Guest guest Posted January 20, 2011 Report Share Posted January 20, 2011 Hi: I just saw my Oncologist yesterday, and I think she was more excited than I was with my test results. Still PCRU now for 7 years, and I told her I am just Blessed that I am starting my 13th year living with CML. She was discussing the fact that it was good that I have still been on the same dose of Gleevec 400mg since Oct.of 2000. I just Thank God for each day. All you can do is take one day at a time. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2011 Report Share Posted January 21, 2011 , Thanks for sharing this information! I think it gives every one more hope!  ~Karine~ ________________________________ From: A <suzzienovember@...> Sent: Thu, January 20, 2011 3:55:48 PM Subject: [ ] Just some Encouragement  Hi: I just saw my Oncologist yesterday, and I think she was more excited than I was with my test results. Still PCRU now for 7 years, and I told her I am just Blessed that I am starting my 13th year living with CML. She was discussing the fact that it was good that I have still been on the same dose of Gleevec 400mg since Oct.of 2000. I just Thank God for each day. All you can do is take one day at a time. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2011 Report Share Posted January 21, 2011 That's wonderful encouragement! I am so happy for you. Sincerely, Matt Maynor Sent from my iPhone On Jan 20, 2011, at 6:55 PM, " A " <suzzienovember@...> wrote: > Hi: I just saw my Oncologist yesterday, and I think she was more excited than I was with my test results. Still PCRU now for 7 years, and I told her I am just Blessed that I am starting my 13th year living with CML. She was discussing the fact that it was good that I have still been on the same dose of Gleevec 400mg since Oct.of 2000. > I just Thank God for each day. All you can do is take one day at a time. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2011 Report Share Posted January 21, 2011 Hi , That is fabulous news. I'm right behind you. I was dxd in August of 1999. That puts me in my 12th year of CML. Still on a 400 mg dose. Haven't hit PCRU yet but hanging around a 4.5 log reduction. I've been on a 400 mg dose since March 2001. We are inspirations to those who follow us, Zavie _____ From: [mailto: ] On Behalf Of A Sent: January-20-11 6:56 PM Subject: [ ] Just some Encouragement Hi: I just saw my Oncologist yesterday, and I think she was more excited than I was with my test results. Still PCRU now for 7 years, and I told her I am just Blessed that I am starting my 13th year living with CML. She was discussing the fact that it was good that I have still been on the same dose of Gleevec 400mg since Oct.of 2000. I just Thank God for each day. All you can do is take one day at a time. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2011 Report Share Posted January 21, 2011 Wow......both of you have an amazing story to tell. Have either of you had any long term impacts of being on Gleevec? Since I am the rookie (dx4/30/10) in the group and still a baby (50), what should I be asking my oncologist and my family doctor? I am and have been a type II diabetic for 15 years and control it with oral medication. Glucohpage, uvia, and Actos Since I have diabetes, I am also on Lisinipril for blood pressure and Pravastatin for cholesterol as a precaution. I started 400 mg Gleevec in May of 2010. I am very physically fit, never been overweight, and no health problems.......I always think it is funny to say I have no health problems when I have CML! I do and train for Ironman triathlons and usually exercise between 10 - 15 hours a week. The Gleevec sometimes causes a nauseated feeling after ingesting, some muscle (sharp) pain, and mostly cramping....unfortunately, this happens during my swim workouts. Any advice would be greatly appreciated as I plan on being on this earth for a long, long time! Tom ________________________________ From: Zavie <zmiller@...> Sent: Thu, January 20, 2011 8:38:31 PM Subject: RE: [ ] Just some Encouragement  Hi , That is fabulous news. I'm right behind you. I was dxd in August of 1999. That puts me in my 12th year of CML. Still on a 400 mg dose. Haven't hit PCRU yet but hanging around a 4.5 log reduction. I've been on a 400 mg dose since March 2001. We are inspirations to those who follow us, Zavie _____ From: [mailto: ] On Behalf Of A Sent: January-20-11 6:56 PM Subject: [ ] Just some Encouragement Hi: I just saw my Oncologist yesterday, and I think she was more excited than I was with my test results. Still PCRU now for 7 years, and I told her I am just Blessed that I am starting my 13th year living with CML. She was discussing the fact that it was good that I have still been on the same dose of Gleevec 400mg since Oct.of 2000. I just Thank God for each day. All you can do is take one day at a time. