AML Patient Insight: Resources to Consider to Help Reach Treatment Goals

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Topics include: Treatment | General , Treatment , Understanding and Living Well

How can acute myeloid leukemia (AML) patients learn more about their disease and make informed treatment decisions? Patient advocate, Rick Ross, shares information resources and gives key advice from his experience to help others better understand their AML condition, find specialists, and live with the ups and downs of the disease. AML expert Dr. Ross Levine from Memorial Sloan Kettering Cancer Center also shares tips for establishing a good foundation with a healthcare team and getting the most out of doctor visits. Watch now for valuable tools that AML patients can use on their treatment journey. 

This is a Patient Empowerment Network program produced by Patient Power, in partnership with The Leukemia & Lymphoma Society (LLS). We thank Astellas, Celgene Corporation, Novartis, Pfizer and Seattle Genetics for their support.

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Transcript

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.

Andrew Schorr:          

Look, let’s face it. When you or a loved one is diagnosed with an acute leukemia, I use the analogy of five alarm fire, but it’s terrifying for the whole family. And so, you need people who can help you think clearly. And that’s a resource we’re talking about. But also, Rick, you talk to other patients and families.

Rick Ross:                   

Mm-hmm.

Andrew Schorr:          

Tell us some of the things you tell them to get oriented, to draw on resources, to get to the right care.

Rick Ross:                   

Well, my personal experience is that I relied on two information sources. One was LLS. And in the day, it was called marrow.org. And I became a student of my illness. And this is me. I understand it’s not for—it doesn’t work for everyone. But I figured out a way to get the information I needed, which was who I should see and where they were. And I didn’t need a medical degree to read the names of the authors of the breakthrough research. And I could find out where they practiced. And I, actually, have Dr. Goldie from Memorial Sloan Kettering to thank for telling me that my illness was very serious, and I needed to seek treatment at a research hospital. So, that sent me to Emery at the beginning. 

As my wisdom or knowledge of my illness progressed, I very quickly identified the Fred Hutchison Cancer Research as one of the leading centers of research for both my illness, what I thought my illness was at the time, MDS, and stem cell transplantation. And, thankfully, I talked my insurance company into paying for us to go to Seattle for a second opinion. And they discovered that it had transitioned to leukemia, at that point, when I flew back to Atlanta. Dr. Smith at Emory told me. And by then, I was fairly well armed. And if I could give any advice to patients who are diagnosed is, when you’re with your physician and treatment team, drink the Kool-Aid.

Not in that creepy, Bob Jonesian way, but understanding that every treatment plan has speed bumps and unexpected events. And there were a couple of things I did, to the best of my ability.  One, do what I was told. When my doctor told me to behave a certain way, to eat a certain way, to stay away from certain pills...

Dr. Nichols:                

...protect yourself. 

Andrew Schorr:          

That was when you arrived at the healthcare team you had confidence in for that illness. 

Rick Ross:                   

Yes. And I trusted them through the bad times. When they looked at each other and go, haven’t seen this before, I believed that they could figure it out. and I stuck with the team that brought me in. And I’m here to tell that story. And I’m not here to prove that every patient will survive. But I’m here as proof that you can survive. 

Andrew Schorr:          

So, Ross, you’re a super specialist and a researcher. If somebody comes to New York, the whole family, I’m sure you’ve had it where families come, they have questions. How do you feel about people asking questions? And what would you recommend, even at the less than the Memorial Sloan Kettering level where maybe there is a regional center? He talked about getting smart related to the condition. But then, that raises questions. But they don’t want to bug you. But they want to know. So what empowerment would you give to families, if you will?

Dr. Levine:                  

I mean, I’d say it’s a really important issue. I think the first thing is that, again, as you said, it’s all about having confidence in your doctor and your doctor’s team, the nurses and pharmacists and folks that work with her, and your family, and your support network. And that’s the first thing. The second thing that’s really important to understand about the center where you’re going to get your care, have they taken care of other people with a similar disease.

I think that’s a very fair question to ask right out of the gate. Is this something that you see all of the time? And if the doctor says, honestly, no, I don’t, I think it’s appropriate to say do you think maybe I should go to somewhere and call LLS and get names, or do you have names, and both, ideally. But the other thing, once you’re ensconced, when I’m taking care of patients in the hospital like last week, or somebody else, is that remember this. When I’m rounding in the hospital, I’ll be seeing 20 or 25 patients over 3 to 4 hours.  

And that means, you can do the math, but that is five to seven minutes in each patient’s room, half of which is me reporting out what we’re seeing. And you then say to the patient what are your questions. And I think what people have to remember is that that’s a very daunting responsibility for a patient and their family to be asked, okay, in these two minutes, this is your moment to ask.

And so, I tell everybody a couple of things. First thing is the most important thing you need in your room is a piece of paper and a pen or an iPad and an iPad pencil because you’re going to accumulate questions for the rest of the day. And you might as well write them down right away. And you bring out that list when somebody comes in that room. The second thing is email, call. We’re all here to answer these questions. And then, the final thing is there’s no one of us on the care team who is the only person who has the answers. Often, I know aspects of it that maybe a doctor in training who is working under me doesn’t. 

Sometimes, they know more about the newest antibiotic because they’re at the trenches 12 months a year in non-cancer related infectious disease that I don’t. So the critical thing is that you need doctors and nurses that you believe in and trust. And also, they have to be willing to say I don’t know, but I know someone who does.

And I think it’s really important to have that list every day. I tell family members of mine, when they’re in the hospital, every day, that’s your moment. And you should be preparing for that interaction. And you could always call. We’ll always come back. But that moment shouldn’t be off the cuff. You should always be asking yourself what are the things I wanted to ask. And did I ask them? And if my family members aren’t there, then, you have them write it down. Or sometimes, they’ll call their family member, and they’ll put their family member on speaker phone. Anything that gets communication out to everyone works, I think. It’s about being your own advocate. 

Andrew Schorr:          

I wrote a book a few years ago, after I was diagnosed with chronic lymphocytic leukemia, called The Web-Savvy Patient. It’s a little outdated in some of the resources, but the process is the same. And I said prepare for a meeting with a doctor like a business meeting. You have a goal. You have certain key questions you want to ask.

You want to get to a result, whether it’s understanding or a decision. Be prepared because they want to help. So, you get prepared. They’re prepared. And, hopefully, then, you can take action.

Dr. Levine:                  

Can I build on that for one minute? I think the other thing, I don’t think patients understand enough, and I don’t think doctors understand nearly enough, is that the patient’s goal and the family’s goal may be different than the doctor or nurse’s goal. My goal may be to just communicate something about the counts that day and the risk for infection over the next week. Their question may be about their diet or some other aspect or a medicine that I think there’s no question about, but they don’t understand. And so, it’s important that, actually, both parties in that interaction want to get at it.  

And I think, once we all accept that, then, we’re all on the team together. And that’s a really important aspect.

Andrew Schorr:

Get on the same page.

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 3, 2018