Published on May 19, 2021
Preparing to Talk to Your Doctor About AML Treatment
When Loriana Hernandez-Aldama was diagnosed with acute myeloid leukemia (AML), she was stunned. The Emmy Award-winning journalist had to send her then two-year-old son to live with extended family in Atlanta, Georgia, so she could seek immediate life-saving treatment at Johns Hopkins University in Baltimore, Maryland. Hernandez-Aldama was hospitalized for a year.
“Within 48 hours of my diagnosis, I had chemo running through my veins,” she said. “There's not a lot of time to really think [when you are diagnosed with AML].”
Five years later, and just two days after celebrating a successful bone marrow transplant, Hernandez-Aldama learned she had breast cancer. The diagnosis was devastating. After a long treatment journey, which included a double mastectomy, she is in remission for both. The two-time cancer survivor is now a dedicated patient advocate who shares her story to help others. She is especially passionate about access to mental health services for people living with cancer.
“The psycho-oncology side is one of the biggest voids [in cancer treatment],” she said. “Even though I was at a well-respected institution with incredible doctors and I'm alive because of them, the biggest void was the psycho-oncology. I would always say, ‘If you can't give me the mental state to stay in the game, you're going to lose me. I don't need a therapist to stop by my room for five minutes. I need an hour.’”
Hernandez-Aldama recently hosted a three-part Patient Power: Our AML series with Thomas LeBlanc, MD, a medical oncologist, palliative care physician, and patient experience researcher at Duke Cancer Institute in Durham, North Carolina. In addition to precision medicine, clinical trials, and the importance of having a holistic oncology team — one that includes a mental health professional — the pair discussed patient-doctor communication.
“What I usually tell my patients and families to do is, when in doubt, any questions or concerns, call,” Dr. LeBlanc said. “That's why we're there. We give you the triage phone number, you call, somebody answers 24/7. And they can tell you if it's not something you should worry about.”
Dr. LeBlanc also advises his patients to be clear about what they need.
“Encouraging patients and families to be more direct… to not just say what the issue is, but to ask for something specific, forces the cancer care team to respond. For example, to say, ‘I'm having a lot of difficulty with anxiety, and I think I need to talk to somebody. Who could you get in here to talk with me specifically about this problem?’ That makes it much more concrete. And then the clinician is thinking, ‘Can I call a consult? Is there a family therapist here?’”
As Hernandez-Aldama shared, AML is an aggressive disease. Patients are often faced with rapid decision-making to get the life-saving treatment they need. However, even when time is of the essence, patients must understand the choices they are making.
If you have been diagnosed with AML, take a moment to pause and ask your oncology team about the varied treatment paths ahead of you. Precision medicine and new therapies are providing better outcomes and quality of life for patients with AML, but it is critical to ask questions so you can choose the best path for you.
“You have to feel empowered to ask,” Dr. LeBlanc said. “Otherwise, you won't know the answer.”
Questions to Ask During AML Treatment
What can I expect during treatment?
- How will the treatment be administered?
- How long will each session take?
- Can I drive myself to the appointment, or do I need someone else to bring me?
- How many sessions will I have?
- How much time will I need to take off from work for treatments or because of side effects?
What side effects should I expect?
- How often should I tell you about side effects?
- Can you prescribe other medications to manage the side effects?
- What can I do to ease the side effects on my own?
When should I contact you if I have concerns?
- What’s the best way to get in touch with you?
Who else will be a part of my healthcare team?
Who can I talk to if I’m feeling anxious or stressed during treatment?
- A palliative care specialist?
- A psycho-oncologist?
- A family therapist?
Will I need additional diagnostic tests?
- Which tests and when?
Can I exercise? Should I exercise?
Do I need to eat a special diet?
How will we know the treatment is working?
How will we know I am in remission?
What are my options if the treatment doesn’t work?
What is the best way for my family and friends to support me during treatment?
Are there support groups that I can join?
Is there anything else I should know?
To learn more about AML and how to communicate with your medical team, watch Our AML: The Importance of Partnership.
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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