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Sharon:

I have been on 800 mg as a standard dose from the beginning

and while it takes some adjustments, my PCR has been undetectable

after 60 days on that dosage.

I know that my doctor is studying the efficacy of lowering the dose to

600 mg after after you reach PCRU, but he is not willing to recommend

it or allow me to lower the dosage.

Matt

Florida

In a message dated 6/24/2008 8:18:56 P.M. Eastern Daylight Time,

onthewtr@... writes:

I am so so dissapointed. I have been on Tasigna for 113 days with

absolutely no side effects except a little weight gain.

IMy PCR was 0.011 113 days ago before i started Tasigna. I had been on

Sprycel but had to go off because of PE. Well I just got my results of

my latest PCR and it was 0.032 so the Dr. wants to increase my

medication. I am ow taking 400 a day and he wanted to go to 800mg a

day. I talked him into 600 a day. what do you think???? I am just so

dissapointed. I have never felt so well, strong and healthy in 5 years.

Why is this happening???Why is this happening???<WBR>While on Sprycel

off it. Please let me know y our thoughts.oh mylog reduction is 2.111

it was 2.575 before.

Sharon T

**************Gas prices getting you down? Search AOL Autos for

fuel-efficient used cars.

(http://autos.aol.com/used?ncid=aolaut00050000000007)

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Sharon,

PCR values can fluctuate up and down. Mine always do. It is very likely

that your next test will show your levels lower than your first test.

Try not to worry. Let your doctors continue to monitor you and feel

well. Enjoy feeling well adn don't get too caught up in the numbers.

They do go up and down and over the years fussing about the minor

variations can drive you nuts! Hang in there. I am sure it's just a

blip!

Hugs!

Genie Dx 2,2000

on 800mg Gleevec daily

>

> I am so so dissapointed. I have been on Tasigna for 113 days with

> absolutely no side effects except a little weight gain.

> IMy PCR was 0.011 113 days ago before i started Tasigna. I had been

on

> Sprycel but had to go off because of PE. Well I just got my results

of

> my latest PCR and it was 0.032 so the Dr. wants to increase my

> medication. I am ow taking 400 a day and he wanted to go to 800mg a

> day. I talked him into 600 a day. what do you think???? I am just so

> dissapointed. I have never felt so well, strong and healthy in 5

years.

> Why is this happening???While on Sprycel I was PCRU until I had to go

> off it. Please let me know y our thoughts.oh mylog reduction is 2.111

> it was 2.575 before.

> Sharon T

>

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Hi Sharon,

I'm not sure what the fuss is here. To me, your results look very

stable. There is at least a half log variation due to the margin of

error with PCR results and your two results are within that margin of

error.

I understand how you would want to be at a 3 log reduction so you may

in deed benefit from the increase in dose but I certainly wouldn't

panic over these results.

Take care,

Tracey

>

> I am so so dissapointed. I have been on Tasigna for 113 days with

> absolutely no side effects except a little weight gain.

> IMy PCR was 0.011 113 days ago before i started Tasigna. I had

been on

> Sprycel but had to go off because of PE. Well I just got my results

of

> my latest PCR and it was 0.032 so the Dr. wants to increase my

> medication. I am ow taking 400 a day and he wanted to go to 800mg a

> day. I talked him into 600 a day. what do you think???? I am just

so

> dissapointed. I have never felt so well, strong and healthy in 5

years.

> Why is this happening???While on Sprycel I was PCRU until I had to

go

> off it. Please let me know y our thoughts.oh mylog reduction is

2.111

> it was 2.575 before.

> Sharon T

>

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Dear Genie and Tracey

Already I feel better. It just gets me down. I don't even want to go on

600mg. I am so afraid of side effects. I had my share with gleevec and then

sprycel. But we will see. I am going away for 6 days to be with my two

sisters whom I have not seen in4 year and we are meeting in Palm Springs. I

was so looking forward to a O% so I could celebrate but what the heck I am

still going to celebrate feeling good. I asked the dr. if I could start the

600mg when I got back and he said sure!!! So that is what I am doing.

Thank you so much.

I love all of you so so much

Sharon T

_____

From: [mailto: ] On Behalf Of Tracey

Sent: Tuesday, June 24, 2008 5:33 PM

Subject: [ ] Re: my PCR

Hi Sharon,

I'm not sure what the fuss is here. To me, your results look very

stable. There is at least a half log variation due to the margin of

error with PCR results and your two results are within that margin of

error.

I understand how you would want to be at a 3 log reduction so you may

in deed benefit from the increase in dose but I certainly wouldn't

panic over these results.

