MDS and Keeping Hope - Donna's Story

Leigh Clark: Hello everyone. Hi. I'm Leigh Clark, director of patient services at the Aplastic Anemia and MDS International Foundation. And I'd like to welcome you to our podcast for patients. I'd like to thank our Diamond Level sponsors, Novartis and Alexion, for their support for this series, and our appreciation to all of the patients, families and caregivers who also help with supporting the podcast series. I have the pleasure today of speaking with Donna. Welcome, Donna. Thank you so much for being on the podcast today.
Donna Gilbride: Oh, I thank you, Leigh, and thank you for having me. 
Leigh Clark: Oh, it's our pleasure. Donna, tell us a little bit about yourself.
Donna Gilbride: Okay, well, I am 73 years old and I live in northeast Ohio, about 30 minutes south of Cleveland. I have a husband, Tim, four grown children and five grandchildren. So it's just lovely (laughs). It's lovely.
Leigh Clark: You have a very busy life (laughs).
Donna Gilbride: I do, Leigh. I have a very busy life and I like that. And what's really, really kind of cool is they're spread out. So I'm fortunate to have one 20 minutes from me and then another family in Chicago, another one down in Columbus, which is two hours from me, and then, one over in New Hampshire. So I get to go visit some really cool places.
Leigh Clark: That's awesome. Well, Donna, tell me a little bit about what life was like before your diagnosis of MDS. What, what was going on in your life?
Donna Gilbride: Well, you know, Leigh, having a husband, four children and grandchildren, my life was filled with like many, many people who are listening, work, family, travel, gosh, and of course, one very important aspect of my life is my love for the Cleveland Guardians baseball team that's been my love since I was probably five years old. So, but that's the love, but my passion is renovating houses. And when I was diagnosed, I was in the process of renovating a century home, which was my love, my poor husband's nightmare.
I got diagnosed and we sold that right away and moved to a small two bedroom, two bath ranch, because I wanted to make sure that Tim had something that was almost maintenance-free. And I did not want him undoing a large home by himself and moving on. I wanted to make memories with him somewhere. And it's good for the kids too. I moved kicking, I, well, I say kicking and screaming, but I did that internally 'cause I thought this house is just too small and everything possible I could complain to myself about, I did. I love this house. Yes, it's small, it's perfect. (laughs) So be careful people.
Leigh Clark: How did the diagnosis of MDS happen?
Donna Gilbride: You know, that's kind of interesting too. My husband and I had planned on moving south. And right after, you know, right after Christmas, I went ahead and got a job and looked for an apartment to move into in the south, and he was going to sell the house. And I said, "You know, Tim, I had been hospitalized in November for something minor." And the hospitalist came to me and said, "You need to see a hematologist." And I said, "You know what? Let me just get that hematology appointment out of the way." Well, it was several, several blood tests and a bone biopsy later that it was a community hematologist oncologist, diagnosed me on February 24th at 3:40 in the afternoon. And told me it was very cruel, actually, told me that I had myelodysplastic syndrome, MDS for short. I had three to five years to live, and I was to go home and read everything on the internet and come back in two weeks. And she would answer the questions.
Well, we all know you don't do the internet like that. That's a big no-no. We were stunned. I looked at her and I said, "You just told me I'm going to die and to go home?" And she went, "Oh, no, no, no." She said, "Donna, you'll never have to pay another medical bill again because I'm going to put you in trial studies." Well, I got away from her as fast as possible. And being in a trial study, you know, you pay for all standard of care. The only thing you receive for free is the injection, the fluid that's going into you. That's it. So anyway, we went home.
We, and my children had no idea. They all lived out of the area. We were going to get a diagnosis and a treatment plan, and then I was going to sit them down and tell them. No clue that this was going to be serious. So, and anyway, that's how I got diagnosed and I was with her ‘til we found our way up to the Cleveland Clinic. And it was because, at the time, 2012, monthly newsletters were still coming hard copy in the mail. And the front of the newsletter was about the Evans Foundation creating a consortium of hospitals to do studies on MDS. Why a consortium? Not, there is not a hospital that has enough patients to do, MDS patients to do studies on. So by grouping, it was either five or six hospitals together, they now had the patients that they could do their own personal studies on.
