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Advocate Emphasizes ‘Investing in Yourself’ to Improve Patient-Physician Communication

Kenny Caps and Kristie L. Kahl

As part of its Speaking Out video series, CURE spoke with Throwing Bones founder, Kenny Caps, about improving patient-physician communication throughout myeloma care.

Kristie L. Kahl: Can you explain why patient-physician communication is key when it comes to a patient's journey with myeloma?

Kenny Capps: One of the biggest challenges that health care providers in general, but certainly your diagnosing oncologist, have is being able to understand exactly what the patient is going through. Sure, they can do blood work, they can do different types of scans, they can check you out from stem to stern. But sometimes it's hard to know exactly what's going on unless you're able to verbalize it.

And I understand that as a patient, sometimes it's difficult to understand what's going on. But at least, if you can communicate how you're feeling and what's happening in that moment, they can make decisions that actually better serve you. And then it introduces treatment options (or) caring for you in a different way. Maybe it's leading you to a different health care provider in order to handle some of those symptoms or the responses to the current treatment.

Kristie L. Kahl: How does this collaboration play a role in patients being their own best advocate when it comes to their care and their treatment decisions?

Kenny Capps: You really need to be invested fully in yourself. And that's tough, because it's an overwhelming experience in a lot of ways. For one thing, it's new. And the other thing is that it's a really serious topic. It's something where it's life changing in a lot of ways, and so that information is tough to actually take in all at once; however, you are the one who is best suited to communicate with others, even if it's just to your caregiver, what's going on with you. Which means that you need to basically understand the premise of your disease, what it is that you have, what could be showing up, and also, at least in a very general way, what options are available to you. But you have to be your own advocate in order to do that.

Kristie L. Kahl: Can you talk about the role of the caregiver when it comes to this communication with physicians?

Kenny Capps: Well, there's obviously different levels, not everybody has the luxury of having somebody who has the time to invest in taking away from their own lives to spend that much time with you if there's a lot going on, or a lot of doctor's appointments or treatments that are happening. If you are lucky to have one, maybe two or three people that can share off that trade that time off. One thing, it takes away a lot of the pressure off of you as the patient, it takes a lot of that pressure off of having to understand everything that's being thrown at you right then because hopefully that person can take notes, can listen well and can ask questions until they understand so that you understand what's going on. Because again, the better you understand this thing, the better you can communicate with your healthcare providers.

Kristie L. Kahl: As a part of this communication, why is it key for a myeloma patient to make sure that they're seeing a myeloma specialist?

Kenny Capps: Myeloma is an interesting blood cancer, because there hasn't been (historically) as much research over the past, say, two, three decades. Within the past 10 years, the amount of changes that has happened within the myeloma landscape has been phenomenal. And so, it changes quickly.

And although more and more people are becoming aware of (myeloma), it still isn't as common as some of the cancers that most of us are familiar with, say, you know, breast cancer or prostate cancer, (diseases) that typically are more common. And so there's not as much need to have a specialist in every community (with the more common cancers). Which means that there are lots of oncologists probably in your community or near your medical center that focuses on, blood cancers, but not necessarily specific to myeloma. So they're not aware of the latest updates and trends that we're heading towards, the things that are necessary in order to get you to your next best place. And so having a specialist, someone who focuses solely on multiple myeloma, I believe is essential to the right treatment for almost every patient.

Kristie L. Kahl: To bring it all together, do you have any advice for patients and their loved ones in trying to find a specialist, but then also to have that good communication?

Kenny Capps: Well, I mean, just like everything that I have to advocate for, you take baby steps. That means start small, and ask questions until you understand and then go to the next phase. And so I think maybe the best way to do that would be to find out exactly what multiple myeloma is, what it means to have a blood cancer. Why is that different then say prostate cancer or something that involves a more tumor-based illnesses? What are the signs of this? What makes them determine whether it's a multiple myeloma or smoldering myeloma or MGUS? What are those differences? What are the treatment options? Where are they at now? And why are they different? Why are there different ones that work for different people? Find out about bone marrow transplants about the difference between autologous and then allo? What's the difference between those things? And why is it that some people have won some have the other and some aren't eligible? Is it because of age? And I would argue most the time it's not. Or is it your physical condition, your ability to handle it because bone marrow transplants tough, it's a hard one. And it's tough on the body. So find those things out, educate yourself, so that you can get to the point where you can make decisions that are benefiting you help your physicians help you.

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