Seeking Resources and Second Opinions As a Myeloma Patient

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Topics include: Living Well and Patient Stories

How do I make my doctor understand what I need? We asked three multiple myeloma survivorsâ??Linnea, Jane and Rogerâ??how they attack their disease and obtain the information and help they need. Linnea suggests a straightforward, assertive approach, while Roger promotes the use of a patient advocate, and Jane looks for someone who is on top of all the latest myeloma information. They all agree that doing your homework and staying plugged in are the best strategies for self-advocacy.

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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. 

Tamara Lobban-Jones:

Hello and welcome to this myeloma Patient Café. My name is Tamara Lobban-Jones, thanks for joining us. Here you’ll hear from three myeloma patients on how they shared their diagnosis, how they coped, and they’ll also share strategies they used to improve communication with their healthcare team throughout their journey. 

Do each you have any advice on communication strategies that worked well for you when communicating with your providers?

Linnea:

Communication involves, one, getting yourself informed so that you can ask the right questions. Understanding your diagnosis is very important, and then going from there and just looking people straight in the eye and saying, “I have something that I don’t understand. I need help understanding it. If you can guide me to financial resources, other doctors that I might need, tell me about the medication I’m taking,” various things like that. If you have those questions lined up and ready to fire, you’re gonna get the answers. And it’s gonna have to be up to you to sift out what works for you. As Roger said, this is an individual disease. I am considered normally a  very healthy person. I didn’t do anything to damage my kidneys. I had a nephrologist that said, “Well, what did you take?” and I said, “aspirin.”         

You know, so you have to be prepared and know what you need to ask and then not be afraid to ask. 

Tamara Lobban-Jones:

Roger, for other patients watching this, any advice from you?

Roger:  

My advice, I think, that multiple myeloma is not as common a cancer as some of the others. You really want to find an oncologist that is up to date, follows the latest treatment programs, and you have to do your homework as well.              

There are continual improvements in treatment for multiple myeloma: the maintenance drugs, the targeted therapies that they’re coming up with. I think over the next few years, we’re gonna see a lot of changes in dealing with cancers like multiple myeloma. So you really want to do your homework and have an oncologist that’s also doing—that studies it, and that’s one of the great things about MD Anderson is that my oncologist, all she deals with is multiple myeloma. And she’s continually going to programs around the world to learn new treatments, so I’m plugged into the latest ones. And MD Anderson fortunately is one of the leaders of the clinical trials. So you can always jump in on those. 

And after breaking the ribs I was taking—I can never remember the names of these drugs—but it’s a pretty common drug that women take for osteoporosis. And it helps to stop the deterioration of the lungs, but there’s a new one that’s coming out—well, it’s been out for quite a while but not for multiple myeloma—that I got into a clinical trial that helps rebuild the bones. So stay up to date on the latest things, and I think that will make us live a lot longer. 

Tamara Lobban-Jones:

So, it sounds like, do your homework, find an oncologist who is educated on the latest treatment available, and stay plugged in throughout your journey. Jane, how about you?

Jane:      

Well, they’re talking about the big C, which is cure not care, for multiple myeloma. And I’m very fortunate in that I have an oncologist, who unfortunately is retiring soon, but he has been very involved in the research of multiple myeloma.

And we have a walk/run that we do through the society that raises funds for their research. So we are very involved in what they are doing and what they are researching, and he attends that huge ASH conference. I think you’re probably aware of that.

Jane:      

Yeah, and so he’s really up to date as Roger said. Maybe not as much has Houston. Houston is notorious for being very up to date. However, I feel very confident in the treatment that I have received over the seven years and have no issues whatsoever with the type of treatment and the relationship with the healthcare providers.

Linnea: 

I was gonna say make sure that if you are at all in doubt you are entitled to a second opinion. I went to a second opinion nephrologist. I went to a second opinion oncologist, which confirmed that I was with the right oncologist to begin with. But, you know, I still needed that. I needed someone to answer my questions and explain things to me, and I wasn’t getting it. And when I went back and got those opinions, things progressed.

Jane:      

Yeah, well, my oncologist, he’s a very interesting man and is one of those ones that is very abrupt. His bedside manner is not incredibly good, but he’s very smart and very intelligent. And he knows what he’s doing. So I have always just kind of forgotten about his bedside manner. And he’s changed over the years, but he also has a nurse practitioner. And she is extremely good. So when you’re fairly healthy, then she looks after you rather than the oncologist. And I feel quite confident with that.

Tamara Lobban-Jones:

So thank you, Roger, Linnea and Jane, for sharing all of this really great information. It’s really been inspiring to talk to the three of you and hear about your—and hear about this really great advice and support and information that you’ve been sharing with patients who have multiple myeloma with their kids, with their partners, and with maybe other caregivers who are working with other patients who have multiple myeloma. Thank you for your time today and for sharing.

Linnea: 

All right. Thank you.

Jane:      

Thank you. It’s been wonderful.

Linnea:

It was fun.

Roger:

Thank you. 

Tamara Lobban-Jones:

Jane, how about you?

Jane:

Well, I have had no difficulties with the disease or the patient care or communications for the whole time, and I would just recommend that people with this disease get involved, like for example, with our society and have the opportunity to ask the questions, because as we talked earlier it is an individual disease. So it works differently for everyone, and then as Linnea says, you have to be informed and know what you are looking for.         

And initially it’s very difficult, because you’re very confused as a cancer patient. You’re saying, “Oh my god, what happened to me, and where did this disease come from?” So like Linnea said, you have to stick through it, and then you figure it all out and get help from every source that you can possibly imagine.

Linnea: 

That’s right. 

Tamara Lobban-Jones:   

Roger? Communication for you?

Roger:  

I think several things. One is having your wife or your husband that is keeping up to date and being your patient advocate. And we found a tremendous amount of information and help through the Internet. There’s the Myeloma Beacon.

It keeps you up to date on all the latest treatments and programs. And there are other ones that my wife is continually looking at. So I say do your research. Be your own advocate, and you can stay up to date with the latest things by getting on the Internet and following the Myeloma Beacon and other publications 

Jane:      

Like Patient Power. I found Patient Power is incredibly informative, and you know they have great articles about the myeloma itself. So, yes, you’re absolutely right, Roger. Get all the information you can coming across your screen.

Tamara Lobban-Jones:

Roger, Lineea, Jane, thank you so much for sharing your stories. It’s really been inspiring to sit down and hear from each one you. Thank you for joining us today.

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. 

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Page last updated on May 22, 2017