And here, Dr. Mikkael Sekeres was one of the co-chairs, and all data was being kept up at the Cleveland Clinic. So I literally put that newsletter down, got up and called Cleveland Clinic for Dr. Sekeres. I got the schedule's recorder. He called me right back and he said, you know, he asked me questions. And then he said, "You know, Donna, I had a cancellation for an MDS patient today." And I thought, "Nope, the next MDS patient will get this." And he said, "And you're the next one." And he said, "Can you have all your documentation up here by next Thursday?" And I went, "Oh, yeah," because I said, "Yeah, I can drive down to Columbus. There was some documentation there, I can get it here, da da da." And literally that day, I gathered all the documentation and took it to like an OfficeMax.
Told the fellow what I needed, he put everything on a jump drive and we, popped it right up to the clinic. So I was very fortunate to be able to get into the Cleveland Clinic so fast. And I remember driving up there and my husband said, "What's wrong? You just don't seem right." And I said, "Tim," I said, "This doctor that we're meeting, what happens if I don't, we don't mesh? What happens if our personalities just clash?" And he said, "Donna, you don't have to be best friends." I went, "Oh, no. This person is taking me on my journey. We have to be able to talk everything through." And um, it was so lovely when Dr. Sekeres walked into the room, and his team. I just started to feel everything melt away.
And I remember one of Dr. Sekeres's questions was, "Did anyone tell you that this is a cancer?" Well, that was the first I ever heard the word cancer and MDS together. he was fabulous. Talk about a great learning experience. It was, but I had to kind of chuckle because before, day or two before that appointment, I ran over, I had an iPad and I ran over to the Apple Store and I said to the gentleman, what I wanted was a, um, app to record my medical appointments, because, I said, "They're going to be using terms. It's going to be foreign language to me." Yes, my husband's coming with me, but the voice inflection I might take one way, he'll take another. And, he said, "Just a minute." He went into the back room and about, I don't know, four minutes later, three of them come out.
Here the general manager was there as well as the manager, uh, the general manager being, you know, in charge of large area. They came out and they put the app on my, um, iPad, showed me how to use it. It was phenomenal. So I presented this to Dr. Sekeres and I said, "Do you mind if I record this?" And he looked at me and went, "I never had anyone ask me that question before." And I said, well, and I told him why. And he said, "It makes sense, makes sense." So, I recorded him probably for the first four or five months, which was so helpful because I'm a huge proponent of you can't get enough education.
And, I was able to, to question him then differently on the next, you know, when I saw him the next time. It was really a great experience. So I would recommend anybody. You're going to go talk to a doctor, you're going hear things that you have no idea what they are, or you think you might know, record it. Just ask them, "Can I record this?" I never had one doctor say no. And they all kind of looked at me and smiled and I said, well, I said, "Actually, it's better for you. You aren't going to get phone calls (laughs) saying, 'What's this? What's that? How should I do this or that?'" And he went, "Oh, yeah." 
Leigh Clark: After you got to the Cleveland Clinic, did they, was there ever a discussion with you about clinical trials and about your treatment options?
Donna Gilbride: Yes, Leigh, and I want to back up to when I was diagnosed, we did go home and we looked for good websites. We went of course right away to NIH. We went, we found Aplastic Anemia, we found MDS, we found Leukemia Lymphoma Society. But what was really cool, and those of course gave us a ton of information, but what was really cool is AAMDS was having a, I wanna say session. What am I looking for? Having a conference over in Baltimore a few weeks later. And, so my son happened to be living in that area at that time. So we went over to it, and unfortunately none of you can see this, but AAMDS passes out hope stones. And I thought, you know, how sweet, that registration. Isn't that sweet? So I picked one up. And, the interesting thing is, little did I know the impact this little stone would make in my life.
