Guest guest Posted April 26, 2009 Report Share Posted April 26, 2009 , did you have serum level testing before you went onto 300mg? If your blood level is below a therapeutic level (which would be the case for the majority of us on 300mg) then you're opening yourself up to developing a resistance to Gleevec which would make the drug useless for you. Most doctors would recommend a new drug than a suboptimal dose of an old drug. The only way you can know if your dose is suboptimal is if you have serum level testing. Please don't gamble with a low dose unless you are sure that your blood levels are optimal. Tracey > > > This post was very meaningful to me. I would like to know more about managing side effects -- esp. chronic fatigue and sleepiness. My new doc seems eager to try all aspects of taking Gleevec before switching to another med. Right now I'm taking 300 mg. a day. > > Thank you , > > > > From: Educatorsusan@... > Date: Sat, 25 Apr 2009 23:33:03 +0000 > Subject: [ ] hello everyone from a MAJOR lurker > > > > > > > > > > > > > > > > > > > > > > > > > > > Dear Everyone: > > > > I read most of your posts daily but rarely respond. > > > > I see Dr. Druker every 6 months. NO ONE has ever had the reactions that I have had to Gleevec. NO ONE. Dr. Druker calls me his upper 10% of all patients with so many side effects and a lot of it baffles him. I was written up in BLOOD magazine in hopes that Doctors would realize that each drug, chemo or not, needs to be tailored to each individual patient---and I was proof of that! > > > > Needless to say, after Gleevec PK monitoring, I am on a sub-optimal dosage because it is what works for me and my body. > > > > In regards to switching from one medication to another, even Dr. Druker would tell us (my husband and I), that unless substantial proof could be made, WHY would anyone wish to switch a drug when you need these in your arsenal? If Gleevec is working, despite side effects, why change it IF YOU MAY need to switch one day because of failure...not side effects. Many a visit entailed montioring me carefully. Mind you, Dr. Druker believes SOLEY in quality of life...so his decision to keep me on Gleevec was a soul searching endeavor!!! > > > > I am taking 250 mg daily now under strick guidelines with Dr. Druker which emcompasses every three months a Gleevec PK level montored by CML Alliance (at the beginning in Pittsburgh-but paid for by Novartis) and a PCR test by blood (used to be by BMB/BMA) every three months. I am PCRU!!! I began on 600 mg since this is Dr. Druker " s favorite dosage. What we never realized was that a patient can go into a toxic state which I did indeed enter. Having a blood transfusion every 4-6 weeks was no picnic but I hung in there... > > > > Side Effects can be managed by following routines. IF you have problems you may contact me by email and I will try to guide you. Dr. Druker's office learned a lot from me and I learned a lot from them. > > > > It is hard to imagine what I looked like at the early stages of Gleevec and hard to reflect back all the side effects I had. I still do have some side effects now but they are manageable. Did we ever comtemplate going off Gleevec---sure we did BUT it all boiled down to how much I wanted to use up all the different avenues so quickly when I MIGHT need them down my CML Journey. The old theory that if something is working, you just do not abandon it in hopes of greenre pastures...you never know what those greener pastures may bring. > > > > Gleevec is still standard of choice. Dr. Druker feels that physicians, in gerenal, are too hasty to switch patients without exploring all the options with side effects. > > > > Rosenthal > > dx. January 8th, 2003 > > Began Gleevec: 4/10/2003 > > Ceased Gleevec: 4/21/2003 > > " Rebegan " Gleevec: 4/25/2003 > > Tranfusion dependent: May 2004-November 2005 > > Gleevec reduced to 400mg: 8/2004 > > Gleevec reduced to 300mg: 8/2005 > > Gleevec reduced to 200/300 alternating days: November 7, 2006 to > > present day except now I am taking 250 every day now... > > Still undetectable 9/24/2008 > > BMB/BMA PCRU!!! FISH 0% YEAH!!!!! > > Next appointment with Dr. Druker: Thursday,April 09, 2009 > > Gleevec PK Level taken every 3 months monitored by Novartis and Dr. > > Druker. PCR taken every 3 months! > > PCR-in June was a weak positive but Dr. Druker felt that it was the > > same as undetectable...repeated PCR in August 2008-undetectable!!! > > (BMB/BMA PCRU!!! FISH 0% YEAH!!!!!) > > I was told that I would not need another BMB as long as my numbers stay where they are!!! YIPEEEE! > > 3/2009 PCRU!!!! Yippee!!! Nested test not being done any longer at OHSU. > > > > > > > > > > > > > > > > > > > > > > > _________________________________________________________________ > Windows Live™ Hotmail®:…more than just e-mail. > http://windowslive.com/online/hotmail?ocid=TXT_TAGLM_WL_HM_more_042009 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2009 Report Share Posted April 26, 2009 Tracey What is serum level testing??? Sharon T _____ From: [mailto: ] On Behalf Of