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2011 Report Share Posted January 21, 2011 Hi Zavie:  I knew you were right there with me with dates and doses. You have always been a inspiration to me with all that you do, and I hope this gives others a good feeling about fighting this disease. From: Zavie <zmiller@...> Subject: RE: [ ] Just some Encouragement Date: Thursday, January 20, 2011, 10:38 PM  Hi , That is fabulous news. I'm right behind you. I was dxd in August of 1999. That puts me in my 12th year of CML. Still on a 400 mg dose. Haven't hit PCRU yet but hanging around a 4.5 log reduction. I've been on a 400 mg dose since March 2001. We are inspirations to those who follow us, Zavie _____ From: [mailto: ] On Behalf Of A Sent: January-20-11 6:56 PM Subject: [ ] Just some Encouragement Hi: I just saw my Oncologist yesterday, and I think she was more excited than I was with my test results. Still PCRU now for 7 years, and I told her I am just Blessed that I am starting my 13th year living with CML. She was discussing the fact that it was good that I have still been on the same dose of Gleevec 400mg since Oct.of 2000. I just Thank God for each day. All you can do is take one day at a time. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2011 Report Share Posted January 21, 2011 Hi Tom, I don't have any good advice, except keep on doing what you're doing. I am 81, I'm in my 16th year with CML, and any problems I have are not related to CML, they are related to " old age " . Between Lottie and me, I think we have been in every trial out there, unfortunately gleevec did not work for either of us. I think perhaps because we have had CML so long, way before Gleevec, some drugs just aren't going to do the trick. We are both on Ariad now, so far so good. You've come to a good site for advice, there is always someone here who knows the answer, if they don't they'll find it. 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: Tom Ratzlaff <archer591@...> Subject: Re: [ ] Just some Encouragement Date: Thursday, January 20, 2011, 11:06 PM  Wow......both of you have an amazing story to tell. Have either of you had any long term impacts of being on Gleevec? Since I am the rookie (dx4/30/10) in the group and still a baby (50), what should I be asking my oncologist and my family doctor? I am and have been a type II diabetic for 15 years and control it with oral medication. Glucohpage, uvia, and Actos Since I have diabetes, I am also on Lisinipril for blood pressure and Pravastatin for cholesterol as a precaution. I started 400 mg Gleevec in May of 2010. I am very physically fit, never been overweight, and no health problems.......I always think it is funny to say I have no health problems when I have CML! I do and train for Ironman triathlons and usually exercise between 10 - 15 hours a week. The Gleevec sometimes causes a nauseated feeling after ingesting, some muscle (sharp) pain, and mostly cramping....unfortunately, this happens during my swim workouts. Any advice would be greatly appreciated as I plan on being on this earth for a long, long time! Tom ________________________________ From: Zavie <zmiller@...> Sent: Thu, January 20, 2011 8:38:31 PM Subject: RE: [ ] Just some Encouragement  Hi , That is fabulous news. I'm right behind you. I was dxd in August of 1999. That puts me in my 12th year of CML. Still on a 400 mg dose. Haven't hit PCRU yet but hanging around a 4.5 log reduction. I've been on a 400 mg dose since March 2001. We are inspirations to those who follow us, Zavie _____ From: [mailto: ] On Behalf Of A Sent: January-20-11 6:56 PM Subject: [ ] Just some Encouragement Hi: I just saw my Oncologist yesterday, and I think she was more excited than I was with my test results. Still PCRU now for 7 years, and I told her I am just Blessed that I am starting my 13th year living with CML. She was discussing the fact that it was good that I have still been on the same dose of Gleevec 400mg since Oct.of 2000. I just Thank God for each day. All you can do is take one day at a time. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2011 Report Share Posted January 21, 2011 Hi Tom: I also have Diabetes, and I am on oral medication. I am on low dose Glipizide, and I have had blood pressure problems since I was in my 30's. I am on Benicar and Toprol combination, and it has helped my blood pressure to stay pretty much in range.     