It has been phenomenal. We go to the conference and it was like, oh my gosh, I got to see people, meet people with MDS. I knew nothing about it. I met people with aplastic anemia, you name it. It was such a lovely conference. And the professionals that are there to speak, they, I mean, they get really qualified doctors and researchers and, nutritionists. I can't speak highly enough about the quality of every session I've ever gone to. And we continue to go to at least one conference every year. But at that conference, like I said, I picked up this hope stone and we taught, you know, the sessions were, what is MDS? We were overwhelmed with information, because we really didn't know what to expect or what this illness was.
But they gave us websites to go to. They gave us literature to refer to. They, we were able to glean so much information from that jam-packed day. At that time, they were two-day. Okay. Because I'm thinking, we, we had so much information and it's like, it has to be, because I know I, I was at a lot of different sessions. But the cutest thing was the end of the day, they separate all the different illnesses and then the caregivers. Everyone has their own individual session. And we met back up and we were talking and I said, "You know, what did, what was the most important thing you got out of your session, Tim?" And he said, "Oh, Donna, I'm to play golf every day." (laughs) And we were laughing so hard, I thought, but you know, that is so important for caregivers to know.
Leigh Clark: Mm-hmm.
Donna Gilbride: They need something outside of the house and outside of you, because this, I honestly, part of me believes it's harder on them than it is on me. I am surrounded by a phenomenal medical team. My poor husband isn't surrounded by that. Yes, we have a good support group, but he needs to get out and be with people. So he needs to take good care of himself. And I think that's important as us, as MDS patients to make sure we take care of them and push them out of the house and get them a new perspective on life. So, the conferences, gosh, I just think they are phenomenal. And at the conference, let's segue back to what you asked me, at the conference is where I first learned about trial studies.
And, I went home and read everything I possibly could about trial studies because it had been presented at the conference. With that, I opened that conversation up to Dr. Sekeres the next time I saw him. And I asked him, um, a lot of questions about trial studies, what to expect, where I should look. I had, looked online at the different trial studies, but I didn't know which trial studies were specifically for my type of MDS, which is ringed sideroblast. And that makes a big difference guys, when you're looking at trial studies. You might not have the right MDS diagnosis for that trial. he first drug I was on was Aranesp, and that was a challenge for me.
Aranesp I always say was like a roller coaster, because I think I got it every two weeks, maybe three. I forget at this point. But you get the shot, so you go up high, you're at that peak on that roller coaster. That peak immediately, you start to decline, decline, decline, decline. And then you go back and get the other shot. So you're constantly, you're emotionally, you are going from a high to a low. Your hemoglobin is going from a high to a low every two to three weeks. And it's very hard on your body. It's very hard on, uh, with brain fog. I was still transfusion-dependent. Yes, it kept me from transfusions most of the time, but I still had to have transfusions. So, that's when I learned to love my transfusions, was the first one I got.
It's like halfway through I thought, "Is this psychological or is this really happening? I'm starting to feel better." Well, it makes sense. You've got this wonderful packed red blood cell, um, bag going into you and you do, you start to feel better halfway through, and by the next day, you feel great. So it was, you know, I was still getting transfusions. I was going on this horrible roller coaster. And finally my body, um, started to not respond as well to Aranesp, and my transfusions were coming fast and furious. So we had already talked about what's next. We had already talked about this drug called Luspatercept, and Dr. Sekeres said it was for ringed sideroblast patients. And we, we had already talked about a double-blind study, and he said, "This one trial study is very difficult to get in." He said, "Donna, it's so difficult."
He said, "I've called my buddy over at John Hopkins and asked him if he's having as much trouble as I am trying to get patients in, and he said yeah." Well, there's no human that it, are picking people for these trial studies. It goes into a computer, and it's all done on your, data, and if your data matches what they want, you're done, you're in. And I was fortunate enough to get into the Luspatercept trial study, and that was back in March of 2017. And, um, I just have to tell you, I have had a phenomenal experience with Luspatercept. It almost immediately, my husband looked at me one day and said, "Donna, I don't think you're getting the placebo." And I said, "Yeah, I don't either," because my numbers just started to go up and, up and up and up. So, and they hit a plateau, which was lovely. It was somewhere in the tens. And I felt like, uh, I felt like I did prior to, like probably a good six months prior to my diagnosis. 
Leigh Clark: Were you nervous about going into a trial? Were there things that made you, that made you nervous about being in a clinical trial?
