Dr. Irum Khan of Northwestern University Feinberg School of Medicine offers practical, real-world guidance for patients newly diagnosed with AML. She explains the key questions that help patients understand their diagnosis, treatment plan, and key questions about what life may look like during and after therapy. Dr. Khan also highlights the importance of bringing a support person, revisiting questions over time, sharing personal or social challenges that may affect care, and engaging with your clinical team openly.
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Transcript
Lisa Hatfield:
Dr. Khan, AML treatment often requires immediate intensive therapy with complex regimens that can be overwhelming for patients and families. What specific questions should newly diagnosed patients ask their care team to ensure they understand their treatment plan and can actively participate in decision-making during this time-sensitive period?
Dr. Irum Khan:
That’s a great question, everybody copes with a new diagnosis of leukemia differently, and everybody’s coming from a unique set of circumstances. So there’s no one magic [ACT]IVATION tip here. But I think that some of the questions, or the group of activation tips I’ll put forward is: try your best to understand the diagnosis, and when you are ready, the prognosis, because everybody’s ready at a different time, nobody wants to hear everything in one go. Most of it will sort of just go over. But I think that taking notes, going back to your notes, you know, patients with acute myeloid leukemia, especially new diagnoses, are often in the hospital. They have some time, you know, they can think about things when the doctor leaves the room.
Always having two sets of ears at least, because what you may not be thinking about your family member or loved one will be thinking of. And encouraging, for the physicians, encouraging them to take notes and think about things and revisit questions the next day. I think understanding what the realities of it are one of the questions that could be asked is: What will my life look like during treatment and after treatment? And that may help you to kind of frame what you need to do and how you need to think about things, and your other competing responsibilities as a patient and a caregiver.
And I think, you know, the prognosis part of it, not everybody wants to hear it, and not every physician will want to share it, because they want to elicit how ready you are. But sometimes there may come a point where you really need to prioritize goals, and then asking for your prognosis when you feel ready and you want to prioritize goals is a very important thing that, you know, your family member, you can ask.
And I think the last thing is that a lot of patients hold back on some of the details of their social barriers to care. And I think that they should not hold that back or leave it for a social work discussion. It’s just as important for your physician to know that, you know, you have a special needs child at home that you cannot leave, and so we’re not going to give you something that is going to hold you in the hospital for a month, or maybe we’re going to think about how to do this and help you plan better.
So the success of your treatment is really a mutually determined outcome, and so I think the more you can be transparent about your circumstances and you and your family kind of speak openly about that and when I speak about social situations, everybody’s are unique, whether it’s responsibilities to children, whether it’s insurance, whether it’s you losing your job, whether it’s immigration issues. You know, the physician is the person you need to let know, because they will then use their interdisciplinary resources to help you.