| Posttrial prognostic awareness |
“I stopped treatment there because I had progression of disease so I was, you know, taken out.” “The trial stopped working.” “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.” “So, he said we’re at a balancing thing here that, you know, we’re not controlling the disease and we’re not giving you the drugs that we could give you to help you feel better, so therefore, you know…and my recommendation is, you know, go off the trial, and I agreed. You know?”
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| Where the patient is now |
“I’m doing reasonably well. I left the [hospital] study because I had a recurrence. And so obviously, I’m not doing great, but I’m doing reasonably well.” “So now I’m in a hospital bed and I can’t walk, even with…even with a walker.” “Um, the first two therapies, the one that was the trial failed and the one after that, I found out yesterday, also failed.” “Horrible right now.” “So unfortunately, it was, uh…it was beyond the scope of the clinical trial, essentially within a 20 percent increase and, uh, it’s not much. It’s only like about two millimeters or something, but still it’s…the threshold is 20 percent, so they had to take me out of that trial, but I’m starting a new one on this Monday.” “So that’s where I’m at. Right now, I’m no longer in treatment. I am actually in hospice care right now.”
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| Regrets, hindsight, or should-haves |
“Well, since they removed me from the trial which incidentally, I did not agree with.” “You know, I no longer qualified, so in one respect, you know, that wasn’t…I had no choice.” “But, you know, the next six months of my…you know, I probably can’t fly the way I want to and travel the way I want to and…This is kind of messing the rest of my life up…I’m frustrated and angry, to be quite honest with you—because…this is not the summer the way I thought. Okay, I’m done my treatment. I’m gonna be fine. I was feeling good. And I started taking this stupid drug and all of a sudden, you know, I’ve had the reaction and now the PEs, and now the next six months or whatever, it’s gonna be I have to stay on blood thinners and…you know, I can’t go back to karate. Like all the things that make me sane, I can’t do.” “So, you know, there was some kind of…maybe had I not gone onto the study and maybe had I gone onto a medication that they knew had certain…you know. It was all that kind of thoughts in my mind regarding it, but we don’t know. It was a good, um…thought-out process for me to be in the study [inaudible]. So consequently, you know, we did what we thought was best at the time.”
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| Urgency to start next treatment |
“And, ‘cause that’s the criteria they use and that’s the way it turned out unfortunately. But, so then we immediately started talking about, uh…about other options and began as always. He said I want straight chemo. Um, this trial that I’m going to go in, which by the way, doesn’t even have a name yet. There just a number. It’s like [Name], something or other. It’s like a seven-digit number.” “But we’re trying for another one. If that doesn’t work, we’ll try another one. We’ll keep going till we get it right.”
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| Goals of care discussions |
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| Decision to enroll or other options |
“I didn’t participate in it because I was this clean-cut American that wanted to contribute to all cancer research. I mean, that was a side benefit. I was happy to do that, but I was on it mainly for selfish reasons is because they had no approved drugs for me that were left. That’s why Doctor [Name] put me on me a trial.” “They saved my life the first time. My thoughts were, they’ll save my life a second time…And I have more at stake now ‘cause I have two kids, you know?...So now it’s even more important that I’m okay.” “That’s what put me into the clinical trial, so yeah, that is what kept me in the clinical trial, too, is that, you know, we were hoping that it would be the drug that we needed to unlock the key.”
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| Living with cancer |
“So, there were numerous CAT scans, and so those ups and downs are difficult. You know, you hope for the best and that sort of thing. So…you know, that’s just part of…part of living with cancer.”
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| The odds of effectiveness or survival and trade-offs |
“There’s risks, I understand that…but it’s acceptable risk. It’s worth the, uh…when you balance…I guess like the doctors do, they balance, you know, the good part against the risk. And it’s the right thing to do and I try not to think too much about the downside.” “I mean when you have one lung and you’re seventy-eight years old, you grab at the straws. That’s the way I feel. If there’s a chance, I’m going to do it.” “The type of cancer I have, the only cure is a bone marrow transplant and it’s a 40 percent chance that it might work and the rest is that it either comes back or it kills you.” “I would weigh it in the same respect as I weighed this one. Okay? What are the statistical chances of success? If there is any success, what are the benefits, remission or slowing of the progression of the disease and what not? What are the potential side effects, what not, so there are side effects? I wanted to take all of those into consideration, disruption of your life. When doing this other trial, you know when you go up there, you’d be up there 12 hours.”
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| Not just a number |
“My whole thought process with having cancer is I will…I am open for anything as long as it will give me more time. As long as I didn’t have severe—very severe—pain, and I want to be around and help anyone else that I can. And what’s the best decision for me as an individual, and, uh, the decision we came to was the right one. And that spills over into the way Dr. [Name] is and all…I really feel that they’re looking at me. I don’t feel like a number.”
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| Emotional coping |
“A 70 percent reduction. I was elated. I was happy. I had no side effects, and I couldn’t have been happier. My Doctor [Name] 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 percent reduction and I had no side effects and no nodes that I could feel. They were all so small that they were internal type things that you couldn’t feel.” “Yes, I was scared because I also knew that I was no longer gonna be part of the clinical trial. But I just didn’t know what it meant for me at that time.”
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| Disappointment |
“I haven’t gotten back to feeling good and normal…since [CCT withdrawal]. So, you know, that didn’t make me feel good. But the other side is, okay, but, you know, hopefully…this was my one chance to maybe prevent the lymphoma from coming back and now that option’s off the table. So now I have to deal with…if it comes back, I gotta deal with whatever…do chemo or whatever the heck the next step is if this does come back. So, I guess my safety net is gone. I don’t have that. So that’s kind of disappointing that if there was an option…to potentially keep this from coming back, that’s probably gone.”
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| Support system |
“I’ve really been blessed. I mean, that’s really the best way I can put it, I just feel like I’m so fortunate, and I thank god that I have the team around me and family, friends, the social network.”
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| Burden of adverse effects |
“No, [CCT withdrawal] wasn’t a hard thing because, you know, not being able to breathe, it really takes you aback, you know. You sit there and even though you’re just sitting, you’re trying to catch your breath, knowing that the drug caused this. It was not a difficult decision.” “And for this particular trial—and I know this is not true for most clinical trials—the new technology that I was talking to you about could be considered to be torturous in nature. It invoked tremendous pain and it was a characteristic of the treatment, and therefore I could see people who had other issues with the trial dropping out, given that fact. I mean if you add in particularly a difficult treatment with administrative considerations and other things, I can see where people would drop out of the trial or might not recommend the trial to others.”
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| Professional trust and support |
“I truly am impressed, pleased, and even overwhelmed with the quality of care I got from [Hospital].” “I mean everybody from the guy who tells you to park to the doctor, the surgeons or whatever, they’re all on the same level. They’re very friendly and comforting, and they make you feel at ease there.” “I realize how busy these people are and…and it’s not that you’re a number, but you don’t have that particular closeness that you would have if you were speaking to your oncologist who had been seeing you for a while. You know?” “Sometimes [withdrawal] was just a shut off and don’t even worry about it. I think I got a little bit more of that from Dr. [Name], and I don’t mean to slam him. I deeply felt the highest regard for him when I first met him, but I just…as the times went down and more people got involved, I felt like he was not forthcoming with information.” “It just seems to me that had the drug people in their protocol been a little bit more open-minded and if that could be incorporated in some way, which is probably an impossibility because you’re dealing with so many drug companies and to try to get them all to do this is...it just seems like if they would be a little bit more open-minded to patient benefits as opposed strict protocol.”
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