Conquering PRCA: a conversation with Ron Duncan, Patient Survivor

Leigh Clark:
Hi, everyone. This is Podcast for Patients with 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 generous support from our patients, families, and caregivers, just like you, and our corporate sponsors. Thank you to everyone for supporting this series.
Today we're going to be talking with Ron Duncan about pure red cell aplasia or, as some patients may know, PRCA. Hi, Ron.
Ron Duncan:
Hi, Leigh.
Leigh Clark:
Thank you so much for joining us today. Tell us a little bit about yourself.
Ron Duncan:
Well, I live in Dallas, but I grew up in California. And I worked for what is now known as Verizon. I worked there my entire career. So, just before retirement, I got PRCA. So.
Leigh Clark:
And how was life before your diagnosis?
Ron Duncan:
Oh, it was fine. I was running and all kinds of exercise and, uh, living the good life.
Leigh Clark:
Ron, what led to your diagnosis of PRCA?
Ron Duncan:
Well, I went to give blood. I gave blood in December of 2004, and then, again, they asked me in March of 2005 to give blood, and you go through a, a series of embarrassing questions and then they prick your finger to see if you're okay, and, uh, the girl blurted out, "Mr. Duncan, what's wrong with you?" And I said, "What do you mean?" And she says, "Well, your hemoglobin is always 7.8." I had no idea what that meant. And then she made me talk to the head doctor at the blood bank. And, um, she said, "Well, if you were in the hospital, we'd be thinking about giving you a transfusion." So, that was the first indication. (laughs). So, of course, I went to the doctor and, and, um, a week or so later, I was in the hospital getting three units of blood.
Leigh Clark:
Wow. All of that had to be very shocking for you.
Ron Duncan:
Uh, it was shocking, yeah. Well, they say the first stage is denial, I was still kind of in denial, I guess, or, uh, wondering what was going on. Of course, they, then they did a bone marrow biopsy when I was in the hospital and it came, uh, back a bad sample. And so then they did another one in the office and it came back bad sample. And then the third time they did it, they sent it to the UT Southwestern Medical School, and then they had five or seven pathologists, um, determine it was PRCA. I think the first people weren't, they had never seen it so they didn't know what they were looking for. I think that's what, what happened.
Leigh Clark:
And while you were waiting for the diagnosis, did they throw out other possibilities to you that could be causing the low blood count?
Ron Duncan:
She mentioned MDS. She said although I was a little young, but that's what, I think that's what they were looking for, and then why these things all came back as bad samples.
Leigh Clark:
And then once you got your diagnosis, what, what happened next?
Ron Duncan:
Uh, well, my doctor was, um, confused, I guess. She'd never seen a case so she was consulting with a doctor at the UT Southwestern who turned out to be a guy who did transplants, so he was, um, thinking of a transplant, I guess. But, they tried, uh, IVIG treatments and, um, while I was there, it in a place where they give treatment for chemotherapy I was thinking all these people on the floor here, they can get a support group, uh, group if they want, but they don't even know what I have hardly. So, I made a vow that if I ever had a chance I would, I would try to, uh, get a support group for people like me.:
So, the IV treatments worked, but they only lasted, like, three weeks, and they take forever and they cost a fortune. And so, um, then they started giving me prednisone and, uh, cyclosporine, and I was able to eventually go a couple of years without any transfusions. I guess, no transfusions is their goal. And, uh, so that worked for a couple of years, and I had, uh, some surgery and that caused a setback.
When I first got it, there was no internet basically, and I'd go to the library and there'd be, the books had, uh, maybe had one, um, one, one sentence maybe about PRCA, and some of the books didn't have anything. And so, eventually though, the internet started working and I went to clinicaltrials.gov. I'd never heard of that, and I found out that there were 17 clinical trials on PRCA. Uh, most of them had not, uh, really revealed anything. Uh, but one of them was, uh, they wanted to study people with PRCA and other, um, bone marrow failure diseases or, there were about dozen, and they had four locations; uh, UCLA, Cleveland Clinic, uh, one in Philadelphia, and one in Florida.
And, um, because I'm from LA, it seemed like, what they wanted to do was just to study us. Come every six months and we'll do a bone marrow biopsy and take blood and we'll, we just want to follow you up. I think there were doing comparisons and they wanted to see how, these things progressed or inner related. And, uh, so, um, I called to sign up and, uh, I said, "I want to go to", the lady there was named Susan and I called and she said, "and I want to go to Los Angeles because I'm, I, I go to UCLA basketball tickets. I can go see UCLA play." And, uh, uh, so she said, "No, you've got to", she said, told me I had to call Leigh Clark, at the AAMDSIF. I had no idea what this was all about.
