A Trial Participant’s Inside Look at New Alzheimer’s Drug Leqembi

Gordon Van Slyke’s mother and sister both passed away of early onset Alzheimer’s when they were in their early 60s. When he decided to participate in Alzheimer’s research at Charter Research — specifically the phase 3 drug trials for Eisai and Biogen’s new monoclonal antibody drug lecanemab (just approved by the FDA under the brand name Leqembi) — it was this family history that motivated him..

“I made the decision to retire from my job as operations manager of 25 Glidden paint stores after working there for 35 years,” Van Slyke notes, “knowing that Alzheimer’s could very well be in my future.”

His family consists of his wife of 53 years, his two sons, four grandchildren and his newest arrival of a great grandson. Van Slyke’s days are filled with playing golf and spending time with his wife and friends. He and his wife enjoy exploring their community in Florida’s The Villages in their golf cart. 

Being part of the lecanemab study gave him and his wife hope for the future of their kids and grandchildren. These studies will hopefully move towards a cure for this disease, he told Being Patient. 

In a recent Perspectives live talk, Van Slyke shared his experience in the lecanemab trial and his reaction to the recent news of the drug’s FDA approval under the name Leqembi. 

What the full converstaion, or read a transcript of the conversation below.

Being Patient: Let’s start, first and foremost, with your journey into a clinical trial. Let’s dial back to when you first realized that you were having cognition problems. Can you tell us a little bit about that?

Gordon Van Slyke: Many years ago, and it was just a gradual thing. As time went on, obviously, it was creating problems sometimes. I was a salesman, and if you can’t talk to people, you can’t make any money. I was an operations man for a paint company that had 25 stores I had to be supervising. So I was on the road a lot and that was kind of my background.

Being Patient: So, when you say you had to talk to people, were you having a problem with communication? What were the first signs?

Gordon Van Slyke: No, I wasn’t at that point, but I’ve been retired for 15 years, so you know. The time was the last 10 or 15 years how it progressed, and I got into this study. I think that’s been helpful for me and at least puts a perspective on what is happening. When you first experience it, it’s  like “how did that happen?” and “why did that happen?”, you know? You start to question yourself, and if you question yourself, then you’ve got a problem.

Being Patient: So, how did you find a trial? I mean we’ve talked to so many people and so many people on Being Patient say they wouldn’t mind participating in research, but they have no idea how to find one. So talk us through that journey. How did you find out about lecanemab?

Van Slyke: I didn’t. Actually I heard about Charter Research here. They were advertising and I knew I was aware enough to know that some of my facilities weren’t as good as they used to be, and  I got into the study, and fortunately, it took me because I mean I had a problem, you know. But, it’s been a very good journey. They’re very good to us. I know this is a tough thing for them too.

Being Patient: So, I’m just wondering when you found the trial, what were some of the problems you were experiencing? Obviously when you say, you were experiencing some problems, what did those problems look like? Like how did you know it’s not normal aging versus something more serious?

Van Slyke: I guess it started because my sister had Alzheimer’s and passed very, really rapidly, going downhill quite a bit. From the time of diagnosis to the time she passed was only a couple of years. My mother also had the same situation, so I was well aware of what was happening. You know, like some people just learn about it. I lived it.

Being Patient: So, with a mom and a sister, you obviously have a very strong familial link. Did you know if you had APOE 4, the Alzheimer’s gene, at that time?

Van Slyke: No, I didn’t know what genes are, or any of that stuff. I guess I was at some point hoping it didn’t happen to me, my siblings, or potentially my kids, you know. Luckily, that hasn’t happened so far.

Being Patient: When you went into the lecanemab study, did you already have a diagnosis, or you just were worried about your cognitive health?

Van Slyke: I knew there were problems, that’s why I got involved. So, that was the bottom line. I admitted to it, some people don’t want to admit to it. You just gotta be smart enough to say “Yeah, something’s not quite right here.” I mean, I gotta say I do have a similar lifestyle with the other guys that I play golf with and other families, you know, I just sometimes have slower memory. That’s the best way to say it. I do well, I think being through Charter, they’ve helped me with that. Assuming, I’ve got some of the good stuff, you know what I’m saying?

