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Our Multiple Myeloma: Communicating With Your Care Team

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Published on May 26, 2021

Why Is Communicating With Your Care Team Important?

A multiple myeloma journey should not be traveled alone. Watch as multiple myeloma patient and advocate, Cathy Nagy, and her doctor, Tara Gregory, MD, of the Colorado Blood Cancer Institute, explain the importance of communication between a patient and their medical team. They will also discuss the role of care partners and how to utilize all of the resources that are available to patients.

Support for this series has been provided by Oncopeptides. Patient Power maintains complete editorial control and is solely responsible for program content.

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Transcript | Our Multiple Myeloma: Communicating With Your Care Team

Catherine Nagy: I went to my primary care physician for my regular checkup in December 2015. And my blood results really puzzled her. And so, she did a lot of research and she referred me to the Rocky Mountain Cancer Center. I'm like, "Hm, Rocky Mountain Cancer Center?" So, it was like Christmas Eve day. And I met with the hematologist-oncologist, one of the founders, actually, of the cancer center.

And we did some blood work and he said, come on back. And January 6th, or maybe it was 4th, I came back, and he walks into the room, and he says, "You have cancer. You have multiple myeloma." I’m like, I think I heard of it, I don't know what it is. But when you hear the word cancer, you just sort of, whoop. It sort of goes over your head. And he tried to explain it and all I could say was, "What are we going to do about it?"

Dr. Gregory: Some patients find out that they have myeloma because they had some screening tests done with their primary care doctor and it required further workup. And other patients, unfortunately, have had issues with their myeloma that brought it to our attention. And in the beginning, when you're on treatment, it's such a whirlwind. Most patients are transplant eligible. And so, you're spending a lot of time in the office getting injections.

How Can You Begin Communicating With Your Care Team After Diagnosis?

Dr. Gregory: Sometimes you're in your doctor's office two times a week or more for treatments. And then a lot of patients move forward with transplant. We're seeing someone every day — a doctor or an advanced practice professional, like a nurse practitioner, a physician assistant. And then in the follow up from transplant to any recovery, we see you quite often. And then things start to slack off.

And you never thought that you'd want to have extra time away from us. But it gets a little daunting that you're not seeing your provider team as often as you used to. And so, one of the big things that we depend on our patients to do is to communicate to us about how they're feeling, how they're doing with their medications, any issues that come up. Because now is the time that you're living while you're getting treatment and you're not living to get treated.

Catherine Nagy: My first line of therapy after diagnosis was going on Rev/Dex. And it brought down the myeloma cancer cells to the point where I could get a stem cell transplant. I asked one of my sisters if she could come out and do this journey with me. So, my sister went through that whole month, it seemed like a month, I think, of testing at the Colorado Blood Cancer Institute with me, driving me back and forth every day. And that's where I met Dr. Gregory. She was my doctor, and my sister also met her. And I just love Dr. Gregory. She was just fantastic. She's down to earth. She's right to the point. Great clinician and has great analogies, too, that would help me understand a lot more about what myeloma is.

How Can Patients and Doctors Ensure Effective Communication?

Dr. Gregory: One thing that's important to know about your oncologist office is that it's not just your physician or your advanced practice professional who can help you with some of the questions and needs that you have. When you've gone through a lot of treatment and things are becoming more common life, that's when some of the depression and anxiety associated with having a diagnosis of cancer, needing treatment, “This is a lifelong situation for me now that I have to deal with,” that's when some of those emotions start to creep up for my patients.

Catherine Nagy: Like any cancer patient, relapse is always in the back of your mind. And there's always a little anxiety about what is that… what the blood results are going to be. But I know that my oncologist has my back, and my sister is there for me.

Dr. Gregory: My patients talk about how when they see my phone number come up and I'm calling to give good lab results, they're so nervous and upset inside because they think I'm going to tell them that they've relapsed this time. And unfortunately, I think that's true. We do know that at some point the treatment that you're on will stop working and we'll have to make a change.

But what I think is very important to know is that there are a lot of options. Since 2015, we've had an explosion in the available treatments for multiple myeloma, and the treatments keep getting better. They keep getting better tolerated and more effective for people who have relapsed multiple times.

Strategies for Coping With a Diagnosis and Receiving the Best Care

Catherine Nagy: I have been keeping a gratitude journal for the past several years. It was part of a research project for… I’m with PatientsLikeMe, where I can also connect with fellow myeloma patients, on PatientsLikeMe. And there was a research project I volunteered for, and it was keeping gratitude journal. And so, for the past five years, that's what I've been doing. I never stopped, even after the research ended. Every night, three things that I'm grateful for. And sometimes I find more than three things, sometimes it's hard to find three things, but just being alive and being able to get out and connect with people.

Dr. Gregory: What is important to you? When you’re on this treatment, what’s important that you want to be able to do right now? Some patients have said to me, “I don’t want to have to be in your office once a month for an IV injection. I intend on traveling in my RV for three months out of the year. I really want something oral.” Other patients have said to me, “If my neuropathy gets any worse, that’s really going to change my ability to go do the things I like to do like play the guitar, or garden, or play basketball. So, I really want to avoid treatments that could make my neuropathy worse.” But I think when we know what the goals are and what quality of life means to you, and how we can help use that to steer your next treatment, that’s immensely helpful to your oncologist.

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