Important re Tykerb alone in Adjuvant setting

[cecw]

Sandra,
thank you for your concern. I am being seen by the doc who enrolled me in the Allto trail and by specialist from IU med center.All I keep getting are mugas and some blood draws because they are part of the trail.I have been very uncomfortable with no scans but they both tell me they are not needed and would be just more stress. Now I feel like I don't know who to turn to or what to do. I guess I'll call both of them tomorrow and be a lot more demanding. I don't understand why I haven't been notified about the trial concerns. I've done all follow ups my last one was May next one is scheduled for Dec

[Estelle]

CECW,

A scan would be "more stress"? Who are these people who think we do not have stress anyway??? I was not in the Altto study for long because of reaction to tykerb, but while I was in it, I was not being followed with scans on a regular basis. However, I was told if I had a persistent symptom, then I would get a scan. I quoted the letter I got, which advised that persons who had already finished the tykerb only arm should talk to their doc about getting herceptin. I believe you should insist on this. We go in trials to help out, if the trial has an unexpected result (tykerb not as effective) we should then get the standard treatment (herceptin). Don't wait for a letter. Tell you doc you have heard this -- I'm sorry I got rid of my letter after reading (since I've now had a year of herceptin) because if I had it I would fax or pdf you a copy.

Estelle