Tracey Sent: Sunday, April 26, 2009 3:07 PM Subject: Re: [ ] hello everyone - , did you have serum level testing before you went onto 300mg? If your blood level is below a therapeutic level (which would be the case for the majority of us on 300mg) then you're opening yourself up to developing a resistance to Gleevec which would make the drug useless for you. Most doctors would recommend a new drug than a suboptimal dose of an old drug. The only way you can know if your dose is suboptimal is if you have serum level testing. Please don't gamble with a low dose unless you are sure that your blood levels are optimal. Tracey > > > This post was very meaningful to me. I would like to know more about managing side effects -- esp. chronic fatigue and sleepiness. My new doc seems eager to try all aspects of taking Gleevec before switching to another med. Right now I'm taking 300 mg. a day. > > Thank you , > > > groups (DOT) <mailto:%40> com > From: Educatorsusan@... > Date: Sat, 25 Apr 2009 23:33:03 +0000 > Subject: [ ] hello everyone from a MAJOR lurker > > > > > > > > > > > > > > > > > > > > > > > > > > > Dear Everyone: > > > > I read most of your posts daily but rarely respond. > > > > I see Dr. Druker every 6 months. NO ONE has ever had the reactions that I have had to Gleevec. NO ONE. Dr. Druker calls me his upper 10% of all patients with so many side effects and a lot of it baffles him. I was written up in BLOOD magazine in hopes that Doctors would realize that each drug, chemo or not, needs to be tailored to each individual patient---and I was proof of that! > > > > Needless to say, after Gleevec PK monitoring, I am on a sub-optimal dosage because it is what works for me and my body. > > > > In regards to switching from one medication to another, even Dr. Druker would tell us (my husband and I), that unless substantial proof could be made, WHY would anyone wish to switch a drug when you need these in your arsenal? If Gleevec is working, despite side effects, why change it IF YOU MAY need to switch one day because of failure...not side effects. Many a visit entailed montioring me carefully. Mind you, Dr. Druker believes SOLEY in quality of life...so his decision to keep me on Gleevec was a soul searching endeavor!!! > > > > I am taking 250 mg daily now under strick guidelines with Dr. Druker which emcompasses every three months a Gleevec PK level montored by CML Alliance (at the beginning in Pittsburgh-but paid for by Novartis) and a PCR test by blood (used to be by BMB/BMA) every three months. I am PCRU!!! I began on 600 mg since this is Dr. Druker " s favorite dosage. What we never realized was that a patient can go into a toxic state which I did indeed enter. Having a blood transfusion every 4-6 weeks was no picnic but I hung in there... > > > > Side Effects can be managed by following routines. IF you have problems you may contact me by email and I will try to guide you. Dr. Druker's office learned a lot from me and I learned a lot from them. > > > > It is hard to imagine what I looked like at the early stages of Gleevec and hard to reflect back all the side effects I had. I still do have some side effects now but they are manageable. Did we ever comtemplate going off Gleevec---sure we did BUT it all boiled down to how much I wanted to use up all the different avenues so quickly when I MIGHT need them down my CML Journey. The old theory that if something is working, you just do not abandon it in hopes of greenre pastures...you never know what those greener pastures may bring. > > > > Gleevec is still standard of choice. Dr. Druker feels that physicians, in gerenal, are too hasty to switch patients without exploring all the options with side effects. > > > > Rosenthal > > dx. January 8th, 2003 > > Began Gleevec: 4/10/2003 > > Ceased Gleevec: 4/21/2003 > > " Rebegan " Gleevec: 4/25/2003 > > Tranfusion dependent: May 2004-November 2005 > > Gleevec reduced to 400mg: 8/2004 > > Gleevec reduced to 300mg: 8/2005 > > Gleevec reduced to 200/300 alternating days: November 7, 2006 to > > present day except now I am taking 250 every day now... > > Still undetectable 9/24/2008 > > BMB/BMA PCRU!!! FISH 0% YEAH!!!!! > > Next appointment with Dr. Druker: Thursday,April 09, 2009 > > Gleevec PK Level taken every 3 months monitored by Novartis and Dr. > > Druker. PCR taken every 3 months! > > PCR-in June was a weak positive but Dr. Druker felt that it was the > > same as undetectable...repeated PCR in August 2008-undetectable!!! > > (BMB/BMA PCRU!!! FISH 0% YEAH!!!!!) > > I was told that I would not need another BMB as long as my numbers stay where they are!!! YIPEEEE! > > 3/2009 PCRU!!!! Yippee!!! Nested test not being done any longer at OHSU. > > > > > > > > > > > > > > > > > > > > > > > __________________________________________________________ > Windows LiveT HotmailR:.more than just e-mail. > http://windowslive. <http://windowslive.com/online/hotmail?ocid=TXT_TAGLM_WL_HM_more_042009> com/online/hotmail?ocid=TXT_TAGLM_WL_HM_more_042009 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2009 Report Share Posted