Bianca
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called that at the time. For 23 years, Bianca did not have any symptoms. A couple of years later, Bianca recalled feeling weird, and her left leg dragging a little. Bianca’s brother, a pulmonologist, suggested that she see a neurologist. In 1993, after receiving an MRI, the neurologist diagnosed Bianca with MS at 41 years old. Bianca was on a drug trial of Linomide for several months where she took a pill every day. Weeks into the trial, she received a phone call telling her to stop the drug because there had been some previously healthy people who experienced cardiac episodes. Bianca found the phone call “a little scary.” Bianca felt disappointed because it was an easy drug to take, and it would have been great for her had it actually helped her with her MS. At that point, Bianca was not optimistic that anything would work due to her previous experience with heavy hitter medications that did not work for her. She was pretty resigned to this. Her motivation for participating was that her doctor was encouraging her to do it and she felt that she had nothing to lose.
Bianca has also participated in many volunteer cognition studies that include the pencil-and-paper tests, peg test, and other memory exams. Her motivation for volunteering for these studies was she would get a free intense mental workout that was sort of fun. She is interested in those mental exams and memory tests because a layperson can sort of comprehend what’s going on. Bianca wishes that researchers would give her the results of her tests because she is interested in learning more about the “mental stuff” and her progression over time.
Bianca participated in trials because available treatments were no longer working.
Bianca participated in trials because available treatments were no longer working.
Can you tell me how going on this clinical trial fit in with your general approach to treating MS and what made you decide to participate in the trial?
I guess it was after the three injectable medications, Betaseron, Avonex, and COP1, copolymer 1. I guess it was the next thing that was supposed to be the next great possibility for MS. And when that thing ended, that's when I did the Novantrone as sort of a last ditch-- I mean, that seemed to be kind of the last-ditch thing that they wanted to try for me. And I gave that the full everything until they said, “OK, you've reached now your limit.”
Bianca talks about the placebo group being part of scientific discovery that helps everyone.
Bianca talks about the placebo group being part of scientific discovery that helps everyone.
What did you think about the idea of being randomized to either the placebo or the study drug?
Well, it was sort of all in the name of science. I don't think I had any great, great hopes. And I don't think I was thinking, oh, I'm going to be really disappointed if I just get the placebo. Because I thought, eventually, OK, well, if this drug turns out to help people with MS and is safe, then Dr. [NAME] will put me on this drug when the trial is done. So, for me, it was, OK, so maybe there's a delay of several months. If I'm just getting a sugar pill or whatever, eventually, if it's considered worthwhile, I was totally confident that he would put me on it if he thought it could do something. So even if it were a regular prescribed drug, I would have given it a try. But I was getting weary of the injection medications. And yeah, but I would've done anything. I just kind of gave up on medications helping my particular case.
Bianca describes going for special tests after the trial she was in ended suddenly.
Bianca describes going for special tests after the trial she was in ended suddenly.
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.
Bianca did not feel upset when informed her trial had abruptly ended.
Bianca did not feel upset when informed her trial had abruptly ended.
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. And I don't know what's happened with it, if it's just permanently not a possibility. I don't know. But there was nothing—I don't remember any suffering in any way from the medication except for the little dry mouth thing.
Well, it was just a little scary. I wasn't somehow personally afraid for myself. It was sort of shocking. But even though I tend to worry about other things, I did not—like at work, I was able to continue teaching my little kids their music classes that same day. It was not in any way traumatic. It was just sort of like, “Oh, OK, that's weird.” It didn't really upset me. And I didn't pursue it. I don't think I even read about it to see, what's the deal with this medication? So, it didn't really affect me for some reason. I don't know why.
Bianca enjoys participating in research studies.
Bianca enjoys participating in research studies.
So that was interesting from like a genetic standpoint, but the studies, to me, are interesting because I like working with the students, I always want to know what they're doing, what they're studying, where they are in their studies and try to encourage them. I like to do the studies because I think they're interesting. I want to see how it relates to me, and then I see through the years the changes, how things have progressed. And so, I feel that it's important to do those. And I like connecting with people all over the United States. That's been interesting for me.