I still get periodic nausea, and not even sure if its from the Gleevec. I did develop GERD early on when I started the Gleevec, and I now take the little purple pill Nexium which has done wonders for me. I still get other things like foot cramps, which I just had last night. Some people feel they cannot live with the side effects they get, and granted I know some suffer more than others. I just feel that if your side effects are tolerable, and not destroying your quality of life then live with them if your drug is working for you.    I guess with me, I made it work after not having any other choices available to me back in 1998. I have learned how to say NO when I do not feel like doing something on a day that I just feel lousy.    I also have a very supportive husband which I mention a lot. He has survived Prostate Cancer for 6 years now. I guess we support each other.   Your active and that is a good thing. I do have a weight problem, and been trying to work on that issue along with some other health problems. CML used to be my top priority, but I just have learned to let the Gleevec do its job for me.   Your doing the right thing, and you do sound very healthy. Just keep it up. Know that you have so many people to talk to at any time of day here in the group to help you get through anything that concerns you. We talk about other things sometimes just to lighten the mood a bit also. Take Care From: Tom Ratzlaff <archer591@...> Subject: Re: [ ] Just some Encouragement Date: Thursday, January 20, 2011, 11:06 PM  Wow......both of you have an amazing story to tell. Have either of you had any long term impacts of being on Gleevec? Since I am the rookie (dx4/30/10) in the group and still a baby (50), what should I be asking my oncologist and my family doctor? I am and have been a type II diabetic for 15 years and control it with oral medication. Glucohpage, uvia, and Actos Since I have diabetes, I am also on Lisinipril for blood pressure and Pravastatin for cholesterol as a precaution. I started 400 mg Gleevec in May of 2010. I am very physically fit, never been overweight, and no health problems.......I always think it is funny to say I have no health problems when I have CML! I do and train for Ironman triathlons and usually exercise between 10 - 15 hours a week. The Gleevec sometimes causes a nauseated feeling after ingesting, some muscle (sharp) pain, and mostly cramping....unfortunately, this happens during my swim workouts. Any advice would be greatly appreciated as I plan on being on this earth for a long, long time! Tom ________________________________ From: Zavie <zmiller@...> Sent: Thu, January 20, 2011 8:38:31 PM Subject: RE: [ ] Just some Encouragement  Hi , That is fabulous news. I'm right behind you. I was dxd in August of 1999. That puts me in my 12th year of CML. Still on a 400 mg dose. Haven't hit PCRU yet but hanging around a 4.5 log reduction. I've been on a 400 mg dose since March 2001. We are inspirations to those who follow us, Zavie _____ From: [mailto: ] On Behalf Of A Sent: January-20-11 6:56 PM Subject: [ ] Just some Encouragement Hi: I just saw my Oncologist yesterday, and I think she was more excited than I was with my test results. Still PCRU now for 7 years, and I told her I am just Blessed that I am starting my 13th year living with CML. She was discussing the fact that it was good that I have still been on the same dose of Gleevec 400mg since Oct.of 2000. I just Thank God for each day. All you can do is take one day at a time. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2011 Report Share Posted January 22, 2011 Yeah! Great News! I'm so happy for you. Sandi > > Hi: I just saw my Oncologist yesterday, and I think she was more excited than I was with my test results. Still PCRU now for 7 years, and I told her I am just Blessed that I am starting my 13th year living with CML. She was discussing the fact that it was good that I have still been on the same dose of Gleevec 400mg since Oct.of 2000. > I just Thank God for each day. All you can do is take one day at a time. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2011 Report Share Posted January 22, 2011 Thanks . Keep up your good work and I agree that the Gleevec just needs to do it's stuff! Hopefully you are keeping good care of yourself and diabetes..... One day at a time....live in the present....take nothing for granted.....and be thankful for the things we have! What a great group this is! ________________________________ From: Armour <suzzienovember@...> Sent: Fri, January 21, 2011 3:29:29 PM Subject: Re: [ ] Just some Encouragement  Hi Tom: I also have Diabetes, and I am on oral medication. I am on low dose Glipizide, and I have had blood pressure problems since I was in my 30's. I am on Benicar and Toprol combination, and it has helped my blood pressure to stay pretty much in range.     