April 27, 2009 Excellent advice. From: traceyincanada@... Date: Sun, 26 Apr 2009 22:06:59 +0000 Subject: Re: [ ] hello everyone - , did you have serum level testing before you went onto 300mg? If your blood level is below a therapeutic level (which would be the case for the majority of us on 300mg) then you're opening yourself up to developing a resistance to Gleevec which would make the drug useless for you. Most doctors would recommend a new drug than a suboptimal dose of an old drug. The only way you can know if your dose is suboptimal is if you have serum level testing. Please don't gamble with a low dose unless you are sure that your blood levels are optimal. Tracey > > > This post was very meaningful to me. I would like to know more about managing side effects -- esp. chronic fatigue and sleepiness. My new doc seems eager to try all aspects of taking Gleevec before switching to another med. Right now I'm taking 300 mg. a day. > > Thank you , > > > > From: Educatorsusan@... > Date: Sat, 25 Apr 2009 23:33:03 +0000 > Subject: [ ] hello everyone from a MAJOR lurker > > > > > > > > > > > > > > > > > > > > > > > > > > > Dear Everyone: > > > > I read most of your posts daily but rarely respond. > > > > I see Dr. Druker every 6 months. NO ONE has ever had the reactions that I have had to Gleevec. NO ONE. Dr. Druker calls me his upper 10% of all patients with so many side effects and a lot of it baffles him. I was written up in BLOOD magazine in hopes that Doctors would realize that each drug, chemo or not, needs to be tailored to each individual patient---and I was proof of that! > > > > Needless to say, after Gleevec PK monitoring, I am on a sub-optimal dosage because it is what works for me and my body. > > > > In regards to switching from one medication to another, even Dr. Druker would tell us (my husband and I), that unless substantial proof could be made, WHY would anyone wish to switch a drug when you need these in your arsenal? If Gleevec is working, despite side effects, why change it IF YOU MAY need to switch one day because of failure...not side effects. Many a visit entailed montioring me carefully. Mind you, Dr. Druker believes SOLEY in quality of life...so his decision to keep me on Gleevec was a soul searching endeavor!!! > > > > I am taking 250 mg daily now under strick guidelines with Dr. Druker which emcompasses every three months a Gleevec PK level montored by CML Alliance (at the beginning in Pittsburgh-but paid for by Novartis) and a PCR test by blood (used to be by BMB/BMA) every three months. I am PCRU!!! I began on 600 mg since this is Dr. Druker " s favorite dosage. What we never realized was that a patient can go into a toxic state which I did indeed enter. Having a blood transfusion every 4-6 weeks was no picnic but I hung in there... > > > > Side Effects can be managed by following routines. IF you have problems you may contact me by email and I will try to guide you. Dr. Druker's office learned a lot from me and I learned a lot from them. > > > > It is hard to imagine what I looked like at the early stages of Gleevec and hard to reflect back all the side effects I had. I still do have some side effects now but they are manageable. Did we ever comtemplate going off Gleevec---sure we did BUT it all boiled down to how much I wanted to use up all the different avenues so quickly when I MIGHT need them down my CML Journey. The old theory that if something is working, you just do not abandon it in hopes of greenre pastures...you never know what those greener pastures may bring. > > > > Gleevec is still standard of choice. Dr. Druker feels that physicians, in gerenal, are too hasty to switch patients without exploring all the options with side effects. > > > > Rosenthal > > dx. January 8th, 2003 > > Began Gleevec: 4/10/2003 > > Ceased Gleevec: 4/21/2003 > > " Rebegan " Gleevec: 4/25/2003 > > Tranfusion dependent: May 2004-November 2005 > > Gleevec reduced to 400mg: 8/2004 > > Gleevec reduced to 300mg: 8/2005 > > Gleevec reduced to 200/300 alternating days: November 7, 2006 to > > present day except now I am taking 250 every day now... > > Still undetectable 9/24/2008 > > BMB/BMA PCRU!!! FISH 0% YEAH!!!!! > > Next appointment with Dr. Druker: Thursday,April 09, 2009 > > Gleevec PK Level taken every 3 months monitored by Novartis and Dr. > > Druker. PCR taken every 3 months! > > PCR-in June was a weak positive but Dr. Druker felt that it was the > > same as undetectable...repeated PCR in August 2008-undetectable!!! > > (BMB/BMA PCRU!!! FISH 0% YEAH!!!!!) > > I was told that I would not need another BMB as long as my numbers stay where they are!!! YIPEEEE! > > 3/2009 PCRU!!!! Yippee!!! Nested test not being done any longer at OHSU. > > > > > > > > > > > > > > > > > > > > > > > __________________________________________________________ > Windows Live™ Hotmail®:…more than just e-mail. > http://windowslive.com/online/hotmail?ocid=TXT_TAGLM_WL_HM_more_042009 > > Quote Link to comment Share on other sites More sharing options...
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