Brian Anderson Explains Life, Treatment, and Surviving MDS

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. Thank you to everyone for supporting the series. Today, we're going to be talking with Brian Anderson and his journey with MDS. Hi, Brian, welcome. Thank you so much for joining us.
Brian Anderson:
Thank you, Leigh. I appreciate it. It's great to be here.
Leigh Clark:
So, Brian, tell us a little bit about you.
Brian Anderson:
Sure. I'm 58 years old. I live in, in Washington, DC, right on the wharf. And I have four grown kids, one to be married in 2024. So it's going to be... It's kind of an exciting time right now.
Leigh Clark:
Thanks, Brian. And, um, you were diagnosed with MDS, but before we talk about that, what was going on before your diagnosis? What was going on in your life?
Brian Anderson:
Sure. You know, it was interesting in that I, I was living... I was running half-marathons, doing triathlons. I was fairly active. Uh, I really had no symptoms. I had no idea that there was something in a sense brewing, for lack of a better term, inside my marrow, uh, until a routine doctor's check. So I was a consultant working hard, raising family and doing all those normal things without any notion of this, this thing called MDS. And even when I heard about it, I still didn't know what it was (laughs).
Leigh Clark:
So, what led to your diagnosis?
Brian Anderson:
Yeah. So I was coming up, at that time, I was coming up toward my 50th birthday, and I decided to visit my doctor just to make sure I got a clean bill of health. And I knew it was an important milestone, so I went to go see him. He took some routine blood tests, and then called me back later that day and said, "Hey, can you return? I think we, we have some, we maybe had some contamination or something. I'd like to redo the blood." We did that and he still was puzzled and said, "I need to send you on for, to a specialty to, to investigate this further." So that's a routine type of thing, but that's how I found out.
Leigh Clark:
And then once you received the diagnosis, what were you told was MDS?
Brian Anderson:
Well, it was interesting, that, that diagnosis actually took a while. I, that was, this was 2012 or so and we really didn't diagnose it until 2016, so I had about four years of waiting around. And when I was, when I was finally diagnosed, this is down at Moffitt Cancer Center in Florida, uh, it was through a, a bone marrow biopsy. They came out with this thing, said, "Hey, you have this intermediate risk MDS. And then we went through, in sort of painstaking detail what that, what that entailed. 'Cause, uh, like I mentioned earlier, I had never heard of that disease. I've been in healthcare most of my career and it was, (laughs) completely unknown and took me by complete surprise.
Leigh Clark:
And, Brian, what took so long to get your diagnosis?
Brian Anderson:
I, I think, I think a number of factors. One, I think back then MDS wasn't as, you know, you at the Foundation would know better, but it wasn't necessarily known as well with general PCPs and even hematologists. But even then, they were, they were looking and trying to rule out other things. So you know, I presented a little bit atypically for, than most MDS patients in that I was on the younger side. It's arguable that late forties is young, but from an MDS perspective, it was on the younger side.
So they, they looked at copper deficiencies and other type of viral, things that perhaps can be contributing to my low numbers and not necessarily MDS. And it really wasn't until I saw a specialist in MDS, aplastic anemia, that Moffitt, who then said, "We need to do another bone marrow biopsy and really look at this, and get to the bottom of it," that, that it was diagnosed. So, it wasn't that they were not doing anything. It was a lot of testing, but really to, more to rule out than it was to look for MDS.
Leigh Clark:
So you sought a second opinion?
Brian Anderson:
Yes. That's correct.
Leigh Clark:
And that was your trip to Moffitt?
Brian Anderson:
That's correct, yeah. I, I realized at that point after about four years, my doctor at that said, then said, "Hey, I really don't know what to do next. I think we should do, try some steroid therapy. And I, I said, "Well, before I take some steroids, let's really see if we can nail it, nail down a diagnosis." And then sought out a second opinion. And even after that, I sought out a third and fourth opinion, so I think one of the lessons learned that... early on was, rather than just sort of sit back and have doctors say, "I think this might be what it is," I should've been a little bit more aggressive, perhaps, in seeking out additional support and help in, in the form of a second or a third opinion.
Leigh Clark:
And once you got that confirmed diagnosis-
Brian Anderson:
Mm-hmm.
Leigh Clark:
What type of MDS were you finally given as your classification?
Brian Anderson:
Yeah. So, it was with excess blasts. My blast count was still low, was relatively... It was 6%, but, I had, all three of my, cell lines were down, my reds, my whites and my, my platelets. But chiefly, it was manifesting in the, in the blasts and really low white cells. But it was the official diagnosis was MDS with excess blasts, intermediate 1, uh, risk. Yep.
Leigh Clark:
Were you considered low-risk MDS?
Brian Anderson:
Um, so, that's that, that's that fuzzy line where intermediate folks are. There's a lot of studies that talk about low risk and how to manage patients. There's a lot of studies and, and, and information on how to manage high risk. I was this intermediate 1 low, but according to the IPSS-R, I'm intermediate. And, and it was this, gray area where I, I kind of sat. Most of the treatment that I was taking at that point was watch and wait, which was more aligned with that of a low-risk patient. So I guess to your, answer your question, I was more considered a low-risk side, but I had that, still had that intermediate diagnosis.
