Guest guest Posted February 12, 2011 Report Share Posted February 12, 2011 Hi, good question. The last two times they did not give me a number, Suzanne just said I was " unreportable " on one and the next she said I was positive, but " unreportable " and do not worry. It had crept up two times, then the next two were unreportable. I don't worry about it, but lately I have been off the drug 13 days due to others problems, and this time, Mon., I can't get a bmb because i can't come off the coumadin. which begs the question, if I have to have the coumadin every day, and can't come off it for 5 days, will i never get another BMB??? I will ask the good doctor Mon. when i go to U of Mich. Honestly? at 81 I am not going to worry about it. what's going to happen will happen. I really feel lucky, that after 15 years of CML, I finally hit PCRU, that was something short of a miracle! And certainly lends hope to those that have not reached it yet. But I was just as happy when I reached CCR, after 10 months on Sprycel, and that was 10 yrs after dx. I'll see what Dr. Talpaz has to say Mon and let you all know. Bobby a ( Bobby ) Doyle, dob 12/17/29 DX 5/1995 Interferon 9 weeks/Hydroxyurea 5 years 02/2000 to 06/2002 Gleevec trial, OHSU 06/2002 Gleevec/Trisenox Trial, OHSU 06/2003 Gleevec/Zarnestra Trial, OHSU 04/2004 Sprycel Trial, MDACC, CCR in 10 months 04/2008 XL228 Trial, U of Mich. 01/2009 PCR 5.69 04/2009 Ariad Trial AP24534 09/2009 PCR 0.01 11/2009 PCR 0.034 02/2010 PCRU #840 Zavie's Zero Club From: hey00nanc <ncogan@...> Subject: [ ] question for Bobby Date: Saturday, February 12, 2011, 1:42 PM  > > Hi, I had the cardioversion, at 10 am, I am home now, it was a snap, so far it is working. No guarantee. > > a ( Bobby ) Doyle, dob 12/17/29 > 11/2009 PCR 0.034 > 02/2010 PCRU ______________________________________ Hi Bobby, Glad your procedure went well and is working for you. In your signature, the last pcr test that you show as PCRU was on 2/2010.....I assume you have had some since. Do you remain at PCRU or do you bobble around with the numbers on this drug. Hope you will have smooth sailing now. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2011 Report Share Posted February 13, 2011 Hi Bobby, I have been on Coumadin since 19991 and had BMBs every 3 months since AUG 1999 without ever stopping the coumadin. All that was done after the BMB is that I remained lying down for about 10 minutes with a gauze patch over the puncture spot until it coagulated. I must have had at least 30 BMBs since 2000 without any problems. Zavie Zavie (age 72) 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 3.7 log reduction Jan/09 3.8 log reduction May/09 3.8 log reduction Aug/09 4.0 log reduction Dec/09 4.4 log reduction e-mail: zmiller@... Tel: 613-726-1117 Fax: 613-482-4801 Cell: 613-282-0204 ID: zaviem _____ From: [mailto: ] On Behalf Of ROBERTA DOYLE Sent: February-12-11 4:58 PM Subject: Re: [ ] question for Bobby Hi, good question. The last two times they did not give me a number, Suzanne just said I was " unreportable " on one and the next she said I was positive, but " unreportable " and do not worry. It had crept up two times, then the next two were unreportable. I don't worry about it, but lately I have been off the drug 13 days due to others problems, and this time, Mon., I can't get a bmb because i can't come off the coumadin. which begs the question, if I have to have the coumadin every day, and can't come off it for 5 days, will i never get another BMB??? I will ask the good doctor Mon. when i go to U of Mich. Honestly? at 81 I am not going to worry about it. what's going to happen will happen. I really feel lucky, that