Dialogues in Multiple Myeloma: Season 2, Episode 2—Growing Stronger Together Through Multiple Myeloma

In this episode, multiple myeloma survivor Otis and his wife and care partner, Tracy, share the many facets of their multiple myeloma journey. They discuss how they kept loved ones informed without becoming overwhelmed, Otis’s experience with CAR T therapy, and the ways their relationship has grown stronger through every stage of the treatment journey.

Transcript

SPEAKER_01 0:00

Thank you for tuning in for another episode of Dialogues in Multiple Myeloma. In this episode, Multiple Myeloma Survivor, Otis and his care partner, Tracy, continue to discuss the many facets of their journey.

SPEAKER_00 0:14

Hello, my name is Otis Wilson. I was diagnosed with multiple myeloma in December of 2017. We did an actual thing where we actually video recorded my updates during my CAR T therapy and posted every day. And that was a way for everybody to get an update on where I was in the process and how everything was going. So that alleviated a lot of the phone calls that you get all day, every day.

SPEAKER_03 1:01

That really helped. And so we were really celebrated for providing that, not only for them, but for other people that, you know, maybe experiencing the same thing and to be able to see somebody walk through it. And correct me if I'm wrong, Otis, I think for us it was more we just wanted to share the story. I don't think we really processed through, like, okay, well, we're gonna leave this information out, or you know, we're not gonna cover this. Yeah, we pretty much shared it. I think we were like, we want to show the process live and in action, and what a person could go through. Now, everyone's journey, you know, we could, you know, we always put that caveat in there that everyone's journey can look different and feel different. However, this is what a person going through this type of treatment regimen, this is what you will go through or can go through. And so we wanted just to show everything good, the good, the bad, and the ugly. It wasn't a lot. Um, and I mean, that's the vlogging experience, is even how we were brought to the attention of you all. Is us discussing his post-treatment of carvicting and his side effects that he was having, and me discussing those side effects. And so that me raising the alarm around that brought the attention of not only you all, but his medical team at MD Anderson. So, I mean, we we've live and died by the advocacy and bringing awareness and ensuring that patients, you know what I mean, that are are walking a similar journey, um, get the full, full knowledge and full information um before they um, you know, step into this particular journey.

SPEAKER_00 3:24

I did lots of research uh about the product. Um, and I remember having a discussion with my doctor about which product I was going to get, and he told me that he he told me that I was going to get carvicti because he the other product he he felt it was for more older, frail patients. Um, so um we had a long discussion about about the product, what the advantages and disadvantages of it are, um, it's efficacy. We talked a lot about efficacy um and talked about how long people are staying in remission on it in the studies. We talked about that. Um and then when it came time to actually get my infusion, um, I would say most of the talking was with my MPs and my PAs. Um they were they were they they were the ones that did a lot of a lot of that stuff. Um and we talked about side effects. Um we talked about um how the process was going to work as far as um uh giving my sales back to my giving my sales back to myself. Um and we discussed those very, very thoroughly. Um they they actually gave me a book, um, a binder with with everything on the drug, essentially, inside and out, that that I read through um before before I got my infusion, they gave me that book.

SPEAKER_03 4:54

For me, it was just wanting to know one, the disease state. Again, you know, the the big thing I was is how was this missed? Like, how do we get here? And so just trying to get a clear understanding of that trajectory um for him, because one of the things that I I'm very passionate about is looking at those health disparities and health inequities. And people of color are usually diagnosed, you know, at a uh much um you know later course in their disease state. And it's because again, people are not identifying it sooner. Um, and so that's what I wanted to identify is how can we avoid that um for other people? How can we bring more awareness? So just doing research on the health disparities around it, and then just wrapping my head around okay, the treatment regimen. Well, what is this treatment regimen? How is it gonna impact him? How's it gonna impact his daily life, his quality of life, um, getting ready for stem cell, then getting ready, you know, and then when he relapsed, what does that look like? Okay, and then getting ready for carvicty. Um, and we were very aware of CAR T even when he first diagnosed, because his um oncologist mentioned um that there was a molecule, and at that time that's exactly what it was, it was still in research, um, and that there was this molecule called CAR T, that maybe within your lifetime you will be able to get, and it could be the cure for him, and that was 2018, I think, when he was mentioning this. So to see how fast science moved, and then he was able to get it um in 2024 is just the marvel of science and just has me in awe. So I would say those were the things that I did um to prep and get prepared.

