RE: Novartis Advisory Boar d- Tasigna Barb

[Guest guest]

Hi Barb

I would dearly love to know if anything is coming down the pipe

if Tasigna fails.  This is my second kick at tasigna and

not sure if this one fails what would be next.  I have tried

gleevec, Tasigna, Dasitinib, and back to Tasigna.  As most

of you, now on any one of these drugs, may have failure

and I am the one of the worlds longest survivor, it would do us all good to know

what is the next step. When first diagnosed no one lived

beyone the two three years except for a few like me.  now there

will be many many who will reach the 30++++ year mark

and need to have all the information available, so if you

do not mind please keep us informed.  I would love to

go to any of these meeting, but I am being transfused so

often a trip is just out of the question.

Thanks

SkipD

From: Barb Stanley <barbarastanley@...>

Subject: Re: [ ] Novartis Advisory Boar d- Tasigna

Date: Sunday, March 8, 2009, 10:54 AM

Thanks Suzzie. Would you have any questions about anything you want me to ask? I

plan a report back to the group when I return.

Barb

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> From: Barb Stanley <barbarastanley@ ...>

> Subject: [ ] Novartis Advisory Boar d- Tasigna

> groups (DOT) com

> Date: Saturday, March 7, 2009, 9:59 PM

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> Hello good CML Buddies.

> I recieved an invitation to attend a Patient Advisory Board or patients on

second line treatment for CML in Houston April 24-26. The invitation says they

pay air fare and room and board. They want to hear from patients about how to

identify educationl needs. I assume they got informtion from my oncologist --

that I was on tasigna.

> I have two requests for this group: #1 Did any of you taking tasigna get this?

Do you plan to go? and#2. What would you like me to communicate to the group in

this area? I plan to take them up on the offer.

> Blessings and good things to all us survivors...

> BARB

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[Guest guest]

Hi Skip

I have a question. Were you ever at PCRU on Tasigna?

I too am on Tasigna and worry about the same things you do. I was on

gleevec, then sprycel now Tasigna. But my failures were due to side affects

that I could not tolerate. What were y ours?

Aloha Sharon

Wow 30 years!!!

_____

From: [mailto: ] On Behalf Of Skip

Duffie

Sent: Sunday, March 08, 2009 9:12 AM

Subject: Re: [ ] Novartis Advisory Boar d- Tasigna Barb

Hi Barb

I would dearly love to know if anything is coming down the pipe

if Tasigna fails. This is my second kick at tasigna and

not sure if this one fails what would be next. I have tried

gleevec, Tasigna, Dasitinib, and back to Tasigna. As most

of you, now on any one of these drugs, may have failure

and I am the one of the worlds longest survivor, it would do us all good to

know

what is the next step. When first diagnosed no one lived

beyone the two three years except for a few like me. now there

will be many many who will reach the 30++++ year mark

and need to have all the information available, so if you

do not mind please keep us informed. I would love to

go to any of these meeting, but I am being transfused so

often a trip is just out of the question.

Thanks

SkipD

From: Barb Stanley <barbarastanley@ <mailto:barbarastanley%40cox.net>

cox.net>

Subject: Re: [ ] Novartis Advisory Boar d- Tasigna

groups (DOT) <mailto:%40> com

Date: Sunday, March 8, 2009, 10:54 AM

Thanks Suzzie. Would you have any questions about anything you want me to

ask? I plan a report back to the group when I return.

Barb

>

>

> From: Barb Stanley <barbarastanley@ ...>

> Subject: [ ] Novartis Advisory Boar d- Tasigna

> groups (DOT) com

> Date: Saturday, March 7, 2009, 9:59 PM

>

>

>

>

>

>

> Hello good CML Buddies.

> I recieved an invitation to attend a Patient Advisory Board or patients on

second line treatment for CML in Houston April 24-26. The invitation says

they pay air fare and room and board. They want to hear from patients about

how to identify educationl needs. I assume they got informtion from my

oncologist -- that I was on tasigna.

> I have two requests for this group: #1 Did any of you taking tasigna get

this? Do you plan to go? and#2. What would you like me to communicate to the

group in this area? I plan to take them up on the offer.

> Blessings and good things to all us survivors...

> BARB

>

>

>

>

>

>

>

>

>

>

>

>

>

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>

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[Guest guest]

Hi Sharon

I have never been PCRU on anything well I should qualifiy

that maybe I was on Myleran?? way back, but never on

any of these new drugs.  But no one would have know if

I were or were not, they did not have the PCR/ABL test or

the DNA tests they have today. The blood tests were

counted by a Tech counting by Microscope.  I remember

the first time they did have a machine to test my blood.

My blood put the machine in Tilt... yea it did, the screen

on the machine had 8 e's across it like EEEEEEEE. haha

they had to dilute my blood three or four time to get a count.

My failures were due to side effect as well Sharon

in fact some of the side effect were so severe they

put me in the hospital, especially Dasitinib.  in fact

Tasigna put me in the hospital with pancreas problems.

 

On the other hand I am back on Tasigna and seem to be

doing ok, there are minor side effect.. Like I still have some

PE, I do not feel well after first shot of 400 mg in the AM

but the last 200 at night seems to set well. So all and all

I am quite please about this course of treatment.

I hope I answer all your questions..

have a great day...

SkipD

Ceau mile Failtre. (100,000 welcomes to Nova Scotia)

From: Barb Stanley <barbarastanley@ <mailto:barbarastan ley%40cox. net>

cox.net>

Subject: Re: [ ] Novartis Advisory Boar d- Tasigna

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

Date: Sunday, March 8, 2009, 10:54 AM

Thanks Suzzie. Would you have any questions about anything you want me to

ask? I plan a report back to the group when I return.

Barb

>

>

> From: Barb Stanley <barbarastanley@ ...>

> Subject: [ ] Novartis Advisory Boar d- Tasigna

> groups (DOT) com

> Date: Saturday, March 7, 2009, 9:59 PM

>

>

>

>

>

>

> Hello good CML Buddies.

> I recieved an invitation to attend a Patient Advisory Board or patients on

second line treatment for CML in Houston April 24-26. The invitation says

they pay air fare and room and board. They want to hear from patients about

how to identify educationl needs. I assume they got informtion from my

oncologist -- that I was on tasigna.

> I have two requests for this group: #1 Did any of you taking tasigna get

this? Do you plan to go? and#2. What would you like me to communicate to the

group in this area? I plan to take them up on the offer.

> Blessings and good things to all us survivors...

> BARB

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

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