IMF Communications: You're listening to "A Day in the Life" podcast, brought to you by the International Myeloma Foundation. We hope that this podcast brings messages of hope and resilience to the myeloma community and beyond. I'm here talking with Carl Burgman and we're all at the 23rd annual Support Group Leader Summit in Phoenix, Arizona, and it's the first one bringing people back together into the room. It's a hybrid event. We have some people virtually; we have some people in the room. Carl, it's so great to meet you and it's so great to talk to you today.
Carl Burgman: It's good meeting you, Jason. I've enjoyed the summit so far.
IMF Communications: Yeah. What have you liked about the summit?
Carl Burgman: Well, it's been very informative. This is my very first one. Looking to start a support group in Tulsa, Oklahoma. I've been helping out with a support group in Northwest Arkansas. Currently, in the support group in Arkansas, I kind of took over answering the technical type questions that other people have, since the last guy that did that took a job as CEO of the-
IMF Communications: Yeah, the last guy, Yelak Biru, now present CEO of the International Myeloma Foundation. Wow, so you've been filling in for Yelak, and now starting one in Tulsa?
Carl Burgman: Yes. I'm trying to get one started in Tulsa. The support group there is, especially meeting Yelak at the time and going, listening to all the things he had and bringing from ASH conferences, and it inspired me to try to help others and if I could answer their questions or at least say, "Well, this is something that you should ask your oncologist," not tell them that this is a good thing for 'em. "I think you might try this, but ask your oncologist." But Yelak was quite an inspiration for me to really get involved and try to help people.
IMF Communications: Well, that's amazing that you are building out a new support group. It's so important to have that representation in the communities for people to feel like they have a place to come to and to able to ask those questions and find the right information. So that's really wonderful.
Now, to get to know your story and a little bit about how your myeloma journey began, so to speak, can I ask you, when did you find out about your myeloma diagnosis?
Carl Burgman: That's a long story. Well, it's long in years, and 2008 I was having some back pain, and my internal medicine doctor took some x-rays and I had compression fractures in my back. And pretty unusual, I think, let's see, I'd have been 49, 48, 49 years old at the time. And it was one of those things that's unusual for a male, 40, under 50 years old to have compression fractures. So he ran some tests and T serum protein shots showed up in the blood and then referred me over to a hematologist and ended up with the bone marrow biopsy. And at the time I had MGUS. So for 10 years, every six months or if the M protein team jumped a little, maybe every three months, I'd have blood checked. And in the middle of all that, one other bone marrow biopsy still in MGUS.
Then it really started jumping and on February 28th of 2018, my hematologist, oncologist in Tulsa said, "Well, you have multiple myeloma. You're a high risk patient and I'm referring you to MD Anderson." That's when I got serious about looking up what is multiple myeloma. And I'm smart enough to know, I go to reputable sites, MD Anderson, the Mayo Clinic, the International Myeloma Foundation, Myeloma Crowd, places like that to get the information, not Jimmy Joe's Facebook page. So I started learning some of that and then got down to MD Anderson and they did a great job of going through and explaining where things were, what they were.
They did their, at first, took the information from the Tulsa tests and said, "Well, you're really in smoldering myeloma," 'cause they said now that you have to be over 10 to 60% myeloma or your bone marrow is smoldering. And said, "Well, we got a clinical trial that we can put you in," that they're looking at maybe doing some treating on smoldering myeloma. Ended up with bilateral bone marrow biopsies and one of them came up at 61%. So, oh, no, you've got full myeloma. So they'll schedule for the stem cell transplant. And August 9th was when I got my new stem cells. That's my new second birthday, August 9th.
Carl Burgman: And put on REVLIMID maintenance, and made it nine months, relapsed; pretty typical for a high risk patient. And at that time, my doctor, it's Dr. Patel, she was a co-leader on the clinical trial that was just being opened up, which is chimeric 2. One cohort was the stem cell patient that relapsed within 18 months that was on REVLIMID maintenance. So it's the one of the first ones to test moving it from the relapse refractory stages into earlier timeframes for treatment. And she got me in, my insurance approved it, which is always a good thing. But I ended up being MD Anderson's first patient to receive CAR T cell for multiple myeloma.
IMF Communications: And this is what is now known as the ABECMA, CAR T-
Carl Burgman: It's the ide-cel, ABECMA ide-cel, so the Bristol Myers Squibb product. And it's, you know, they had plenty of experience with lymphoma patients and CAR T. For me, it was relatively, well, easy process. When you look at it, everything tends to be easy in hindsight. But they did the lymphodepleting chemo, they did the apheresis, got the stem cells, lymphodepleting chemo, I think. Well, they all had to do some kinda more knock it down, because it's one of those things, from their experience with the lymphoma, that they didn't want you to have no myeloma, but they didn't want you to have too much because of the cytokine release syndrome. So they did some more KRd, knocked it down some, did lymphodepleting, got my stem cells back, my cytokine release syndrome was spiked in temperature, couple Tylenols, a couple ice bags under my arms, and that's all I had for side effects.
And of course, you stay down there, you get monitored, and end up going two years and two months before I relapsed. And for a high-risk patient, that's a pretty large accomplishment.
IMF Communications: How are you doing now?
