Navigating participation in clinical trials

Adam Walker (00:00):
This program has been made possible through the support of an independent grant from Daiichi Sankyo, Inc. From Susan G Komen. This is real pink, a podcast exploring real stories, struggles, and triumphs related to breast cancer. We’re taking the conversation from the doctor’s office to your living room. Over the past 40 years, breast cancer care has greatly improved due to information gained through clinical trials, clinical trials, test the safety and benefits of new treatments as well as combinations of standard treatments. They can also study other aspects of care, including risk reduction, diagnosis, and screening, whether a new therapy or test becomes part of the standard of care for breast cancer depends largely on the results of clinical trials. Clinical trials offer people with breast cancer, a way to receive high quality care, a chance to gain access to new treatments before they’re widely available and a way to help others by contributing to medical research, those who join clinical trials help further the knowledge base that ultimately helps improve breast cancer care. Today we’re joined by Sheila McLaughlin who will share a little about her experience participating in a clinical trial. Sheila, welcome to the show.

Sheila McGlown (01:18):
Thank you. Nice being here. Thank you for welcoming me.

Adam Walker (01:22):
Glad to have you. We we’ve learned a lot about clinical trials on this show but I’m very excited to get to, to really hear about your experience. So tell us a little bit about your story and can you walk us through how you were initially diagnosed?

Sheila McGlown (01:36):
Okay. Hi, my name is Sheila McLaughlin and I live in Illinois. I’m actually about 12 miles from the St. Louis Missouri area. I’m originally from Cleveland, Ohio, and I just want to plug this in. I have a nephew who plays for the Miami dolphins and I’m very proud of him. Oh wow. That’s amazing. I’m a proud auntie. And I brag about that all the time. I love that, but yeah, 11 years ago I was diagnosed. I was active duty military. I have been in 25 years in the military and in June I came to Illinois from Virginia and one day I was sitting at my desk and I felt a little sharp pain. I was like, well, what is that? That’s a little weird. So I went to my doctor, my military doctor, and I was like, well, something don’t seem right.

Sheila McGlown (02:26):
And I said, I think it might be breast, a little backstory. My mom died of breast cancer in 2004 and five years later. I, I got it. So and I was just like, man, it’s really weird. So I went to my military doctor and I said, just something don’t feel right. And finally, you know, she said, well, let’s do a mammogram. And let’s you know, see where it goes from there because that’s, I think it’s my breast. So I went in, I did a mammogram and I did the mammogram and the technician told me, she says, sit down Shayla. And I was like, Oh, it never told me to sit down. And they say, we’ll see you next year. You know? And so then the, they did a MRI and once they did the MRI, the technology detect, not technician pulled me in.

Sheila McGlown (03:22):
And my military doctor, he showed me my MRI and he said, you see this white stuff on your breasts. He said, that’s breast cancer. And he said, what you were feeling was every time you sneezed the, the cancer was pushing up against your ribs. So they found me in, in my ribs and liver in to that so far, it’s been going pretty good. They’ve been, you know, besides my faith and my great medical team, they’ve been keeping me alive and my support system, like my three sisters my dad who’s thankfully still here by the grace of God and my great medical team that I have.

Adam Walker (04:03):
That’s great. That’s great. And what did you think about clinical trials before you joined one?

Sheila McGlown (04:10):
Well, I didn’t really know the extent of clinical trials and when it meant to even be in a clinical trial. And you know, I was introduced to them, you know, luckily and blessed by my doctor. She would talk about them and I wouldn’t qualify and just different things. So I was like, maybe that’s a good thing. I don’t qualify for it because, but what I didn’t realize, Dan was you, you can participate in many different clinical trials and it doesn’t have to be, you know just full breast cancer. It could be for side effects of breast cancer or different things like that. So I had to read up on clinical trials myself, and then you always hear about the medical mistrust in black community, especially, you know, Henrietta lacks. And there are many more than Henrietta lacks and different things that happened before me that no, the first thing you think of, well I’m, I am not going to be a Guinea pig. You know, what’s the deal with this clinical trials. So, you know, a lot of information I had to learn for myself and I’m glad I researched it and able to help other women and men do the same.

Adam Walker (05:13):
And you mentioned, you know, that the trial was introduced to you by your doctors, but you did some research. Can you talk a little bit more about what, where you researched and what that experience was like?

