so that's another consideration to look at. > > > > 40%-60% of patients who fail imatinib have a mutation but most of > > those mutations can be managed with one of the other second or > third > > generation drugs. MK-0457 is showing activity against the more > > serious T315I mutation, which is encouraging. > > > > We want to eliminate the last leukemia cell, the " mother cell " so > > that we can cure CML. We have had a significant amount of success > in > > treating CML but we still have a way to go to cure it. We are > > hopeful for a cure in the " very near future " . > > > > Clinical trials are essential for gaining knowledge so it's > > important that patients continue to participate in trials if they > > can. > > > > Advances in CML have been very quick. We now have 3 generations of > > inhibitors to chose from. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2007 Report Share Posted September 20, 2007 Hi , One thing I have learned over the years is that even the top experts will sometimes disagree on things. Maybe " disagree " isn't the right word, maybe I should say that they have " different ideas " . Deciding when or if to do BMB's regularly is a perfect example. Some of the top experts believe that it's still important to do them with relative regularity and others believe that they aren't at all necessary for people who are in CCR. Another thought that comes to my mind in terms of mutations is that it seems reasonable to me to think that there are probably mutations out there that exist but haven't yet been identified. In other words, just because a mutation isn't found in someone, doesn't mean to me that one doesn't exist. Kind of like people who are PCRU....it's not that they don't have any cancer cells but rather that none were found in that sample with that test. I know I'm not helping much with the question at hand...if someone doesn't have any identifiable mutations, but isn't responding adequately to either Gleevec or Sprycel, does that mean they should go straight to transplant or should they explore other drugs. Personally, I don't think there is a right or wrong answer to that. Tracey > >> > Hi Everyone,> > > > In case any of you weren't able to listen to today's teleconference > > but were interested in what Dr. Cortes said, I've written a summary > > in two parts. This post will look at his initial " lecture " and my > > next post will have the question/answer period.> > > > He started with a brief history of CML saying that it was the first > > malignancy where a chromosomal change was found to cause a > disease. > > Past goals of CML therapy were simply to control blood counts but > > thanks to Gleevec and other targeted therapies, our goal now is to > > reach the source of the disease and allow patients to live long > term.> > > > Between the years of 1997- 2007 there hasn't been much of a change > in > > the number of people being diagnosed with CML. Prior to 1997, 2400 > > patients died a year from CML and now there are less than 500 > > patients dying a year due to CML.> > > > Survival has gone from 3-4 years prior to Gleevec, to now 95% of > > patients are still alive after 5 years. The IRIS trial has shown > us > > that more than 80% of newly diagnosed patients have achieved a CCR > > which has been very durable over 5 years. The longer the patients > > are on Gleevec, the lower the rates of relapse are, which is very > > encouraging.> > > > He said that blood levels of Imatinib (Gleevec) can predict the > level > > of response a patient will have. Low concentrations of imatinib in > > the blood, don't give patients as good of a response as higher > > levels. He also said that serum testing of Gleevec is now widely > > available.> > > > The earlier the patient responds, the better the outcome. Patients > > who are in CCR at 1 year, have the best probability of a durable > > response. He mentioned that proper monitoring of disease is > > essential. FISH tests can have a false positive rate of up to 10% > so > > that should be taken into consideration when evaluating a patients > > results.> > > > A PCR test measures the patient's molecular response. A major > > molecular response (MMR) is a 3 log reduction. Each lab has a > > baseline value of what a newly diagnosed patient will have in terms > > of a PCR result. If for instance, the baseline is 50, then a one > log > > reduction would be 5, a two log reduction would be 0.5, and a three > > log reduction would be 0.05.> > > > Standard dose Imatinib has shown wonderful responses but higher > dose > > therapy can show faster and even deeper responses. He mentioned > > though that higher dose therapy (800mg) is still considered > > investigational, it's not by any means standard.> > > > Over the long term, side effects appear to ease up in most > patients. > > We used to be concerned about the long term effects of taking > Gleevec > > but after 5 years of use, we're not so worried anymore because > people > > seem to be doing better and better with fewer side effects over the > > long term.> > > > Studies that have looked at heart problems have shown that Gleevec > > does not cause any more heart problems than you would expect to see > > in the general population.> > > > Dasatinib (Sprycel) is effective in all stages of disease and is > well > > tolerated. Cytopenias (low blood counts) are a common side effect > > and pleural effusions can occur in 25-30% of patients but it can be > > managed. Giving 100mg once daily is showing equal responses as the > > 70mg twice daily dose and there's less side effects with the 100 mg > > dose.> > > > Nilotinib (Tasigna) is also showing to be very effective and well > > tolerated in patients who are taking it in clinical trials. It has > > shown no pleural effusions but can sometimes cause liver enzymes to > > rise.> > > > We continue to be excited about CML therapy as more hopeful drugs > are > > on the horizon. SKI-606 and INNO-406 are showing encouraging > > responses in trials so far.> > > > With so many drugs to chose from, there will soon be a question as > to > > how to select a drug to use. Side effects should be considered > when > > choosing a drug. Various mutations are better targeted with some > > drugs over others so that's another consideration to look at.> > > > 40%-60% of patients who fail imatinib have a mutation but most of > > those mutations can be managed with one of the other second or > third > > generation drugs. MK-0457 is showing activity against the more > > serious T315I mutation, which is encouraging.> > > > We want to eliminate the last leukemia cell, the " mother cell " so > > that we can cure CML. We have had a significant amount of success > in > > treating CML but we still have a way to go to cure it. We are > > hopeful for a cure in the " very near future " .> > > > Clinical trials are essential for gaining knowledge so it's > > important that patients continue to participate in trials if they > > can.> > > > Advances in CML have been very quick. We now have 3 generations of > > inhibitors to chose from.> >> > > > > > > > _________________________________________________________________ > More photos; more messages; more whatever – Get MORE with Windows Live™ Hotmail®. NOW with 5GB storage. > http://imagine-windowslive.com/hotmail/?locale=en- us & ocid=TXT_TAGHM_migration_HM_mini_5G_0907 > > Quote Link to comment Share on other sites More sharing options...
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