Conversation with patient, Mario Rivera: His Experience with Aplastic Anemia

Leigh Clark:
Hi everyone, this is Podcast for Patients, with the Aplastic Anemia and MDS International Foundation. I'm Leigh Clark, Director of Patient Services. Our podcast series is brought to you with special thanks to our patients, families and caregivers just like you and our corporate sponsors. Thanks to everyone for supporting this series.
Today, we're going to be talking about aplastic anemia, with Mario Rivera. So welcome Mario. How, how are you today?
Mario Rivera: 
Hi Leigh. Thank you. I'm very well, thank you. And happy holidays to everyone.
Leigh Clark:
Happy holidays to you too.
So  tell us a little bit about you.
Mario Rivera:  
So I am Mario Rivera. I live in New Jersey. I'm married with two boys,   Jett and Vance, soon to be 13 and 11. My wife's name's Alison Hines. We've been together since 2007, and life is good.
Leigh Clark:
Awesome. What was going on in your life before your diagnosis of aplastic anemia?
Mario Rivera: 
Yeah, just normal, you know, routine things. Actually, Alison and myself just stated dating right around that time, so it was a few months prior to the diagnosis that we were just newly dating. And it was, you know, normal, working, and, and day-to-day routines. And it was unfortunate that it took a routine dental filling, and the next deciding to find out that something wasn't right. So, after several hospital stays, visits, testings ... And unfortunately I was diagnosed with severe aplastic anemia.
Leigh Clark: 
And, so you're in a new relationship, so how did you kind of discuss your diagnosis?
Mario Rivera:
Yeah. Everything was on the fly. I mean it  because it was ... Everything was so new. Our relationship was new. Hearing about this disease was new. The diagnosis was new, and, and you know, of course it wasn't, it wasn't the positive news you'd like to hear. You know, it was kind of a reactionary, a reactionary event. So basically, it led to lots of researching.
What we did do and, and I always say this, you know, right before this is our first resource was the Foundation, that we were able to gather concrete information. You know, valued concrete information where we were able to now determine a clearer course of what we were going to do. So I thank the foundation for that. Um, and then from that point on, it was, you know, finding the right type of care, um, and what to do next. I was willing to do whatever it took, you know, to get better.
Leigh Clark:
And, when it came to finding a place to get medical treatment, find a physician,  how did you go about doing that, and where did you end up going, for treatment? And what was your treatment?
Mario Rivera:
So the, like I said, our, our first tried and true resource was the foundation. So after connecting with the group there. So we were able to go to a local caregiver here in New Jersey, and I think they only had one patient prior to me with aplastic anemia. They suggested that I, participate in a clinical trial with NIH. So, fortunately for me, I was accepted and after meeting with the team there, it was determined that I would be treated with horse ATG. That was one of the protocols in the clinical trials at that time.
Leigh Clark:
Once you got to the National Institutes of Health, NIH, what was that like? Because you're now going to be participating in a clinical trial.
Mario Rivera:
Yeah, it was scary. I mean, the diagnosis was scary. The whole process was new to me. I wasn't really sure of what was involved. Of course, you know, after researching it, and, and asking the right questions with the team there, it puts your mind at ease, but overall you're still concerned, because, you know, there's, different foreign medicines coming into your body and, you know, different transfusions that you have to receive which is part of the protocol. But with that being said, you know, I was, I was really focused on getting better. So, once they reassured me that this was one of the protocols that they use, and they've had success with it ... And just to backtrack a little bit too, Leigh. Because at the time I was 38 when I was diagnosed, believe it or not, the norm back then was not ... I was considered too old basically for bone marrow transplant.
And, I have three older siblings, three sisters, and none of them were matches. So they were looking as best as we can for a 100% match. My sisters weren't a match, and like I said, it just wasn't the norm back then to receive a bone marrow transplant at that age. So, you know, and the horse ATG I trusted.
Leigh Clark:
And once you were going through ATG, were there any side effects that you encountered?
Mario Rivera:
Yeah, unfortunately. So, one of the side effects they discussed was, was serum sickness. Andthe way I was, I was told, was that sometimes it doesn't happen, and if and when it does, it's not right away. So unfortunately, I was a byproduct of two things. Receiving the side effects of the serum sickness, and, unfortunately, receiving it about two weeks after I was home. So it wasn't until the transfusions were finished, I was released from NIH, and back in New Jersey, when the serum sickness side effects started to kick in. And you know, they weren't pleasant. It affected my joints.
Um, what happened, I guess it was in hindsight, it was a blessing. I was already scheduled to see my oncologist here in New Jersey. So, one more thing I neglected to say, Leigh, NIH was heading up the entire protocol for me, but they were working with my local oncologist. So, I still had my team in New Jersey that I was seeing on a daily basis. That morning, I was scheduled to see them for, you know, my routine transfusions and, you know, the way things were just going normally for me back then, is when the serum sickness kicked in. And it was, it was not pleasant. We call it the shake and bake, Leigh. I'm sure you've heard other patients say that. But it was, it was pretty bad.
Leigh Clark:
So it sounds like you had a really good support team with your home team in New Jersey working with the NIH team in Maryland. So you were really very well supported by both teams.
Mario Rivera:
For sure. Absolutely. I still see the same group. Not, not the same doctor, because my original doctor had moved on, but I see the same, uh, oncology group here. And, I also re enrolled after my 10 year clinical trial period was over. I did re-enroll with NIH to continue to participate in the, uh, clinical trial. So I actually just saw them in September. So, um, everybody is still working closely together.
Leigh Clark:
And the current trial that you're in, is it a natural history study? Like monitoring you post treatment? What is that trial about?
