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Old 07-14-2006, 09:27 AM   #1
Patty H
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Location: Indiana
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anyone get tykerb yet, on extended program?

I was just wondering if anyone got tykerb yet? I know there were a couple of ladies who's Drs. had the paper work ready and faxed in on the first open day, I believe was June 12th. My Dr. has called them but we are still waiting. Was wondreing how long it will take. Patty H
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Old 07-14-2006, 12:31 PM   #2
Sherryg683
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My Oncologist said that he is just waiting to get the drug in, haven't gotten it yet. He has 2 ladies that need it desperately and they have been approved for it, it's just taking time..sherryg683
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Old 07-14-2006, 03:30 PM   #3
fcrcm
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Lightbulb

Should we be getting our doctors to have the paper work filled out and ready to go? I have been on Herceptin 7 months( liver and boe), now w yet another bone met so I think my Herceptin days are numbered. If it takes a while to get Tykerb, shouldn't he be ordering it NOW? (I can't be the only one in his practice who needs it.)

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Old 07-14-2006, 06:08 PM   #4
IRENE FROM TAMPA
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I am also waiting

I found a doctor (actually my first onc) who is applying to have Tykerb w/Xeloda in their office. He is in Tampa so that will work out great for me. My other option is in Gainsville which is about 2-3 hrs away. Their study is Tykerb with or without Herceptin.

The one in Tampa has just sent back their paperwork to GlaxoSmithkline so I am not quite sure how long it will take them to get up an running.

I am also anxious since I have been off of chemo for 4 weeks now and my tumors are growing. I just don't want to jeaprodize getting into this study but don't know how long I can wait. I called Glaxo today to ask and they told me no one in Florida has been opened up as far as she could see but to check back next week.

Come Monday I will check again with my oncs office to see what they have heard. I am sure I will become a pest to them before this gets started but hey.....

Good luck to you.
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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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Old 07-14-2006, 07:23 PM   #5
Sandy H
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I am one of those that my oncologist had the paperwork ready to fax on June 12th. Today, the nurse told me its waiting for the group at the hospital(don't remember what they are called) to approve it and they don't meet until September!!! I told her that is not going to work. She said he is trying to get it done on line. I will see him next Friday and hopefully, he will tell me if it can be done or not on line. They may not be happy with me next Friday all depends what I hear. He is very good and I am sure he will get it done. I will keep you updated. hugs, Sandy
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Old 07-15-2006, 06:06 AM   #6
Patty H
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This is all of our concerns. We who need this tykerb, are afraid to go to long without any treatment. My Dr. doesn't want to start me on anything else just in case it would keep me from getting the tykerb at this time. My pet scan in Dec. was clear on my hip. But just 6 months later I have a 2.2 cm. leision on this hip. So I know how fast this can grow for me. I have had chemo 8 differnt times and radiation 4 different times. I'm ready for something new. Please let us know when anyone gets this on the extended program. Patty H
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Old 07-15-2006, 10:36 AM   #7
Pamela B
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My doctor was told two weeks and that was 7-13-06
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Dx October 3 2000 Stage 3B High grade IDC, 12cm, ER+,PR+,HER2+++
2A/C, surgery(conservation and reduction),2A/C
30 something Rads
Nodes just one positive by mapping
Tamoxifan May 2001
Bone Met to neck C-5 vert, broke neck, surgery to decompress and radiation, Lupron 9-11-2001
Bone mets to rest of spine March 2002, Taxol , Zometa, Herceptin and Femera,
Stem Cell Transplant November 2002
Recurrance again Bones and now brain July 2003
Choose not to treat 3 small brain mets
Taxol, Herceptin, Zometa, Faslodex, and still lupron
Rising markers and pain September 2004 Aromasin Navelbine
Still rising markers and pain Jan 05 Taxotere
Gamma Knife to one brain met July 05
Horrible toxic overload of taxotere Jan 06
Chemo holiday till April 06 Gemzar so-so response
Tykerb is next Herceptin and Zometa weekly and Q3
Still have two very small slow growing brain mets and bones are still active but stable
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