Lisa
I hope I am giving you the correct info, but this is what I was told -
There is an ongoing trial in Gainsville that I was trying to get on earlier in the year. It is Tykerb/Herceptin. I qualified for that trial (the critieria for these trials make it tough to get into at times) When I first spoke to the doctor in Gainsville, I had to have had my last treatment and failed and had progression while on Herceptin. I had not been on Herceptin for a year so I started on Taxol/carbo/Herceptin. After a couple of courses, my tumors still grew so we stopped. I was about to get into that trial when I heard of a doctor in Tampa, where I live was applying for the EAP (Tykerb/Xeloda). I decided since that was the one released at Asco I would "wait" for this office to be opened.
I was told if there was a facility with an ongoing trial with Tykerb within 3 miles from me, they wanted me to go there for the trial instead of the compassionate use. They even indicated that they mapped the distance by Map Quest and I was only 2 miles away. My doctors office argued the point that I work and this would be a hardship for me to make that drive weekly.
They approved it and gave me a waiver. This just adding to my fustrations.
Once my doctors office had all of their paperwork in and approved (do contact Joe if you run into trouble. He was a big help with his contact) things went a little smoother. there was alot of paperwork going back and forth between them.
I would check with your doctor to see at what stage of the paperwork they are in. One thing I did do before waiting was to try to be sure that I met all their criteria. If you haven't already done so, have your doctor give you a copy of what GSK requires, as one little thing could throw you off.
Good luck to you and all trying to qualify. I DO know how fustrated I was with the wait and I agree.
__________________
Irene from Tampa
1996 - INFILT DUCTAL CAR.W/ LYMPH NODE INVOLVEMENT. ADRIA/CYTOXIN/5FU
1999 - RECURR. TO AUXILA AND 2 TUMORS IN LIVER
TREAT: STEM CELL REPLACEMENT/HERCEPTIN.
2002 - RECUR TO LIVER
TREAT: NAVELBINE, THEN GEMZAR, THEN XELODA.
2004 - TUMORS STILL IN LIVER
TREAT: RFA TO LIVER
STABLE UNTIL
2004 - TUMOR PROGRESSION IN LIVER.
TREAT: RESECT HALF OF LIVER.
2005 - RECURR TO LYMPH NODE OUTSIDE OF LIVER.
TREAT: TAXOL/CARPO/HERCEPTIN. FAILED ON
THIS TRIO. STARTED ON ABRAXANE.
2006 - PROGRESS WITH 2ND TUMOR GROWTH.
TREAT: AUG. BEGAN ON TYKERB/XELODA
TRIAL. CONSIDERED STABLE TO DATE.
2007 - TAKEN OFF OF TYKERB/XELODA TRIAL DUE TO
PROGRESS STARTING TYKERB/AVASTIN.
NOV 2007 - SCANS SHOW PROGRESS TUMOR GROWTH
IN ABDOM. AND TWO NEW TUMORS IN NECK AREA.
BEGAN HERCEPTIN/AVASTIN/TAXOTERE
Feb 08 - Ixempra/Xeloda
June 08 - Her/DM1 trial
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY."
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