Table 2. Patient-Participant–Stated Reason for Withdrawal, With Illustrative Quotations.

Reason	Decided by	Quotation
Progression of disease (n = 13)	Clinical trial protocol	“But unfortunately, after six months I had a tumor that decided it was going to grow through my chest wall.” “Other that the fact it wasn’t working for me? That was…it wasn’t… according to him, the sharp increase in the white blood cells was semi-critical enough that he put me in the hospital for four days.” “I stopped treatment there because I had progression of disease, so I was, you know, taken out.” “Unfortunately, developing metastasis in the bone made me no longer eligible for the clinical trial.” “I had no side effects, and I couldn’t have been happier. My doctor was very happy. Then what happened was I had a scan and the scan came back saying that I had one or two new nodes that were somewhat active in my neck, as I recall. The protocol of the trial says any new nodes, you know, you come off the trial. Well, that’s where the protocol of the trial and the patient benefit collided because I’m obviously benefiting if their own records show that I had a 70% reduction and I had no side effects and no nodes that I could feel.”
Adverse effects (n = 5)	Physician (2 oncologists and 1 neurologist)	“It was a matter of let’s stop this now because it’s only gonna get worse. And the interesting part about this was even though it inflamed my lungs, um, the oncologist said it was working…that’s why we…I withdrew and everybody like came to the consensus that it was best…At that specific time he said let’s leave the door open like for…you know, may be down the road you’d want to, you know, start this again.” “I went for the neurologist follow-up in two weeks she said ‘I’m sorry, you can no longer take that medicine.’”
	1 Patient decision and 1 joint decision	“When I saw the doctor, I said I’m getting off of it…Their face went wide open, like, why you getting off of it?” “Uh, no, it was me. I was like, I’m never taking that drug again [laughing]. No, no. Actually, but he [oncologist]…yeah, he absolutely agreed. He’s like, absolutely you’re not going to take it again.”
Acute illness (n = 1)	Clinical trial protocol (antibiotic was contraindicated)	“Um…[mumbling] um…no, I, um…I’m trying to think back that far…What I did with that. Um…what did I stop it for? What did I stop it for? Maybe it was because…yeah, I had to go in the hospital. I had an ear infection…really serious ear infection and my ear drum…ear drum burst or whatever.”
Uncertain (n = 1)	Researcher	“I mean they don’t tell you why you were taken off. They just took you off. So [inaudible] a clinical trial…all the people were on…‘cause we’re only given numbers, no names or anything. And, uh, we were just taken off it, so I just assume it didn’t work.”