Re: from your major lurker- Sharon

[Guest guest]

Sharon, people have switched back and forth between drugs with no problems. If

someone starts out on Gleevec but finds the side effects too difficult and

decides to try another drug, there's no reason why they can't return to Gleevec

after if they find the side effects on the new drug worse.

Obviously if Gleevec isn't working therapeutically then you wouldn't want to

return to it but if the reason for switching was based solely on side effects,

there's no reason why you couldn't return, and many people have done so.

Tracey

-- In , " serenitywon " <serenitywon@...> wrote:

>

> Hello,

> I am rather new to this and am getting even more confused..If that's

possible.lol. My question...If I try Gleevec and it appears that my side effects

are too much for me to handle and I am switched to say Tansgnia and I try that

for a time and the side effects are even worse than the Gleevec side effects

.......I can't go back to Gleevec? If I try something and it doesn't work out (or

I don't feel it is working as good as it should or QOL is affected drastically)

I don't have the option to go back to the med and retry later?

>

> I was originally on Gleevec 400Mg then advanced to 600mg then reduced to

400mg again due to side effects.I accieved a 3 log reduction once I moved to 600

mg but haven't retested yet to see if I have remained there since I decreased my

dose.This has all happened in less than a year.I am 41 and am in bed 6 days a

week due to side effects.Not much of a QOL but I am giving it some time.My DR

hasn't even suggested any other meds.

>

> Thanks for sharing your journey.

> SharonS

>

>

> In , " " <Educatorsusan@> wrote:

> >

> > I guess this is why I do not write often. Your comments were from the

heart. Luckily, for me, I had Dr. Druker, my local oncologist and my husband

see me through some VERY trying times with Gleevec! My MAIN point was that if

you have a willing doctor(s) and a wonderful companion, all odds are in your

favor that if the dosage of Gleevec were monitored VERY carefully, Gleevec was

not a bust for me or for anyone if done properly. I am NOT saying that Gleevec

is for everyone.

> >

> > I resent the statement about the Dr. Druker supports and seems to back

Gleevec because he is the inventor. WRONG! That statement is completely WRONG!

He refers patients all the time when Gleevec is not working and HE DOES NOT

HESITATE. In my case, we hestitated TOO long but this is in hindsight. WE

LEARNED from my experience so that it would help others through their CML

journey. The only thing I would have done differently would be that the 600

dosage been decreased one year earlier. We do know that the 600 dosage does

bring more patients closer to PCRU. I am very fortunate. I have reached this

but at a major expense. AFTER 11 days on Gleevec, and Zavie can attest to this,

I had to stop the Gleevec since my reaction to it early on was debilitating. I

could not even lift a toothbrush to my mouth to brush my teeth. I was CARRIED

into the local doctor's office to have me looked at. Then my local doctor

called Dr. Druker to find out WHAT was going on. This was NOT to be taken

lightly. I was slowly increased over a period of 3 months back to 600 mg...baby

steps.

> >

> > I look at it this way since I have my qualtiy of life back now. IF I HAD

NOT GONE THROUGH WHAT I HAD GONE THROUGH, there would not be a benchmark for

others to fall under. When I talked with Zavie at the beginning while running a

101.5 temperature and Zavie told me that NO ONE ran a temperature with Gleevec,

we all knew that I was special. The pain (and I have a HIGH tolerance for pain)

had to be managed by Celebrex. I had ALL the reactions to Gleevec EXCEPT the

rash!

> >

> > I did not like the " tone " in the emails that were generated from my

response. I was just conveying a simple message. DO NOT USE UP YOUR OPTIONS SO

QUICKLY. These options out there now are still few and far between. Dr.

Druker, my husband and local oncologist ALL agreed with this premise. If my

quality of life did not get better within those two years of trials and errors,

Dr. Druker was pulling the Gleevec from under me. I did get better. Sometimes

it is better to suffer the side effects than to out use your options.

> >

> > THIS WAS ALL I WAS TRYING TO SAY!

> >

> > I am a CML warrior and I am here to talk about it. I am so glad that I

paved a smoother road for SOME people.

> >

> > Hugs,

> >

> >

> >

> > Rosenthal

> > Miami, Florida

> > 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.

> >

>

[Guest guest]

Tracey,

Thank you for clarifying that for me..Yes the Gleevec is working at a

theraputic level but I have alot of side effects(not sure all related to Gleevec

or the combo with my other meds).Good info to know..

