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How is Life Going to Change?

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Published on March 4, 2021

Life After an AML Diagnosis

In the seventh episode of a nine-part podcast series, Dr. Thomas LeBlanc, MD, Leukemia Specialist and Patient Experience Researcher at Duke University School of Medicine, highlights "that there will be many unexpected, unpredictable things, and you have to sort of roll with it." When first diagnosed, an AML patient often loses significant control over how they spend their time, which can affect their work, hobbies and social life. Dr. LeBlanc emphasizes that by conserving your energy and prioritizing the most important thing you want to accomplish each day, things will improve.

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 | How is Life Going to Change?

How Is Life Going to Change After an AML Diagnosis?

Dr. LeBlanc: I'm Tom LeBlanc from the Duke Cancer Institute in Durham, North Carolina. I'm a leukemia specialist and a patient experience researcher. So let's say you or someone you love has recently been diagnosed with acute myeloid leukemia. What should you expect? How might that impact a person's life, and what do you share with other people? What do you tell them? How do you guide them about what's going to be different going forward? Obviously, each person is going to have their own unique journey. Everyone's different, but we do know that once a person is diagnosed with AML, regardless of what treatment path they choose, whether it's high-dose chemotherapy plus or minus a transplant later, or if it's low-intensity chemotherapy or something like a clinical trial, we do know that most people from that point forward will spend a lot of their time in contact with the healthcare system.

Now, with high-dose treatment, you might be in the hospital quite a bit over the first few months, especially where some of those treatments can't safely be given outside of the hospital. And obviously, that's life-changing, especially when, in the COVID-19 era, people may not be able to visit you, or not as many people can visit, and that's important. But even with lower-dose therapies, where most of the time we give them in the clinic, you may have to come in every day for one week out of the month to get the chemo part of that treatment. And you may need to come in once or twice a week for blood count checks. And you may not know on that day, whether you're going to have to stay for most of the day to get a transfusion of red cells or platelets or both, or if you're just going to get your labs checked and you'll be told things look pretty good, and you can go home and enjoy the rest of your day and come back in three days for the next check of your labs.

So after diagnosis, you have to be prepared to lose some significant control over how you spend your time. And this is one of the big trade-offs in making decisions about treatments. Some of the treatments that are most likely to help you get to remission may be the most difficult in terms of symptoms, or where you receive them, like a high-dose chemotherapy being given in the hospital. And these are the sorts of trade-offs you have to weigh.

What Are Some of the Unexpected Aspects of AML Treatment?

But as you think about what to tell the people who you care about and who care about you, about what to expect for life going forward, one of the key messages is to highlight that there will be many unexpected, unpredictable things, and you have to sort of roll with it. And most importantly, have those people on your team and in your court to help you get to those appointments, or maybe to bring you some changes of clothes when you didn't know you were going to end up in the hospital that day and we tell you, "Sorry, you have to come in because your white count is low and you have a fever, and this is just something that happens sometimes when you're getting an acute myeloid leukemia treatment."

So having people to help you with the unexpected and knowing that you are going to spend a lot of time in the clinic and in the hospital is really important. And that usually also means that most people aren't feeling up to doing a lot of what they used to do, at least when it comes to things like work. So most people do need to take time off work temporarily, sometimes permanently, depending on how things go or what the plans are, and depending on what the treatment looks like, too, how well tolerated it is, and also what the results end up being. But it is a challenging situation.

You also have to recognize that just as maybe you can't work full-time anymore, at least for the period of treatment, you may also not be able to do some of the other hobbies or spend time with people in the amount, the duration that you might have liked to do before. And that means planning to conserve your energy a little bit, thinking about how you want to spend the day, what's the most important one or two things you want to get done today, and then schedule them in a way that you know you're going to be at your best at that time. Strategically nap beforehand or afterward. These types of strategies are things that we've heard from many patients can be really helpful.

And actually, these are also a part of what's recommended by international guideline panels about how to manage cancer-related fatigue or treatment-related fatigue when you're getting chemotherapies and targeted therapies.

And I know this may sound really scary and daunting, but remember you are not alone in this, and it takes a village to manage AML care. It's not just you. Your entire cancer care team is there with you, from the physicians to the nurse practitioners, the physician assistants, the nurses, the chaplains, the social workers, the pharmacists, and everybody else that's part of that care team, are all part of your team now. And our job is to help you and your family each step along the way. And we'll be there no matter what happens to get you through it.