RE: hello everyone - Sharon

April 26, 2009

Sharon,

It's a blood test that is done to measure how much of the drug is in your blood

stream. Novartis has mapped out the amounts that they consider to be

therapeutic and if your level is above that then your dose is too high and if

your level is below that, then your dose is too low.

For the majority of us, a dose of 300mg would be considered sub-therapeutic but

there are a few who are able to maintain adequate drug levels with this dose,

is one example.

People who are experiencing debilitating side effects could benefit from such

testing as it could potentially reveal that their dose is too high, meaning that

they could reduce their dose with confidence.

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

> >

April 26, 2009

Thank you Tracey,

I would love to know if my dose is to high. When I was on 400mg (Tasigna) I

was almost at PCRU and they increased it to 600mg. I sometimes think that I

would probably have reached PCRU on 400. the lesser of the drug I take the

kinder to my system. That is how I feel anyway. I am going to ask my dr.

about that.

Sharon T

_____

From: [mailto: ] On Behalf Of Tracey

Sent: Sunday, April 26, 2009 3:20 PM

Subject: Re: [ ] hello everyone - Sharon

Sharon,

It's a blood test that is done to measure how much of the drug is in your

blood stream. Novartis has mapped out the amounts that they consider to be

therapeutic and if your level is above that then your dose is too high and

if your level is below that, then your dose is too low.

For the majority of us, a dose of 300mg would be considered sub-therapeutic

but there are a few who are able to maintain adequate drug levels with this

dose, is one example.

People who are experiencing debilitating side effects could benefit from

such testing as it could potentially reveal that their dose is too high,

meaning that they could reduce their dose with confidence.

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.

<http://windowslive.com/online/hotmail?ocid=TXT_TAGLM_WL_HM_more_042009>

com/online/hotmail?ocid=TXT_TAGLM_WL_HM_more_042009>

> com/online/hotmail?ocid=TXT_TAGLM_WL_HM_more_042009

> >

April 27, 2009

-Tracey,

Again thanks for this info.I am going to ask my Dr for this when I see him

again..

SharonS

In , " Tracey " <traceyincanada@...> wrote:

>

> Sharon,

> It's a blood test that is done to measure how much of the drug is in your

blood stream. Novartis has mapped out the amounts that they consider to be

therapeutic and if your level is above that then your dose is too high and if

your level is below that, then your dose is too low.

>

> For the majority of us, a dose of 300mg would be considered sub-therapeutic

but there are a few who are able to maintain adequate drug levels with this

dose, is one example.

>

> People who are experiencing debilitating side effects could benefit from such

testing as it could potentially reveal that their dose is too high, meaning that

they could reduce their dose with confidence.

>

> 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

> > >

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