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Shell · 10-05-2005, 05:29 AM

Hi Hope-

I cut and paste your questions so I wouldn't forget them. Here are my thoughts...

Where you scared to go on a clinical trial?
-The concept can seem scary, but I viewed it as a chance to be at the forefront to receive new treatments that might help me...

What made you decide to go on a clinical trial?
-The treatment my doctor recommended for was xeloda. I saw a Phase III clinical trial that used xeloda, and a drug being tested, lapatinib, that is potentially able to work on those of us who have failed herceptin. No local hospitals offer the trial, so I travel about 1 1/2 hours to participate in the trial.

What phase? Dr. Pegram said that right now at UCLA I only qualify for phase I/II
-This phase III trial is designed for stage IV patients without brain mets.

Did you have any complications?
-No. I am in the arm getting only the xeloda, so it is the same treatment I would have been getting had I stayed with my regular onc for it. The selection was randrom, and when they learned I didn't get in the arm w/ the xeloda and the lapatnib, some assumed I would skip the trial. But I want to see people enrolled in it, to complete it, to see if it works. The more of us who join the trials in that regard, the sooner some of these successful drugs will be available for use....

I've had side effects from the xeloda, but I would have had them regardless, as that would have been my treatment anyway.

How long were you on a clinical trial?
-I felt the progression in March, and it took several months for the scans, etc. to be read, and for me to learn about the trial. The difficult part was getting all of my records together for a new doctor/hospital. But everyone was very helpful, and I started at the end of June.

I'm still on it, and get scans every six weeks or so.

If you stopped being on trial why?
-I'm still on it...

If you are still on a trial, how long have you been on it and is it working?
-Since June, and my scans have shown progress to date...

Those on a phase III trial were you ever told that all phase III trials are blind studies and generally for first line treatment and not metastatic disease?
-Mine is random, not blind. That means that I knew ahead of time that I was not getting the study drug. Each trial may have different goals and objectives. Should this Phase III trial work on those of us with mets, presumably down the road it would also be considered for early stage as well...

Good luck with your decision...

Kind regards,
Shell

10-05-2005, 05:29 AM	#3
Shell Senior Member Join Date: Sep 2005 Location: Philadelphia Posts: 301	Hi Hope- I cut and paste your questions so I wouldn't forget them. Here are my thoughts... Where you scared to go on a clinical trial? -The concept can seem scary, but I viewed it as a chance to be at the forefront to receive new treatments that might help me... What made you decide to go on a clinical trial? -The treatment my doctor recommended for was xeloda. I saw a Phase III clinical trial that used xeloda, and a drug being tested, lapatinib, that is potentially able to work on those of us who have failed herceptin. No local hospitals offer the trial, so I travel about 1 1/2 hours to participate in the trial. What phase? Dr. Pegram said that right now at UCLA I only qualify for phase I/II -This phase III trial is designed for stage IV patients without brain mets. Did you have any complications? -No. I am in the arm getting only the xeloda, so it is the same treatment I would have been getting had I stayed with my regular onc for it. The selection was randrom, and when they learned I didn't get in the arm w/ the xeloda and the lapatnib, some assumed I would skip the trial. But I want to see people enrolled in it, to complete it, to see if it works. The more of us who join the trials in that regard, the sooner some of these successful drugs will be available for use.... I've had side effects from the xeloda, but I would have had them regardless, as that would have been my treatment anyway. How long were you on a clinical trial? -I felt the progression in March, and it took several months for the scans, etc. to be read, and for me to learn about the trial. The difficult part was getting all of my records together for a new doctor/hospital. But everyone was very helpful, and I started at the end of June. I'm still on it, and get scans every six weeks or so. If you stopped being on trial why? -I'm still on it... If you are still on a trial, how long have you been on it and is it working? -Since June, and my scans have shown progress to date... Those on a phase III trial were you ever told that all phase III trials are blind studies and generally for first line treatment and not metastatic disease? -Mine is random, not blind. That means that I knew ahead of time that I was not getting the study drug. Each trial may have different goals and objectives. Should this Phase III trial work on those of us with mets, presumably down the road it would also be considered for early stage as well... Good luck with your decision... Kind regards, Shell