Re: from your major lurker

[Guest guest]

Dear

I hope that my words did not upset you. I am sorry if they did.

When you get to be my age (66) you want the best QOL you can get. You want

to enjoy life, you want to enjoy your family and grandkids (I too have 13).

When I was on Gleevec I could not do anything. I looked terrible, felt

terrible, lost 25 lbs, (that part I liked) could not go anywhere.slept all

the time. Then on Sprycel I still was not doing well. Better but not like I

am now. My doctor decided that the PE was a very dangerous thing for me and

the lymph node problems, and so many stomach problems, was not worth staying

on it. Tasigna has been wonderful to me. I only hope and pray that it lasts

for another 20 years or so. If not there is something else in the pipeline

or I can go back to Sprycel. Reaching PCRU was not a problem on any of the

meds. But now I am PCRU at a 5 log reduction and I feel great. NORMAL! I am

watched very very carefully by my doctor and cancer pharmacist.

And I thank the power above for all of this.

Sharon

_____

From: [mailto: ] On Behalf Of

Sent: Sunday, April 26, 2009 7:41 AM

Subject: [ ] from your major lurker

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]

,

That is why I do not post often either, so do not sweat it. This support

group is suppose to be about sharing information and helping each other. It

just seems nowadays that some that have been lucky enough to not have as bad

a time as others, do not like seeing certain types of posts, or are very

judgmental. It has gotten worse with the new additions in the medications

for the treatment of CML. Some do not get the fact that what works for them

may not work for others. What I find curious is why people do not question

why the new medications are being pushed so hard. But to each their own.

I saw nothing in your post that warranted such replies, but again like I

found out when I posted about the dental issues I am having do to my CML

treatment, most were trying to be helpful, when others seemed to just be

down right vicious. So that is why I am mainly a lurker and do not post much

myself. God only knows what sort of replies I would get if I really poured

my heart out. So hang in there, I understood what you were trying to do.

Terry

On Sun, Apr 26, 2009 at 10:41 AM, <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]

I am glad you are here to talk about it too .

Thank you ; Eva

From:

Sent: Sunday, April 26, 2009 10:41 AM

Subject: [ ] from your major lurker

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]

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]

Sharon S

Being in bed for 6 days a week is NOT a good QOL!!!!!

If that were me I would insist my Dr. switch me to something else.

Sharon

_____

From: [mailto: ] On Behalf Of

serenitywon

Sent: Sunday, April 26, 2009 11:28 AM

Subject: [ ] Re: from your major lurker

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 groups (DOT) <mailto:%40> com, " "

<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]

Sharon,

I am only 41 and I also want QOL.I want to enjoy my " youth " lol..Side effects

from Gleevec keep me pretty much bed ridden 5-6 days a week.What is my qol? I

know I should be thankful to be alive but sometimes I get down and think why

does one simply want to exsist like this? It's not living,it's exsisting..I

always told my family if I was ever comatos and there were no signs of me having

a complete recovery then pull the plug as I don't want to just be there in

person exsisting but NOT living..I still feel the same thing..If bed ridden 6

days a week is the BEST qol I can have well then...I think it my be tie to

switch meds and give something else a shot.I may have better QOL and not want to

pull the plug..

Thanks

SharonS

In , " Sharon Teichera " <onthewtr@...> wrote:

>

> Dear

>

> I hope that my words did not upset you. I am sorry if they did.

>

> When you get to be my age (66) you want the best QOL you can get. You want

> to enjoy life, you want to enjoy your family and grandkids (I too have 13).

>

> When I was on Gleevec I could not do anything. I looked terrible, felt

> terrible, lost 25 lbs, (that part I liked) could not go anywhere.slept all

> the time. Then on Sprycel I still was not doing well. Better but not like I

> am now. My doctor decided that the PE was a very dangerous thing for me and

> the lymph node problems, and so many stomach problems, was not worth staying

> on it. Tasigna has been wonderful to me. I only hope and pray that it lasts

> for another 20 years or so. If not there is something else in the pipeline

> or I can go back to Sprycel. Reaching PCRU was not a problem on any of the

> meds. But now I am PCRU at a 5 log reduction and I feel great. NORMAL! I am

> watched very very carefully by my doctor and cancer pharmacist.

>

> And I thank the power above for all of this.

>

> Sharon

>

>

>

> _____

>

> From: [mailto: ] On Behalf Of

> Sent: Sunday, April 26, 2009 7:41 AM

>

> Subject: [ ] from your major lurker

>

>

>

>

>

>

>

>

> 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]

Please please please get another doctors opinion or insist you switch.