SPEAKER_00 7:04

When I got the actual infusion, I actually had an allergic reaction to the molecule itself, and I I developed it started literally at the top of my head, and I started getting this warm feeling, and it it worked its way down. And I'm sitting there and I'm talking to them and I'm telling them about it, and I'm I'm thinking that it's just part of the process. And and and immediately the the the nurse practitioner started asking me questions, and next thing you know, they went into action and they they gave me Benadryl, and they almost got to the point where they had to give me an EpiPen um to bring me back. Um, because it it worked its way all the way down my body. So that was that was very, very scary, um, and and very, very informative time uh um going through the process, and they literally did not stop giving me the Carvicti. Um they they continued to to uh infuse the product into my body. Um so yeah, that that was that was very, very scary.

SPEAKER_03 8:14

Otis has been the poster boy of the less than two percenters. So he's had a lot of the the less than two percent um uh complications uh with his um his particular CAR T that I don't think the providers were armed and knew a lot of the discussion was around um what they're familiar with, what they had seen, what was in clinical practice. You know, they've seen, you know, you've seen this you know a hundred times, why not see it, you know, mean another hundred times? Um and so didn't really talk about the things that were the outliers. They didn't talk about the zebras. Um, and Otis was literally a walking zebra. Um, so from the infusion reaction that he had to when he was actually hospitalized um for his CRS um upon um a couple days before discharge, his ferritin level became elevated, and they needed to keep him another couple of days because that was showing that he could be at risk for this less than 2% of patients can have this particular complication. But the ferritin level elevation was the red herring to let him know that it could be possibly happening and we can't send you home because if it actually converts over, then it is life-threatening um with a high mortality rate. So he stayed, ferritin level came back to normal, and he was fine. And then I think the last thing is just the um the psychological um changes that could potentially happen. So the um impact on um thoughts, um, the impact on just um emotions um that again doesn't happen to a lot of people, but it it can happen. Otis was a part of that group that it happened to. So I think that has been the thing of telling the full story and not just what is common practice.

SPEAKER_00 10:32

I have a constant feeling that I can never achieve what she achieved for me. I'm I'm constantly asking her, How are you feeling? How's everything going? Do you need anything? Um, but I never really feel like I can achieve what she did for me. So it it it it's it it's hard for me to do because I I just feel like I can't achieve what she did for me. She asked me how I'm feeling. Um, I I try to mirror that in that same in the same question when I'm constantly asking her, How are you feeling? Uh are you okay? Um that is the number one thing that I try to mirror that she did to me. I feel our relationship has gotten a lot stronger, our communication has improved uh drastically. Um and the the things that we we talk about now are things that we didn't talk about before. Um, so I will say that, and I will say our love for one another has gotten a hundred times stronger because we've seen each other through the bad times. Um, and that's the most important thing.

SPEAKER_02 11:41

Can't say anything different. Don't see the gravity or the appreciation of your significant other until you're faced with great challenges, and that for me has blown my perception and viewpoint just out the window. And it wasn't like it wasn't there before, but it's it's the the depth of where it is now. I am humbled.

SPEAKER_03 12:07

Again, we've touched on it, but just want to make sure that as a care partner and even as a patient, one, you're advocating for yourself, don't leave an appointment until all your questions are answered. I've I'll I tell patients all the time, you've bought this time. So take advantage of it. This is your time. So ask all the questions that you need to feel comfortable leaving out of here. And if there is a provider that doesn't honor that, that doesn't make you feel safe, that doesn't make you feel seen, I think you go and you find someone else because your very life could depend on it. And then activate your community, take care of yourself, do your self care because you're gonna need it in the journey.

SPEAKER_01 13:01

Stay tuned for more episodes and dialogues and multiple myeloma.