Take care,

Tracey

>

> I am so so dissapointed. I have been on Tasigna for 113 days with

> absolutely no side effects except a little weight gain.

> IMy PCR was 0.011 113 days ago before i started Tasigna. I had

been on

> Sprycel but had to go off because of PE. Well I just got my results

of

> my latest PCR and it was 0.032 so the Dr. wants to increase my

> medication. I am ow taking 400 a day and he wanted to go to 800mg a

> day. I talked him into 600 a day. what do you think???? I am just

so

> dissapointed. I have never felt so well, strong and healthy in 5

years.

> Why is this happening???While on Sprycel I was PCRU until I had to

go

> off it. Please let me know y our thoughts.oh mylog reduction is

2.111

> it was 2.575 before.

> Sharon T

>

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Sharon

if you do need to go on 600 or 800 mg, I am wondering if since your body

is used to the tasigna, maybe it won't react so strongly as someone who

would go on the full 800 at the beginning.

At any rate, I would agree with Tracey. The stats are no reason for

panic...

Be well,

Barb in AZ

> >

> > I am so so dissapointed. I have been on Tasigna for 113 days with

> > absolutely no side effects except a little weight gain.

> > IMy PCR was 0.011 113 days ago before i started Tasigna. I had

> been on

> > Sprycel but had to go off because of PE. Well I just got my results

> of

> > my latest PCR and it was 0.032 so the Dr. wants to increase my

> > medication. I am ow taking 400 a day and he wanted to go to 800mg a

> > day. I talked him into 600 a day. what do you think???? I am just

> so

> > dissapointed. I have never felt so well, strong and healthy in 5

> years.

> > Why is this happening???While on Sprycel I was PCRU until I had to

> go

> > off it. Please let me know y our thoughts.oh mylog reduction is

> 2.111

> > it was 2.575 before.

> > Sharon T

> >

>

>

>

>

>

>

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Dear Sharon,

Please don't get hung up on the zero, very few of us are actually

zero. A good goal to have is a 3 log reduction but PCRU or zero on a

PCR may be an unrealistic and unnecessary goal.

Enjoy your time with your sisters!

Tracey

> >

> > I am so so dissapointed. I have been on Tasigna for 113 days with

> > absolutely no side effects except a little weight gain.

> > IMy PCR was 0.011 113 days ago before i started Tasigna. I had

> been on

> > Sprycel but had to go off because of PE. Well I just got my

results

> of

> > my latest PCR and it was 0.032 so the Dr. wants to increase my

> > medication. I am ow taking 400 a day and he wanted to go to 800mg

a

> > day. I talked him into 600 a day. what do you think???? I am just

> so

> > dissapointed. I have never felt so well, strong and healthy in 5

> years.

> > Why is this happening???While on Sprycel I was PCRU until I had

to

> go

> > off it. Please let me know y our thoughts.oh mylog reduction is

> 2.111

> > it was 2.575 before.

> > Sharon T

> >

>

>

>

>

>

>

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Barb

What do you mean? That maybe it would take my body longer to get into PCRU

with 400???

Do you think I should increase it to 600 or 800?

Sharon T

_____

From: [mailto: ] On Behalf Of Barb

Stanley

Sent: Tuesday, June 24, 2008 6:14 PM

Subject: [ ] Re: my PCR

Sharon

if you do need to go on 600 or 800 mg, I am wondering if since your body

is used to the tasigna, maybe it won't react so strongly as someone who

would go on the full 800 at the beginning.

At any rate, I would agree with Tracey. The stats are no reason for

panic...

Be well,

Barb in AZ

> >

> > I am so so dissapointed. I have been on Tasigna for 113 days with

> > absolutely no side effects except a little weight gain.

> > IMy PCR was 0.011 113 days ago before i started Tasigna. I had

> been on

> > Sprycel but had to go off because of PE. Well I just got my results

> of

> > my latest PCR and it was 0.032 so the Dr. wants to increase my

> > medication. I am ow taking 400 a day and he wanted to go to 800mg a

> > day. I talked him into 600 a day. what do you think???? I am just

> so

> > dissapointed. I have never felt so well, strong and healthy in 5

> years.

> > Why is this happening???While on Sprycel I was PCRU until I had to

> go

> > off it. Please let me know y our thoughts.oh mylog reduction is

> 2.111

> > it was 2.575 before.

> > Sharon T

> >

>

>

>

>

>

>

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Thanks Tracey. I guess it is because while I was on Sprycell I was at 0 for

a long time.I was on Sprycel for three years. Maybe it is just going to

take longer I did not like the word the Dr. used. He said they were afraid

to keep me on 400mg because they were afraid of me becoming resistant to

the medication.

