I've been mulling something over all day, so I have decided to ask my blog readers for feedback.
I got a text from my awesome CF doctor today. He told me that my latest culture came back positive MAC. For 5 months I have been on a clinical trial for Arikace, an inhaled antibiotic to treat resistant MAC, in hopes of getting my MAC infection under control. I have appointments, including cultures, monthly to monitor my progress. In December and January my cultures were free of the MAC infection and I was hopeful that I finally found something that worked. Today I found out that even if the Arikace was helping at one time, it is no longer doing the trick. I wasn't surprised, because my lungs have been having a rough time for the past month or two. My doctor said that I can go off of the Arikace if I choose.
He's my quandary... I am 5 months into this 6 month clinical trial. If I withdraw from the trial, none of my information will be able to be used in the final trial results. I have spent many, many hours at appointments and doing the required treatments for this trial at home. The coordinators at my hospital have spent countless hours offering this trial. I am the only one at my center enrolled in this trial. My lung function has been constantly declining for the past few months. I have no idea if this is due to the study drug or just CF in general.
So, with one month left should I withdraw from the trial since it is no longer providing me benefit and MAY actually be making me worse. Or should I stick it out. I am lined up to start the Kalydeco trial in Pittsburgh 30 days after I finish the Arikace trial. If I withdraw a month earlier, I will be able to start Kalydeco a month early.
I'm leaning toward seeing through my commitment with this current trial, just because I think it's important to follow through with commitments. However, I feel like I might feel better physically faster if I quit.
What would you do and why?
