Re: Re: XL228

[Guest guest]

THANKS DON, I THINK I FORGOT YOU WERE FROM OHIO...SO GLAD YOU ARE DOING SO WELL,

SAY HELLO TO LUDEY, BLESSINGS, BOBBY

Don Adkins <donaldadkins@...> wrote: Hi Bobby,

From one buckeye to another, I just wanted to wish you the best of

luck. Ur tough as nails (just like Lottie) and I know you will do well!

Blessings,

Don

>

> 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

>

>

>

>

[Guest guest]

VERY INTERESTING, BARB, AND I THOUGHT IT WAS BECAUSE I WAS LYING ON MY STOMACH

SO LONG, IT BOTHERED MY NECK. I THOUGHT A NERVE MIGHT HAVE BEEN EFFECTED OR

SOMETHING, NEVER THOUGHT IT WOULD BE THE LIDOCAINE.

AND I HAVE ONE A MONTH NOW, TO LOOK FORWARD TO, WHOOPEE! THE BMB WAS A

SURPRISE, AS THE SPRYCEL TRIAL ONLY NEEDED A BMA. ALSO, I WAS TOLD, THIS DRUG

COMPANY WILL RE-IMBURSE US FOR SOME OF OUR HOTEL AND TRAVEL EXPENSES, THAT IS

ALSO A FIRST, AND VERY WELCOME. I WAS REALLY HOPING HE WOULD PUT ME ON TASIGNA

UNTIL THE ARIAD TRIAL STARTED, MAINLY BECAUSE IT IS A PILL AND NOT AN INFUSION.

WHAT EVER WORKS, IS GOOD FOR ME. HOPE YOU ARE DOING WELL, TAKE CARE, LOVE,

BOBBY

Barb Stanley <barbarastanley@...> wrote:

Hey Bobby

I had a horrible experience with a BMB BMA a year ago. The same thing

happened with me. They could not get a sample ( dry tap) and so they

ended up going to the other side. If you read up on lidocaine overdose

you will see what it does to the central nervous system: and it isn't

good. My best guess is that you had too much lidocaine at one setting.

I had the same symptoms and as well: siezures, shaking, drop in BP and

an IV that took about 30 minutes to bring me back to normal. My husbamd

had to come get me as I couldn't drive home ( 18 miles) and I was shakey

for about 24 hours. Lidocaine is a tough cookie to take.

Be well, good luck and let me know how it all goes.

Love

Barb

>

> 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

>

>

>

>

[Guest guest]

Well, do you suppose I had the reaction because she numbed both sides, therefore

used double the lidocaine? Or do I have to worry about it in the future? It

never happened before.

But one time at MDACC she gave me some extra, it served the purpose of no

pain, but when I got off the table, I had a numb leg and could not walk !!

Strangest feeling, but they just got me my wheel chair and called transportation

to get me out of there. But then I wasn't dizzy and could have walked,. if I

could have felt my leg. I'll ask her about this the next time, and one more

thing. Do you always have the procedure done on the same side?

My left side is the one that she had the dry tap, so she noted in the charts

to use the right side in the future. does it make a difference? Thanks, Bobby

missymel218 <g8trdoc81@...> wrote:

--Hey guys,

I to had the same experience with the lidocaine, they used 2%.

It is alittle stronger, then what is typically used. It was on the

one try but, I had the shakes so bad and dizziness. My mind was okay,

but I could not control my body. Took about an hour and some juice

and crackers. The Dr. said that it was a reaction to the lidocaine

and they will be prepared more for it in the future.

Oh well, what to do.

Mel

- In , " Barb Stanley " <barbarastanley@...> wrote:

>

>

> Hey Bobby

>

> I had a horrible experience with a BMB BMA a year ago. The same

thing

> happened with me. They could not get a sample ( dry tap) and so

they

> ended up going to the other side. If you read up on lidocaine

overdose

> you will see what it does to the central nervous system: and it

isn't

> good. My best guess is that you had too much lidocaine at one

setting.

> I had the same symptoms and as well: siezures, shaking, drop in BP

and

> an IV that took about 30 minutes to bring me back to normal. My

husbamd

> had to come get me as I couldn't drive home ( 18 miles) and I was

shakey

> for about 24 hours. Lidocaine is a tough cookie to take.

>

> Be well, good luck and let me know how it all goes.

>

> Love

>

> Barb

>

>

>

>

>

> >

> > 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

> >

> >

> >

> >