I am 66 and I feel wonderful. My QOL is perfect. You need to get better. I

would say (unless there are circumstances I do not know about) get off

Gleevec.

Keep me posted please.

Sharon

_____

From: [mailto: ] On Behalf Of

serenitywon

Sent: Sunday, April 26, 2009 11:38 AM

Subject: Re: [ ] from your major lurker

Sharon,

I am only 41 and I also want QOL.I want to enjoy my " youth " lol..Side effects

from Gleevec keep me pretty much bed ridden 5-6 days a week.What is my qol?

I know I should be thankful to be alive but sometimes I get down and think

why does one simply want to exsist like this? It's not living,it's

exsisting..I always told my family if I was ever comatos and there were no

signs of me having a complete recovery then pull the plug as I don't want to

just be there in person exsisting but NOT living..I still feel the same

thing..If bed ridden 6 days a week is the BEST qol I can have well then...I

think it my be tie to switch meds and give something else a shot.I may have

better QOL and not want to pull the plug..

Thanks

SharonS

In groups (DOT) <mailto:%40> com, " Sharon Teichera "

<onthewtr@...> wrote:

>

> Dear

>

> I hope that my words did not upset you. I am sorry if they did.

>

> When you get to be my age (66) you want the best QOL you can get. You want

> to enjoy life, you want to enjoy your family and grandkids (I too have

13).

>

> When I was on Gleevec I could not do anything. I looked terrible, felt

> terrible, lost 25 lbs, (that part I liked) could not go anywhere.slept all

> the time. Then on Sprycel I still was not doing well. Better but not like

I

> am now. My doctor decided that the PE was a very dangerous thing for me

and

> the lymph node problems, and so many stomach problems, was not worth

staying

> on it. Tasigna has been wonderful to me. I only hope and pray that it

lasts

> for another 20 years or so. If not there is something else in the pipeline

> or I can go back to Sprycel. Reaching PCRU was not a problem on any of the

> meds. But now I am PCRU at a 5 log reduction and I feel great. NORMAL! I

am

> watched very very carefully by my doctor and cancer pharmacist.

>

> And I thank the power above for all of this.

>

> Sharon

>

>

>

> _____

>

> From: groups (DOT) <mailto:%40> com

[mailto:groups (DOT) <mailto:%40> com] On Behalf Of

> Sent: Sunday, April 26, 2009 7:41 AM

> groups (DOT) <mailto:%40> com

> Subject: [ ] from your major lurker

>

>

>

>

>

>

>

>

> 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]

Hi Sharon,

I am just 1 year older and I hear you there. As there are people

reading us that were dxed not long ago I am going to make a distiction

between early treatment up to CCR (when it goes well) and cruise

regime after that. From my experience and what I read (or talked) with

pretty much all others, its normal to have strog to debilitating side

effects in the few first months. The bone/muscle/joint pain affected

most of us in the few first weeks but it went away for most. here were

days I couldn't walk at all. The 3-6 first months are all about

getting into CCR, as during that time the chances the disease

progresses to accelerated or blast phases are a lot greater that in

CCR. Once you reach CCR you can take a big breath and think about

resuming a normal life, or better , and taking into account quality

of life in treatment decisions is sensible. Outdoors activities like

diving, hiking or mountaineering, have always been very important to

me and minimizing side effects is a big part in how I think about CML

now. About 2 years ago I was classified as having a suboptimal

response with 400mg/day of gleevec and there was some pressure to up

the dose to 600mg/day, but I was in CCR and the trend still slowly

downwards. I hesitated a bit, chated with people on this list and

decided the house wasn't burning yet, so I choose to stay at 400mg/day

as I don't think I would have been able to keep diving with the higher

dose. Two years later I am PCRU, still at 400mg/day. If I start

getting more side effects or start loosing the remission then I ll

consider other options with the drs. On a positive note I haven't felt

as fit as I feel this year since the mid 90s when things started going

downhill.

Marcos.

On Sun, Apr 26, 2009 at 11:37 AM, serenitywon <serenitywon@...> wrote:

>

>

> Sharon,

> I am only 41 and I also want QOL.I want to enjoy my " youth " lol..Side effects

> from Gleevec keep me pretty much bed ridden 5-6 days a week.What is my qol?

> I know I should be thankful to be alive but sometimes I get down and think

> why does one simply want to exsist like this? It's not living,it's

> exsisting..I always told my family if I was ever comatos and there were no

> signs of me having a complete recovery then pull the plug as I don't want to

> just be there in person exsisting but NOT living..I still feel the same

> thing..If bed ridden 6 days a week is the BEST qol I can have well then...I

> think it my be tie to switch meds and give something else a shot.I may have

> better QOL and not want to pull the plug..

