anyone get tykerb yet, on extended program?

Patty H · 07-14-2006, 09:27 AM

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

Sherryg683 · 07-14-2006, 12:31 PM

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

fcrcm · 07-14-2006, 03:30 PM

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.)

fcrcm

IRENE FROM TAMPA · 07-14-2006, 06:08 PM

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.

Sandy H · 07-14-2006, 07:23 PM

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

Patty H · 07-15-2006, 06:06 AM

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