Sharon T

_____

From: [mailto: ] On Behalf Of Tracey

Sent: Tuesday, June 24, 2008 6:16 PM

Subject: [ ] Re: my PCR

Dear Sharon,

Please don't get hung up on the zero, very few of us are actually

zero. A good goal to have is a 3 log reduction but PCRU or zero on a

PCR may be an unrealistic and unnecessary goal.

Enjoy your time with your sisters!

Tracey

> >

> > I am so so dissapointed. I have been on Tasigna for 113 days with

> > absolutely no side effects except a little weight gain.

> > IMy PCR was 0.011 113 days ago before i started Tasigna. I had

> been on

> > Sprycel but had to go off because of PE. Well I just got my

results

> of

> > my latest PCR and it was 0.032 so the Dr. wants to increase my

> > medication. I am ow taking 400 a day and he wanted to go to 800mg

a

> > day. I talked him into 600 a day. what do you think???? I am just

> so

> > dissapointed. I have never felt so well, strong and healthy in 5

> years.

> > Why is this happening???While on Sprycel I was PCRU until I had

to

> go

> > off it. Please let me know y our thoughts.oh mylog reduction is

> 2.111

> > it was 2.575 before.

> > Sharon T

> >

>

>

>

>

>

>

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And Matt are your side effects bad? I know we chatted before. I may have to

go up to 800 but for now we will try 600. Hope that works.

Thanks Matt for the support.

Sharon

_____

From: [mailto: ] On Behalf Of

mtmaynor@...

Sent: Tuesday, June 24, 2008 8:17 PM

Subject: Re: [ ] my PCR

Sharon:

I have been on 800 mg as a standard dose from the beginning

and while it takes some adjustments, my PCR has been undetectable

after 60 days on that dosage.

I know that my doctor is studying the efficacy of lowering the dose to

600 mg after after you reach PCRU, but he is not willing to recommend

it or allow me to lower the dosage.

Matt

Florida

In a message dated 6/24/2008 8:18:56 P.M. Eastern Daylight Time,

onthewtrdiscobay (DOT) <mailto:onthewtr%40discobay.net> net writes:

I am so so dissapointed. I have been on Tasigna for 113 days with

absolutely no side effects except a little weight gain.

IMy PCR was 0.011 113 days ago before i started Tasigna. I had been on

Sprycel but had to go off because of PE. Well I just got my results of

my latest PCR and it was 0.032 so the Dr. wants to increase my

medication. I am ow taking 400 a day and he wanted to go to 800mg a

day. I talked him into 600 a day. what do you think???? I am just so

dissapointed. I have never felt so well, strong and healthy in 5 years.

Why is this happening???Why is this happening???<WBR>While on Sprycel

off it. Please let me know y our thoughts.oh mylog reduction is 2.111

it was 2.575 before.

Sharon T

**************Gas prices getting you down? Search AOL Autos for

fuel-efficient used cars. (http://autos.

<http://autos.aol.com/used?ncid=aolaut00050000000007>

aol.com/used?ncid=aolaut00050000000007)

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Sharon:

My side effects are nothing like they were on Gleevec. On Gleevec,

I had a lot of GI issues, which have disappeared while on Tasigna. I

do have some constipation, but that is alleviated with twice daily

rounds of Metamucil. And while there is the occassional bone pain

and fatigue, they are much less than before.

Like most drugs, it does take a period of time to get used to it.

Matt

Florida

In a message dated 6/25/2008 2:28:37 A.M. Eastern Daylight Time,

onthewtr@... writes:

And Matt are your side effects bad? I know we chatted before. I may have to

go up to 800 but for now we will try 600. Hope that works.

Thanks Matt for the support.

Sharon

**************Gas prices getting you down? Search AOL Autos for

fuel-efficient used cars.

(http://autos.aol.com/used?ncid=aolaut00050000000007)

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Sharon,

Sorry for the confusion. I can see how you thought that. I was

responding to your fear of greater side effects. I meant that if you

have to increase the tasigna, your body is already used to the drug. It

would be my hope that the side effects would not jump out at you and

increase in intensity. I did not mean to refer to the PCRU. I have no

idea about how long it would take you. I began on tasigna Dec. 27- 2007.

They started me at 800 mg. Within two weeks I had to go off because of

severe side effects. I took a 5 day break, then went back on at 400. I

had some slight side effects for about two weeks and now, I have NONE.

So I was hoping that if you need to increase, and do it slowly, maybe

the side effects will not be so severe. My best wishes to you as your

and your onc try your best for dosage. And of course, I wish PCRU for

you and everyone.

