Table 2.
Participant Research Priorities
| Research Priority | Quote | Participant |
|---|---|---|
| Alternative Therapies | “Well I mean what I am more interested in would be something more with cannabis because I mean I think they need to look at that a little bit more than what they have been looking at it.” | Male, 39 |
| “I think I am very curious about what the new possibilities for therapies, immunotherapy and gene therapy and stuff, results for treatments like that in the cancer industry is the wave of the future. So I would be curious about that.” | Male, 49 | |
| “I mean, I just hope one day they find a cure other than chemotherapy.” | Female, 21 | |
| “New treatments or revisit the two that are the most current ones that I mentioned before and really make sure they are the best treatments for this type of lymphoma.” | Female, 72 | |
| “Kaiser had great support groups if you wanted to go to those. I think they do some of that too. Make that available.” | Male | |
| Source of Lymphoma | “Well I know that when he told me that what I had, I was like you know how did I get it? Where did it come from? And they don’t know you don’t. So yeah, I would love any answers at any of that” | Female, 63 |
| “Well one thing I would like to see is somebody research the connection between a shingles vaccination and lymphoma. Yeah. I can’t get anybody to listen to me, but I firmly believe that either a singles back shingles vaccination was the cause that my lymphoma or was the trigger that sent it off. And I’ve mentioned that to several doctors and, you know, shrug their shoulders or sense. But, uh, uh, I’m convinced that day. So now I’d like to see somebody look into that.” | Male, 73 | |
| “I had a wild idea that maybe multiple myeloma might come from having your house being sprayed by the Orkin guy and not cleaning it properly because my mom was always having that van come in and having them spray for roaches in Mobile, Alabama and both my dad and my mom got multiple myeloma which is a very rare disease and it is normally given by blood related people and obviously my mother and father were not blood related people so the doctors always raise their eyebrows when I say that my mom and dad both died from multiple myeloma.” | Male, 65 | |
| Quality of Life | “Even research on quality of life. Um. How we could deal with the tiredness and the other side effects of the lymphoma and/or the treatment.” | Female, 72 |
| “Well like I said the first one is a cure for it and the second one is how to get quality life out of it. That’s basically it.” | Male, 54, Hispanic | |
| Subtype-Specific Research | “Just more knowledge of the specific kind. I don’t believe there are clinical trials for my kind of lymphoma.” | Female, 72 |
| “What I am picturing is a conference, maybe like the one I went to by the Lymphoma and Leukemia Foundation, I went to one in Atlanta, and I would love for there to have been a little break out group or a little mini session on my kind. There was a mini session for the fatigue with lymphoma but I just want to know more about my specific kind.” | Female, 72 | |
| “I wish there were newer things and more specific research done on my kind of lymphoma. SMZL because mine is so rare it doesn’t get that much attention I feel. I wish there was more research being done in that area. I am open to helping with research for that. I am ready. I want more research done.” | Female, 72 |