Sheila McGlown (05:24):
Just first when my doctor introduced it, of course I trust her and I was like, okay, well, let me read up on it. And the steps of it and a different thing. So I went to like clinical trials that, or, or like Coleman, I went to Coleman and look there, there are many different places then, you know, let me just read up on it. And my doctor always says, when you go on the internet, don’t read the best stuff, you know, because the best way, all the wrong things, if you want an answer, just come to me and I could tell you the best resources to go to, if you, you know, the resources that you could go to about different things, about cause as your illness and, you know, you want to know what’s going on. So that’s what I’ve always done in 11 years that I’ve been diagnosed with metastatic breast cancer, because I’ve never had early stage breast cancer. Right. I suppose, no, go with in which they called you automatically go to stage four. And I didn’t even know there were four stages of breast cancer, I guess I was just like, Ooh, I’m not stupid at all, but I just never read up on it, you know, after it, my mom was angry. Yeah.

Adam Walker (06:27):
Right, right. Yeah. I know the thing. Most people don’t realize a lot of those details and you’re certainly very educated about it now. And you took the time to educate yourself, which is, which is really, really important. So from your perspective now, can you talk about the importance as a patient about participating in clinical trials and what made you want to participate in those?

Sheila McGlown (06:49):
Well, because for one, if I’m going to, if that’s going to be my platform I want it people to see a, especially in my community to see black women participate in clinical trials and how important I joined my clinical trial, July, 2018, and I’m still on it and I’m still getting good scans. I’m still stable. It’s was, is may of 20, 21 and July 2021. It’ll be three years. I’ve been on his trial. I’m not saying it’s been an easy path. But I trusted my doctors and I trusted research. And that’s my platform is to make sure that all women of all races, of all colors, especially black women, you know that they’re asking black women to participate in. That’s important, you know, because then our genes are different, you know? So we need to know all facets of like, what’s going on with clinical trials.

Sheila McGlown (07:47):
And I said to myself, well, you know, let me explain. Even like for the consent form, I had to fill out one yesterday. It’s like, and this is my fourth consent form because it’s always changing. And you know, I had still had to educate myself on a new one. So I read about it. I asked my clinical trial coordinator questions and I’m like, what’s this? And what does this mean? Okay. That’s okay. Cause I’m gonna go back home and read about it, you know? So, you know I still have to continue to educate myself. I just wanted people to see people like me trust in research. Right. And trust in, you know, that doctors, cause you’re, you’re, I always say beyond advocate, you know, if you don’t want to be on a clinical trial, you say, Oh, this is not for me. You can always get off of it. You don’t have to stay on a clinical trial, but that should be an option. I just chose to do that. And I continued to educate people. There are so many protocols now, R I R B boards now, and we didn’t have that back then when Tuskegee and Henrietta lacks was you know, and all that happened. So there are so many things in place now, right now that are protecting us. So I don’t have it as a Guinea pig read up on it, actually, doctor and, you know, go from there.

Adam Walker (09:02):
Yeah. And, and you’ve mentioned a couple barriers, but, but what are some other barriers that you think prevent women from participating in clinical trials and what do you think can be done to overcome some of those barriers?

Sheila McGlown (09:14):
Just being asked, not always thinking that black women have this strong like the strong woman’s syndrome, you know, we want to be asked about clinical trials. We want to know information about clinical trials and Chas need to be humans first, you know patient first at all times, you know, they need to think about the patient first and then about the medicine, you know even with the side effects and you know, I have nausea like, Oh my God, this is nausea ever going away. And I’ve been doing this for close to three years. And one of the things I had to sign for Monday was can we use your tissue in further research? And I say, yeah, if it’s going to help women, and if it’s going to help, not only women we’ll help other my community, of course, you know, and I signed it, you know, even for COVID they asked me, can we do blood tests for you for COVID? I say, yes, if it’s going to help other people. And that’s what I’m about is just, you know, it’s cancer was never about Sheila, you know, this, this, this didn’t happen because of Sheila. It happened. So I can, you know, I was once told, even if you help one person you’ve done what God wanted you to do, and that’s all I want to do. It’s just, I decided for me, and I might not be for everybody for me that I just wanted to be a part of that process. So I decided to be,

Adam Walker (10:38):
I love that attitude. It’s so good. You’re here to help. You’re here to make an impact and it’s not about you,

Sheila McGlown (10:47):
But yeah. But do you know, I am. I feel hard that I am.

Adam Walker (10:52):
Are you, are you doing what you’re doing? You’re doing good work. And we, and we admire that. So, so last question. If you met someone at your doctor’s office that was considering whether or not she would participate in a clinical trial, what would you tell her?

