Curve Ball - 1st Day of Appointments for ABBY Trial

 You would think I would have learned this lesson by now, but apparently I have not. I was tossed a major curve ball when meeting with the ABBY clinical team today. First the clinical trial research coordinator and Fellow (student doctor) came in. The clinical trial research coordinator asked me if I had any questions which was fair. I asked my prepared questions and we continued. Next the Fellow asked me what I knew about the trial. Having read the consent and all other materials sent, I sat, with tall shoulders and a proud chest, and with all my confidence, told her what I knew. 

She then looked at me and said, "Are you aware you have to come back to Philadelphia every month for in in-person evaluation and to get your medications for this trial?" 

Meet Fear

And then sadness. I literally started to bawl. There I was, frantically text messaging my husband and sister, asking if we can even make this happen. My mom was sitting right beside me, but I couldn't verbalize my question to her. I was so overwhelmed.

Inside my brain, I started to get mad. Here I am, traveling the whole way from Alaska, and NO ONE thought to tell me that the requirement was for traveling back and forth once a month? Does that sound like a normal thing people do, even in the world of clinical trials? 

I quickly asked if this was in the consent. The clinical trial research coordinator and I spent a few minutes reviewing and agreed that this was not explicitly written. 

Now does that change my situation? No. But if they update it before enrolling others, maybe they can come in with two eyes wide open.

My adult self had to quickly snap back out of emotional mode and make a decision. Do I continue on with this trial or not?

 I didn't go through two bone marrow aspirates and find out I have DTCs, which increases my risk by 30%, just to do nothing. So I went on with the consent visit and labs today, and plan to proceed with Thursday's appointments which is when I will receive my trial medications.