Newbie, saying hello, with questions

[Guest guest]

Hello everyone, i am in need of your expertise. I have tried

gleevec,sprycel and tasigna. All eventually made my liver and pancreas

flare up. Does anyone know of new trials, such as XL 228. What is

that? Also what does one do with all the leftover meds. Someone should

be able to use them. They are so expensive and you can't just throw

them out. Also does anyone go to Siteman in ST Louis? I see Dr. Uy

Debra

02/04 Gleevec

04/05 BMS trial Sprycel

09/08 Tasigna 6 days liver/pancreas failure

[Guest guest]

> Hello everyone, i am in need of your expertise. I have tried

> gleevec,sprycel and tasigna. All eventually made my liver and pancreas

> flare up. Does anyone know of new trials, such as XL 228. What is

> that? Also what does one do with all the leftover meds. Someone should

> be able to use them. They are so expensive and you can't just throw

> them out. Also does anyone go to Siteman in ST Louis? I see Dr. Uy

> Debra

>

> 02/04 Gleevec

> 04/05 BMS trial Sprycel

> 09/08 Tasigna 6 days liver/pancreas failure

>

>

debra,i am interested in knowing how you knew that your pancreas flard up?

did it show in your blood tests or were you in some kind of pain? the

reason i ask is my blood tests showed a high reading in that area but went

down the next time and up again and down and now i am fine....my dr. says

that Tasigna causes those readings. let me kn

sharon

[Guest guest]

HI DEBRA, I HAVE GONE THROUGH ALL OF THEM TOO AND THEN SOME.  RIGHT NOW I GO TO

DR. TALPA AT THE U. OF MICH. CANCER CENTER AND I AM IN THE XL228 TRIAL.  IT IS

AN INFUSION, ONCE EVERY WEEK AND IT PUT ME BACK IN REMISSION WITH THE SECOND

INFUSION.  IF YOU WANT TO REACH THEM, LET ME KNOW,.  I AM NOT SURE WHAT TO TELL

YOU TO DO WITH YOUR LEFT OVER MEDS, SOMEONE CAN USE THEM I AM SURE, THEY WILL

GET IN TOUCH IF THEY HAVE ANY IDEAS.  GOOD LUCK, BOBBY

a (Bobby) Doyle

Brecksville, Ohio, USA

DX 05/1995

02/2000 - Gleevec Trial/OHSU

06/2002 - Gleevec/Trisenox Trial/OHSU

06/2003 - Gleevec/Zarnestra Trial/OHSU

04/2004 - Sprycel Trial/MDACC, CCR in 10 months

#840  -   Zavie's Zero Club

09/2006 -  out of CCR

04/29/08 - XL228 Trial/ U.of Michigan

06/02/08 - CCR ( in 4 weeks)

 

From: sharon teichera <onthewtr@...>

Subject: Re: [ ] Newbie, saying hello, with questions

Date: Monday, September 22, 2008, 8:26 PM

> Hello everyone, i am in need of your expertise. I have tried

> gleevec,sprycel and tasigna. All eventually made my liver and pancreas

> flare up. Does anyone know of new trials, such as XL 228. What is

> that? Also what does one do with all the leftover meds. Someone should

> be able to use them. They are so expensive and you can't just throw

> them out. Also does anyone go to Siteman in ST Louis? I see Dr. Uy

> Debra

>

> 02/04 Gleevec

> 04/05 BMS trial Sprycel

> 09/08 Tasigna 6 days liver/pancreas failure

>

>

debra,i am interested in knowing how you knew that your pancreas flard up?

did it show in your blood tests or were you in some kind of pain? the

reason i ask is my blood tests showed a high reading in that area but went

down the next time and up again and down and now i am fine....my dr. says

that Tasigna causes those readings. let me kn

sharon

[Guest guest]

>Hello Sharon, I knew it was my pancreas/liver because of previous

flare ups. Yes severe pain, high counts in th eamy lase and lipase

which suggested pancreas and liver tests alt/ast/sgot were

critically high that is why i have been hospitalized 3 times in 3

months. And at present time i am taking nothing to control leukemia

since june 1st. Makes me nervous about losing remission.Debra

>

>

>

> > Hello everyone, i am in need of your expertise. I have tried

> > gleevec,sprycel and tasigna. All eventually made my liver and

pancreas

> > flare up. Does anyone know of new trials, such as XL 228. What is

> > that? Also what does one do with all the leftover meds. Someone

should

> > be able to use them. They are so expensive and you can't just

throw

> > them out. Also does anyone go to Siteman in ST Louis? I see Dr.

Uy

> > Debra

> >

> > 02/04 Gleevec

> > 04/05 BMS trial Sprycel

> > 09/08 Tasigna 6 days liver/pancreas failure

> >

> >

> debra,i am interested in knowing how you knew that your pancreas

flard up?

> did it show in your blood tests or were you in some kind of pain?

the

> reason i ask is my blood tests showed a high reading in that area

but went

> down the next time and up again and down and now i am fine....my

dr. says

> that Tasigna causes those readings. let me kn

> sharon

>