after 15 years of CML, I finally hit PCRU, that was something short of a miracle! And certainly lends hope to those that have not reached it yet. But I was just as happy when I reached CCR, after 10 months on Sprycel, and that was 10 yrs after dx. I'll see what Dr. Talpaz has to say Mon and let you all know. Bobby a ( Bobby ) Doyle, dob 12/17/29 DX 5/1995 Interferon 9 weeks/Hydroxyurea 5 years 02/2000 to 06/2002 Gleevec trial, OHSU 06/2002 Gleevec/Trisenox Trial, OHSU 06/2003 Gleevec/Zarnestra Trial, OHSU 04/2004 Sprycel Trial, MDACC, CCR in 10 months 04/2008 XL228 Trial, U of Mich. 01/2009 PCR 5.69 04/2009 Ariad Trial AP24534 09/2009 PCR 0.01 11/2009 PCR 0.034 02/2010 PCRU #840 Zavie's Zero Club From: hey00nanc <ncogan@... <mailto:ncogan%40uoregon.edu> > Subject: [ ] question for Bobby <mailto:%40> Date: Saturday, February 12, 2011, 1:42 PM > > Hi, I had the cardioversion, at 10 am, I am home now, it was a snap, so far it is working. No guarantee. > > a ( Bobby ) Doyle, dob 12/17/29 > 11/2009 PCR 0.034 > 02/2010 PCRU ______________________________________ Hi Bobby, Glad your procedure went well and is working for you. In your signature, the last pcr test that you show as PCRU was on 2/2010.....I assume you have had some since. Do you remain at PCRU or do you bobble around with the numbers on this drug. Hope you will have smooth sailing now. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2011 Report Share Posted February 13, 2011 Hi Zavie, I'm not a bleeder either, it was my trial nurse at U of Mich said I had to hold the coumadin for 5 days. I just wondered how they would handle this. Bobby a ( Bobby ) Doyle, dob 12/17/29 DX 5/1995 Interferon 9 weeks/Hydroxyurea 5 years 02/2000 to 06/2002 Gleevec trial, OHSU 06/2002 Gleevec/Trisenox Trial, OHSU 06/2003 Gleevec/Zarnestra Trial, OHSU 04/2004 Sprycel Trial, MDACC, CCR in 10 months 04/2008 XL228 Trial, U of Mich. 01/2009 PCR 5.69 04/2009 Ariad Trial AP24534 09/2009 PCR 0.01 11/2009 PCR 0.034 02/2010 PCRU #840 Zavie's Zero Club From: hey00nanc <ncogan@... <mailto:ncogan%40uoregon.edu> > Subject: [ ] question for Bobby <mailto:%40> Date: Saturday, February 12, 2011, 1:42 PM > > Hi, I had the cardioversion, at 10 am, I am home now, it was a snap, so far it is working. No guarantee. > > a ( Bobby ) Doyle, dob 12/17/29 > 11/2009 PCR 0.034 > 02/2010 PCRU ______________________________________ Hi Bobby, Glad your procedure went well and is working for you. In your signature, the last pcr test that you show as PCRU was on 2/2010.....I assume you have had some since. Do you remain at PCRU or do you bobble around with the numbers on this drug. Hope you will have smooth sailing now. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2011 Report Share Posted February 13, 2011 Zavie: Are still getting BMB's every three months? Sincerely, Matt Maynor Sent from my iPhone On Feb 12, 2011, at 7:34 PM, Zavie <zmiller@...> wrote: > Hi Bobby, > > I have been on Coumadin since 19991 and had BMBs every 3 months since AUG > 1999 without ever stopping the coumadin. All that was done after the BMB is > that I remained lying down for about 10 minutes with a gauze patch over the > puncture spot until it coagulated. I must have had at least 30 BMBs since > 2000 without any problems. > > Zavie > > > Zavie (age 72) > 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 > 3.7 log reduction Jan/09 > 3.8 log reduction May/09 > 3.8 log reduction Aug/09 > 4.0 log reduction Dec/09 > 4.4 log reduction > e-mail: zmiller@... > Tel: 613-726-1117 > Fax: 613-482-4801 > Cell: 613-282-0204 > ID: zaviem > > _____ > > From: [mailto: ] On Behalf Of > ROBERTA DOYLE > Sent: February-12-11 4:58 PM > > Subject: