XL228

[Guest guest]

Good luck with the new trial Bobby. I hope you will help them find another

very successful drug. You are in great hands with Dr. Talpaz.

C.

[Guest guest]

HI EVERYONE, FIRST, THANKS FOR YOUR KIND WORDS, PRAYERS, BLESSINGS AND GOOD

THOUGHTS.

NOW FOR ANN ARBOR AND XL228. FIRST OF ALL ERNIE AND LEN AND I THOUGHT IT WAS

ODD THAT THEY MIGHT START ME ON A NEW DRUG WITHOUT BEING SURE I WAS OFF THE

PRESENT DRUG FOR A CERTAIN AMOUNT OF TIME. AND WE WERE SO RIGHT. I CANNOT

START IT UNTIL NEXT WEEK. BUT THAT'S OK, I DID THE LABS, EKG, URINE TEST, MORE

BLOOD, MORE URINE TEST, VISITED WITH DR. TALPAZ AND HAD THE STRANGEST BMB/BMA

EVER, AND I'VE HAD ABOUT 40. FOR SOME REASON, AFTER SHE NUMBED THE LEFT SIDE,

SHE COULD NOT GET A DRAW, AT ALL, AND WE DECIDED TO DO THE OTHER SIDE. THAT WAS

FINE, SHE GOT GREAT RESULTS, BUT ALL IN ALL I WAS ON MY STOMACH ONE WHOLE HOUR.

AND THAT , FOR SOME REASON, NUMBED MY NECK, MADE ME DIZZY AND I COULD HARDLY

WALK. IT WAS SO STRANGE, BUT DEAR SWEET ERNIE PUSHED ME OUT OF THERE IN A WHEEL

CHAIR. BY THE TIME WE GOT TO THE MOTEL, AND I HAD TWO CUPS OF STRONG COFFEE AND

A GIANT PIECE OFCHERRY PIE, I FELT GOOD ENOUGH TO DRIVE THE170 MILES HOME. SO,

HERE I AM UNTIL MON, TUES, AND WED, OF

NEXT WEEK, WHEN THEY WILL START ME ON DOUBLE WHATEVER LEN IS ON NOW.

I ASKED WHY I AM GOING ON THIS DRUG, DR. TALPAZ EXPLAINED MY PCR HAD DOUBLED,

AND HE WAS AFRAID IT MIGHT KEEP DOING SO, AND WHILE WAITING FOR THE ARIAD TRIAL

HE PREFERRED ME TO BE ON SOMETHING HE THOUGHT MIGHT CONTROL THE PCR BETTER THAN

THE SPRYCEL.

AFTER I START ON IT NEXT WEEK, I WILL HAVE TO DRIVE TO ANN ARBOR ONCE A WEEK,

THEY PREFER I HAVE THE INFUSION, AND SPEND THE NIGHT, TO BE SURE I AM THERE IN

CASE OF A REACTION. A FRIEND I MET IN HUSTON CAME OFF THE XL228 LAST WEEK, DUE

TO A REACTION THAT PUT HER IN EMERGENCY. BUT THEY THINK IT WAS DUE TO

PRE-EXISTING PROBLEMS, NOT THE DRUG ITSELF.

LEN IS LOOKING FABULOUS, SO FAR SHE HAS NO ADVERSE REACTIONS TO THE DRUG, AND

WE HAD A GREAT VISIT.

SO THAT'S IT FOR NOW, WILL KNOW MORE NEXT WEEK. HAPPY BIRTHDAY TO THOSE WITH

BIRTHDAYS, KUDOS TO THOSE WITH GOOD PCRS AND LABS, AND ABOUT ALCOHOL AND

SPRYCEL, IT GIVES ME ACID REFLUX, BUT I WAS ONLY ON 40 MG. A DAY, NOT 100. MOST

LIKELY BETTER TO LEAVE IT ALONE, BUT THAT ISN'T MUCH FUN.

AND LOTTIE? I FINALLY CAUGHT UP WITH YOU, TRIAL # 5 COMING UP, BUT WHO SAID

THIS WAS A RACE? I FEEL LIKE YOU, I HAVE BEEN ON BORROWED TIME FOR THE LAST 8

YEARS, AND TRUTHFULLY, I THINK THESE TRIALS ARE EXCITING. NEW PLACES, NEW

PEOPLE, AND A GREATER APPRECIATION OF LIFE, NOW I'M GETTING CORNY, NITE ALL,

LOVE, 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