Leigh Clark:
How did that feel to be watch and wait?
Brian Anderson:
I think at that point when I first heard it and I challenged the doctors and I, and I asked for an immediate consult to, the transplant center to talk to them and get their opinion on, on transplant. I thought that I'm healthy, asymptomatic, now is the time. What better way to handle this was to immediately just attack it. But that didn't happen, and the tumor board said I am "not a good candidate" at that time. And I, as you said, I, I was on watch and wait. Initially, I was frustrated. I was, angry. And, 'cause you know, you want to do something. You want action. I, I wasn't taking medicine. I wasn't doing anything other than taking vitamin D and vitamin B-12, uh, pills.
So over time, I'd begin to get used to it, but I think that started to eat at me emotionally. It's a heavy weight over time. A couple of months, you can take it, but I was talking this is 2016. Over time, it really began to weigh on me. So yeah I'll say it was not easy.
Leigh Clark:
How did the diagnosis impact your life?
Brian Anderson:
I think, at first, we didn't see a lot of impact 'cause we, I tried to bury that. Uh, let's just continue, doing what I'm doing. I'm, I'm working. I'm, normal family. Let's just go and do stuff. But over time as my numbers began to get lower and my, my white cell count made me more and more immune-suppressed, I think it, it affected me more in an emotional and mental capacity. I noticed it. I wasn't as effective on my job as, as I used to be. And it just began to bother me a lot. And, and at some point, I reached out for some support, some mental health support to help me work through that stress, that anxiety that began to build.
Leigh Clark:
Did your disease change?
Brian Anderson:
Yeah, it, it did. We were watching and waiting, as implied by that term, waiting for something. And I think that's where that anxiety built. And in 2022, so just November of last, well, excuse me, June of last year my hemoglobin dropped precipitously, so too did my platelet counts. Something was happening. It triggered my oncologist to then do another bone marrow biopsy. That was done by National Institute of Health here in, in the DC area. And lo and behold, you know, NIH said that I was, quote, "transitioning." And so my blast count increased and they, they noticed that I was rapidly on a path, a changing path. We had to do something now, and so that, that time when in 2020, 2016 when the doctor said, "No, now is not the time for a transplant," in 2022, uh, that's when they said, "Hey, you know what? Something's happening. We gotta do something now."
Leigh Clark:
And how did that settle with you?
Brian Anderson:
It was a bit of a shock, a bit of a relief. I was, I was finally now back on that, that mental path of action and doing something positive that I could potentially use as a cure. That I, I can now move forward and, and enter into treatment and do something that was actionable, uh, which was something that I'd been wanting to do. So I guess I took it positively at first, and, and still do. I'm, I'm glad that it happened, I guess, (laughs) for I know that sounds weird, but in, in a way that I was very, very happy to be in that changed status. Now I knew something and, and I had information, which is good.
Leigh Clark:
And with the change in your diagnosis and the progression of-
Brian Anderson:
Mm-hmm.
Leigh Clark:
... your MDS, how did you tell your family that things were changing for you?
Brian Anderson:
Yeah. The family, I, I've always kept them up to date on my, on my progress. And so as soon as I knew something was different, that first lab value that said something is down, I let them know. We had a phone call and we just talked. Of course, it was caveated by we don't know anything yet. Still haven't talked to doctors, had my bone marrow biopsy. We then had more calls. And again, it was always caveated by saying, "This is what's happening. There could be different thing... this could go in many different directions."
But from the very beginning, uh, it was always, you know, phone calls, conversations, you know, sitting around coffee tables and just talking this thing through.  'Cause I think it affected my family just as much. They were just as concerned. Uh, and, you know, sending out a bland email or, or just a text saying, "I'm doing something, some tests," I don't think works as well as just simple conversations, staring some... staring my family members in the eye and saying, "It's going to be okay."
Leigh Clark:
And now you're, you're looking at transplant.
Brian Anderson:
Yes.
Leigh Clark:
How was, how was the discussions about transplant and with your team and... 'Cause going to transplant is a big decision.
Brian Anderson:
And it's so big, in fact, Leigh, that I, I, for lack of a better term, I shopped around for the best transplant team options for me and my family. Here, I live here in DC in, and right on the wharf, right in, right in the heart of the city so there are many options around, UVA University of Virginia, Georgetown University Hospital. Uh, Johns Hopkins is a big one an- and a lot of people go there. So I went to these organizations, sat down, talked to the doctors, examined the facilities and, and talked to my family about what would be best for me, uh, for them. And we, we actually did a very comprehensive, uh, pros and cons type of exercise where we listed all the benefits an- and the, and the negatives for each, each place. So this was a very, um, time-consuming yet important thing that we did was to sit down and, and, and make sure that we were looking and, and doing things that were right for us and for me.
Leigh Clark:
And, Brian, how did the donor search go? Did you end up with a, um, related donor or an unrelated donor?