Carl Burgman: I'm doing pretty good overall. After the relapse, they did the bone marrow biopsy, and previously when I was high risk, I was a multiple factor at a 10-14, 4-14 switch and P17 deletion. So I was pretty much on the big high risk side. And after the CAR T, I only have a 10-14 switch. So they said, "Well, maybe you're now medium risk or low-high risk. It's not as bad, especially 'cause you didn't have a P17." So put on dara pom dex and oncologist said on that treatment regimen, based on what they've seen from other people on that regimen, that I may go four years before I've become refractory to that, which is four years for a high risk patient, great. It's another set that I don't have to do.
Problem is I had a little bit of side effects where I ended up with multiple pulmonary emboli from the medications. I think Pomalyst mainly. But put me on Xarelto for anticoagulant and said, "Well, you'll absorb 'em." And just, at the time, I asked my oncologist, "Hey, I've been walking like 14, 15,000 steps a day, with monitoring on my Fitbit." Of course, his comment was is that, "That's probably the only reason you're sitting here talking to me today," said, "Keep up walking, don't over exert yourself." So now it's been six months and I've kind of cleared to start working out and doing some exertion, but easing my way into it. But I felt good except for that one little period when I was really short of breath. But now, as time's gone by, I feel good, just trying to stay and keep on my regimen and take my Xarelto.
And of course the Pomalyst is still knocking my neutrophil count down. So you get off of that and then some of your myeloma numbers come up. And I'm in that little wedge now of what do I do, 'cause I still need to knock the myeloma number down. Can't really go up on the Pomalyst 'cause it'll knock the neutrophil down. So it's that question to both MD Anderson and my local, "What do you guys wanna do? So what's my options to do on that?" So I hope that'll get figured out here. I have an appointment Wednesday when I get back, in Tulsa, and hopefully the oncologist in Houston calls the oncologist in Tulsa and they come up with a plan, proper drug regimen to go with my dara shot.
And then after that, I'm meeting with the manager, or head of their master's degree social worker to start working on seeing if they would set up the space to have the support group meet there and see if they could provide the Zoom capabilities, try to set up a hybrid.
IMF Communications: And how did you first get involved in a support group?
Carl Burgman: I looked for one. Actually, I think I'll go back and say that in Houston, right before the CAR T cell, Dr. Patel invited me to be a speaker at a Patient Power seminar. And the other gentleman and his wife were up there, who's Marilyn Moseman, who I know now is looking to get us a support group leader. I don't know if he was at the time, but he said that he was going to a support group there in Kingwood and he said it's really helped him and it's very good discussions. So after talking to him, I went on to the IMF website and looked for who's got the support group in Tulsa or in Oklahoma. And the nearest one was Northwest Arkansas in Springdale.
So next meeting they had, Jenny and I got in the car, drove on over and started going. It's cathartic to talk about it. You get it outta your system, you're not burdening your spouse with your concerns, and it helps you figure out what's going on and get more involved and do the things like here, you hear Dr. Joe talk about all the new drugs and things that are going on, what's happening. It makes you feel better when you say, "Okay, this is all happening. Hey, I might die from something else. I don't have to worry." I mean, it's there, but it's not a worry that sits in the back of your mind. And that's the thing that I wanna do with the support groups is bring that to newly diagnosed patients or patients that haven't researched, but they just go in and say, "Well, I've got this disease that's incurable, they're just throwing drugs at me," just to try to tell them don't just think about it, just take it back. I've met multiple people that have been 20 plus years with myeloma.
Be your patient advocate, talk to your doctor, get involved with your disease, and you'll probably realize that you can live a high-quality life and do the things you wanna do. But yeah, you might have to schedule around an infusion or a shot or might get a little fatigued from your drugs, but you can have a very high-quality life and live long life with myeloma. It's something that sits there. I know I have it and I know I need to ask the questions when things are a little different, or like I'm in this position now, but I know now I just push 'em. You tell me what I need to do. Do I need to take Neupogen shots to get my neutrophil count up, and then up the Pomalyst to knock that down? Is that what you guys want me to do? But let's get it started and let's get it done. I'm still doing that, but I'll take care of that and I'm on my daily business, I don't think about it every day. Life's too short to be thinking about what you heard, what disease you have every day. Just, yeah, I try to look at it is, is that I fit that into my schedule when I have appointments and things I need to have done, but otherwise just live a pretty much normal life.
IMF Communications: Finally, my last question I'm going to ask you is what advice would you give somebody newly diagnosed and not sure where to turn to?
Carl Burgman: First thing I'd say is, is that don't look at that incurable word. There's so much going on and there's so many people that are living 20 plus years now with the disease, that a lot of the people that have it die from something else. And be your own advocate. Learn about what your disease is so that when you go into the doctor, you can ask them the questions and say, "Well, my blood work shows that this is going on. What does that mean? And what drugs are available? Which is going to work best for me? What's going to gimme the least side effects?"
Take a control of what you have and look at that and then you get to that point where you understand where you are. Be your own advocate, get your right treatment and live a normal life. That would probably be, just, you can live a normal life with myeloma. It's not your death sentence that you think it is.
IMF Communications: Carl, I want to thank you so much for speaking with us. What you've said here is gonna be so inspiring to myeloma community.
Carl Burgman: Well, thank you Jason. I appreciate it.
IMF Communications: You've been listening to "A Day In The Life" podcast brought to you by the International Myeloma Foundation. We hope that this podcast has brought you messages of hope and resilience to you and to the myeloma community and beyond. For more information about myeloma and the International Myeloma Foundation, please visit us at myeloma.org.
