Re: hello everyone from a MAJOR lurker

April 26, 2009

I prefer to have a better quality of life and my quality of life on Gleevec

was awful.!!!!!I looked like a walking rash and was sick all the time.

Why would I want to waste years of my life like that. I am on Tasigna for

over a year and am a different person.

I prefer quality of life because you never know how much of it you have

left. Everyone is different.

Sharon

_____

From: [mailto: ] On Behalf Of

Sent: Saturday, April 25, 2009 4:33 PM

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.

April 26, 2009

you said,

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!!!

People can not just switch from medication to medication without justifiable

grounds to be able to receive funding for the drug. I had so many QOL issues

with Glivec – constant migraines that were getting longer and longer and

days off work extending from 2 days to 1 week is not QOL. It is no use

being alive if you can’t enjoy life! I had to work and still do, especially

as my husband had a stroke last year and cannot work now.

I constantly had Glivec breaks which is not satisfactory in long term

management and can lead to resistance and possible mutations developing. I

was on a suboptimal dose of Glivec – 200mg and my PK was ½ of the

therapeutic level, so my PCR’s were starting to climb again, which were

being monitored monthly. The standard PCR monitoring is 3 monthly so nothing

new there.

I’m sorry if this is harsh – you can choose to be a martyr and put up with

all the side effects, I however chose QOL and so did my haematologist and

Australia’s leading CML specialist with all the options on the table. You

are also a CML warrior and I commend you for that, as Glivec was your only

choice - however we are extremely lucky in these times to have other drug

options and the informed patient and doctor can make those choices and I

don’t believe we should be taken to task for following up other avenues of

treatment because we are advocating for ourselves.

Like Sharon, I have been on Tasigna for 8 months and I actually have my life

back and can enjoy my grandchildren fully again. BTW, there are trials being

undertaken with newly dx patients commencing Tasigna as firstline drug, but

as we know, Glivec is still seen as the mainstay first line drug. Of course

Dr Druker is also going to be very pro Glivec as he developed this wonderful

drug, but I’m sure there are patients of his who have gone on to Sprycel and

Tasigna due to the side effects of Glivec.

Regards,

from Down Under

#1149 Zavies Zero Club

Dx: 25/07/07

Commenced Glivec 400mg 27/9/07

Changed to Tasigna 800mg 3/8/08

PCRs:

23/01/08 - 13.01 %

14/04/08 - 0.08 %

12/05/08 - 0.02% (Glivec 200mg)

06/08/08 - 0.09 % (commenced Tasigna)

30/09/08 - 0.18 %

19/12/08 - 0.00%

Waiting for March result

From: [mailto: ] On Behalf Of

Sent: Sunday, 26 April 2009 9:33 AM

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.

April 26, 2009

I think the point of 's post has been missed to an extent. I will give

you an example from my personal experience.

I have about three different doctors on my " team " . One of them retired and

on my last doctor visit I met the new guy that was taking over for the

primary doctor on my " team " . The very first thing he mentioned in the exam

room was switching me to one of the " backup " drugs for Gleevec. I ask him if

there was a reason related to CML I needed to do this, he said no. I then

ask him if he can guarantee no side effects or less, he said no. So needless

to say my answer to him was no. The doctor he replaced that retired told me

himself that since my side effects are manageable with other medication and

the Gleevec is holding me in remission there was no reason to change.

From what I have read here over the last couple of years, many doctors start

new patients off on one of the " backup " drugs, or with the slightest sign of

side effects switch to one of them. Granted Gleevec does indeed have

different effects depending on the person, and I realize some people cannot

tolerate it. So I am in no way criticizing those that have switched.

The concern I have with some is, if you start out one of the " backup "

medications what do you do if those stop working? As far as the comment

about switching being based on a justification to pay for the medication,

from my understanding(and this is here in the US so Australia or other

countries maybe different) if your doctor decides to switch your medication

he can come up with a justification by simply saying it is medically

necessary.

I have been on 400mg of Gleevec since 2004, and yes my quality of life is no

where near what it used to be, but here is the thing. There are people on

Gleevec that have little to no side effects, and as I said others cannot

tolerate it. In between, you have those like myself and . I cannot

really make a totally informed comment on Tasigna or any of the other

medications out there for the treatment of CML, but I am sure those

medications have different effects on different people as with Gleevec.

You have to do what you feel is best for yourself, so if it works for you

great, but remember just because it works for you, does not mean it will for

another person. If they can come out with something that would for sure give

me back the life I had I would jump at the chance, but not to the extent I

would risk possibly being knocked out of remission. If the Gleevec stops

working, then I will look into switching, but until that time I have to

handle my side effects and do the best I can.