Being Patient: Yes, absolutely; you seem to be doing very well today. The FDA just approved lecanemab (under the brand name Leqembi), and I want your thoughts on that later, but first, I want to ask you: How long have you been taking this drug for?

Van Slyke: It’s not that long. I’m trying to go back in my memory when they told me that I was probably getting the drug. You know, one of these things is that it is a blind study, so…

Being Patient: You didn’t know. You could have been the placebo.

Van Slyke: Right. That’s what I was wondering, especially in the beginning. So we’ll find out right? I’m now going backwards. How can I say that? I guess that’s the best thing I can say. I mean, I’m progressing. I get up every morning and go do what I do. I’m very active, playing golf and you know, with friends. I’m living the life, you know, retired life. So, it hasn’t held me back that much. I may be a little slower on the upbeat occasionally, but so far it’s a pretty good life. I’m not feeling like I’m stuck in my house and, you know, I go out and socialize. I do everything I did before. The progression downward is not unusual for anyone, even without an Alzheimer’s diagnosis. But physically, I’m doing well. I golf three, four times a week, and I’m having a good life in Florida.

Being Patient: Great. Well, that’s all anyone can ask for, really. Tell us a little bit about your experience in the trial, like, what was it like? We know lecanemab (Leqembi) is an infusion. How often do you get the infusions?

Van Slyke: Infusions are usually quite a ways in between, like maybe a month. 

Being Patient: OK, so every month you go into Charter, and then what happens?

Van Slyke: We go to the off-campus place. It’s where they do infusions and they do all that kind of stuff. They got MRIs and they have all the equipment they need to check you under the skin. I’ve done that quite a few times. 

Being Patient: So, how long does it all take when you go in and have an infusion?

Van Slyke: I’d say it’s around an hour. And there are times where it’s been longer. I’m going to a medical facility that’s not controlled by Charter and you know, so I’m a patient and have to sometimes wait in the waiting rooms. You know, it’s a process. 

Being Patient: How do you feel when you get those infusions? Do you have any side effects?

Van Slyke: I personally have not had any. Some people get dizzy or just have bad reactions. It just happens. No bad reactions, I guess I’d say. 

Being Patient: So, Gordon, tell me a little bit about what went behind your decision to participate in research. I mean, it’s a big decision for a lot of people. You said earlier that it really confirmed that there was a problem when you qualified for this trial. What was that decision based on, and how did you make it?

Van Slyke: Again, I said my mother had Alzheimer’s and my sister had Alzheimer’s and they both passed from it. I said, “don’t be crazy, if you can help you can help.” It can’t hurt me. Even if I, you know, if it’s going to be it’s going to be, is what I’m saying. And, why not? Some people are afraid of stuff like that, you can’t be afraid of what you don’t know. 

Being Patient: That’s so true. So, I’m sure you’ve read about the recent decision by the FDA to approve lecanemab (Leqembi). What’s your reaction to that approval?

Van Slyke: Well, I think that’s a good thing for everyone. You know, I mean, I’m sure there’ll be times when it doesn’t work, you know? But if you don’t try it, you don’t know.

Being Patient: What does this mean for your trial? Are you still participating or how does that work once the drug is approved and the clinical trial is completed?

Van Slyke: Well, I think the thing is now I should get the drug when it’s out. Because it’s been approved and all that, instead of before knowing that it could be a placebo and you’re not getting

Being Patient: Have you been told whether or not you’re on the drug or the placebo yet?

Van Slyke: I was today, yes. 

Being Patient: Do you want to share what you were on?

GVS: It doesn’t matter what the name was. 

Being Patient: But you were on the drug? You weren’t on the placebo, right?

GVS: Yes.

Being Patient: OK, so you are a candidate who received the drug during the trial — and how long did the study go for? Was it a year or more?

Van Slyke: Actually, I’ve been coming here at least two, maybe three years. Okay, so what they’re doing, the way I’m looking at it for myself, is they’re trying to find candidates and not everybody is eligible or not everyone can make it work in their head. It just doesn’t work.

Being Patient: There’s very specific criteria for a lot of research. Do you know what that criteria was, as you entered? Do you know why you qualified?

