As part of its Speaking Out video series, CURE spoke with Throwing Bones founder, Kenny Caps, about treating myeloma as a chronic disease and how the multidisciplinary approach to care can assist in challenges, like financial toxicity.
Kristie L. Kahl: Can you explain what we mean when we say that myeloma can now be considered a chronic disease?
Kenny Capps: Well, I don't know if necessarily, we're full into describing it as a chronic disease. But I think we're close from what I understand. And I certainly talked to lots of experts every week about that possibility, because very often, multiple myeloma which is a blood cancer, can be treated or put to a place where it's controlled maintenance through different types of treatment, usually in the form of regular chemotherapy or biologics, or even some newer immunotherapy. So I think that we're to the point where people can live long lives to the point where they aren't necessarily dying directly from multiple myeloma, or maybe even necessarily its effects. And I think that's the goal.
Kristie L. Kahl: Why is a multidisciplinary approach to myeloma care important?
Kenny Capps: Well, I mean, I think like most larger, chronic illnesses and hematologic diseases, a big chunk of what our health care providers know to do is to treat the symptoms to treat to go after the disease itself is sort of a newer phase. But while they're doing that, and while we're moving into our chronic illness phase, like you talked about, we still have to live. And what that means is that we need to treat the individual things that come up, and very possibly because of multiple myeloma.
So there are other health care providers, other than oncologist that specialize in treating those particular things, and actually make the job of the oncologist or the treating physicians job easier, and better and more successful. And so that includes some things like, let's talk to physical therapist, so let's talk about things that actually in our bodies that need to be strengthened or maneuvered or where we respond better. And I would actually include in that, health coaches or trainers that actually can focus on actually feeling better, living better. Dieticians, nutritionists who can focus on maybe things that we need to eat that are feeling better, or maybe not eat, that make us make us feel worse. All of those things. And, of course, also if you have multiple myeloma, one of the symptoms often is bone lesions, which can lead to fractures and all sorts of other horrible things. And so you have to bring in orthopedists and you have to bring in this particular specialists that focus on whatever it is that the disease is offering you at that time, the more we actually are able to handle those issues, issues with people who specialize or focus on solving those problems, the better quality of life that every patient's going to have.
Kristie L. Kahl: Do you have any advice for our patients and their loved ones on trying to find this multidisciplinary approach?
Kenny Capps: I think the first place I would start is dealing with your diagnosing oncologist, they're going to have some specific references or recommendations. The second one I would do is to focus. And actually Throwing Bones is working on this, too. And there are other research institutes that are working on similar programs to make assessments that at least allow for individual patients to make self assessments to determine their ability to be better, feel better, do better. And those assessments will actually determine whether your needs, strength, agility, coordination, dexterity, but also into things sort of mental health awareness. And I mean, because there's not much more of a depressing topic than to talk about cancer with most people. So to say that you're feeling something from it is not surprising.
Also talking about diet and nutrition. So making an analysis, doing some basic things like a nutrition journal, a food journal. And so, once those things have been established, and you can go to people who specialize in those things.
My advice is to start with making an assessment, determining a self assessment as to where you are now. Reach out, ask for questions. If you can't, you can ask Throwing Bones, but you can also ask your local oncologist for suggestions and make recommendations as the next stage. There are also lots of your local gyms, YMCAs and so forth, have folks can help you with some of those things to at least give you referrals to places that they feel like would be helpful.
Kristie L. Kahl: Can you discuss how financial toxicity affects myeloma patients who might be treated on a maintenance for a very long time and what some of those additional costs might even include, too?
Kenny Capps: Yeah, so It's deep. And there's a lot to it. You know, I wish there was a simple solution to it. And hopefully one day, there will at least be a simpler solution to a lot of the challenges that folks make. But if you don't have unlimited resources, if you're not retired, but then also have amazing health care, and again, some extra resources to handle the unexpected. It's expensive to be sick. We talked about it previously, but specialists, and about the necessity of having a myeloma specialist and the fact that myeloma specialists typically are not in every community, at least not very close, not within an hour, not within two hours, not within three hours sometimes. So and that's just, if you're driving some places, it's much farther if they have to fly. As those involve costs. For travel, they involve cost for not being at work or saving income.
Even if it's not just financial costs for not being present, whether you have a job, or you just have a family, or you have a house, you have somebody to take care of, your pets, take care of your kids. Those are additional costs. And those are the things that even if you have great health insurance, or Medicare or Medicaid, it's not going to cover it. And so those funds have to come from somewhere. And so it's really challenging. I wish I had the absolute solution for that. Here's your problem. Here's how you solve it. But there are often solutions of a sort. They take work sometimes to find; they take research; they take asking lots of questions. Sometimes they take filling out applications or talking to people on the phone, or asking for help. It's not easy, and it's tough. And that's one of the insidious downsides of any of these types of diseases. Because they're expensive. It's expensive to just be sick, it's expensive to just treat sickness. It's expensive to live to be sick.
Kristie L. Kahl: Do you have any resources that you could offer our patient audience if they want to address their financial toxicity issues?
Kenny Capps: Well, right now, Throwing Bones doesn't have a program. It's something that we're hoping to work for in the future. But we do have links on our website that can lead you to other sources to ask questions, or to apply for aid. Honestly, there's no simple solution, there's not a one-stop solution. Unfortunately for cancer patients, it is challenging. And you know, it gets even more challenging if some of the treatment that you have to do is outside of your state sometimes or outside of your health care, your insurance company or Medicaid, Medicare's network. Sometimes things won't be paid by them, so you have to find other resources, but you have to ask questions with the assumption and you have to assume that there's a solution to it. Don't give up on that. I know it's not easy. I've seen it. I've experienced it. I'd say weekly, I get asked a similar question. And unfortunately, as of right now, there's not a one-stop-shop solution.