I think was simply trying to show the same concern as I do about

patients skipping ahead of Gleevec to these " backup " medications. One thing

everyone needs to keep in mind. Not all of us are lucky enough to live with

CML without side effects that change our lives. In my humble opinion is if

you cannot tolerate Gleevec then switch, but why gamble on a new medication

first when Gleevec is a proven effective treatment for most of us with CML.

I personally feel better knowing I still have options if the Gleevec stops

working.

Terry

DX'ed April 04

Do not remember my Zavies Zero Club number

Remission reached in 04

Gleevec 400mg's daily since 04

On Sun, Apr 26, 2009 at 4:53 AM, Malseed <rodorbal@...>wrote:

>

> you said,

>

> 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!!!

>

> People can not just switch from medication to medication without

> justifiable

> grounds to be able to receive funding for the drug. I had so many QOL

> issues

> with Glivec – constant migraines that were getting longer and longer and

> days off work extending from 2 days to 1 week is not QOL. It is no use

> being alive if you can’t enjoy life! I had to work and still do, especially

> as my husband had a stroke last year and cannot work now.

>

> I constantly had Glivec breaks which is not satisfactory in long term

> management and can lead to resistance and possible mutations developing. I

> was on a suboptimal dose of Glivec – 200mg and my PK was ½ of the

> therapeutic level, so my PCR’s were starting to climb again, which were

> being monitored monthly. The standard PCR monitoring is 3 monthly so

> nothing

> new there.

>

> I’m sorry if this is harsh – you can choose to be a martyr and put up with

> all the side effects, I however chose QOL and so did my haematologist and

> Australia’s leading CML specialist with all the options on the table. You

> are also a CML warrior and I commend you for that, as Glivec was your only

> choice - however we are extremely lucky in these times to have other drug

> options and the informed patient and doctor can make those choices and I

> don’t believe we should be taken to task for following up other avenues of

> treatment because we are advocating for ourselves.

>

> Like Sharon, I have been on Tasigna for 8 months and I actually have my

> life

> back and can enjoy my grandchildren fully again. BTW, there are trials

> being

> undertaken with newly dx patients commencing Tasigna as firstline drug, but

> as we know, Glivec is still seen as the mainstay first line drug. Of course

> Dr Druker is also going to be very pro Glivec as he developed this

> wonderful

> drug, but I’m sure there are patients of his who have gone on to Sprycel

> and

> Tasigna due to the side effects of Glivec.

>

> Regards,

>

> from Down Under

>

> #1149 Zavies Zero Club

>

> Dx: 25/07/07

>

> Commenced Glivec 400mg 27/9/07

>

> Changed to Tasigna 800mg 3/8/08

>

> PCRs:

>

> 23/01/08 - 13.01 %

>

> 14/04/08 - 0.08 %

>

> 12/05/08 - 0.02% (Glivec 200mg)

>

> 06/08/08 - 0.09 % (commenced Tasigna)

>

> 30/09/08 - 0.18 %

>

> 19/12/08 - 0.00%

>

> Waiting for March result

>

> From: <%40> [mailto:

> <%40>] On Behalf Of

> Sent: Sunday, 26 April 2009 9:33 AM

> <%40>

> 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.

>

April 26, 2009

Terry as I read your email I had to stop and write. One of the things that

my doctor truly believes is the reason I am doing so so well is I am on no

other medication. If you have to take more medication to get rid of side

effects that are caused by another medication I believe that is when you run

into problems. These medications are so new no one knows for sure what

should and should not be taken.

That is my personal feeling and I may be way off base.

Sharon

[ ] 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.

>

April 26, 2009

Sharon,

Your not off base at all, I am sure if I did not have to take the other

medications I would feel better. I am in a catch 22.

I am in complete remission, but to maintain it I still suffer from bone

pain,nausea, and fatigue. So I have to take other medications.

Also along with the physical side effects, I have had other issues that came

with along with CML that pretty much destroyed my life. Not going to get

into them, some within the group know, and everyone here has their own

issues to deal with. I became a lurker and only post once in a while to try

and help someone when I can. I learned that at least in my case that is for

the best.

Take care,

Terry

On Sun, Apr 26, 2009 at 11:25 AM, Sharon Teichera <onthewtr@...>wrote:

>

> Terry as I read your email I had to stop and write. One of the things that

> my doctor truly believes is the reason I am doing so so well is I am on no

> other medication. If you have to take more medication to get rid of side

> effects that are caused by another medication I believe that is when you

> run

> into problems. These medications are so new no one knows for sure what

> should and should not be taken.

> That is my personal feeling and I may be way off base.

> Sharon

>

> [ ] 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.