Re: [ ] question for Bobby > > Hi, good question. The last two times they did not give me a number, > Suzanne just said I was " unreportable " on one and the next she said I was > positive, but " unreportable " and do not worry. It had crept up two times, > then the next two were unreportable. I don't worry about it, but lately I > have been off the drug 13 days due to others problems, and this time, Mon., > I can't get a bmb because i can't come off the coumadin. which begs the > question, if I have to have the coumadin every day, and can't come off it > for 5 days, will i never get another BMB??? I will ask the good doctor Mon. > when i go to U of Mich. Honestly? at 81 I am not going to worry about it. > what's going to happen will happen. I really feel lucky, that after 15 > years of CML, I finally hit PCRU, that was something short of a miracle! > And certainly lends hope to those that have not reached it yet. But I was > just as happy when I reached CCR, after 10 months on Sprycel, and > that was 10 yrs after dx. I'll see what Dr. Talpaz has to say Mon and let > you all know. Bobby > > a ( Bobby ) Doyle, dob 12/17/29 > DX 5/1995 > Interferon 9 weeks/Hydroxyurea 5 years > 02/2000 to 06/2002 Gleevec trial, OHSU > 06/2002 Gleevec/Trisenox Trial, OHSU > 06/2003 Gleevec/Zarnestra Trial, OHSU > 04/2004 Sprycel Trial, MDACC, CCR in 10 months > 04/2008 XL228 Trial, U of Mich. > 01/2009 PCR 5.69 > 04/2009 Ariad Trial AP24534 > 09/2009 PCR 0.01 > 11/2009 PCR 0.034 > 02/2010 PCRU > #840 Zavie's Zero Club > > > > From: hey00nanc <ncogan@... <mailto:ncogan%40uoregon.edu> > > Subject: [ ] > question for Bobby > <mailto:%40> > Date: Saturday, February 12, 2011, 1:42 PM > > > > > > > > Hi, I had the cardioversion, at 10 am, I am home now, it was a snap, so > far it is working. No guarantee. > > > > > > a ( Bobby ) Doyle, dob 12/17/29 > > > 11/2009 PCR 0.034 > > > 02/2010 PCRU > > ______________________________________ > > Hi Bobby, > > Glad your procedure went well and is working for you. > > In your signature, the last pcr test that you show as PCRU was on > 2/2010.....I assume you have had some since. Do you remain at PCRU or do you > bobble around with the numbers on this drug. > > Hope you will have smooth sailing now. > > C. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2011 Report Share Posted February 13, 2011 Hi Matt, I'm down to 1 every 6 months. My hemo/onc is pushing me to get it done annually. I know that as long as my PCRs are stable, there is no real point in doing the BMBs. For me it is tough to break old habits. Zavie Zavie (age 72) 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 3.7 log reduction Jan/09 3.8 log reduction May/09 3.8 log reduction Aug/09 4.0 log reduction Dec/09 4.4 log reduction e-mail: zmiller@... Tel: 613-726-1117 Fax: 613-482-4801 Cell: 613-282-0204 ID: zaviem _____ From: [mailto: ] On Behalf Of Matt Maynor Sent: February-13-11 8:24 AM Subject: Re: [ ] question for Bobby Zavie: Are still getting BMB's every three months? Sincerely, Matt Maynor Sent from my iPhone On Feb 12, 2011, at 7:34 PM, Zavie <zmiller@... <mailto:zmiller%40sympatico.ca> > wrote: > Hi Bobby, > > I have been on Coumadin since 19991 and had BMBs every 3 months since AUG > 1999 without ever stopping the coumadin. All that was done after the BMB is > that I remained lying down for about 10 minutes with a gauze patch over the > puncture spot until it coagulated. I must have had at least 30 BMBs since > 2000 without any problems. > > Zavie > > > Zavie (age 72) > 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 > 3.7 log reduction Jan/09 > 3.8 log reduction May/09 > 3.8 log reduction Aug/09 > 4.0 log