Guest guest Posted January 11, 2009 Report Share Posted January 11, 2009 Hi , CCR stands for Complete Cytogenic Response. This means that there are 0 out of 20 cells tested that have the Philadelphia Chromosome. The test that is performed is called a BMA or a BMB. This is the test where they stick a needle in your hip and take some bone marrow out for testing. The difference between a BMA (Bone Marrow Aspiration) and a BMB (Bone Marrow Biopsy) is that with a BMB in addition to taking out some bone marrow, they also take out part of the bone for examination. Zavie Zavie (age 70) 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 3.6 log reduction Apr/08 3.6 log reduction Sep/08 e-mail: zmiller@... Tel: 613-726-1117 Fax: 309-296-0807 Cell: 613-282-0204 ID: zaviem YM: zaviemiller Skype: Zavie [ ] Gleevec I have been reading some of your posts that show you have been on Gleevec for years. I was diagnosed in May of 2008 with a RBC of close to 300,000. I was put on 400mg of Gleevec which I tolerate pretty well. I had my 2nd bone marrow biopsy(the 6th month mark) in December. I don't have the exact lab results, but it was explained to my husband and me that when I was first diagnosed, that they looked at 200 of my cells and 198 showed the Philadephia cells. From my December bone marrow biospy out of 200 cells, 40 showed the Philadephia cells and that I have to have another biopsy in June. I was told that if my cells arent under 20, that the Gleevec is considered a failure and that I should look at other medications? This seems odd to me. My regular blood counts look good every time. Any ideas? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2009 Report Share Posted January 11, 2009 My doctor seemed to think that I *was* at zero, even after my BMB. But then one day my bloodwork, which included a new test, showed that 20 percent of my cells were cancerous. At first he feared that I had developed an immunity to Gleevec and that my white cell count was climbing again, but then when he studied the lab report he realized the panel now included that new additional test. Does this make sense? If in fact I *had* achieved CCR, would that mean I could quit taking Gleevec, or is the CCR contingent upon taking Gleevec? From: zmiller@... Date: Sat, 10 Jan 2009 23:59:38 -0500 Subject: RE: [ ] STOOPID QUESTION Hi , CCR stands for Complete Cytogenic Response. This means that there are 0 out of 20 cells tested that have the Philadelphia Chromosome. The test that is performed is called a BMA or a BMB. This is the test where they stick a needle in your hip and take some bone marrow out for testing. The difference between a BMA (Bone Marrow Aspiration) and a BMB (Bone Marrow Biopsy) is that with a BMB in addition to taking out some bone marrow, they also take out part of the bone for examination. Zavie Zavie (age 70) 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 3.6 log reduction Apr/08 3.6 log reduction Sep/08 e-mail: zmiller@... Tel: 613-726-1117 Fax: 309-296-0807 Cell: 613-282-0204 ID: zaviem YM: zaviemiller Skype: Zavie [ ] Gleevec I have been reading some of your posts that show you have been on Gleevec for years. I was diagnosed in May of 2008 with a RBC of close to 300,000. I was put on 400mg of Gleevec which I tolerate pretty well. I had my 2nd bone marrow biopsy(the 6th month mark) in December. I don't have the exact lab results, but it was explained to my husband and me that when I was first diagnosed, that they looked at 200 of my cells and 198 showed the Philadephia cells. From my December bone marrow biospy out of 200 cells, 40 showed the Philadephia cells and that I have to have another biopsy in June. I was told that if my cells arent under 20, that the Gleevec is considered a failure and that I should look at other medications? This seems odd to me. My regular blood counts look good every time. Any ideas? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2009 Report Share Posted January 11, 2009 > The difference between a BMA (Bone Marrow Aspiration) and a BMB (Bone Marrow > Biopsy) is that with a BMB in addition to taking out some bone marrow, they > also take out part of the bone for examination. >********************************************** I don't want to be a PIA but I would like to clarify that a bone marrow biopsy doesn't actually take out part of the bone to examine. It takes out part of the more solid portion of the marrow. Bone marrow is like a wet sponge. The liquid in the sponge is what they remove during an aspiration (not all of it, just a small sample of it) and the solid part of the sponge is what they remove when they do a biopsy (a very small piece of it). At no point does any part of the actual bone get removed. Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2009 Report Share Posted January 11, 2009 Hi , Achieving CCR is the minimum goal and does not imply any type of cure. If CCR is not achieved (usually in about a year), most doctors will want the patient to try a new drug. CCR can only be confirmed with a BMB or BMA. The next milestone that many doctors would like to see is a 3 log reduction which is also called a Major Molecular Response (MMR). This can only be verified with a PCR test. Patients who achieve this level of response are almost guaranteed not to relapse as long as they continue taking their medication. You may hear some people saying that they are PCRU which means PCR Undetectable. This means that no cancer cells were seen in the PCR test but again it doesn't imply cure. PCRU is a controversial term because there are many variables that must be taken into consideration....how sensitive the test is, how long did the blood sit around before it got tested, how big was the sample of blood that was tested, etc. Most doctors will be satisfied when the patient reaches a 3 log reduction but some are now saying that it's not even necessary to achieve that deeper level of response as long as the patient remains stable in CCR. At no time can we stop taking Gleevec, no matter how great our response is. Our responses are dependent on us taking the medication so if you stop taking the medication you are almost certain to relapse. Gleevec cannot kill the quiescent cells which lurk around in a sleeping mode waiting to be woken up. As long as we continue taking the Gleevec, those cells will be killed when they decide to wake up from their slumber but if we stop taking the medication and those cells wake up......well you can see what would happen. Hope that helps explain things a bit. Tracey > > > My doctor seemed to think that I *was* at zero, even after my BMB. But then one day my bloodwork, which included a new test, showed that 20 percent of my cells were cancerous. At first he feared that I had developed an immunity to Gleevec and that my white cell count was climbing again, but then when he studied the lab report he realized the panel now included that new additional test. Does this make sense? > > If in fact I *had* achieved CCR, would that mean I could quit taking Gleevec, or is the CCR contingent upon taking Gleevec? > > > From: zmiller@... > Date: Sat, 10 Jan 2009 23:59:38 -0500 > Subject: RE: [ ] STOOPID QUESTION > > > > > > > > > > > > > > > > > > > > > Hi , > > > > CCR stands for Complete Cytogenic Response. This means that there are 0 out > > of 20 cells tested that have the Philadelphia Chromosome. The test that is > > performed is called a BMA or a BMB. This is the test where they stick a > > needle in your hip and take some bone marrow out for testing. > > > > The difference between a BMA (Bone Marrow Aspiration) and a BMB (Bone Marrow > > Biopsy) is that with a BMB in addition to taking out some bone marrow, they > > also take out part of the bone for examination. > > > > Zavie > > > > Zavie (age 70) > > 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 > > 3.6 log reduction Apr/08 > > 3.6 log reduction Sep/08 > > e-mail: zmiller@... > > Tel: 613-726-1117 > > Fax: 309-296-0807 > > Cell: 613-282-0204 > > ID: zaviem > > YM: zaviemiller > > Skype: Zavie > > > > > > [ ] Gleevec > > > > I have been reading some of your posts that show you have been on > > > > Gleevec for years. I was diagnosed in May of 2008 with a RBC of close > > > > to 300,000. I was put on 400mg of Gleevec which I tolerate pretty > > > > well. I had my 2nd bone marrow biopsy(the 6th month mark) in December. > > > > I don't have the exact lab results, but it was explained to my husband > > > > and me that when I was first diagnosed, that they looked at 200 of my > > > > cells and 198 showed the Philadephia