Thanks

SharonS

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

>

> Sharon, people have switched back and forth between drugs with no problems.

If someone starts out on Gleevec but finds the side effects too difficult and

decides to try another drug, there's no reason why they can't return to Gleevec

after if they find the side effects on the new drug worse.

>

> Obviously if Gleevec isn't working therapeutically then you wouldn't want to

return to it but if the reason for switching was based solely on side effects,

there's no reason why you couldn't return, and many people have done so.

>

> Tracey

>

> -- In , " serenitywon " <serenitywon@> wrote:

> >

> > Hello,

> > I am rather new to this and am getting even more confused..If that's

possible.lol. My question...If I try Gleevec and it appears that my side effects

are too much for me to handle and I am switched to say Tansgnia and I try that

for a time and the side effects are even worse than the Gleevec side effects

.......I can't go back to Gleevec? If I try something and it doesn't work out (or

I don't feel it is working as good as it should or QOL is affected drastically)

I don't have the option to go back to the med and retry later?

> >

> > I was originally on Gleevec 400Mg then advanced to 600mg then reduced to

400mg again due to side effects.I accieved a 3 log reduction once I moved to 600

mg but haven't retested yet to see if I have remained there since I decreased my

dose.This has all happened in less than a year.I am 41 and am in bed 6 days a

week due to side effects.Not much of a QOL but I am giving it some time.My DR

hasn't even suggested any other meds.

> >

> > Thanks for sharing your journey.

> > SharonS

> >

> >

> > In , " " <Educatorsusan@> wrote:

> > >

> > > I guess this is why I do not write often. Your comments were from the

heart. Luckily, for me, I had Dr. Druker, my local oncologist and my husband

see me through some VERY trying times with Gleevec! My MAIN point was that if

you have a willing doctor(s) and a wonderful companion, all odds are in your

favor that if the dosage of Gleevec were monitored VERY carefully, Gleevec was

not a bust for me or for anyone if done properly. I am NOT saying that Gleevec

is for everyone.

> > >

> > > I resent the statement about the Dr. Druker supports and seems to back

Gleevec because he is the inventor. WRONG! That statement is completely WRONG!

He refers patients all the time when Gleevec is not working and HE DOES NOT

HESITATE. In my case, we hestitated TOO long but this is in hindsight. WE

LEARNED from my experience so that it would help others through their CML

journey. The only thing I would have done differently would be that the 600

dosage been decreased one year earlier. We do know that the 600 dosage does

bring more patients closer to PCRU. I am very fortunate. I have reached this

but at a major expense. AFTER 11 days on Gleevec, and Zavie can attest to this,

I had to stop the Gleevec since my reaction to it early on was debilitating. I

could not even lift a toothbrush to my mouth to brush my teeth. I was CARRIED

into the local doctor's office to have me looked at. Then my local doctor

called Dr. Druker to find out WHAT was going on. This was NOT to be taken

lightly. I was slowly increased over a period of 3 months back to 600 mg...baby

steps.

> > >

> > > I look at it this way since I have my qualtiy of life back now. IF I HAD

NOT GONE THROUGH WHAT I HAD GONE THROUGH, there would not be a benchmark for

others to fall under. When I talked with Zavie at the beginning while running a

101.5 temperature and Zavie told me that NO ONE ran a temperature with Gleevec,

we all knew that I was special. The pain (and I have a HIGH tolerance for pain)

had to be managed by Celebrex. I had ALL the reactions to Gleevec EXCEPT the

rash!

> > >

> > > I did not like the " tone " in the emails that were generated from my

response. I was just conveying a simple message. DO NOT USE UP YOUR OPTIONS SO

QUICKLY. These options out there now are still few and far between. Dr.

Druker, my husband and local oncologist ALL agreed with this premise. If my

quality of life did not get better within those two years of trials and errors,

Dr. Druker was pulling the Gleevec from under me. I did get better. Sometimes

it is better to suffer the side effects than to out use your options.

> > >

> > > THIS WAS ALL I WAS TRYING TO SAY!

> > >

> > > I am a CML warrior and I am here to talk about it. I am so glad that I

paved a smoother road for SOME people.

> > >

> > > Hugs,

> > >

> > >

> > >

> > > Rosenthal

> > > Miami, Florida

> > > 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.