> >

April 26, 2009

Terry,

I just feel very fortunate to be feeling the way I am and healthy in every

other way. I wish we could all be that way.

Please don’t' take me wrong in anything I say--you too --- I care about

all of us and just wish the best for all. We all have a struggle and some

struggle more than others. But we all have the same goal. To live!!!

I care

Sharon

[ ] 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.

> >

April 26, 2009

Hello all

well I guess that I am on the fence about any of the new drugs,

my thought is that if one is not working then try the others.

In my case I was was on Myleran for over 27 years and it worked

fine, although it was not supposed to. I became ill and the

switched me to Gleevec, it did nothing so my doctor got me

in the Nilotinib (Tasigna) trial, I was in it for about a year

and became so sick with side effect, pancreas and liver problems

that I was switched to Dasatinib for about 6 months or more,

and again side effect like PE and liver problems that I was switched

back to Nilotinib. Again side effect hit and I was off nilotinib

for about a month, then back on got back to about 600mg a day

when I was in trouble again with side effects, I was off for while

and now back on very small dose. I must admit this time I was real

sick with Tmps in the 38.8 39C range all kinds of other side effects

that they put me on antibotics IV for the last three weeks, will

be off the antibotics in about a week, then back to the grind.

Why was I taken off Gleevec? well I was in the accelerated stage and

gleevec was not working, My doc said he had to do something and he

did, mind you it has not been easy. I find every time I come off

Nilotinib I am able to tolerate it better when I go back, who knows

I may still get up to the 800mg my doc thinks I need.

There are days though, when my platelets are zero and my hemg is in the

70 that I feel like I am just spinning my wheels, my ANC is very low and

my WBC was 1.5 this morning. My advice to all, if you can stay on a single drug

do so, but do not be afraid of the others, I've had them all

and they all are trying to keep us alive

Keep Safe all I keep us all in my prayers..

SkipD

dx'ed 30++++ years ago

busulfan (myleran)

hydroxeurea

Tasigna (Nilotinib)

Dasatinib (sprycell)

Nilotinib (Tasigna)

Plt infusions twice weekly

Hmg infusions twice monthly.

SEE WARNINGS FOR INFORMATION REGARDING BUSULFAN-INDUCED LEUKEMOGENESIS IN

HUMANS.

Myleran Description

Myleran (busulfan) is a bifunctional alkylating agent. Busulfan is known

chemically as 1,4-butanediol dimethanesulfonate and has the following structural

formula:

CH3SO2O(CH2)4OSO2CH3

Busulfan is not a structural analog of the nitrogen mustards. Myleran is

available in tablet form for oral administration. Each film-coated tablet

contains 2 mg busulfan and the inactive ingredients hypromellose, lactose

(anhydrous), magnesium stearate, pregelatinized starch, triacetin, and titanium

dioxide.

The activity of busulfan in chronic myelogenous leukemia was first reported by

D.A.G. Galton in 1953.

> From: Terry Dailey <terrydailey@...>

> Subject: Re: [ ] hello everyone from a MAJOR lurker

>

> Received: Sunday, April 26, 2009, 12:03 PM

> I think the point of 's post has

> been missed to an extent. I will give

> you an example from my personal experience.

> I have about three different doctors on my " team " . One of

> them retired and

> on my last doctor visit I met the new guy that was taking

> over for the

> primary doctor on my " team " . The very first thing he

> mentioned in the exam

> room was switching me to one of the " backup " drugs for

> Gleevec. I ask him if

> there was a reason related to CML I needed to do this, he

> said no. I then

> ask him if he can guarantee no side effects or less, he

> said no. So needless

> to say my answer to him was no. The doctor he replaced that

> retired told me

> himself that since my side effects are manageable with

> other medication and

> the Gleevec is holding me in remission there was no reason

> to change.

> From what I have read here over the last couple of years,

> many doctors start

> new patients off on one of the " backup " drugs, or with the

> slightest sign of

> side effects switch to one of them. Granted Gleevec does

> indeed have

> different effects depending on the person, and I realize

> some people cannot

> tolerate it. So I am in no way criticizing those that have

> switched.

> The concern I have with some is, if you start out one of

> the " backup "

> medications what do you do if those stop working? As far as

> the comment

> about switching being based on a justification to pay for

> the medication,

> from my understanding(and this is here in the US so

> Australia or other

> countries maybe different) if your doctor decides to switch

> your medication

> he can come up with a justification by simply saying it is

> medically

> necessary.