Brian Anderson:
I ended up with a 9/10 unrelated donor. I, all I know is that (laughs), uh, some, very generous 25-year-old male in Germany donated his stem cells. And I am obviously forever grateful. And hopefully at some point I'll be able to meet him and thank him in person.
Leigh Clark:
How was the preparation for transplant?
Brian Anderson:
Uh, I think for me it was a little easier perhaps than others in that I had been in this, I'd, I'd been with this disease and been in this environment now for many years, and so I've had the time to research and talk to others and talk to people like you and, and learn from your organization and understand, you know, what, what could be happening. So I think I was pretty well set. Of course, even, even trying to do more exercise and getting physically ready, was also a key component. So I focused on getting my emotional health ready, my physical health ready, making sure my family was prepared. And at first, it seemed like these were all easy things, but you know, when the time starts getting closer to transplant, you, you (laughs), 
You know, there, you start, begin to run out of time. So I think in the, in the end, we, we did a lot of planning. I think we, and I, I had that advantage of, of, of knowledge of what may be happening, which was, which helped me plan better and, uh, gave me, um, gave me a lot of security that I was doing the right thing going into the transplant.
Leigh Clark:
What was transplant day like?
Brian Anderson:
You know, I've heard this before that the actual transplant day was almost anticlimactic. You know, w- we had the preconditioning chemotherapy and, and I had, uh, radiation. And then they hang this, this teeny little bag of (laughs), of stem cells, almost a clear, opaque, yellowish type color. And they, they hang it, couple bags and boom, you're done. And uh, was like, "Well, that's, that's it. That's my new, my new life in a sense." At first it, it was just kind of that, just kind of almost a, not a disappointment, but just like, oh, anticlimactic. But then as that-
Leigh Clark:
(laughs)
Brian Anderson:
... day wore on, you kind of realize what that meant. You know, here was the start of my, in a sense, a new life and, uh, it gave me a, a second chance. By the end of the day, it was a very emotional and thankful day for me and my family.
Leigh Clark:
So since transplant, have you had any challenges?
Brian Anderson:
Great question. I, I did.  I had two major challenges. One, the night that I came home for the first time, uh, my, my leg swelled up. Uh, it, it was pretty bad. We're not sure what it was, but it was some type of immune response clearly tied to my new stem cells. And, and so I had to go back to the hospital and take care of that. And I still, I struggled with that problem for about six months. I also had acute GVHD of the skin, which was treated successfully with the typical, um, medicines that are available to the doctors. Uh, but you know, all those things kind of in the end, you get a little bit concerned, but overall, besides those two events, I had a pretty good time,  relatively speaking, post-transplant and, um, and still am doing fairly well.
Leigh Clark:
If you could change anything about your journey with MDS thus far, what would that be?
Brian Anderson:
I can change anything. I-
Leigh Clark:
Mm-hmm.
Brian Anderson:
Yeah. if I could, I, I would you know, knowing now what I know, that we'd transitioned it would be great if I could have gotten a transplant earlier. Living with the watch and wait and living with just, that, that unknown, uh, is so anxiety producing as to be sometimes debilitating. If I had an ideal world, um, I would've moved this up earlier.
But, but minus that, I think at a simpler level something that I perhaps could've controlled better was just simply earlier learning to be more day to day in my focus, and just, you know, accepting that today is not a great day and tomorrow will be better, or I'll have a chance at tomorrow being better. So just taking things a little slower, taking things a little bit easier. I had a, I, I struggled with that, earlier in my, uh, in my journey and, and I think took me a lot longer than it should have for me to learn that lesson.
Leigh Clark:
And Brian, your last question for you, if you have, what would be your advice for other MDS patients?
Brian Anderson:
Yeah. That's, that's a great, great question. I think one, get a second opinion. Ask people like yourself, we that, that know the doctors and the facilities and, and that are, that are treating, MDS and aplastic anemia patients that have experience with this. Uour local doc may be may be a great guy, but there, there is some nuance and a focus of this disease that perhaps not everyone understands. So reach out, get a second opinion immediately or as, as early on as possible.
And I also think, too, that once you have that diagnosis and whether you have a, you're, you're being treated, you, you're on some type of chemotherapy regimen or other type of, of treatment options, I mentioned the day-to-day thing. Try to focus that mindset and if it means getting, uh, some mental health support, I think that's invaluable. A lot of times I wish I had done that earlier, but just to step back and take things differently. You now have, uh, a cancer. You now have something that is, that can be, traumatic and difficult with, you know, people having fatigue and all that. Just taking, taking a step back, taking it day to... day by day and saying, "It's okay. Today's maybe not my day, but tomorrow may be a better one."
Leigh Clark:
Thank you so much, Brian, for sharing your experiences and your journey with MDS with all of us. And if you'd like to learn more about MDS, about treatments or about transplant, please visit our website at aamds.org. You can also learn information by following us on Facebook, Instagram, or X. Or give us a call on our helpline at 800-747-2820. This concludes our podcast.