> Thanks

> SharonS

>

> In , " Sharon Teichera " <onthewtr@...> wrote:

>>

>> Dear

>>

>> I hope that my words did not upset you. I am sorry if they did.

>>

>> When you get to be my age (66) you want the best QOL you can get. You want

>> to enjoy life, you want to enjoy your family and grandkids (I too have

>> 13).

>>

>> When I was on Gleevec I could not do anything. I looked terrible, felt

>> terrible, lost 25 lbs, (that part I liked) could not go anywhere.slept all

>> the time. Then on Sprycel I still was not doing well. Better but not like

>> I

>> am now. My doctor decided that the PE was a very dangerous thing for me

>> and

>> the lymph node problems, and so many stomach problems, was not worth

>> staying

>> on it. Tasigna has been wonderful to me. I only hope and pray that it

>> lasts

>> for another 20 years or so. If not there is something else in the pipeline

>> or I can go back to Sprycel. Reaching PCRU was not a problem on any of the

>> meds. But now I am PCRU at a 5 log reduction and I feel great. NORMAL! I

>> am

>> watched very very carefully by my doctor and cancer pharmacist.

>>

>> And I thank the power above for all of this.

>>

>> Sharon

>>

>>

>>

>> _____

>>

>> From: [mailto: ] On Behalf Of

>>

>> Sent: Sunday, April 26, 2009 7:41 AM

>>

>> Subject: [ ] from your major lurker

>>

>>

>>

>>

>>

>>

>>

>>

>> 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, that is excellent, Marcos.

From: montereyunderwater@...

Date: Sun, 26 Apr 2009 12:24:57 -0700

Subject: Re: [ ] from your major lurker

Hi Sharon,

I am just 1 year older and I hear you there. As there are people

reading us that were dxed not long ago I am going to make a distiction

between early treatment up to CCR (when it goes well) and cruise

regime after that. From my experience and what I read (or talked) with

pretty much all others, its normal to have strog to debilitating side

effects in the few first months. The bone/muscle/joint pain affected

most of us in the few first weeks but it went away for most. here were

days I couldn't walk at all. The 3-6 first months are all about

getting into CCR, as during that time the chances the disease

progresses to accelerated or blast phases are a lot greater that in

CCR. Once you reach CCR you can take a big breath and think about

resuming a normal life, or better , and taking into account quality

of life in treatment decisions is sensible. Outdoors activities like

diving, hiking or mountaineering, have always been very important to

me and minimizing side effects is a big part in how I think about CML

now. About 2 years ago I was classified as having a suboptimal

response with 400mg/day of gleevec and there was some pressure to up

the dose to 600mg/day, but I was in CCR and the trend still slowly

downwards. I hesitated a bit, chated with people on this list and

decided the house wasn't burning yet, so I choose to stay at 400mg/day

as I don't think I would have been able to keep diving with the higher

dose. Two years later I am PCRU, still at 400mg/day. If I start

getting more side effects or start loosing the remission then I ll

consider other options with the drs. On a positive note I haven't felt

as fit as I feel this year since the mid 90s when things started going

downhill.

Marcos.

On Sun, Apr 26, 2009 at 11:37 AM, serenitywon <serenitywon@...> wrote:

>

>

> Sharon,

> I am only 41 and I also want QOL.I want to enjoy my " youth " lol..Side effects

> from Gleevec keep me pretty much bed ridden 5-6 days a week.What is my qol?

> I know I should be thankful to be alive but sometimes I get down and think

> why does one simply want to exsist like this? It's not living,it's

> exsisting..I always told my family if I was ever comatos and there were no

> signs of me having a complete recovery then pull the plug as I don't want to

> just be there in person exsisting but NOT living..I still feel the same

> thing..If bed ridden 6 days a week is the BEST qol I can have well then...I

> think it my be tie to switch meds and give something else a shot.I may have

> better QOL and not want to pull the plug..

> Thanks

> SharonS

>

> In , " Sharon Teichera " <onthewtr@...> wrote:

>>

>> Dear

>>

>> I hope that my words did not upset you. I am sorry if they did.

>>

>> When you get to be my age (66) you want the best QOL you can get. You want

>> to enjoy life, you want to enjoy your family and grandkids (I too have

>> 13).

