Guest guest Posted March 13, 2008 Report Share Posted March 13, 2008 Dear Donna, Yes to your answer that your PCR's can go up and down. They call them bouncing PCR's. I don't think you need to worry too much about that, they will come back up again. I have seen Dr. Cortes, he is an excellent doctor. If you can tolerate the Gleevec, why would you want to change? I don't think forgetting your Gleevec for 3 days had a profound effect on your PCR score, but I'm not a doctor. Why don't you email Dr. Druker and ask his advice. No more freaking out, it's bad for your health. LOL Blessings, Lottie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2010 Report Share Posted August 25, 2010 Amen to that Lottie, Hi , like Lottie, I have had cml for over 15 years. I never reached CCR for 10 years, and not until I was in my fourth trial! I don't even think about my CML any more. I take my pills and am lucky not to have any side effects on this experimental drug, Ariad. But everyone has good days and bad days, as Lottie said, even without CML. At 80 + I consider myself lucky if I get up every day and get on with my life. In 5 weeks I am driving to Long Island, that is a 500 mile drive for me, I do it in one day. I drive to Ann Arbor Michigan once a month as I am in a trial there for the drug Ariad. I am cooking dinner Thanksgiving day for 23 family members. Life is good, certainly better than it was 15 years ago with a 5 yr. life sentence hanging over our heads. good luck, 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: Lottie Duthu <lotajam@...> Subject: [ ] Bouncing PCR's " CML " < > Date: Wednesday, August 25, 2010, 12:40 PM  Dear , I must respond to your post because you remind me so much of myself. Fifteen years ago, I used to panic with every white blood count. That is all I looked at, I didn't know anything about what the other readings meant. We were told we had 3 1/2 to 5 years to live and I counted every day, counted them down on the calendar. I don't care what age you are, you panic and I was 67 when I was diagnosed. We are here to assure you that those numbers are not signs that have skull and bones on them. This disease is unpredicable, but with the new drugs, they can be kept more in check. Looking back in retrospect, I wonder what all the hullabalo was about. We were told that we had to reach PCRU to be in a good place. I can testify that that just ain't so. You are fairly new at this game, so I think it is incumbent upon those of us who have been here a while and experienced all the yo yos to share our experience with you. We also have good medical evidence that we do not have to live with gloom and doom. I marvel at some of the things our members are doing and have nothing but admiration for them. Their enthusiasm moves me and encourages me. Every day is different and you will not be 100% every day, or as in my case, mostly 50%, but you move on with the faith and knowledge that you have and soon you will be looking after the newcomers like a mother hen looks after her chicks. Never stop sharing, we all walked in your shoes at one time. Live one day at a time and remember that even if you didn't have CML, you wouldn't feel well every day. Spend your time thinking positive thoughts. Life is here to live and we all do it to our very best abilities by learning and listening to our peers. We know things our doctors don't know because we are living in the moment that they may never experience. Have a wonderful life!!!!!!!! Carpe diem, Lottie Duthu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2010 Report Share Posted August 25, 2010 Thanks Lottie! Your emails are so inspiring! I read them all! I will keep everyone posted on the new results I get in a few weeks! Take care Lottie! Chemo-Sabi Romero 28 year old male in Santa , California DX-10.22.09 Hydroxeuya-10.22.09-10.29.09 Gleevec 400MG-10.29.09-11.06.09 Gleevec Reduction 200MG-11.06.09-01.04.10 Gleevec increase 300MG-01.05.10-01.13.10 BCR-ABL-126% or 0.2637 0.6 Log Reduction 02.05.10 Gleevec increase 400MG 01.14.10-Present 1.8 Log Reduction 06.12.10 From: [mailto: ] On Behalf Of Lottie Duthu Sent: Wednesday, August 25, 2010 9:41 AM CML Subject: [ ] Bouncing PCR's Dear , I must respond to your post because you remind me so much of myself. Fifteen years ago, I used to panic with every white blood count. That is all I looked at, I didn't know anything about what the other readings meant. We were told we had 3 1/2 to 5 years to live and I counted every day, counted them down