But then Leigh, you, uh, recommended that I, you said, "Don't go to LA. You've got to go see Dr. Maciejewski at Cleveland Clinic." And so, you talked me into it and I did, and then, he looked at me and then I came back six months later and then he said, "Okay, we're going to try a new medicine." But by that time, my original doctor had left the practice and I, I found a doctor. I had some connections at UT Southwestern Medical, uh, Group and, they connected me to another doctor, and between the two of them, they started giving me, danazol. So I was taking prednisone, uh, cyclosporine, and then they added danazol. And after nine months, the danazol, um, finally kicked in. The numbers kept getting higher.
Their first goal is to not give you transfusions, but they're very happy when you get to a 11 on hemoglobin. So whenever they would, I would get to 11, they would start reducing some of their medications. I, I, I regret that I never kept a, um, spreadsheet, so I can't tell the story exactly, but, uh, if I had known in advance, I would have kept a spreadsheet. But, um, anyway, kept getting better and I'd get, I'd get to 11 and they'd cut back s- another one of the medications, and pretty soon, uh, I was off of, uh, one of them, and then I was off of another one, and then pretty soon, all that was left was the danazol, and I was, uh, eventually tapered off of that, so, and the rest is history.
Leigh Clark:
So, Ron, now that you found, things that are working for you and, and you're doing well, how, do you still see Dr. Maciejewski as your PRCA expert, and how does he, how does your team that you're with in Dallas, how do they coordinate your care?
Ron Duncan:
Well actually, I'm, I no longer taking any medicine. And I saw Dr. Maciejewski, uh, probably s- I would go every six months, and I probably went for, you know, a couple of years, and then, um, I would go to my local doctor similarly, and eventually, I just, I, kind of, phased them out of my life, (laughs), so to speak. 
Leigh Clark:
Uh, Ron, you mentioned earlier in the podcast that you made a promise to yourself and have you been able to fulfill that promise?
Ron Duncan:
Well, I guess, yes, I started a Facebook group for PRCA. And, um, so we have, like, 391 members, I believe. Uh, they're not all patients; some are parents. There's also a genetic version of this and so some of those people actually have that. I try to get them to go to the, th- they have their own group, and I try to encourage them to go to their own group, but they stay around. They're from all over the world, too, our group.
Leigh Clark:
And, Ron, for people who may be a little worried about, um, you know, posting in Facebook and communicating, is this a private group where, you know, only the people in the group are able to see and communicate?
Ron Duncan:
It's a private group and we also screen people. So, uh, they have to answer, like, three questions to get in and we, and then if they don't answer the questions, I personally look at their, websites or it those f- their Facebook page is available for me to scrounge around to see if they, uh, seem legitimate and, uh, because personally, I like to get as many people in the group as I can. 
Leigh Clark:
I- it sounds like you guys go to great lengths to make sure the group is safe for-
Ron Duncan:
Yeah.
Leigh Clark:
patients and families.
Ron Duncan:
Yeah. I have a couple of, uh, we have, um, a couple of other administrators so we, um-
Leigh Clark:
Great.
Ron Duncan:
... we just try to stay on top of it. We haven't been, it, it, kind of, comes in bunches. We'll get busy for a couple of three days and then, uh, and then it will be a lull for a week or so, and then we'll get some more action, so, it's, kind of, a, because it's not very common. And, and, like I said, we've got them from all over the world.
Leigh Clark:
Wonderful. And, Ron, if you could give, you know, advice to other PRCA patients and families, what would be that advice?
Ron Duncan:
Don’t give up, I guess. Don't, uh, there, there's, there are a lot of options in treating this, and I don't think all the doctors know all the possibilities. And, uh, so, the doctors themselves, they're not always willing or able to, to, uh, contact other doctors, and, um, so in a way, you, kind of, have to learn as much as you can and don't be afraid to, get a second opinion or a third opinion because, the doctors today don't have a lot of time. They're all, you know, um, my experience with the, the hematologists have all been good, but I know just in general, the doctors are, kind of, rushed. And, uh, I've heard that from even the specialist, so.
Leigh Clark:
It sounds like seeing an expert in your disease is very important.
Ron Duncan:
I think that's important and I think that's important for anybody with a rare disease. I think you can, there's a ways to, there are ways to research out as to who to go to. I, and, uh, I guess that's not part of our conversation, but if I, if somebody came to me and said they had a rare disease, I would, I have a series of things I would tell them to do. 
Leigh Clark:
Well, thank you so much, Ron, for sharing your time and your journey with, uh, PRCA. And if you'd like to find out more information about PRCA, and treatments, please visit our website, AAMDS.org. You can also receive information from us about PRCA, uh, through our Facebook, Instagram, and X accounts, or give us a call on our helpline, which is 800-747-2820. This concludes our podcast.