Guest guest Posted September 15, 2005 Report Share Posted September 15, 2005 Hi Kathie -- Huge congrats!! love, Kathy in Massachusetts dx 5/03 > Dear Listmates: > > I have had great news. I got the results of my latest BMB which was in mid July and I am PCRU! It took me awhile to really believe that was what the test said, but my doc's nurse has confirmed it. I have had and treasured my Zero Club number for a while (#676 I think) and just want to encourage all of you to continue to fight the good fight and to be proactive in managing your own treatment plan. I beleive that the PCRU is not something that I have " earned " because I know of many people on this list who deserve it more than I and if I could have I would have given it to beautiful Jenn who just lost her struggle and leaves a small son. But I also know that I feel empowered to fight this disease through the grace of God. > > In December of 03, when I was first diagnosed, I did some reading on the Web and knew that I wanted to try to do 800 mg. of Gleevec. The local onc I saw at first was not really sold, but when I insisted he agreed. Two months later I began seeing Dr. Giles at MDACC on a consulting basis and he affirmed that I should continue the 800 mg dosage since I had very few physical side effects and would use ProCrit to manage the hemoglobin suppression. I currently take 60,000 mgs of ProCrit weekly in order to maintain my hemo at above 10. But it has allowed me to faitfully take 800 mgs of Gleevec. So, here's to living better (or at least living) through chemistry. > > For those of you whose struggle has just begun, take heart. This is a disease that can be managed. And unlike our brothers and sisters with other forms of cancer, each day we hear of new drugs that promise control and perhaps elimination of this disease. If I have any words of wisdon to share with you it would be learn all you can about CML and it's treatment. This is your life, not your doc's, not your spouse's, not your mom's. And just because someone is an onc, doesn't mean that he or she knows a lot about CML. Don't rely on others to keep track of your progress. Get copies of all your test results and keep track of your own counts, and BMB results. And for heaven sakes, when you are confused or depressed or have questions, just come on line and seek help from your CML brothers and sister. > Cheers, > Kathie in Kentucky > -- > > > > --------- Re: New options for patients with CML > > > > > > In a message dated 9/12/2005 7:08:29 P.M. Eastern Daylight Time, > > kisocean@e... writes: > > > > explore. > > > > Dasatinib (BMS-354825) is a kinase inhibitor, and is 300 to 1000 times > > more potent than imatinib (gleevec) for inhibition of bcr-abl tyrosine > > kinase. Dasatinib is also an SRC inhibitor as well as an abl > > inhibitor. Dasatinib is orally bio-available and can be taken as an > > > > > > > > I was wondering about something. First, if BMS is greater than Gleevec, how > > come there are fewer side effects reported? And, I know we all hated taking > > IFN by injection. But I had a thought: has anyone taken Gleevec intravenously, > > by injection??? I am wondering if it would be better for those with > > stomach irritation due to Gleevec being taken by mouth. Think it would be an > > option? The beauty of Gleevec is that we can take it orally, but just > > wondering if > > it has ever been administered other ways.- Lynne A. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2005 Report Share Posted September 15, 2005 Hey Kathie, cinver@a... wrote: > Dear Listmates: > > I have had great news. I got the results of my latest BMB which was in mid July and I am PCRU! > Cheryl say's: Congratulations Kathie - this is such wonderful news. said: In December of 03, when I was first diagnosed, I did some reading on the Web and knew that I wanted to try to do 800 mg. of Gleevec. The local onc I saw at first was not really sold, but when I insisted he agreed. Two months later I began seeing Dr. Giles at MDACC on a consulting basis and he affirmed that I should continue the 800 mg dosage since I had very few physical side effects and would use ProCrit to manage the hemoglobin suppression. Cheryl Say's: He is such a nice Doc, I met him in Ireland and he spent 2 hours with Suzan McNamara, Rudy Putns and myself as we all talked at length about CML and all the various approaches to treating it. Tell him Cheryl-Anne from the Ireland conference say's hi! He'll know who you're talking about, we've chatted a few times since then. Kathie said: If I have any words of wisdon to share with you it would be learn all you can about CML and it's treatment. This is your life, not your doc's, not your spouse's, not your mom's. And just because someone is an onc, doesn't mean that he or she knows a lot about CML. Don't rely on others to keep track of your progress. Get copies of all your test results and keep track of your own counts, and BMB results. And for heaven sakes, when you are confused or depressed or have questions, just come on line and seek help from your CML brothers and sister. Cheryl say's: Well said Kathie. A word of caution about coming here for answer's - none of us is qualified to give you any answers, we can only give you our experiences and understanding of the situation. It is very important to verify the information you receive here, either privately or publicly, with your doctor, just like you did when deciding on the 800mg. The most reliable person on this list is R. and C and Dorothy E. are excellent sources of information in helping us to understand this disease. Even though there are many people who mean well, there is a lot of mis information. Some of that has to do with the fact that there is a lot of new information and it is hard to keep up. I am glad you stuck with the 800mg regimen - you've been nicely rewarded. Cheers and all best of luck to you. Cheryl-Anne > Cheers, > Kathie in Kentucky > -- > > > > --------- Re: New options for patients with CML > > > > > > In a message dated 9/12/2005 7:08:29 P.M. Eastern Daylight Time, > > kisocean@e... writes: > > > > explore. > > > > Dasatinib (BMS-354825) is a kinase inhibitor, and is 300 to 1000 times > > more potent than imatinib (gleevec) for inhibition of bcr-abl tyrosine > > kinase. Dasatinib is also an SRC inhibitor as well as an abl > > inhibitor. Dasatinib is orally bio-available and can be taken as an > > > > > > > > I was wondering about something. First, if BMS is greater than Gleevec, how > > come there are fewer side effects reported? And, I know we all hated taking > > IFN by injection. But I had a thought: has anyone taken Gleevec intravenously, > > by injection??? I am wondering if it would be better for those with > > stomach irritation due to Gleevec being taken by mouth. Think it would be an > > option? The beauty of Gleevec is that we can take it orally, but just > > wondering if > > it has ever been administered other ways.