Be well dear Sharon, my fellow tasi buddy!!

Barb in AZ

> > >

> > > I am so so dissapointed. I have been on Tasigna for 113 days with

> > > absolutely no side effects except a little weight gain.

> > > IMy PCR was 0.011 113 days ago before i started Tasigna. I had

> > been on

> > > Sprycel but had to go off because of PE. Well I just got my

results

> > of

> > > my latest PCR and it was 0.032 so the Dr. wants to increase my

> > > medication. I am ow taking 400 a day and he wanted to go to 800mg

a

> > > day. I talked him into 600 a day. what do you think???? I am just

> > so

> > > dissapointed. I have never felt so well, strong and healthy in 5

> > years.

> > > Why is this happening???While on Sprycel I was PCRU until I had to

> > go

> > > off it. Please let me know y our thoughts.oh mylog reduction is

> > 2.111

> > > it was 2.575 before.

> > > Sharon T

> > >

> >

> >

> >

> >

> >

> >

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Thank you Barb in AZ

You are very helpful.

Yes I am hoping that taking another 200 wont bother me too much.

I will keep in touch.

Sharon T

_____

From: [mailto: ] On Behalf Of Barb

Stanley

Sent: Wednesday, June 25, 2008 6:01 AM

Subject: [ ] Re: my PCR

Sharon,

Sorry for the confusion. I can see how you thought that. I was

responding to your fear of greater side effects. I meant that if you

have to increase the tasigna, your body is already used to the drug. It

would be my hope that the side effects would not jump out at you and

increase in intensity. I did not mean to refer to the PCRU. I have no

idea about how long it would take you. I began on tasigna Dec. 27- 2007.

They started me at 800 mg. Within two weeks I had to go off because of

severe side effects. I took a 5 day break, then went back on at 400. I

had some slight side effects for about two weeks and now, I have NONE.

So I was hoping that if you need to increase, and do it slowly, maybe

the side effects will not be so severe. My best wishes to you as your

and your onc try your best for dosage. And of course, I wish PCRU for

you and everyone.

Be well dear Sharon, my fellow tasi buddy!!

Barb in AZ

> > >

> > > I am so so dissapointed. I have been on Tasigna for 113 days with

> > > absolutely no side effects except a little weight gain.

> > > IMy PCR was 0.011 113 days ago before i started Tasigna. I had

> > been on

> > > Sprycel but had to go off because of PE. Well I just got my

results

> > of

> > > my latest PCR and it was 0.032 so the Dr. wants to increase my

> > > medication. I am ow taking 400 a day and he wanted to go to 800mg

a

> > > day. I talked him into 600 a day. what do you think???? I am just

> > so

> > > dissapointed. I have never felt so well, strong and healthy in 5

> > years.

> > > Why is this happening???While on Sprycel I was PCRU until I had to

> > go

> > > off it. Please let me know y our thoughts.oh mylog reduction is

> > 2.111

> > > it was 2.575 before.

> > > Sharon T

> > >

> >

> >

> >

> >

> >

> >

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Yes Matt that is why I am so afraid of side effects. Mine were horrible on

Gleevec ant then later on on Sprycel. I totally understand the problem with

the GI issues. Mine were terrible on Glevec and Sprycel and I just had to

adjust. But Constipation has never been a problem for me-never so maybe it

wont do that to me.

And bone pain? I can live with.

Thanks Matt and I will keep in touch.

Sharon

_____

From: [mailto: ] On Behalf Of

mtmaynor@...

Sent: Wednesday, June 25, 2008 6:13 AM

Subject: Re: [ ] my PCR

Sharon:

My side effects are nothing like they were on Gleevec. On Gleevec,

I had a lot of GI issues, which have disappeared while on Tasigna. I

do have some constipation, but that is alleviated with twice daily

rounds of Metamucil. And while there is the occassional bone pain

and fatigue, they are much less than before.

Like most drugs, it does take a period of time to get used to it.

Matt

Florida

In a message dated 6/25/2008 2:28:37 A.M. Eastern Daylight Time,

onthewtrdiscobay (DOT) <mailto:onthewtr%40discobay.net> net writes:

And Matt are your side effects bad? I know we chatted before. I may have to

go up to 800 but for now we will try 600. Hope that works.

Thanks Matt for the support.

Sharon

**************Gas prices getting you down? Search AOL Autos for

fuel-efficient used cars. (http://autos.

<http://autos.aol.com/used?ncid=aolaut00050000000007>

aol.com/used?ncid=aolaut00050000000007)

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