Hello - this is a bit of a rant, but really we don't know what to do..
My mom has been the on the PD-1 trial for about 3 weeks. It is time for her 2nd evaluation and potentially infusion (if the trial doctor warrants it). However, as I wrote in a previous post. The doctor had admitted my mom to the hospital to help with pain management and we discovered shingles. The hospital is 1.5 hours from our home. She was admitted on Thursday, and came home last night (Wednesday) at 9pm via ambulance with 24 hour nurse care provided, b/c we had finally figured out the pain management.
We just got a call today notifying us that she needs to see the doctor for her second evaluation TOMORROW. The doctor's office is 1.5 hours away (across the street from the hospital we were just at). During the time my mom was in the hospital this trial doctor did NOT visit at all. My mom was taken care of, by the admitting / rotating doctors and the in patient palliative care doctors. These were the doctors that suggested we go home. The trial doctor could have stopped by anytime to evaluate her on Wednesday night, or requested us to stay overnight until today - and then evaluate today. But, he didn't do any of that. Instead, when we called him, while we were at the hospital - he said, he could push back the 2nd infusion a week. We didn't realize that we would need to drive 1.5 hours to see him again for him to make that decision. He will not accept a nurse's evaluation. He will not let us web cam for the evaluation.
Pretty much we feel threatened - no one has actually said it, but the implication is: if we don't show up tomorrow, we will be kicked out of the trial. REALLY!? Is this how trials work? Should we call an ambulance to take our mom back to see him tomorrow? Or should we drive her? But, there must be a reason the ambulance was assigned to take us home just last night vs. us driving ourselves? Help! What should we do?
Reply # - October 24, 2013, 10:46 PM
Reply To: Difficult Trial Doctor – What to do?
It's not possible for any of us who aren't directly involved to tell us the specifics of the trial and whether she can/should continue on the study. Unfortunately, it's quite common for there to be a significant gulf between the inpatient and the outpatient experiences these days, probably especially so in the larger, more academic centers, which are also the places most likely to have such trials available.
I'm sorry for the frustrating issues. I wish I had a clear answer or good alternative, but clinical trials often entail significant practical challenges.
-Dr. West