- Lynne A. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2005 Report Share Posted September 15, 2005 Whoo Hooo ! Congratulations!! This is as good as it gets so go celebrate. Stories like yours are inspirational so I'm glad you shared it. Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2005 Report Share Posted September 16, 2005 At 06:05 PM 9/15/05 +0000, you wrote: >I have had great news. I got the results of my latest BMB which was in >mid July and I am PCRU! It took me awhile to really believe that was what >the test said, but my doc's nurse has confirmed it. I have had and >treasured my Zero Club number for a while (#676 I think) and just want to >encourage all of you to continue to fight the good fight and to be >proactive in managing your own treatment plan. Kathy, Congrats on your PCRU status.....I was thinking maybe there needs to be a SUPER ZERO club! And also thank your for sharing your thoughts and ideas about being a pro-active patient. You are right....no one cares about 'our health' as much as we do. These lists are a great place for those who are not seeing 'cml specialists' to get some information.....and then be able to question their own docs. Many a local onc has been impressed by the knowledge of their cml patients.....and when you are a serious patient, they become a serious doctor about cml! We have every right to know our test results in detail (not just 'you are doing well') and to have a copy for our own records. I may have some interesting information to share with you soon about me and Procrit....but I need to test it out a little longer. Also, I will be going to an interesting L & L Society lecture next week....the OHSU oncology pharmacist is talking about " The Use of Complementary Medicine in the Treatment of Cancer " .........and I will report back to the list what he shares with us. He is the pharmacist that OHSU refers to when they have any questions about drug or supplement interaction with Gleevec. Hope you are planning on having a special treat to celebrate? and is it chocolate??? Congrats again, Maui Nanc Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2005 Report Share Posted September 16, 2005 Kathie, Such wonderful news. Congratulations!!!! Adrienne cinver@... wrote: Dear Listmates: I have had great news. I got the results of my latest BMB which was in mid July and I am PCRU! It took me awhile to really believe that was what the test said, but my doc's nurse has confirmed it. I have had and treasured my Zero Club number for a while (#676 I think) and just want to encourage all of you to continue to fight the good fight and to be proactive in managing your own treatment plan. I beleive that the PCRU is not something that I have " earned " because I know of many people on this list who deserve it more than I and if I could have I would have given it to beautiful Jenn who just lost her struggle and leaves a small son. But I also know that I feel empowered to fight this disease through the grace of God. In December of 03, when I was first diagnosed, I did some reading on the Web and knew that I wanted to try to do 800 mg. of Gleevec. The local onc I saw at first was not really sold, but when I insisted he agreed. Two months later I began seeing Dr. Giles at MDACC on a consulting basis and he affirmed that I should continue the 800 mg dosage since I had very few physical side effects and would use ProCrit to manage the hemoglobin suppression. I currently take 60,000 mgs of ProCrit weekly in order to maintain my hemo at above 10. But it has allowed me to faitfully take 800 mgs of Gleevec. So, here's to living better (or at least living) through chemistry. For those of you whose struggle has just begun, take heart. This is a disease that can be managed. And unlike our brothers and sisters with other forms of cancer, each day we hear of new drugs that promise control and perhaps elimination of this disease. If I have any words of wisdon to share with you it would be learn all you can about CML and it's treatment. This is your life, not your doc's, not your spouse's, not your mom's. And just because someone is an onc, doesn't mean that he or she knows a lot about CML. Don't rely on others to keep track of your progress. Get copies of all your test results and keep track of your own counts, and BMB results. And for heaven sakes, when you are confused or depressed or have questions, just come on line and seek help from your CML brothers and sister. Cheers, Kathie in Kentucky -- --------- Re: New options for patients with CML > > > In a message dated 9/12/2005 7:08:29 P.M. Eastern Daylight Time, > kisocean@... writes: > > explore. > > Dasatinib (BMS-354825) is a kinase inhibitor, and is 300 to 1000 times > more potent than imatinib (gleevec) for inhibition of bcr-abl tyrosine > kinase. Dasatinib is also an SRC inhibitor as well as an abl > inhibitor. Dasatinib is orally bio-available and can be taken as an > > > > I was wondering about something. First, if BMS is greater than Gleevec, how > come there are fewer side effects reported? And, I know we all hated taking > IFN by injection. But I had a thought: has anyone taken Gleevec intravenously, > by injection??? I am wondering if it would be better for those with > stomach irritation due to Gleevec being taken by mouth. Think it would be an > option? The beauty of Gleevec is that we can take it orally, but just > wondering if > it has ever been administered other ways.- Lynne A. > > > Quote Link to comment Share on other sites More sharing options...
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