cells. From my December bone > > > > marrow biospy out of 200 cells, 40 showed the Philadephia cells and > > > > that I have to have another biopsy in June. I was told that if my cells > > > > arent under 20, that the Gleevec is considered a failure and that I > > > > should look at other medications? This seems odd to me. My regular > > > > blood counts look good every time. Any ideas? > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2009 Report Share Posted January 11, 2009 Hi Tracey, It's not a PITA. The pain is in the hip just above the A. You are correct. When they do the procedure, the doctor says 'I am now going to get a piece of the marrow'. Zavie Zavie (age 70) 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 3.6 log reduction Apr/08 3.6 log reduction Sep/08 e-mail: zmiller@... Tel: 613-726-1117 Fax: 309-296-0807 Cell: 613-282-0204 ID: zaviem YM: zaviemiller Skype: Zavie _____ From: [mailto: ] On Behalf Of Tracey Sent: January 11, 2009 9:22 AM Subject: Re: [ ] STOOPID QUESTION > The difference between a BMA (Bone Marrow Aspiration) and a BMB (Bone Marrow > Biopsy) is that with a BMB in addition to taking out some bone marrow, they > also take out part of the bone for examination. >********************************************** I don't want to be a PIA but I would like to clarify that a bone marrow biopsy doesn't actually take out part of the bone to examine. It takes out part of the more solid portion of the marrow. Bone marrow is like a wet sponge. The liquid in the sponge is what they remove during an aspiration (not all of it, just a small sample of it) and the solid part of the sponge is what they remove when they do a biopsy (a very small piece of it). At no point does any part of the actual bone get removed. Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2009 Report Share Posted January 11, 2009 So if 20 percent of my cells are cancerous, as the doc said, should I switch to another drug? From: traceyincanada@... Date: Sun, 11 Jan 2009 14:36:21 +0000 Subject: Re: [ ] STOOPID QUESTION Hi , Achieving CCR is the minimum goal and does not imply any type of cure. If CCR is not achieved (usually in about a year), most doctors will want the patient to try a new drug. CCR can only be confirmed with a BMB or BMA. The next milestone that many doctors would like to see is a 3 log reduction which is also called a Major Molecular Response (MMR). This can only be verified with a PCR test. Patients who achieve this level of response are almost guaranteed not to relapse as long as they continue taking their medication. You may hear some people saying that they are PCRU which means PCR Undetectable. This means that no cancer cells were seen in the PCR test but again it doesn't imply cure. PCRU is a controversial term because there are many variables that must be taken into consideration....how sensitive the test is, how long did the blood sit around before it got tested, how big was the sample of blood that was tested, etc. Most doctors will be satisfied when the patient reaches a 3 log reduction but some are now saying that it's not even necessary to achieve that deeper level of response as long as the patient remains stable in CCR. At no time can we stop taking Gleevec, no matter how great our response is. Our responses are dependent on us taking the medication so if you stop taking the medication you are almost certain to relapse. Gleevec cannot kill the quiescent cells which lurk around in a sleeping mode waiting to be woken up. As long as we continue taking the Gleevec, those cells will be killed when they decide to wake up from their slumber but if we stop taking the medication and those cells wake up......well you can see what would happen. Hope that helps explain things a bit. Tracey > > > My doctor seemed to think that I *was* at zero, even after my BMB. But then one day my bloodwork, which included a new test, showed that 20 percent of my cells were cancerous. At first he feared that I had developed an immunity to Gleevec and that my white cell count was climbing again, but then when he studied the lab report he realized the panel now included that new additional test. Does this make sense? > > If in fact I *had* achieved CCR, would that mean I could quit taking Gleevec, or is the CCR