Published on September 29, 2017
Through an educated and engaged network of a supportive myeloma community, patients can feel more confident and optimistic about the care they're receiving. Patient advocate and mentor, Cynthia Chmielewski talks with individuals living with myeloma about how to get the right care team and other advice for the newly diagnosed.
Produced by Patient Power. We thank AbbVie and Takeda for their support.
Transcript | Myeloma Patient Cafe®: Taking Charge of Your Myeloma Care
Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.
We have lots of experience with myeloma between us, probably decades, maybe a century, who knows?
But if you had one piece of important advice, something that you've learned on your journey, what some of the important things that you've learned along with your journey? Anybody ready to start.
Getting care. Getting the right care gives you the confidence. When you go in there, you know how it's nerve-wracking, and you hear—like I'm on websites and on the support groups like you are, and you read these people saying, oh, my God I hate these doctor appointments, my heart, my brain, it's just horrible. You know, I did in the beginning, and then when I got a good myeloma doctor it—it's just confidence. I go in there now, and I feel like I'm in control. And it didn't happen right away, but when I started going to Mayo I know that they know what they're doing, and they help. You know, I think that gives you confidence, and I think that gives you control back. Good care.
Good care. So that's your lesson. I'm sure that that's—I'm sure everyone agrees with that. Does anyone have anything else besides getting that right care team, seeing a myeloma specialist, making sure that you have an expert on your—in your back pocket? Any other important advice? How about Brenda? And Eric?
Important advice for me that I would give people is I stay away from toxic people. Sometimes you have people that they hear about you having cancer or something, and they really can't handle it. Because, you know, when you get cancer all your friends and family have it too, but everybody can't handle that. But if they can't handle if I got cancer to take on, their insecurities or whatever it is with my diagnosis. I don't know if that makes sense to you or not.
So I just—because I don't need the stress, so that's one of the things for me. I stay around positive people, and I love people.
Those relationships are so important to me, and that includes like she was talking about the doctors, but my family has actually—we were close, but we are actually even closer now…
We are too.
…since the diagnosis.
I think most people are.
Eric, did you have something to add?
Well, along the same lines, and we hear this a lot in the myeloma community is to be your own advocate, but I think that really is a lot more than just a saying. I think it's really important for—it's been really important for me to take charge of my meds, my prescriptions, make sure they're coming through on time, make sure they're filled right. I've caught several, actually, mistakes that could have—could have been a problem. And it's not—it's not that everybody isn't trying to their job really well, it's just there's so much going on. These doctors and nurses have maybe hundreds of patients, and they only see you once every few months.
They can't remember everything. It's hard to keep up with, you know. You are or I am the expert on me and what my protocol is and what my schedule should be. And if something doesn't seem right, then it's up to me to try and get it fixed. So I think it's really important to try and take charge of your myeloma treatment, not to make the decisions for the doctors so much, but verify things, question things, seek options, ask a lot of questions.
And they like it. My doctors told me, you just keep coming in with questions. He said, I will be happy to answer those questions.
And he and I have formed a pretty good relationship where, you know, we know exactly what the other one's priorities are and what his philosophy is, whether he's a conservative or a liberal when it comes to treatments and so on. So there's a lot that we can do for ourselves and that we really, I think, we really should do for ourselves.
That's—you know, I think engaged, educated, empowered patients—I think I've read somewhere, but I don't know exactly where it was, but those educated, empowered, e-patients they call them, usually have the best possible outcomes. So it's really important that you advocate for yourself, and if you don't feel comfortable doing that to have someone right with you at all times that will advocate for you. And how about you, Amy, any words of advice?
Oh, you know, you've kind of touched on everything important.
Even if a very notorious myeloma specialist center is far away, two hours, four hours, a plane trip, go seek that advice from a myeloma specialist. You can always carry out the routine treatment close to home at your, you know, local oncology group.
Bring a caregiver with you. It's always good to have a second set of ears to catch things that the doctors or nurses say that, you know, two ears are better than one. And like everybody said, don't sweat the small stuff. Take every opportunity that comes your way for interesting and fun things to do and just take it day by day, one day at a time.