Donna Gilbride: They didn't, and only because when you go into a clinical trial, you are still receiving standard of care, which means you're still gonna receive the basic medical treatment that you're receiving right now. The only difference is you're gonna have a drug, and that new drug will be introduced to you. However, you are watched so closely by a team, and they, this medical team sees anything that, um, might indicate an issue, you are immediately pulled off because they are there to take care of you, not to see if this, not to make this drug get approval. They don't care about the drug, they care about you. You are first and foremost, and, and nervous about going on the trial study? This one, no, because I had already read about the side effects, and these side effects mirrored MDS side effects that I lived with daily.
So I thought, you know, how bad can that be? It can't, and something's gotta give, something's gotta get better because I was having, and this was almost on a daily basis at the end of Aranesp, having trouble just making my bed every morning without resting. And, I'll just never forget the look in my husband's face. I mean, it is, and you've all experienced it. They want to help and they can't. They're at a loss, and you're, so anyway, no, um, I was not afraid at all. I had no anxiety. The only thing I was anxious about, and it, it was a good anxious, is if I, if I was going to get the placebo or not. And I just felt that even if I got the drug and it didn't work, that's A-okay, because they are learning from the, all the data they've taken from me, they're figuring out why that drug didn't work for me.
Leigh Clark: Mm-hmm.
Donna Gilbride: And if the whole study failed, that's okay too, because now they're going to go in a different direction. So they no longer are going to be taking time studying that one thing. They know that that's not going to work. Let's shoot to this side, let's go up this alley. I just always, always feel that a trial study, again, whether it succeeds or not, is so worth it, because you're making way for the guy behind you. You're helping to move the cure forward. Again, if it's, if it fails, you're helping that cure. And I know there's not going to be a cure in my lifetime, but I know that if enough of us join these trial studies, we're helping our scientists come up with a cure to, to find the right cure.
Leigh Clark: What have you learned about yourself since your diagnosis of MDS, and what do you want other MDS patients to know?
Donna Gilbride: Oh boy, this is great. I like this one because I, I'm going to refer back to my hope stone. My hope stone goes in my pocket whenever I'm having a bad day because I need to always, always concentrate to hang on to hope and gratitude. And that's what I learned the most about myself. I always thought I was a grateful person and a thankful person, but I learned the true depth of gratitude. And hope, oh my gosh, that's with me daily. It has changed my outlook to positive, especially when I need it. I always hope for a cure, and we're going to get that through trial studies folks, we really are. But it's the hope and gratitude. 
Leigh Clark: What do you want other MDS patients to know?
Donna Gilbride: Uh, another good question. Okay. What I want other MDS patients to know, here we go, is I would like you to take one thing away from this, and that is that no matter what your journey is, travel it with hope and gratitude. Because without hope, you aren't gonna be living a positive life. Without gratitude, you haven't really opened your eyes to all the people that surround you and help you up to this point and further.
Leigh Clark: Thank you so much, Donna, for sharing your MDS journey and your experience with clinical trials. Clinical trials can be very scary when it's mentioned as part of treatment. So thank you for sharing your experience and letting everyone know to be open to clinical trials because they do help move treatments forward. And you were part of the study that brought Luspatercept to approval that now so many people with MDS are now eligible for. So thank you for being open to trials. Thank you for participating. And thank you for moving treatments forward for all patients with MDS that would be eligible for Luspatercept. 
Donna Gilbride: Thanks, Leigh.
Leigh Clark: If you want to learn more about MDS and about treatments and about clinical trials, please take a look at our website, which is AAMDS.org. Donna mentioned about how important it was for her to attend one of our patient and family conferences and the getting access to experts that helped her when she was first diagnosed, and about being able to meet other patients. So our 2025 conferences are currently listed on our website, and registration will be opening up in January of 2025. But you're always welcome to give us a call at 800-747-2820, and we're always here to answer your questions and help you too with the resources that you need to move forward and live a happy life with hope and gratitude just like Donna. Take care. Thank you so much. Thanks, Donna.
Donna Gilbride: Thank you. Thank you so much, Leigh. Appreciate it.