contingent upon taking Gleevec? > > > From: zmiller@... > Date: Sat, 10 Jan 2009 23:59:38 -0500 > Subject: RE: [ ] STOOPID QUESTION > > > > > > > > > > > > > > > > > > > > > Hi , > > > > CCR stands for Complete Cytogenic Response. This means that there are 0 out > > of 20 cells tested that have the Philadelphia Chromosome. The test that is > > performed is called a BMA or a BMB. This is the test where they stick a > > needle in your hip and take some bone marrow out for testing. > > > > The difference between a BMA (Bone Marrow Aspiration) and a BMB (Bone Marrow > > Biopsy) is that with a BMB in addition to taking out some bone marrow, they > > also take out part of the bone for examination. > > > > Zavie > > > > Zavie (age 70) > > 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 > > 3.6 log reduction Apr/08 > > 3.6 log reduction Sep/08 > > e-mail: zmiller@... > > Tel: 613-726-1117 > > Fax: 309-296-0807 > > Cell: 613-282-0204 > > ID: zaviem > > YM: zaviemiller > > Skype: Zavie > > > > > > [ ] Gleevec > > > > I have been reading some of your posts that show you have been on > > > > Gleevec for years. I was diagnosed in May of 2008 with a RBC of close > > > > to 300,000. I was put on 400mg of Gleevec which I tolerate pretty > > > > well. I had my 2nd bone marrow biopsy(the 6th month mark) in December. > > > > I don't have the exact lab results, but it was explained to my husband > > > > and me that when I was first diagnosed, that they looked at 200 of my > > > > cells and 198 showed the Philadephia cells. From my December bone > > > > marrow biospy out of 200 cells, 40 showed the Philadephia cells and > > > > that I have to have another biopsy in June. I was told that if my cells > > > > arent under 20, that the Gleevec is considered a failure and that I > > > > should look at other medications? This seems odd to me. My regular > > > > blood counts look good every time. Any ideas? > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 You would need to find out which test showed 20%, was it a cytogenetic test, a FISH test or a PCR test. Also, how long have you been on 400mg? If it hasn't been a year yet, I wouldn't worry too much. > > > > > > > > > My doctor seemed to think that I *was* at zero, even after my BMB. > > But then one day my bloodwork, which included a new test, showed that > > 20 percent of my cells were cancerous. At first he feared that I had > > developed an immunity to Gleevec and that my white cell count was > > climbing again, but then when he studied the lab report he realized > > the panel now included that new additional test. Does this make sense? > > > > > > If in fact I *had* achieved CCR, would that mean I could quit > > taking Gleevec, or is the CCR contingent upon taking Gleevec? > > > > > > > > > From: zmiller@ > > > Date: Sat, 10 Jan 2009 23:59:38 -0500 > > > Subject: RE: [ ] STOOPID QUESTION > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi , > > > > > > > > > > > > CCR stands for Complete Cytogenic Response. This means that there > > are 0 out > > > > > > of 20 cells tested that have the Philadelphia Chromosome. The test > > that is > > > > > > performed is called a BMA or a BMB. This is the test where they > > stick a > > > > > > needle in your hip and take some bone marrow out for testing. > > > > > > > > > > > > The difference between a BMA (Bone Marrow Aspiration) and a BMB > > (Bone Marrow > > > > > > Biopsy) is that with a BMB in addition to taking out some bone > > marrow, they > > > > > > also take out part of the bone for examination. > > > > > > > > > > > > Zavie > > > > > > > > > > > > Zavie (age 70) > > > > > > 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 > > > > > > 3.6 log reduction Apr/08 > > > > > > 3.6 log reduction Sep/08 > > > > > > e-mail: zmiller@ > > > > > > Tel: 613-726-1117 > > > > > > Fax: 309-296-0807 > > > > > > Cell: 613-282-0204 > > > > > > ID: zaviem > > > > > > YM: zaviemiller > > > > > > Skype: Zavie > > > > > > > > > > > > > > > > > > [ ] Gleevec > > > > > > > > > > > > I have been reading some of your posts that show you have been on > > > > > > > > > > > > Gleevec for years. I was diagnosed in May of 2008 with a RBC of > > close > > > > > > > > > > > > to 300,000. I was put on 400mg of Gleevec which I tolerate pretty > > > > > > > > > > > > well. I had my 2nd bone marrow biopsy(the 6th month mark) in > > December. > > > > > > > > > > > > I don't have the exact lab results, but it was explained to my > > husband > > > > > > > > > > > > and me that when I was first diagnosed, that they looked at 200 of > > my > > > > > > > > > > > > cells and 198 showed the Philadephia cells. From my December bone > > > > > > > > > > > > marrow biospy out of 200 cells, 40 showed the Philadephia cells and > > > > > > > > > > > > that I have to have another biopsy in June. I was told that if my > > cells > > > > > > > > > > > > arent under 20, that the Gleevec is considered a failure and that I > > > > > > > > > > > > should look at other medications? This seems odd to me. My regular > > > > > > > > > > > > blood counts look good every time. Any ideas? > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2009 Report Share Posted January 12, 2009 It has been since April of '05! From: traceyincanada@... Date: Mon, 12 Jan 2009 03:05:13 +0000 Subject: Re: [ ] STOOPID QUESTION You would need to find out which test showed 20%, was it a cytogenetic test, a FISH test or a PCR test. Also, how long have you been on 400mg? If it hasn't been a year yet, I wouldn't worry too much. > > > > > > > > > My doctor seemed to think that I *was* at zero, even after my BMB. > > But then one day my bloodwork, which included a new test, showed that > > 20 percent of my cells were cancerous. At first he feared that I had > > developed an immunity to Gleevec and that my white cell count was > > climbing again, but then when he studied the lab report he realized > > the panel now included that new additional test. Does this make sense? > > > > > > If in fact I *had* achieved CCR, would that mean I could quit > > taking Gleevec, or is the CCR contingent upon taking Gleevec? > > > > > > > > > From: zmiller@ > > > Date: Sat, 10 Jan 2009 23:59:38 -0500 > > > Subject: RE: [ ] STOOPID QUESTION > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi , > > > > > > > > > > > > CCR stands for Complete Cytogenic Response. This means that there > > are 0 out > > > > > > of 20 cells tested that have the Philadelphia Chromosome. The test > > that is > > > > > > performed is called a BMA or a BMB. This is the test where they > > stick a > > > > > > needle in your hip and take some bone marrow out for testing. > > > > > > > > > > > > The difference between a BMA (Bone Marrow Aspiration) and a BMB > > (Bone Marrow > > > > > > Biopsy) is that with a BMB in addition to taking out some bone > > marrow, they > > > > > > also take out part of the bone for examination. > > > > > > > > > > > > Zavie > > > > > > > > > > > > Zavie (age 70) > > > > > > 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 > > > > > > 3.6 log reduction Apr/08 > > > > > > 3.6 log reduction Sep/08 > > > > > > e-mail: zmiller@ > > > > > > Tel: 613-726-1117 > > > > > > Fax: 309-296-0807 > > > > > > Cell: 613-282-0204 > > > > > > ID: zaviem > > > > > > YM: zaviemiller > > > > > > Skype: Zavie > > > > > > > > > > > > > > > > > > [ ] Gleevec > > > > > > > > > > > > I have been reading some of your posts that show you have been on > > > > > > > > > > > > Gleevec for years. I was diagnosed in May of 2008 with a RBC of > > close > > > > > > > > > > > > to 300,000. I was put on 400mg of Gleevec which I tolerate pretty > > > > > > > > > > > > well. I had my 2nd bone marrow biopsy(the 6th month mark) in > > December. > > > > > > > > > > > > I don't have the exact lab results, but it was explained to my > > husband > > > > > > > > > > > > and me that when I was first diagnosed, that they looked at 200 of > > my > > > > > > > > > > > > cells and 198 showed the Philadephia cells. From my December bone > > > > > > > > > > > > marrow biospy out of 200 cells, 40 showed the Philadephia cells and > > > > > > > > > > > > that I have to have another biopsy in June. I was told that if my > > cells > > > > > > > > > > > > arent under 20, that the Gleevec is considered a failure and that I > > > > > > > > > > > > should look at other medications? This seems odd to me. My regular > > > > > > > > > > > > blood counts look good every time. Any ideas? > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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