Sheila McGlown (11:07):
I would tell her to trust, research, trust her doctors. I will also tell her to you know, I always say hospitals should have clinical trial, patient advocates. You know, like for myself, if you know someone that one of your patients are not to participate in clinical with crown, you say, Sheila, Hey, I got a patient she’s kinda on the left or the right. She don’t know what she wants to do. Can you come in and talk to her and tell her about your experience? You know, HR, I feel each hospital should have that, you know, Orton to, you know, see people where she can see somebody like me participate in. I’m not gonna say that I wasn’t scared. I’m not going to be like this big, bad person where I wasn’t. Cause you know, I was, I was just like, Oh man, you know that it turned out, you know, pretty good.

Sheila McGlown (11:56):
And my doctor was like, you know, Sheila, you’re doing so good and it’s not gonna happen for everybody. And I understand that, but I would give her my experience because that’s the only experience I can give her. I’m not going to give her nobody else’s experience. Cause I don’t know nobody else’s experience. So Ray, that’s not for me to do, but I’ll give her my experience for my clinical trial, how I started to six weeks cans. She has to, can’t be tiring. I’m there from nine to 12 hours. Like on Monday, I got there at seven. I didn’t leave out to five, but harder to process. You know, I tell the trust, the process. If you have any questions, you actually clinical trial coordinator. I have a great clinical trial coordinator, right? Clinical trial staff. And if you feel something wrong, if something’s wrong, something’s wrong.

Sheila McGlown (12:44):
Do you need to ask the question? Cause that’s what your, your doctor worked for. You, you don’t work for your doctor, you know ha yeah. Doc, the works, your docs. Right. Make sure that yeah, you are getting the best care. And I tell you what, being on a clinical trial, I get my eyes checked. Matter of fact, next week I had to go and get my eyes checked. I get my heart checked so many times I can’t even leave the hospital. I couldn’t even leave the hospital Monday without getting my heart check. That takes three hours. I get cheese in the morning because I know they’re, you know, I’m doing all these tests to, you know, see how that kind of trial is working. Right. But I would tell them, you know, just trust, talk to your family because the first thing you know, people say, well, why are you on it’s experiment a drug?

Sheila McGlown (13:28):
And it’s like, no, it’s not experimental. It’s a part of research. And it has been FDA approved December of last year while I was at San Antonio, I found out he was in FDA approved. So it’s a good drug because after he approved it and I’m just still on a clinical trial portion because it’s working for me. So, you know, so you have any questions, no question is dumb. And no question is, you know, you actually doctor what’s your all be known and make yourself comfortable. You don’t have to stand up clinical trial. It wasn’t a last resort for me, but I just decided that this is something I wanted to do. And you know, it was just what I’m doing. Call me anytime I have a question or like it makes sure you ask the right question, like transportation, like five to have scans can y’all help me with transportation.

Sheila McGlown (14:21):
Yeah. Like I get meal tickets, you know, can you help me with my meals? I’m there for eight or nine hours, you know? Right. Yeah. So different things like that. And I know that doesn’t come to mind cause you’re thinking about everything else and you want to reach our informed consent, take your informed consent home first and read them first. Right. And then say, whether you’re going to say, Hey, yes or no or whatever, because it’s a lot it’s I think now mine’s is 29 pages. They want me to read this. I was sitting there and didn’t sign it. It’s like, wait, hold up.

Sheila McGlown (14:53):
I’m not giving away. You know, it’s like written a book right there and just trust it. You know, it’s no right or wrong answer to fighting cancer. You fight it the best way you can. You know, I don’t know, you know, from day to day or what medicines are going to work or I just have to go with what I feel and what me and my doctor had talked about. You know, don’t ever, I don’t feel bad about any medicine I’ve chosen. I don’t feel bad about getting on his clinical trial. You know, this is just the best way that I know. I don’t know. I don’t know. That’s what my doctor was there for you, you know, from what she knows, you know, so.

Adam Walker (15:31):
Hm. Wow. Well. Like I said, I love your attitude. I love your approach. I love how you are thoughtful in wanting to give back and make a contribution and just improve the lives of others by doing everything you can with what you’re doing. So we, we appreciate, we admire that on this show and, you know, thank you so much for being a part

Sheila McGlown (15:52):
Today. Thank you. And I always love talking

Adam Walker (15:54):
To you. Thanks for listening to real pink, a weekly podcast by Susan G Komen for more episodes, visit real for more on breast cancer. Visit Make sure to check out at Susan G Komen on social media. I’m your host, Adam, you can find me on Twitter at AGA Walker or on my blog. Adam J This program has been made possible through the support of an independent grant from Daiichi Sankyo, Inc.