Strengthening Your AML Care Team: Questions to Ask Your Doctor
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Published on August 21, 2019
What questions should acute myeloid leukemia (AML) patients ask to learn more about their treatment path? From newly diagnosed to later stage disease, experts Dr. Uma Borate, from the Oregon Health & Science University, and Amanda Fowler, from The Leukemia & Lymphoma Society (LLS), provide some topics for patients to bring up with their doctor. The panel also shares ways to get more information on clinical trials and eligibility.
This is a Patient Empowerment Network program in partnership with The Leukemia & Lymphoma Society produced by Patient Power. We thank Celgene, Daiichi Sankyo, Jazz Pharmaceuticals and Novartis for their support. These organizations have no editorial control.
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Transcript | Strengthening Your AML Care Team: Questions to Ask Your Doctor
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:
Amanda, what questions—I know it varies by where somebody is in their journey with AML, but what questions do you suggest to people that they ask their doctor or a new center that they go to so that they or mom or dad get the right treatment?
Amanda Fowler:
Sure. I think that's actually a big part of what we do in the Information Resource Center is talk to patients about what to ask the doctor. We can't always answer their questions, particularly specific medical ones, but we help them get ready to write that list out to what's most important to them.
It really does depend on the phase of where they are on their treatment, but an important question, something that Dr. Borate alluded to earlier, is what the goal of treatment is. Is my goal curative, or is my goal to extend my life for as long as I might be able to? Because people are on that borderline sometimes of fit and unfit, and they need to understand which type of drugs the doctors are prescribing for them and why.
And then of course the question of am I a transplant candidate, why is why not? I encourage people to ask why because they may think I'm a great candidate and the doctor says well, actually you know, your cardiac function is very poor and you won't be able to survive a transplant. I think it's good for peace of mind to understand the reasons doctors are making these decisions for them.
Andrew Schorr:
Amanda, what about second opinions? So even if you're in a major city there could be one big hospital over here and one—I think like New York. There are more than one NCI cancer center. So what about that? What do you tell people about that?
Amanda Fowler:
Absolutely. So AML can be unique in that sometimes there isn't a chance for a second opinion upon diagnosis, right? Sometimes they go in and they need to start chemo right away. But generally there's next phase. There's a maintenance phase or there's a transplant phase. Great time for a second opinion. I'm a huge believer in second opinions.
With the way treatment is evolving there's options now. Really there used to be, like we said, for 40 years there was one option. Now there's many, and so you want to be sure that you're comfortable with your choice, comfortable with your physician because this is going to be a long journey. No matter whether you have transplant or not this is something—it's a long relationship, and so we encourage you to call us and we can help guide you to those centers of excellence. Even if you're at one you may want to talk to a second one as well.
Andrew Schorr:
Okay. Dr. Borate, you are a specialist so you're at a center of excellence. But how do you feel if somebody or a parent or family member says, you know, we're going to go over here and see what they say. Are you okay with that?
Dr. Borate:
So I think any physician or provider who takes care of patients should really be okay with that, because we're all in this for the same reason and that's to make our patients better and hopefully cure them. And I think the way we get there shouldn't be something that you worry about what one person says versus the other. So absolutely.
I do agree with Amanda that sometimes for AML, and fact a majority of times for AML when the diagnosis is made time is of the essence, so unfortunately sometimes our patients don't have the luxury of being able to go for a second opinion or get a second opinion simply because they're so sick. They're in the hospital. Their disease needs to be treated right away.
But I completely agree, once that first step is done I think taking a pause, talking about different options with your current physician and then saying, hey, do you mind if I go to the next center? So, for example, we're close to Seattle or California. Just taking a flight and having a conversation and usually the second opinions really reassure the patients and the caregivers that they're on the right track, and so they can come back to their original center and continue their treatment.
The one caveat I have to a second opinion before starting therapy—or after starting therapy, rather, is once you've already received a therapy for AML you may not be eligible for a clinical trial for newly diagnosed AML patients. So we do have patients that come to us after having several cycles of therapy and then want to participate, and unfortunately the way trials are designed you want to get all the information right from the beginning, and so that's when you enroll on a study when you're starting your treatment.
With that said, I mean, it is what it is sometimes just because of the rapidity of the disease and the symptoms, but that is if you're considering a clinical trial very strongly you may want to go to a center of excellence sooner rather than later.
Andrew Schorr:
One other point I want to make about clinical trials, because I've been in two, and about second opinions actually, is don't drive yourself crazy. Dr. Borate, and maybe you go to another center, you go to Seattle up the road or California down the road. And then you say oh, no, now I'm going to the Mayo Clinic, and then I'm going to Northwestern, and then I'm going to New York, you will go crazy, and you will probably start hearing the same thing, right? As well as you went through a lot. So pick a team.
Amanda, any comment you want to make about that? Because I'm sure you have people, they're very stressed out.
Amanda Fowler:
I agree. There is a number of second opinions that's too many. But I also wanted to say on the clinical trial piece we at LLS have a wonderful service called the Clinical Trial Support Center that can help you find those trials. It's a team of nurses who do individualized trial searches for people.
Sometimes that can help inform where you go. If you're debating between California and Seattle and our nurses narrow it down and say, you know, there's a trial in Seattle you could be interested in, it might help inform where you actually go for your second opinion. And you would reach them the same way you would reach me, through the Information Resource Center.
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.