> I have been on 400mg of Gleevec since 2004, and yes my

> quality of life is no

> where near what it used to be, but here is the thing. There

> are people on

> Gleevec that have little to no side effects, and as I said

> others cannot

> tolerate it. In between, you have those like myself and

> . I cannot

> really make a totally informed comment on Tasigna or any of

> the other

> medications out there for the treatment of CML, but I am

> sure those

> medications have different effects on different people as

> with Gleevec.

> You have to do what you feel is best for yourself, so if it

> works for you

> great, but remember just because it works for you, does not

> mean it will for

> another person. If they can come out with something that

> would for sure give

> me back the life I had I would jump at the chance, but not

> to the extent I

> would risk possibly being knocked out of remission. If the

> Gleevec stops

> working, then I will look into switching, but until that

> time I have to

> handle my side effects and do the best I can.

> I think was simply trying to show the same concern as

> I do about

> patients skipping ahead of Gleevec to these " backup "

> medications. One thing

> everyone needs to keep in mind. Not all of us are lucky

> enough to live with

> CML without side effects that change our lives. In my

> humble opinion is if

> you cannot tolerate Gleevec then switch, but why gamble on

> a new medication

> first when Gleevec is a proven effective treatment for most

> of us with CML.

> I personally feel better knowing I still have options if

> the Gleevec stops

> working.

>

> Terry

> DX'ed April 04

> Do not remember my Zavies Zero Club number

> Remission reached in 04

> Gleevec 400mg's daily since 04

>

> On Sun, Apr 26, 2009 at 4:53 AM, Malseed <rodorbal@...>wrote:

>

> >

> > you said,

> >

> > 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!!!

> >

> > People can not just switch from medication to

> medication without

> > justifiable

> > grounds to be able to receive funding for the drug. I

> had so many QOL

> > issues

> > with Glivec â€“ constant migraines that were getting

> longer and longer and

> > days off work extending from 2 days to 1 week is not

> QOL. It is no use

> > being alive if you canâ€™t enjoy life! I had to work

> and still do, especially

> > as my husband had a stroke last year and cannot work

> now.

> >

> > I constantly had Glivec breaks which is not

> satisfactory in long term

> > management and can lead to resistance and possible

> mutations developing. I

> > was on a suboptimal dose of Glivec â€“ 200mg and my PK

> was Â½ of the

> > therapeutic level, so my PCRâ€™s were starting to

> climb again, which were

> > being monitored monthly. The standard PCR monitoring

> is 3 monthly so

> > nothing

> > new there.

> >

> > Iâ€™m sorry if this is harsh â€“ you can choose to be

> a martyr and put up with

> > all the side effects, I however chose QOL and so did

> my haematologist and

> > Australiaâ€™s leading CML specialist with all the

> options on the table. You

> > are also a CML warrior and I commend you for that, as

> Glivec was your only

> > choice - however we are extremely lucky in these times

> to have other drug

> > options and the informed patient and doctor can make

> those choices and I

> > donâ€™t believe we should be taken to task for

> following up other avenues of

> > treatment because we are advocating for ourselves.

> >

> > Like Sharon, I have been on Tasigna for 8 months and I

> actually have my

> > life

> > back and can enjoy my grandchildren fully again. BTW,

> there are trials

> > being

> > undertaken with newly dx patients commencing Tasigna

> as firstline drug, but

> > as we know, Glivec is still seen as the mainstay first

> line drug. Of course

> > Dr Druker is also going to be very pro Glivec as he

> developed this

> > wonderful

> > drug, but Iâ€™m sure there are patients of his who

> have gone on to Sprycel

> > and

> > Tasigna due to the side effects of Glivec.

> >

> > Regards,

> >

> > from Down Under

> >

> > #1149 Zavies Zero Club

> >

> > Dx: 25/07/07

> >

> > Commenced Glivec 400mg 27/9/07

> >

> > Changed to Tasigna 800mg 3/8/08

> >

> > PCRs:

> >

> > 23/01/08 - 13.01 %

> >

> > 14/04/08 - 0.08 %

> >

> > 12/05/08 - 0.02% (Glivec 200mg)

> >

> > 06/08/08 - 0.09 % (commenced Tasigna)

> >

> > 30/09/08 - 0.18 %

> >

> > 19/12/08 - 0.00%

> >

> > Waiting for March result

> >

> > From:

> <%40> [mailto:

> >

> <%40>] On Behalf Of

> > Sent: Sunday, 26 April 2009 9:33 AM

> >

> <%40>

> > 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.

> >

April 26, 2009

Skip

Wow!!! Have you had a rough ride!!!!!

Thanks for your post.

I hope things get better for you soon.

I care

Sharon

_____

From: [mailto: ] On Behalf Of Skip

Duffie

Sent: Sunday, April 26, 2009 8:46 AM

Subject: Re: [ ] hello everyone from a MAJOR lurker