I still get periodic nausea, and not even sure if its from the Gleevec. I did develop GERD early on when I started the Gleevec, and I now take the little purple pill Nexium which has done wonders for me. I still get other things like foot cramps, which I just had last night. Some people feel they cannot live with the side effects they get, and granted I know some suffer more than others. I just feel that if your side effects are tolerable, and not destroying your quality of life then live with them if your drug is working for you.    I guess with me, I made it work after not having any other choices available to me back in 1998. I have learned how to say NO when I do not feel like doing something on a day that I just feel lousy.    I also have a very supportive husband which I mention a lot. He has survived Prostate Cancer for 6 years now. I guess we support each other.   Your active and that is a good thing. I do have a weight problem, and been trying to work on that issue along with some other health problems. CML used to be my top priority, but I just have learned to let the Gleevec do its job for me.   Your doing the right thing, and you do sound very healthy. Just keep it up. Know that you have so many people to talk to at any time of day here in the group to help you get through anything that concerns you. We talk about other things sometimes just to lighten the mood a bit also. Take Care From: Tom Ratzlaff <archer591@...> Subject: Re: [ ] Just some Encouragement Date: Thursday, January 20, 2011, 11:06 PM  Wow......both of you have an amazing story to tell. Have either of you had any long term impacts of being on Gleevec? Since I am the rookie (dx4/30/10) in the group and still a baby (50), what should I be asking my oncologist and my family doctor? I am and have been a type II diabetic for 15 years and control it with oral medication. Glucohpage, uvia, and Actos Since I have diabetes, I am also on Lisinipril for blood pressure and Pravastatin for cholesterol as a precaution. I started 400 mg Gleevec in May of 2010. I am very physically fit, never been overweight, and no health problems.......I always think it is funny to say I have no health problems when I have CML! I do and train for Ironman triathlons and usually exercise between 10 - 15 hours a week. The Gleevec sometimes causes a nauseated feeling after ingesting, some muscle (sharp) pain, and mostly cramping....unfortunately, this happens during my swim workouts. Any advice would be greatly appreciated as I plan on being on this earth for a long, long time! Tom ________________________________ From: Zavie <zmiller@...> Sent: Thu, January 20, 2011 8:38:31 PM Subject: RE: [ ] Just some Encouragement  Hi , That is fabulous news. I'm right behind you. I was dxd in August of 1999. That puts me in my 12th year of CML. Still on a 400 mg dose. Haven't hit PCRU yet but hanging around a 4.5 log reduction. I've been on a 400 mg dose since March 2001. We are inspirations to those who follow us, Zavie _____ From: [mailto: ] On Behalf Of A Sent: January-20-11 6:56 PM Subject: [ ] Just some Encouragement Hi: I just saw my Oncologist yesterday, and I think she was more excited than I was with my test results. Still PCRU now for 7 years, and I told her I am just Blessed that I am starting my 13th year living with CML. She was discussing the fact that it was good that I have still been on the same dose of Gleevec 400mg since Oct.of 2000. I just Thank God for each day. All you can do is take one day at a time. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2011 Report Share Posted January 23, 2011 Congratulations. Keep it up Sent from my Verizon Wireless BlackBerry [ ] Re: Just some Encouragement Yeah! Great News! I'm so happy for you. Sandi > > Hi: I just saw my Oncologist yesterday, and I think she was more excited than I was with my test results. Still PCRU now for 7 years, and I told her I am just Blessed that I am starting my 13th year living with CML. She was discussing the fact that it was good that I have still been on the same dose of Gleevec 400mg since Oct.of 2000. > I just Thank God for each day. All you can do is take one day at a time. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2011 Report Share Posted January 31, 2011 Woo hoo! Congratulations. Very inspiring!!! [ ] Just some Encouragement  Hi: I just saw my Oncologist yesterday, and I think she was more excited than I was with my test results. Still PCRU now for 7 years, and I told her I am just Blessed that I am starting my 13th year living with CML. She was discussing the fact that it was good that I have still been on the same dose of Gleevec 400mg since Oct.of 2000. I just Thank God for each day. All you can do is take one day at a time. Quote Link to comment Share on other sites More sharing options...
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