Re: Ariad Trial 3 month BMB results

[Guest guest]

HI BETH, THAT IS GREAT.  I AM DOING WELL, BUT HAVE BEEN ANEMIC FOR A LONG TIME,

WAY BEFORE ARIAD.  MY HGB TODAY IS 8.8 SO WILL BE HAVING A TRANSFUSION SOME TIME

THIS WEEK.,  PLTS ARE 196, WBC IS 6.2, NEUTS 4.6.  I FEEL FABULOUS, EVEN THE LOW

HGB IS NOT BOTHERING ME, IN FACT IT MAKES ME SLEEP LIKE A BABY.  I HAVE NOT HAD

THE RESULTS OF THE LAST BMA YET, WILL KEEP EVERYONE POSTED WHEN I DO.  I LOVE

THIS DRUG, WANT TO STAY ON IT FOREVER.  AND FOR YOU, I HOPE IT CERTAINLY  WORKS

RATHER THAN A TRANSPLANT.  BLESSINGS, 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)

02/13/09 - XL trial ended due to side effects

04/13/09 - New Trial, Ariad / U. of Mich./ Dr. Talpaz

 

From: bethgalliart@... <bethgalliart@...>

Subject: [ ] Ariad Trial 3 month BMB results

" " < >

Date: Monday, September 14, 2009, 2:28 PM

 

Hi all,

I've been silent on the list for awhile, but thought I'd post my three month

results. The biopsy showed 2 out of 20 cells still leukemic, compared to 13 out

of 20 three months ago. Dr. Shah said it could be considered a major cytogenic

response. Very very exciting. I'm going to continue on the study drug and defer

transplant altogether for now.

My blood work has been absolutely normal the past six weeks and I've been

feeling great. In fact, I went on an 11 mile training walk this am....

How is everyone else on the trial doing? I'd love to hear how everyone else is

doing...

Beth

[Guest guest]

Thanks Bobby! I'm so sorry to hear about your anemia continuing to be a problem.

If I remember correctly, Jackie has some issues with that as well. I know that

my RBC counts were a little low the first six weeks or so, but they have

stabilized.

I agree with you--I want to stay on this drug forever! Transplant is definitely

off the table for now...and I hope it continues that way forever! And, I look

forward to joining Zavie's Zero Club very, very soon! :-)

Beth

[ ] Ariad Trial 3 month BMB results

" " < >

Date: Monday, September 14, 2009, 2:28 PM

 

Hi all,

I've been silent on the list for awhile, but thought I'd post my three month

results. The biopsy showed 2 out of 20 cells still leukemic, compared to 13 out

of 20 three months ago. Dr. Shah said it could be considered a major cytogenic

response. Very very exciting. I'm going to continue on the study drug and defer

transplant altogether for now.

My blood work has been absolutely normal the past six weeks and I've been

feeling great. In fact, I went on an 11 mile training walk this am....

How is everyone else on the trial doing? I'd love to hear how everyone else is

doing...

Beth

[Guest guest]

THE PROCRIT SHOTS USED TO HANDLE THE ANEMIA VERY WELL TIL SOME JERK DECIDED

MEDICARE WOULD NOT PAY FOR THEM ANYMORE, DEPENDING ON THE STATE YOU LIVE IN.  I

COULD GET THEM AT THE U OF MICH FOR A LONG TIME, THEN THEY SENT A LETTER SAYING

I WOULD HAVE TO PAY 1700 A SHOT.  SO NOW I GET TRANSFUSIONS, THAT COST ABOUT

3700.00, AND I USUALLY HAVE TO GET ONE ABOUT EVERY 6 MONTHS.  I TAKE 975 MG

FERROUS SULPHATE (IRON) A DAY, AND DID NOT NOTICE UNTIL TODAY, IT SAYS DO NOT

TAKE ALL AT ONCE, TAKW AT LEAST 2 HRS. APART.  I WOULD THINK SOMEONE WOULD HAVE

TOLD ME THAT, ON THE OTHER HAND, GUESS I SHOULD HAVE READ THE FERY FINE PRINT 

SOONER.  NOW I WILL DO 3, AT 3 DIFFERENT TIMES.  SEE IF IT HELPS.

I LOVED SPRYCEL WHEN I WAS ON IT TOO, FOR 1 1/2 YEARS, THEN PLEURAL EFFUSION

DEVELOPED AND I HAD TO STOP IT.  SO I AM PRAYING EVERY DAY THAT THIS IS " THE "

DRUG,   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)

02/13/09 - XL trial ended due to side effects

04/13/09 - New Trial, Ariad / U. of Mich./ Dr. Talpaz

 

From: bethgalliart@... <bethgalliart@...>

Subject: Re: [ ] Ariad Trial 3 month BMB results

Date: Monday, September 14, 2009, 3:13 PM

 

Thanks Bobby! I'm so sorry to hear about your anemia continuing to be a problem.

If I remember correctly, Jackie has some issues with that as well. I know that

my RBC counts were a little low the first six weeks or so, but they have

stabilized.

I agree with you--I want to stay on this drug forever! Transplant is definitely

off the table for now...and I hope it continues that way forever! And, I look

forward to joining Zavie's Zero Club very, very soon! :-)

Beth

[ ] Ariad Trial 3 month BMB results

" " < groups (DOT) com >

Date: Monday, September 14, 2009, 2:28 PM

 

Hi all,

I've been silent on the list for awhile, but thought I'd post my three month

results. The biopsy showed 2 out of 20 cells still leukemic, compared to 13 out

of 20 three months ago. Dr. Shah said it could be considered a major cytogenic

response. Very very exciting. I'm going to continue on the study drug and defer

transplant altogether for now.

My blood work has been absolutely normal the past six weeks and I've been

feeling great. In fact, I went on an 11 mile training walk this am....

How is everyone else on the trial doing? I'd love to hear how everyone else is

doing...

Beth