reduction Dec/09 > 4.4 log reduction > e-mail: zmiller@... > Tel: 613-726-1117 > Fax: 613-482-4801 > Cell: 613-282-0204 > ID: zaviem > > _____ > > From: <mailto:%40> [mailto: <mailto:%40> ] On Behalf Of > ROBERTA DOYLE > Sent: February-12-11 4:58 PM > <mailto:%40> > Subject: Re: [ ] question for Bobby > > Hi, good question. The last two times they did not give me a number, > Suzanne just said I was " unreportable " on one and the next she said I was > positive, but " unreportable " and do not worry. It had crept up two times, > then the next two were unreportable. I don't worry about it, but lately I > have been off the drug 13 days due to others problems, and this time, Mon., > I can't get a bmb because i can't come off the coumadin. which begs the > question, if I have to have the coumadin every day, and can't come off it > for 5 days, will i never get another BMB??? I will ask the good doctor Mon. > when i go to U of Mich. Honestly? at 81 I am not going to worry about it. > what's going to happen will happen. I really feel lucky, that after 15 > years of CML, I finally hit PCRU, that was something short of a miracle! > And certainly lends hope to those that have not reached it yet. But I was > just as happy when I reached CCR, after 10 months on Sprycel, and > that was 10 yrs after dx. I'll see what Dr. Talpaz has to say Mon and let > you all know. Bobby > > a ( Bobby ) Doyle, dob 12/17/29 > DX 5/1995 > Interferon 9 weeks/Hydroxyurea 5 years > 02/2000 to 06/2002 Gleevec trial, OHSU > 06/2002 Gleevec/Trisenox Trial, OHSU > 06/2003 Gleevec/Zarnestra Trial, OHSU > 04/2004 Sprycel Trial, MDACC, CCR in 10 months > 04/2008 XL228 Trial, U of Mich. > 01/2009 PCR 5.69 > 04/2009 Ariad Trial AP24534 > 09/2009 PCR 0.01 > 11/2009 PCR 0.034 > 02/2010 PCRU > #840 Zavie's Zero Club > > > > From: hey00nanc <ncogan@... <mailto:ncogan%40uoregon.edu> <mailto:ncogan%40uoregon.edu> > > Subject: [ ] > question for Bobby > <mailto:%40> <mailto:%40> > Date: Saturday, February 12, 2011, 1:42 PM > > > > > > > > Hi, I had the cardioversion, at 10 am, I am home now, it was a snap, so > far it is working. No guarantee. > > > > > > a ( Bobby ) Doyle, dob 12/17/29 > > > 11/2009 PCR 0.034 > > > 02/2010 PCRU > > ______________________________________ > > Hi Bobby, > > Glad your procedure went well and is working for you. > > In your signature, the last pcr test that you show as PCRU was on > 2/2010.....I assume you have had some since. Do you remain at PCRU or do you > bobble around with the numbers on this drug. > > Hope you will have smooth sailing now. > > C. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2011 Report Share Posted February 14, 2011 Zavie: That is a habit that I would like to see you break. A BMB opens you up for the chance of infection, plus most CML experts do not require them even annually anymore. But I know you already know all that, us a bunch more good stuff. So physician heal thyself:). Sincerely, Matt Maynor Sent from my iPhone On Feb 13, 2011, at 10:24 AM, Zavie <zmiller@...> wrote: > Hi Matt, > > I'm down to 1 every 6 months. My hemo/onc is pushing me to get it done > annually. I know that as long as my PCRs are stable, there is no real point > in doing the BMBs. For me it is tough to break old habits. > > Zavie > > > Zavie (age 72) > 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 > 3.7 log reduction Jan/09 > 3.8 log reduction May/09 > 3.8 log reduction Aug/09 > 4.0 log reduction Dec/09 > 4.4 log reduction > e-mail: zmiller@... > Tel: 613-726-1117 > Fax: 613-482-4801 > Cell: 613-282-0204 > ID: zaviem > > _____ > > From: [mailto: ] On Behalf Of Matt > Maynor > Sent: February-13-11 8:24 AM > > Subject: Re: [ ] question for Bobby > > Zavie: > > Are still getting BMB's every three months? > > Sincerely, > > Matt Maynor > Sent from my iPhone > > On Feb 12, 2011, at 7:34 PM, Zavie <zmiller@... > <mailto:zmiller%40sympatico.ca> > wrote: > > > Hi Bobby, > > > > I have been on Coumadin since 19991 and had BMBs every 3 months since AUG > > 1999 without ever stopping the coumadin. All that was done after the BMB > is > > that I remained lying down for about 10 minutes with a gauze patch over > the > > puncture spot until it coagulated. I must have had at least 30 BMBs since > > 2000 without any problems. > > > > Zavie > > > > > > Zavie (age 72) > > 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 > > 3.7 log reduction Jan/09 > > 3.8 log reduction May/09 > > 3.8 log reduction Aug/09 > > 4.0 log reduction Dec/09 > > 4.4 log reduction > > e-mail: zmiller@... > > Tel: 613-726-1117 > > Fax: 613-482-4801 > > Cell: 613-282-0204 > > ID: zaviem > > > > _____ > > > > From: <mailto:%40> > [mailto: <mailto:%40> ] On Behalf Of > > ROBERTA DOYLE > > Sent: February-12-11 4:58 PM > > <mailto:%40> > > Subject: Re: [ ] question for Bobby > > > > Hi, good question. The last two times they did not give me a number, > > Suzanne just said I was " unreportable " on one and the next she said I was > > positive, but " unreportable " and do not worry. It had crept up two times, > > then the next two were unreportable. I don't worry about it, but lately I > > have been off the drug 13 days due to others problems, and this time, > Mon., > > I can't get a bmb because i can't come off the coumadin. which begs the > > question, if I have to have the coumadin every day, and can't come off it > > for 5 days, will i never get another BMB??? I will ask the good doctor > Mon. > > when i go to U of Mich. Honestly? at 81 I am not going to worry about it. > > what's going to happen will happen. I really feel lucky, that after 15 > > years of CML, I finally hit PCRU, that was something short of a miracle! > > And certainly lends hope to those that have not reached it yet. But I was > > just as happy when I reached CCR, after 10 months on Sprycel, and > > that was 10 yrs after dx. I'll see what Dr. Talpaz has to say Mon and let > > you all know. Bobby > > > > a ( Bobby ) Doyle, dob 12/17/29 > > DX 5/1995 > > Interferon 9 weeks/Hydroxyurea 5 years > > 02/2000 to 06/2002 Gleevec trial, OHSU > > 06/2002 Gleevec/Trisenox Trial, OHSU > > 06/2003 Gleevec/Zarnestra Trial, OHSU > > 04/2004 Sprycel Trial, MDACC, CCR in 10 months > > 04/2008 XL228 Trial, U of Mich. > > 01/2009 PCR 5.69 > > 04/2009 Ariad Trial AP24534 > > 09/2009 PCR 0.01 > > 11/2009 PCR 0.034 > > 02/2010 PCRU > > #840 Zavie's Zero Club > > > > > > > > From: hey00nanc <ncogan@... <mailto:ncogan%40uoregon.edu> > <mailto:ncogan%40uoregon.edu> > > > Subject: [ ] > > question for Bobby > > <mailto:%40> > <mailto:%40> > > Date: Saturday, February 12, 2011, 1:42 PM > > > > > > > > > > > > > > Hi, I had the cardioversion, at 10 am, I am home now, it was a snap, so > > far it is working. No guarantee. > > > > > > > > > > a ( Bobby ) Doyle, dob 12/17/29 > > > > > 11/2009 PCR 0.034 > > > > > 02/2010 PCRU > > > > ______________________________________ > > > > Hi Bobby, > > > > Glad your procedure went well and is working for you. > > > > In your signature, the last pcr test that you show as PCRU was on > > 2/2010.....I assume you have had some since. Do you remain at PCRU or do > you > > bobble around with the numbers on this drug. > > > > Hope you will have smooth sailing now. > > > > C. > > > > Quote Link to comment Share on other sites More sharing options...
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