>>

>> When I was on Gleevec I could not do anything. I looked terrible, felt

>> terrible, lost 25 lbs, (that part I liked) could not go anywhere.slept all

>> the time. Then on Sprycel I still was not doing well. Better but not like

>> I

>> am now. My doctor decided that the PE was a very dangerous thing for me

>> and

>> the lymph node problems, and so many stomach problems, was not worth

>> staying

>> on it. Tasigna has been wonderful to me. I only hope and pray that it

>> lasts

>> for another 20 years or so. If not there is something else in the pipeline

>> or I can go back to Sprycel. Reaching PCRU was not a problem on any of the

>> meds. But now I am PCRU at a 5 log reduction and I feel great. NORMAL! I

>> am

>> watched very very carefully by my doctor and cancer pharmacist.

>>

>> And I thank the power above for all of this.

>>

>> Sharon

>>

>>

>>

>> _____

>>

>> From: [mailto: ] On Behalf Of

>>

>> Sent: Sunday, April 26, 2009 7:41 AM

>>

>> Subject: [ ] from your major lurker

>>

>>

>>

>>

>>

>>

>>

>>

>> 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]

Marcos,

Thanks you for your response.Next month will be one year on Gleevec.I did

have a very slight decrease in side effects when my dose was lowered to

400mg.Not much though.I have abdominal distress,Distended gut,look preggo on my

right front belly,pain,gas,bloat,Diahrea and constipation(never know how it's

going to go) may chit myself in my sleep,or not go for 10 days..I get

rashes,swelling(especially the face)can we say blow

fish..lol..Insomnia,headaches,fatigue,Extreme bone,muscle,joint pain.I ache all

over and feel like I have the flu.I have very low blood pressure,light headed

and dizzy often.I tend to have a low grade fever,I have something like

flushing.I get chills and feel cold to the bone usually my right arm/hand

only(hands are different temps completely when you hold my hand).I am vit

D,A,iron,protein Deficient(these come and go).I am tested complete labs(17-22

vials) every 6 months.

I do have other health issus besides CML.These may be related to my other

issues as well.I have leaky heart

valves,Diabetis,Gastritis,IBS,Diverticulosis,Insomnia,terrible back/spine

issues,congenita hip dysplasia.I have had gastric bypass surgery and Lapband

surgery,C-section and Gall Bladder removal.

I take medications for all those conditions listed above.I take M.s. Contin

and Norco,lasix,Januvia,Byetta,Singular,Protonix,Lunesta,Amitiza and then the

slew of Herbal vitamins for all my deficiencies.I also do Whey protein shakes

for my protein defic.I am lactose intolerant..No milk products for me.

So as you can see I have alot of issues and take alot of stuff..I may have

missed a few things in here.I don't know what is caused by what and what isn't

But I have it all and still try to live the best I can.Physical activity is a

joke..lol..Showering is as physical as I get.That's a good day.

This past week has really been the exception and I hope it continues.I was

only in bed 2 full days and 5 partial days.I am very pleased to know others are

doing wonderful things like camping,hiking,walking etc.It isn't in my plans.I

live vicariously through others.I hope that things improve but did want to give

Gleevec a fair amount of time to see if things improve.

Oh..Forgot I have Neuropothy..

Anyways..I love reading your posts about the exciting this you do even after

CML.Keep living the best life you can.

SharonS Sorry for the novel..lol

- In , Marcos Perreau Guimaraes <montereyunderwater@...>

wrote:

>

> Hi Sharon,

> I am just 1 year older and I hear you there. As there are people

> reading us that were dxed not long ago I am going to make a distiction

> between early treatment up to CCR (when it goes well) and cruise

> regime after that. From my experience and what I read (or talked) with

> pretty much all others, its normal to have strog to debilitating side

> effects in the few first months. The bone/muscle/joint pain affected

> most of us in the few first weeks but it went away for most. here were

> days I couldn't walk at all. The 3-6 first months are all about

> getting into CCR, as during that time the chances the disease

> progresses to accelerated or blast phases are a lot greater that in

> CCR. Once you reach CCR you can take a big breath and think about

> resuming a normal life, or better , and taking into account quality

> of life in treatment decisions is sensible. Outdoors activities like

> diving, hiking or mountaineering, have always been very important to

> me and minimizing side effects is a big part in how I think about CML

> now. About 2 years ago I was classified as having a suboptimal

> response with 400mg/day of gleevec and there was some pressure to up

> the dose to 600mg/day, but I was in CCR and the trend still slowly

> downwards. I hesitated a bit, chated with people on this list and

> decided the house wasn't burning yet, so I choose to stay at 400mg/day

> as I don't think I would have been able to keep diving with the higher

> dose. Two years later I am PCRU, still at 400mg/day. If I start

> getting more side effects or start loosing the remission then I ll

> consider other options with the drs. On a positive note I haven't felt

> as fit as I feel this year since the mid 90s when things started going

> downhill.

> Marcos.

>

>