Mario Rivera:
Yeah, basically just that Leigh. So, the first 10 years, and the last time I just saw them in September, it's basically where you said gathering data, which fortunately and unfortunately includes a, a bone marrow biopsy. The good news is because I'm one of the lucky ones and my counts had maintaining stability, and within normal ranges, my results came back good this last trip over at NIH. I no longer have to have a bone marrow biopsy when I go back. And just to be clear, it's, it's not every visit in New Jersey I was getting a bone marrow biopsy. It was only with NIH. And at this point, Leigh, it's every three years I see them. So, that was where the bone marrow biopsies were coming in, but because they have enough data with me right now, and as long as things stay the way they are, knock on wood here, I wouldn't get a bone marrow biopsy my next visit there.
Leigh Clark:
While you were going through treatment, and you came home, how long did it take for you to see a response?
Mario Rivera:
Yeah. So, because it's been so long, I always have to think about that. It wasn't instantaneous. So, you know, like many patients that go through aplastic anemia, my results, at least on the positive side, were not instantaneous. So it was about the two year mark when things were slowly and surely creeping up. I was tapering off the Cyclosporine particle I was on. My, my CBCs would eventually creep up, and they would, you know, kind of go up and down. But it really wasn't until about the year and a half, the two year mark, when they started to stabilize. Oh, and within the normal range. So I, I know I said it before of being lucky, but even my counts in general are within, you know, just normal, normal ranges. So, that was it. And then that was including the, the taper of Cyclosporine, so that ... at that point, that was the only medicine I was on for the aplastic anemia, so two years, I was medicine free and transfusion free.
Leigh Clark:
That's amazing. And I'm sure it was very frustrating waiting for something to happen. Like waiting for a response.
Mario Rivera:
For sure. I mean, when I think back to the first phases of being diagnosed with aplastic anemia, you know, it's, it's hard to be in the moment. It's easy to, look, at least for me, let my mind wander, and yeah, that's where I was. A lot of times, Leigh, I was, you know, this is not ... It- I guess this is just the way it's going to be. I'll accept this as what it is and, and I don't think they're ever going to get better. And then the frustration, because with the low counts come the transfusions. And then of course, you know, there's a certain lifestyle you have to live where you have to be extremely careful and cautious of how you take care of yourself, and what you expose yourself to. So, you know, that- it's frustrating, but I knew it was part of the process.
Leigh Clark:
Do you ever worry about relapse, and that the disease will come back?
Mario Rivera:
I do. Of course I do. Yeah. Um, you know, I, I like to participate in the monthly support groups, and that's one of the things that I, I like to listen to and, and, you know, I hope it never happens with anyone. And we've had great success stories. But, because I never got a transplant, and I'm not really cured per se. You know, we like to call it a robust recovery. Yeah, the thought of relapse is absolutely always in the back of my mind.
Leigh Clark:
And, and you mentioned about the support groups, and how, how do you feel those help you and your family?
Mario Rivera:
Tremendously. I mean, I encourage anyone to participate whether you're a patient, a caregiver, um, you know, whether ... I mean, everyone has their own journey. So whatever it is you want to hear, participate, or take away from, I think they're so valuable. Um, like I said, I, I like to participate more to give some type of support. And, to, you know, assure some of the newer patients. Or some of the patients or caregivers that are on there, that, you know, there are some success stories and, and, you know, everyone's dealing with this differently, and everyone has their own questions.
You know, it's what matters to them. I just like to participate and offer whatever I can. And, the truth of the matter is, I gain so much from those, for myself, because I go there with an open mind each, each support session that, um, I attend. I try to just take something away. Even if it's just, you know, being a little bit more grateful. Or, you know, hopefully easing someone's burden with some of the questions they may have. You know that's tremendously helpful to me.
Leigh Clark:
And you're a long-time survivor. Do you still feel a need to keep up on what's the latest in aplastic anemia? And how do you go about doing that?
Mario Rivera:
Yeah, absolutely. Um, well, fortunately I was able to see you in a group, by participating in person, finally, at a conference in Texas, uh, in November. I think those are valuable. Any conference. Any, any of the l- literature, any of the webinars, any of the, um, email communications we receive, they're valuable. And even on my own, whether it be researching it through the foundation's website, or something that, you know, possibly was shared to me from someone from my oncology team or someone from the support group, I think that's important. I think it's important to, um, just kind of have your ear to the ground to this, because, you know, things change, and I love to hear the things that are being done differently in a positive way. And, and things that they're trying, and some of the new medicines and technology I think it's great. But yeah, I love to stay on top of that, and I, I just ... I'll take it from whichever resource I can.
Leigh Clark:
And our last question for you will be, "If you had a bit of advice to give to another aplastic anemia patient and family, what would that be?"
Mario Rivera:
Advice. I would say, you know, have faith in the process. A- and have faith in whatever gets you through, you know, this particular time of your life. Because everyone's journey is different. Everyone's life is different. Everyone's reaction to being diagnosed to this disease is different. So, you know, have faith in the, in the process. Ask the right questions. Have faith in your medical team. And if, and if you don't, you know, a- ask the right questions. You need to be your best advocate. It said a lot, but it's the truth. No one's going to take (laughs) care of you better than yourself, or, you know, your, your immediate family. But, ask the right questions. Research within a tangible resource, the procedures, the processes, the questions, your disease, and ultimately have faith in the process. And have faith in whatever gets you through it.
Leigh Clark:
Well, thank you so much for sharing your time, and your personal experience, and your journey with all of us. If you'd like to find out more about aplastic anemia, and treatments, please visit our website at aamds.org. You can also get information by following us on Facebook, Instagram, and X. Or give us a call on our helpline, 800-747-2820. This concludes our podcast episode.