Study Visits and Your Health Information

Yes, since you’ve participated in so many different trials, what do you think makes a good—not a good trial but a good experience for the participant?

I definitely like the ones that have that regular check-in, and I do think having a structured, regular check-in is helpful too. I like when people just ask me questions, how things are going, and even maybe have a curriculum through it. I feel like some of the ones that I did actually had a thing that they were going through with topics and ways to make the trial feel like it was about me, asking me personal questions about how I was going through. I've really appreciated those.

And then just getting this phone call at work, from the nurse in my doctor's office, saying “stop immediately,” that's kind of all I remember about Linomide.

Oh, and by the way, on that one, they told me—and I got a letter about it, saying you should have an echocardiogram to check your heart every year. And I called him and said, "Really, I'm going to have to go to a hospital and have an echocardiogram every year because of this possible—?" I mean, this was about the Novantrone, I think. The Linomide also had the heart issue. So, I had a few over the years, but I don't go every year. He said, “If you don't have symptoms, you can kind of take that with a grain of salt.” But I think maybe, legally, he had to say that.

They take so much blood. Oh, my goodness, oh. For the first, you know, three months, I was at—yeah, I think first three months, I was at the neurologist at least once a week getting between 8 and 20 tubes of blood taken. They’re testing for everything. Which is, you know, I understand why. But yeah, for the first three months of the first medicine, it was a lot. CT scans every once a month, labs every day, and I got the-, I got dosed with the medicine more frequently, and then it stretched out. And like, it was like once a week that it was stretched, it stretched out somehow, because it was kind of a loading dose with it and seeing how your body reacted to it. And it was so much blood; get ready for a lot of blood work. A lot of blood pressure taken like three times in a row. Like back, to back, to back, which is technically bad, because if you do blood pressure like that, it’s going to be falsely high, but that’s beside point. And also, like these games-, mind things, like, you know. You have letters and then shapes, and so when you see the shape, you have to correlate it with the letter, and they time you with that. And just little—just to see if you improve. It’s-, it’s intense for the first little bit. It’s hours. EKGs, so the-, I knew whenever I would go in, I would be there for hours, like literally hours.

And then you do all the neurological tests. They do you know, the testings on you and games that you have to maneuver and play. It got to be kind of funny because I would– I got kind of competitive with myself, like what I could do faster the next time or what I could do better. And you know if it's stacking things or distributing things, I'm like OK, I can do this faster now.

And what was your experience of some of the tests and processes you mentioned in terms of what it was like to go in for the trial?

I thought they were kind of fun for the most part. You know you'd have to do this adding test and subtracting test. And I liked that, it stimulated my mind cognitively. I thought they were pretty fun. The only part I didn't like would be the lab work. You know, having to be stuck. Or sometimes the MRI because it's challenging to stay still throughout the entire time, but that's it. That was only once every, I think, six months. I can't remember. It wasn't too bad.

Right, so the nurse will come in every time I had chemo, and ask me what all my side effects were. And I said to her, “You know, I feel like I'm complaining by telling you all this.” And she said to me, “Well, just think about it like it's a science project.” So that was a lot better.

And so, for me, the best way to do it was she gave me a chart. And then I was able to log it. So, then I didn't feel like I was complaining. But because I don't like to focus on that stuff. Because I think that it's just the power of negative thinking. And if you just can move on and not focus so much on it, then it's better.

No. I mean, I felt fine because it, it was, you know, whatever they took from me is like, you know, hopefully it’ll help someone else. And they’ll able to use my information to maybe get this FDA approved. To add me to the statistics of, like, you know, they worked well, but the-, you know, her IGM levels were low. Initial blood analysis and lumbar punctures are similar, this could happen. So, it really didn’t bother me. It’s this kind of like, I mean, what’s it going to hurt? I don’t, you know—it didn’t, I’m not one of those people that’s like, the government has all my information, and, you know. No, I’m not that way at all. Because I’m just like, I have nothing to hide from, you know. I don’t have anything to hide, so I might as well just use it for something good.

But anyway, you know, the consent, I always had to sign consent forms you know, saying that I was willing be in it and have my information shared within the trial with other people that you know, were all working within the trial and any other entities that they were doing this study with. So-

How did you feel about sharing your data in that way?

You know I mean, I was, I mean, all of those or most of those, you're always given like—the first one I did, the HINT trial, I was given number three, which that was actually my favorite number. So, I was like, oh, that's cool. And then the one, the diet one, you were given a number again, some number, like six-digit number or something like that. And I’m just, you know, -So it didn't really matter, because it’s like you know, you know, I mean your identity is like whatever. You know you're just a number or you're just a name. So- …. Yeah – yeah it doesn't bother me to share that.

Any feelings you’ve had about sort of sharing your health data with clinical trials?

I know there are some people that probably are real funny about that, and I can understand and see both sides of that coin. And maybe it’s because I’m not in a job where my health issues are front and center or where an employer would need to know more details about my health. I’m not really, really concerned a whole lot with that whole issue. I’m really not. I guess I trust that when they say there’s going to be confidentiality, that there is. And I just trust the process. And nothing has happened yet to make me not trust that. So, I’m pretty okay with, you know, releasing my medical information within a clinical setting, and I’m just assuming that they’re following the rules of confidentiality.

And then when I went back for the medication study for the fatigue, they wouldn't even give up the medical data that needed to go in my chart. And I wasn't even on the study anymore, and even signed up for this thing to do part of a group to tell us what we took. They didn't do that either. I don't know. So those things—I don't tend towards [INSTITUTION] studies anymore.

No. That was part of the thing that I signed up for in the beginning is that they did not have that for you because I know at one point getting an MRI, you know laying in the box and having them take pictures of your brain was part of the study. And that, of course, took a whole day and trying to schedule for all of that. I know when I first flopped over to regular health care, I'm like, “Well, can't you just use that one?” “No, you can't. Biogen owns that, and we don't have those.” They had to go all the way back to my original MRI to get any kind of pictures of all of the stuff on my brain. I'm like, OK, that would have been nice if they had given me one of those but whatever. It didn't work so.

I get a CAT scan every three months. Between like every third treatment I'll get a, I'll get a CAT scan. And I get a report that shows, OK, when it started, it was this much. Then the next time it was this much. And then this. You know? So they, you know, they take a sample size—not a sample size. But they have measurements. And overall shrinkage is like 60%.

So does somebody talk that report through with you? Or?

Yeah. Yeah. The doctors. And believe me, if I have questions, I'm on the phone with the nurse saying “What does this mean? You know. I'm reading this now.” Because with the patient portals now, that’s been—you know, that's great that you can get that information. Because when I was going through the breast cancer and- and the Hodgkin's, nothing like that existed. Hodgkin's was back in '96, '95. And then the breast cancer in 2003. So that did not exist at that time. So to be able to print that information, and just review it, and- and look at it, and, and–you could get your questions prepared for your next visit: “Well, this happened here, what about this?”, “And I don't understand this, explain this to me.” Rather than looking up Wikipedia, you know, online because there is so much information out there, I'd rather talk to my doctor about it. And then have que-, you know, and he will answer my questions. Or, you know, I call my nurse. She's fantastic. She's like, “OK, this means this. This means that. And I know you're excited. So I just—I'm calling you to let you know your CAT scan was- was great.” You know, that type of thing.