on the calendar. I don't care what age you are, you panic and I was 67 when I was diagnosed. We are here to assure you that those numbers are not signs that have skull and bones on them. This disease is unpredicable, but with the new drugs, they can be kept more in check. Looking back in retrospect, I wonder what all the hullabalo was about. We were told that we had to reach PCRU to be in a good place. I can testify that that just ain't so. You are fairly new at this game, so I think it is incumbent upon those of us who have been here a while and experienced all the yo yos to share our experience with you. We also have good medical evidence that we do not have to live with gloom and doom. I marvel at some of the things our members are doing and have nothing but admiration for them. Their enthusiasm moves me and encourages me. Every day is different and you will not be 100% every day, or as in my case, mostly 50%, but you move on with the faith and knowledge that you have and soon you will be looking after the newcomers like a mother hen looks after her chicks. Never stop sharing, we all walked in your shoes at one time. Live one day at a time and remember that even if you didn't have CML, you wouldn't feel well every day. Spend your time thinking positive thoughts. Life is here to live and we all do it to our very best abilities by learning and listening to our peers. We know things our doctors don't kn ow because we are living in the moment that they may never experience. Have a wonderful life!!!!!!!! Carpe diem, Lottie Duthu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2010 Report Share Posted August 25, 2010 Thanks Bobby! Like Lottie you both are very inspiring! Chemo-Sabi Romero 28 year old male in Santa , California DX-10.22.09 Hydroxeuya-10.22.09-10.29.09 Gleevec 400MG-10.29.09-11.06.09 Gleevec Reduction 200MG-11.06.09-01.04.10 Gleevec increase 300MG-01.05.10-01.13.10 BCR-ABL-126% or 0.2637 0.6 Log Reduction 02.05.10 Gleevec increase 400MG 01.14.10-Present 1.8 Log Reduction 06.12.10 From: [mailto: ] On Behalf Of ROBERTA DOYLE Sent: Wednesday, August 25, 2010 9:53 AM Subject: Re: [ ] Bouncing PCR's Amen to that Lottie, Hi , like Lottie, I have had cml for over 15 years. I never reached CCR for 10 years, and not until I was in my fourth trial! I don't even think about my CML any more. I take my pills and am lucky not to have any side effects on this experimental drug, Ariad. But everyone has good days and bad days, as Lottie said, even without CML. At 80 + I consider myself lucky if I get up every day and get on with my life. In 5 weeks I am driving to Long Island, that is a 500 mile drive for me, I do it in one day. I drive to Ann Arbor Michigan once a month as I am in a trial there for the drug Ariad. I am cooking dinner Thanksgiving day for 23 family members. Life is good, certainly better than it was 15 years ago with a 5 yr. life sentence hanging over our heads. good luck, 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: Lottie Duthu <lotajam@... <mailto:lotajam%40comcast.net> > Subject: [ ] Bouncing PCR's " CML " < <mailto:%40> > Date: Wednesday, August 25, 2010, 12:40 PM Dear , I must respond to your post because you remind me so much of myself. Fifteen years ago, I used to panic with every white blood count. That is all I looked at, I didn't know anything about what the other readings meant. We were told we had 3 1/2 to 5 years to live and I counted every day, counted them down on the calendar. I don't care what age you are, you panic and I was 67 when I was diagnosed. We are here to assure you that those numbers are not signs that have skull and bones on them. This disease is unpredicable, but with the new drugs, they can be kept more in check. Looking back in retrospect, I wonder what all the hullabalo was about. We were told that we had to reach PCRU to be in a good place. I can testify that that just ain't so. You are fairly new at this game, so I think it is incumbent upon those of us who have been here a while and experienced all the yo yos to share our experience with you. We also have good medical evidence that we do not have to live with gloom and doom. I marvel at some of the things our members are doing and have nothing but admiration for them. Their enthusiasm moves me and encourages me. Every day is different and you will not be 100% every day, or as in my case, mostly 50%, but you move on with the faith and knowledge that you have and soon you will be looking after the newcomers like a mother hen