XL228

[Guest guest]

Hi Debra, XL228 is a trial drug, it's an infusion, it is given once a week if

labs are good, and it is at the U. of Mich, under Dr. Moshe Talpaz.  When I

needed the Sprycel trial, location was not the concern as much as being able to

get into the trial, and MDACC in Houston was a lot closer than the previous

three, which were in Portland, Oregon, with Dr. Druker.

I have been fortunate in that I was able to travel that often to be able to stay

in the trials.  But I like Ann Arbor.  MI real well, it's only about a 3

hr.drive from me. Technically I do not know what this drug does or how it works,

but it is working for me and that's the important thing.  I am in CCR, my qcpr

is .456 and I'm a happy camper.

If you contact Dr. Talpaz I'm sure he will answer you, I see Zavie provided you

with a whole list of the best in the business!  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)

 

>

> I listened and watched Dr. Druker. I am confused.. Glevec was not as

> wonderful as he makes it out to be. He is talking about the many that have

> benefited from it. I did not. I wish it was that easy. Glevec tore me apart.

> Inside and out. And when he talks about Glevec is he meaning all the other

> medications like sprycel and tasigna also???????

> ____________ _________

>

> Hi Sharon,

> Gleevec is an amazing drug.......the most successful new cancer drug ever!

> 90+% of newly diagnosed in chronic phase will go into a 'remission' and

> tolerate the drug with acceptable side effects. Before Gleevec, cml was

> mostly a fatal disease..... unless you survived a BMT. There is still a %

> that Gleevec does not work well for, or they do not tolerate the

> drug.....all these newer drugs would not even be here if it was not for

> Gleevec (they are the sons/daughters of Gleevec!)

>

> Gleevec kept me alive until a more potent drug came along. I was on Gleevec

> (mostly 800mg) for over 5 years....I have now been on Sprycel for 3 years

> and this drug brought me to CCR.....but I still would not say that Gleevec

> was not a great drug (even though it was not the complete answer for me).

> There are very few drugs that have the success rate that Gleevec has....and

> it is still considered to be front line treatment for cml.

>

> You can combat many of the side effects and other problems related to

> taking a drug like this long term by working with a naturopath and

> complementary medical care. Much of this is not in the realm of traditional

> medicine or your local oncolgist. Dr. Druker is my primary onc and he has

> no problem at all with me working with a naturopath and running her

> suggestions by him and his pharmacist.. ...and the alternative care has been

> beneficial.

>

> Some people do struggle more than others to find the best treatment for

> themselves.. ..we have 2 such cml warriors on this list.....Bobbie and

> Lottie....but their fighting spirit will keep them with us. The goal (per

> Rockefeller, a fellow cmler) is to die from something other than

> cml!!

> C.

>

>

--

Marcos Perreau Guimaraes

Suppes Brain Lab

Ventura Hall - CSLI

Stanford University

220 Panama street

Stanford CA 94305-4101

650 614 2305

650 630 5015 (cell)

marcospgcsli (DOT) stanford. edu

montereyunderwater@ gmail.com

www.stanford. edu/~marcospg/

[Guest guest]

HI, JUST GOT BACK FROM ANN ARBOR, HAD THE INFUSION, WOW, IT WAS AN EARLY

APPOINTMENT, AND WENT FAST, I WAS OUT OF THERE BY 12:30, ERNIE PICKED ME UP AND

WE PICKED UP LEN AND WENT OUT TO LUNCH.  IT WAS GREAT SEEING BOTH OF THEM 

AGAIN,  NEXT WEEK, EVEN IF MY LABS ARE LOW AND I DON'T GET INFUSED, I HAVE TO GO

BECAUSE IT IS THE BEGINNING OF A NEW CYCLE  IN THE TRIAL, AND CALLS FOR A BMA,

XRAY, ETC. AND A VISIT WITH DR. TALAZ.  TRIAL NURSE SAID THE DRUG COMPANY HAD

WANTED THEM TO CHANGE MY DOSE, LOWER IT, AND THAT WAY I WOULD GET AN INFUSION

EVERY WEEK.  THEY TALKED THEM OUT OF IT, BUT FOR SOME REASON THEY PREFER I GET A

WEEKLY INFUSION INSTEAD OF DOING IT AS THE LABS ARE GOOD,.  I SAY IF IT AIN'T

BROKE DON'T FIX IT, AND RIGHT NOW I AM DOING VERY WELL ON THIS SCHEDULE, GET

INFUSED ONLY IF THE LABS ARE GOOD.  WILL KEEP YOU POSTED ON THE BMA RESULTS. 

BOBBU

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)

 

[Guest guest]

Good Luck Bobby.

Eva

From: ROBERTA DOYLE

Sent: Monday, January 26, 2009 7:55 PM

Subject: [ ] XL228

I fear I may have celebrated to soon on stopping the XL trial. The trial nurse

called today and said the pcr test may have been inaccurate, as the fish shows

00 and I am still CCR. She said I can stay in the trial if I want, or I can

stop it, Dr. T. said it was up to me. I told her I would do what Dr. T said,

but I really preferred to try Tasigna. I do not like driving every week to Ann

ARbor, it cost me about $100 a week. I also don't like the weird side effects.

But if he thinks it is best, I will stay on it. You can't beat CCR. ... 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)