Table 4.

Key themes by sample cohort and supporting participant quotations

Sample Cohort	Key Themes	Supporting Participant Quotations
Week 0	Trust in treating facility and medical staff	“I’m in the best place in the world to get treatment. I’m going to do what they recommend. I’m not going to be a Monday morning quarterback and try [to] become an expert on health and I’m not going to read and I’m not going to listen to anybody on the computer”
	Fear regarding starting ipilimumab and uncertainty regarding outcome	“I guess nobody knows, and the doctor’s as much as said, well, whether I, you know—and he answers my question about what are the odds of making this go away and so forth, and his answer I think was, ‘Wait till, wait till 12 weeks from now and we’ll talk about it.’ But, you know, that’s a wait and see, and an observation. I understand that.”
	Comfort with treatment timeline	“Um, I’m okay with it. I guess you know, 3 or 4 months doesn’t seem to worry me too much.”
		“As long as it’s [ipilimumab] going to work.”
Weeks 10–12	Experiencing symptom relief fostered hope in a positive outcome	Participant: “I’m gonna have one [scan] in 2 weeks. I’m sure that it’ll be good, because I feel good.”
		Interviewer: “You’re confident because you feel good?”
		Participant: “Very confident.”
		“I’m anxious to see after the last infusion, to see the next scan. Maybe it works, perhaps, the initial. But the one 4 weeks after that, we should know more definite position where the tumor is and if it’s shrunk, or got bigger. But we’re confident that—I’m sure it’s gotten better. Before my eye was twitching, I had—I’m talking November now, right, so its 8 months ago, before any kind of treatment, there was concerns. You know, losing eyesight—you know, with surgery. But there was those more effects before treatment, and now I don’t have the numbness or the constant rubbing of the eye. So I am, I’m hopeful, positive, that through all the treatments I’ve taken, and especially the ipilimumab, that it shrunk, the tumor has shrunk.”
	Balancing hopes for a positive outcome with knowledge that treatment could fail	“As far as the drug effect on myself, you know, I just, I wish there was more to read about it, and, you know, when you’re going this, a lot of its emotional. And some days I say with the ipilimumab, I’m going to beat this, and some days I wake up and say the ipilimumab’s not working and I’m going to die.”
		“How long it’s going to work, I don’t know. How long it’s going to keep it away, we don’t know. But you know what? I know that I’m feeling good today And…tomorrow is another day.”
	Comparing experience with ipilimumab to prior therapies	“I’ve had radiation. I’ve had surgery. I mean, given the choice, obviously this [ipilimumab] is the best of the three, because even when it has gone bad, I feel okay the next day…Radiation…was the worst I’d ever felt. I was curled up in the fetal position. I couldn’t move. I was in a lot of pain. I couldn’t eat. Couldn’t do anything. So the ipilimumab…is light years above having to go through a treatment like that.”
Week 12, no Progression	Cautious optimism regarding ipilimumab’s efficacy and hope for continued success	“This is wonderful. If this were 10 years ago, I think I would have a death sentence, and this gives me an opportunity, you know, wonderful, wonderful thing to let me live, potentially live, and actually become free from this, this horrible thing that happened to me.”
		“…you can’t expect good, good all the time…it’s good to hear good news but you always have to keep yourself open that it’s not always going to be good news.”
	Experience of minimal side effects and limited impact on quality of life	“I absolutely love it [ipilimumab]. I was very, very nervous because I was made aware of all the side effects and I had none of them.”
		“I would say go for it. My experience at least has been positive, certainly not negative. I have not had any side effects. It hasn’t really interfered with my quality of life.”
Week 12, Progression	High anxiety regarding future treatment success and ipilimumab’s value	“I really don’t know what the future holds, or…how long the future’s gonna be forme. And that’s…the biggest anxiety…its uncertainty It’s uncertainty. You know, of whether it’s, it’s, it’s gonna be effective or not, and if it is effective, how long, how long it will last. Will it, you know, could it be a complete remission? Will it—is it just slowing it down? I mean, it’s the uncertainty of those, those issues.”
		“I hope this—I didn’t expect the last one to show reductions, but I’m hoping this one will, so if it doesn’t, or if it shows it’s continuing to grow, then I’ll, then I’ll have concerns that the drug isn’t doing what it—what we hoped it would do…I’m hoping that it’s, it’s going to you know, send the cancer in both spots into remission and, and prevent it from spreading anywhere else. That’s my expectation.”
		“So far there hasn’t been much value…it [ipilimumab] works for some folks, it doesn’t for some other folks…but we just don’t know because we don’t know.”
	Experiencing minimal side effects led to positive views regarding the physical exposure of taking ipilimumab	“I was absolutely certain that I’d get some form of colitis, and the fact that that didn’t happen surprised me.”
		“I had no reactions at all…it was almost as if just water had been injected, because I had no side effects at all.”
	Mixed views regarding acceptance of time duration to see a treatment outcome	“If that’s how the drug works, then that is how it works.”
		Interviewer: “So throughout this treatment course then how have you felt about not knowing about whether the ipilimumab is working or not?”
		Participant: “I’ve been all right with it. I mean it’s just, you know, again, its part of the education. I understood that, you know, if you think of it simply, chemo kills the cancer, ipilimumab tries to get your body to stop the cancer, you know, and that’s just going to take longer than zapping it with something to kill it. So, you know, I think I had the expectation in my mind that, you know, I’m going on 6 months and, you know, we’ll see.”
		“The ipilimumab, the last treatment was 2 weeks ago, but it takes another 6–8 weeks for it to become fully effective, which is kind of a pain in the ass, or neck, but it is what it is.”