looks after her chicks. Never stop sharing, we all walked in your shoes at one time. Live one day at a time and remember that even if you didn't have CML, you wouldn't feel well every day. Spend your time thinking positive thoughts. Life is here to live and we all do it to our very best abilities by learning and listening to our peers. We know things our doctors don't know because we are living in the moment that they may never experience. Have a wonderful life!!!!!!!! Carpe diem, Lottie Duthu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2010 Report Share Posted August 25, 2010 Lottie, Your words of encouragement keep me going everyday!! You and A have been my anchors, as I am just starting now to understand more about the disease we share. The first two years were so frightening and honestly I have been on Gleevec and now Tasigna. My body seems very sensitive to side effects. It can get so bad sometimes I don't even want to take my meds, then I read one of your loving posts and I'm okay again! I just wanted to thank you and for all the help and encouragement you give me by just being your caring self. Their are so many wonderful people on her, but I have adopted you two, as my go to for advice,keep sane friends. Love always, Peggy Becker Connected by MOTOBLURâ„¢ on T-Mobile [ ] Bouncing PCR's Dear , I must respond to your post because you remind me so much of myself. Fifteen years ago, I used to panic with every white blood count. That is all I looked at, I didn't know anything about what the other readings meant. We were told we had 3 1/2 to 5 years to live and I counted every day, counted them down on the calendar. I don't care what age you are, you panic and I was 67 when I was diagnosed. We are here to assure you that those numbers are not signs that have skull and bones on them. This disease is unpredicable, but with the new drugs, they can be kept more in check. Looking back in retrospect, I wonder what all the hullabalo was about. We were told that we had to reach PCRU to be in a good place. I can testify that that just ain't so. You are fairly new at this game, so I think it is incumbent upon those of us who have been here a while and experienced all the yo yos to share our experience with you. We also have good medical evidence that we do not have to live with gloom and doom. I marvel at some of the things our members are doing and have nothing but admiration for them. Their enthusiasm moves me and encourages me. Every day is different and you will not be 100% every day, or as in my case, mostly 50%, but you move on with the faith and knowledge that you have and soon you will be looking after the newcomers like a mother hen looks after her chicks. Never stop sharing, we all walked in your shoes at one time. Live one day at a time and remember that even if yo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2010 Report Share Posted August 26, 2010 Hi Peggy: You are such a sweetheart, and Thank You. I hope your feeling good right now, and you know I am always around for you at anytime. From: Peggy Becker <peggybecker@...> Subject: Re: [ ] Bouncing PCR's Date: Wednesday, August 25, 2010, 1:07 PM  Lottie, Your words of encouragement keep me going everyday!! You and A have been my anchors, as I am just starting now to understand more about the disease we share. The first two years were so frightening and honestly I have been on Gleevec and now Tasigna. My body seems very sensitive to side effects. It can get so bad sometimes I don't even want to take my meds, then I read one of your loving posts and I'm okay again! I just wanted to thank you and for all the help and encouragement you give me by just being your caring self. Their are so many wonderful people on her, but I have adopted you two, as my go to for advice,keep sane friends. Love always, Peggy Becker Connected by MOTOBLUR™ on T-Mobile [ ] Bouncing PCR's Dear , I must respond to your post because you remind me so much of myself. Fifteen years ago, I used to panic with every white blood count. That is all I looked at, I didn't know anything about what the other readings meant. We were told we had 3 1/2 to 5 years to live and I counted every day, counted them down on the calendar. I don't care what age you are, you panic and I was 67 when I was diagnosed. We are here to assure you that those numbers are not signs that have skull and bones on them. This disease is unpredicable, but with the new drugs, they can be kept more in check. Looking back in retrospect, I wonder