> > >

> >

>

[Guest guest]

WOW! I had no idea! They keep telling me I shouldn't go off Gleevec, because

once I'm off I can't go back on. The truth emerges!

From: traceyincanada@...

Date: Sun, 26 Apr 2009 22:11:17 +0000

Subject: [ ] Re: from your major lurker- Sharon

Sharon, people have switched back and forth between drugs with no

problems. If someone starts out on Gleevec but finds the side effects too

difficult and decides to try another drug, there's no reason why they can't

return to Gleevec after if they find the side effects on the new drug worse.

Obviously if Gleevec isn't working therapeutically then you wouldn't want to

return to it but if the reason for switching was based solely on side effects,

there's no reason why you couldn't return, and many people have done so.

Tracey

-- In , " serenitywon " <serenitywon@...> wrote:

>

> Hello,

> I am rather new to this and am getting even more confused..If that's

possible.lol. My question...If I try Gleevec and it appears that my side effects

are too much for me to handle and I am switched to say Tansgnia and I try that

for a time and the side effects are even worse than the Gleevec side effects

.......I can't go back to Gleevec? If I try something and it doesn't work out (or

I don't feel it is working as good as it should or QOL is affected drastically)

I don't have the option to go back to the med and retry later?

>

> I was originally on Gleevec 400Mg then advanced to 600mg then reduced to

400mg again due to side effects.I accieved a 3 log reduction once I moved to 600

mg but haven't retested yet to see if I have remained there since I decreased my

dose.This has all happened in less than a year.I am 41 and am in bed 6 days a

week due to side effects.Not much of a QOL but I am giving it some time.My DR

hasn't even suggested any other meds.

>

> Thanks for sharing your journey.

> SharonS

>

>

> In , " " <Educatorsusan@> wrote:

> >

> > I guess this is why I do not write often. Your comments were from the

heart. Luckily, for me, I had Dr. Druker, my local oncologist and my husband

see me through some VERY trying times with Gleevec! My MAIN point was that if

you have a willing doctor(s) and a wonderful companion, all odds are in your

favor that if the dosage of Gleevec were monitored VERY carefully, Gleevec was

not a bust for me or for anyone if done properly. I am NOT saying that Gleevec

is for everyone.

> >

> > I resent the statement about the Dr. Druker supports and seems to back

Gleevec because he is the inventor. WRONG! That statement is completely WRONG!

He refers patients all the time when Gleevec is not working and HE DOES NOT

HESITATE. In my case, we hestitated TOO long but this is in hindsight. WE

LEARNED from my experience so that it would help others through their CML

journey. The only thing I would have done differently would be that the 600

dosage been decreased one year earlier. We do know that the 600 dosage does

bring more patients closer to PCRU. I am very fortunate. I have reached this

but at a major expense. AFTER 11 days on Gleevec, and Zavie can attest to this,

I had to stop the Gleevec since my reaction to it early on was debilitating. I

could not even lift a toothbrush to my mouth to brush my teeth. I was CARRIED

into the local doctor's office to have me looked at. Then my local doctor

called Dr. Druker to find out WHAT was going on. This was NOT to be taken

lightly. I was slowly increased over a period of 3 months back to 600 mg...baby

steps.

> >

> > I look at it this way since I have my qualtiy of life back now. IF I HAD

NOT GONE THROUGH WHAT I HAD GONE THROUGH, there would not be a benchmark for

others to fall under. When I talked with Zavie at the beginning while running a

101.5 temperature and Zavie told me that NO ONE ran a temperature with Gleevec,

we all knew that I was special. The pain (and I have a HIGH tolerance for pain)

had to be managed by Celebrex. I had ALL the reactions to Gleevec EXCEPT the

rash!

> >

> > I did not like the " tone " in the emails that were generated from my

response. I was just conveying a simple message. DO NOT USE UP YOUR OPTIONS SO

QUICKLY. These options out there now are still few and far between. Dr.

Druker, my husband and local oncologist ALL agreed with this premise. If my

quality of life did not get better within those two years of trials and errors,

Dr. Druker was pulling the Gleevec from under me. I did get better. Sometimes

it is better to suffer the side effects than to out use your options.

> >

> > THIS WAS ALL I WAS TRYING TO SAY!

> >

> > I am a CML warrior and I am here to talk about it. I am so glad that I

paved a smoother road for SOME people.

> >

> > Hugs,

> >

> >

> >

> > Rosenthal

> > Miami, Florida

> > 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.

> >

>

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