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What Are Reasonable Expectations for My Future?

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Published on March 4, 2021

Setting Reasonable Expectations as an AML Patient

In the ninth episode of a nine-part podcast series, Dr. Thomas LeBlanc, MD, Leukemia Specialist and Patient Experience Researcher at Duke University School of Medicine, emphasizes the importance of focusing on the goal that's right in front of you: remission. For some AML patients remission and a cure are likely outcomes; for others, disease control and a focus on prolonging and maintaining the quality of life is the path forward.

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

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Transcript | What Are Reasonable Expectations for My Future?

Dr. LeBlanc: I'm Tom LeBlanc from the Duke Cancer Institute in Durham, North Carolina, and I'm a leukemia specialist and a patient experience researcher. Many of my patients with AML and their friends, families, and caregivers will ask us, "What should I expect for the future? What does the future hold for me?" And it is the most important question for anybody facing a serious illness like AML, and yet it's also a question that we can never really answer for sure for that person. But what I have found over the years is that there is so much information to digest shortly after diagnosis, and so much of a need to focus on treatment options and treatment decision-making and where the treatment's going to be received and what sort of support you have available and what support you need, that it's too much to think too many steps ahead.

As an AML Patient, How Do I Set Reasonable Expectations for My Future?

So as much as I want to be able to tell people exactly what's going to happen, I still don't have that crystal ball that I wish we all had where we could forecast the future. And I know that we have to focus more on the first step and on the present and get people through that first, before we can really talk about what comes next and to know better what we might expect. So I really encourage people to think about just that first treatment decision and to focus on each day towards the goal of remission. That's what the first treatment is all about. And whether it's high-dose chemotherapy, or whether it's a low-intensity treatment, or maybe even a new targeted therapy, the goal is to control the disease to get you feeling better. To improve the blood counts, and ultimately to get rid of most of the leukemia in the bone marrow to the point where we would say, "That looks like a remission."

So now what does that mean? Now what are the next steps? And it really diverges so much from there. Some patients, we expect a very high likelihood of cure with just chemo, but it might be really high doses of chemo. And we might not even need to talk about something like a transplant. On the other hand, for some patients, no matter what we give, high-dose chemo, low-dose chemo, anything in between, there may be a very low chance at cure and the hope may be more around controlling the disease, prolonging life. But most people with AML are somewhere in between, and we have uncertainty. There might be a chance at cure. It might be more about disease control and longevity. And we really don't know, especially until we see if that first remission can be achieved with the treatment that we give.

You have to be prepared that there will be some sort of a new normal, but that we may not actually know, and we may not really be able to guide you too much about that until we see how you do with that first line of treatment. How well you tolerate it, and also just in general, how well it works. And then we figure out the next steps together. So it's really important to ask your cancer care team, "What are the goals of this treatment? What's it going to feel like for me, and what should I expect for the future, for my future?" But recognize that when we don't fully answer that, it's not because we don't want to, or because we're dismissing it. It's often because we're not really sure, and because we may need to really help you focus on the shorter term and getting through that first treatment first — hopefully get you to that remission — and then talk more about what that means from there.

Is the AML Treatment Landscape Heading Towards A Cure?

As somebody who sees and treats many patients with AML, I wish nobody had to face this disease. At the same time though, I know that this is the best time in history to be dealing with this disease if you have to be. There have been more treatments approved for AML in the last three years than in the prior decade, really than in the prior two decades. And the outcomes that we are seeing now with some of these new treatments are just completely unprecedented. Not everyone will be cured, but the outcomes are improving pretty dramatically with these new treatments.

And I have many patients who are on the other side as leukemia survivors, living their lives now and figuring out what that new normal looks like and means. And for many of them, actually, it doesn't look too different from what things were like before their diagnosis. And for others, it does. Everybody's different, but there is a lot of reason to be hopeful about AML treatment in this day and age. So know that there are many different options. It's important to learn about them all, to see a specialist, to get the most cutting-edge sophisticated care that you can, and to have hope about how that is going to go, and to know that your cancer care team is with you each step along the way, regardless of what happens.