what all the hullabalo was about. We were told that we had to reach PCRU to be in a good place. I can testify that that just ain't so. You are fairly new at this game, so I think it is incumbent upon those of us who have been here a while and experienced all the yo yos to share our experience with you. We also have good medical evidence that we do not have to live with gloom and doom. I marvel at some of the things our members are doing and have nothing but admiration for them. Their enthusiasm moves me and encourages me. Every day is different and you will not be 100% every day, or as in my case, mostly 50%, but you move on with the faith and knowledge that you have and soon you will be looking after the newcomers like a mother hen looks after her chicks. Never stop sharing, we all walked in your shoes at one time. Live one day at a time and remember that even if yo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2010 Report Share Posted August 26, 2010 Hi : I have not been on as much as I would like to, but I did read the messages, and Lottie always explains things just the way they should be. My Gosh!! You have a lifetime ahead of you, and I was always told that getting to PCRU is a blessing, but you do not have to get there to continue a good remission. You certainly have seen that a lot of people are holding very well without getting to PCRU yet. I was diagnosed in 1998, and did not get to my PCRU until 2003. I have been on Gleevec 400mg. since Oct. of 2000, but from my diagnosis there was no Gleevec, and I had to do the old Interferon Shots along with Ara-C shots to start off with. So much available to us now. To me that is a real blessing. I think even if I did not reach the PCRU that I would still be doing what I am doing now 12 years later. Will look for your new results in a few weeks. Take Care > > Thanks Lottie! Your emails are so inspiring! I read them all! I will > keep everyone posted on the new results I get in a few weeks! > > > > Take care Lottie! > > > > Chemo-Sabi > > Romero > > 28 year old male in Santa , California > > DX-10.22.09 > > Hydroxeuya-10.22.09-10.29.09 > > Gleevec 400MG-10.29.09-11.06.09 > > Gleevec Reduction 200MG-11.06.09-01.04.10 > > Gleevec increase 300MG-01.05.10-01.13.10 > > BCR-ABL-126% or 0.2637 > > 0.6 Log Reduction 02.05.10 > > Gleevec increase 400MG 01.14.10-Present > > 1.8 Log Reduction 06.12.10 > > > > From: [mailto: ] On Behalf Of > Lottie Duthu > Sent: Wednesday, August 25, 2010 9:41 AM > CML > Subject: [ ] Bouncing PCR's > > > > > > Dear , > I must respond to your post because you remind me so much of myself. > Fifteen years ago, I used to panic with every white blood count. That is > all I looked at, I didn't know anything about what the other readings > meant. We were told we had 3 1/2 to 5 years to live and I counted every > day, counted them down on the calendar. I don't care what age you are, > you panic and I was 67 when I was diagnosed. > > We are here to assure you that those numbers are not signs that have > skull and bones on them. This disease is unpredicable, but with the new > drugs, they can be kept more in check. Looking back in retrospect, I > wonder what all the hullabalo was about. We were told that we had to > reach PCRU to be in a good place. I can testify that that just ain't so. > > > You are fairly new at this game, so I think it is incumbent upon those > of us who have been here a while and experienced all the yo yos to share > our experience with you. We also have good medical evidence that we do > not have to live with gloom and doom. I marvel at some of the things our > members are doing and have nothing but admiration for them. Their > enthusiasm moves me and encourages me. Every day is different and you > will not be 100% every day, or as in my case, mostly 50%, but you move > on with the faith and knowledge that you have and soon you will be > looking after the newcomers like a mother hen looks after her chicks. > Never stop sharing, we all walked in your shoes at one time. Live one > day at a time and remember that even if you didn't have CML, you > wouldn't feel well every day. Spend your time thinking positive > thoughts. Life is here to live and we all do it to our very best > abilities by learning and listening to our peers. We know things our > doctors don't kn ow because we are living in the moment that they may > never experience. Have a wonderful life!!!!!!!! > > Carpe diem, > Lottie Duthu > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.