Van Slyke: I don’t think they ever told me that. Well, the ones I spoke with said I was very healthy and fit. That’s a good starting point, you know, if you’re fit and willing also. 

Being Patient: So, now that you’ve completed and now that the drug is off to the market, will you continue to receive Leqembi?

Van Slyke: Yes, that’s what they tell me. 

Being Patient: Do you know for how long?

Van Slyke: Well, I didn’t go through all the details but I believe it’s yes.

Being Patient: So, you didn’t notice anything? You would have these infusions and it’s just really time, right? You would go to a place and get an infusion for an hour, but you would walk out of that room and feel just like you felt when you entered?

Van Slyke: Yes, well I had no side effects. I kept coming back, so, if it wasn’t good, I probably wouldn’t keep coming back. Most people, like if it was terrible, it’s not a really invasive thing. They put a tube in your arm and let the juices flow. And it was just a matter of time. You know, you sit there for a couple hours and then they want another hour to make sure that nothing’s gone wrong. That’s a safety thing and I think that’s wise. 

Being Patient: When you entered the study, they gave you scans and you had to have plaque in your brain — because we know how these monoclonal antibody drugs work to break the plaque down. Some of them prevent and are aiming to prevent plaque from forming. Do you know if you still have any amyloid plaque in your brain?

Van Slyke: I guess they haven’t told me that I do or don’t. But, they say it’s so good that I’m getting the drug. 

Being Patient: I think it’s still an open-ended question as to how long people have to stay on these drugs.

Van Slyke: I’m not the doctor. But I’m willing to do almost anything to make it better for people down the road. I have great kids, grandkids, great grandkids, you know. 

I’m not the doctor. But I’m willing to do almost anything to
make it better for people down the road. I have great
kids, grandkids, great grandkids, you know. 

Being Patient: How old are you now, Gordon? If you don’t mind me asking.

Van Slyke: I’m 75. 

Being Patient: When your mom and your sister got Alzheimer’s, was that an early onset?

Van Slyke: Early onset, yes, they were both probably 50. 

Being Patient: So, it’s prevalent. what would you say to other people who are sitting there going “Uhh, should I?” First of all, you know, the drug we have to wait to see if Medicare or CMS is going to cover the drug before we know the accessibility. I think it’s $26,000 per year, which is a big price tag for a lot of people, who won’t be able to afford it without Medicare. But, what would you say to people who are considering perhaps going into a trial like what you’ve participated in with lecanemab? What would be your advice to them?

Van Slyke: Oh, that’s everyone’s individual decision, I believe. It comes down to what you believe in as a person. I think if I can help my fellow man, I’m willing to do it. I think there’s a lot of people who feel that way. There’s some that this isn’t for them because it’s a time consideration. There’s also some angst here and there, but I think the end justifies the means, you know, I think it’s good. So, people may not want to do that, so they shouldn’t enter if they feel too much angst or anxiety. You know, individual decisions.

Being Patient: Absolutely. And you certainly gave a lot of time to Alzheimer’s research. So I can imagine with the drug approval, you know, you feel a part of that. That’s good.

Van Slyke: I feel happy not just for myself, you know, I hope down the road there isn’t any more of it, but who knows. 

Being Patient: But in all honesty, the drug couldn’t have been approved unless it were for people like you who gave up so much time, and the element of risk. So thank you, Gordon, thank you for participating in research. It’s important so we’re grateful. Any of us who are impacted by Alzheimer’s are very grateful.

Van Slyke: The people who are in charge are all amazing. I’m saying, all. I never had a bad experience here. I mean, some are more gregarious and others, but yes, they’re all here for a reason. And I don’t think I’ve found any that it is just their job, you know what I’m saying? So, I’m happy to have been helpful, I hope.

Being Patient: Thank you so much, Gordon, for your time and for sharing your story, especially at Being Patient. We regard patient perspectives to be of the utmost importance to the dialogue on the search for a cure to Alzheimer’s. So, thank you for your time and joining us and we are wishing you all the best for a healthy future. We will check in with you at a later date — thank you so much for joining us.

Edited for length and clarity.

 Katy Koop is a writer and theatre artist based in Raleigh, NC.