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Our AML: Navigating Remission Physically, Mentally, and Socially

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Published on April 13, 2021

Advice for Navigating an Acute Myeloid Leukemia Remission

"You're in remission!" You have finally heard the words you've been longing to hear. Your next doctor's appointment is in three months — three months? I'm not going to see my doctor for three months! In this segment AML patient, reporter and patient experience advocate Loriana Hernandez-Aldama and AML expert, patient experience researcher and palliative specialist Dr. Tom LeBlanc from Duke University discuss the very uncertain and emotional journey that accompanies an acute myeloid leukemia remission. Keep watching as they discuss when to contact your medical team, what your doctor needs to know about other medical conditions and why it can take some time to adjust to life as an AML survivor.

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 | Our AML: Navigating Remission Physically, Mentally, and Socially

Loriana Hernandez-Aldama: Hi, I'm Loriana Hernandez-Aldama. I'm a former news anchor and medical reporter turned AML leukemia and breast cancer survivor. Two-time cancer survivor and now I advocate through my nonprofit, ArmorUp for Life. I'm so honored to be joined by my friend Dr. Tom LeBlanc, who treats leukemia patients. Dr. LeBlanc, thanks so much for joining us today. We are talking about navigating remission physically, emotionally, socially. There's so much when you come out of this world of leukemia and you're in remission, to think about.

Dr. LeBlanc: It is just an absolutely overwhelming time and experience for patients. And we see them go through the stress and the trauma of that initial diagnosis and the uncertainty, agonizing about the right treatment decision, considering some of the real severe risks sometimes of treatment, especially the high dose treatments. And everything is aimed at getting into that remission. And then it's this amazing sigh of relief and the best news you've ever gotten when you hear that remission news. And yet there's also sometimes more treatment, or there's more uncertainty, there's the possibility of relapse. Because remission does not necessarily mean cure. But it's a step towards that for many patients. It is a challenging time to help people navigate, but a really important transition in AML care.

Loriana Hernandez-Aldama: It's a very anxious time as a patient because everything that happens, you start to see a bruise and you're like, "I'm bruising easily. How are my platelets? I'm stressed about this." How do you know, when you start to get to where you're seeing your doctor, your oncologist, every two months or three months, when to call? I remember having chest pains one day. I went to the ER and never told my doctor. And he said, "I need to know these things." I said, "Well, what does my heart have to do with leukemia?" And he looked at me like, "Are you crazy?" I said, "I didn't think about it, the cardio-oncology side of cancer." So how do we know when to reach back and be concerned?

When Should You Contact Your Doctor About Concerns During Remission?

Dr. LeBlanc: What I usually tell my patients and families to do is that, when in doubt, any questions or concerns, call. 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. Or if it is, then you won't have maybe delayed coming in and had a bad outcome, which sometimes happens. I have had patients who have not told us about a fever when they had gotten chemotherapy and their white count was low. So they had neutropenia and we know that that's a condition where you can get seriously ill and even die from a bloodstream infection if you sit at home and just pop some Tylenol instead of calling us and letting us know.

And we would say, "Go to the ER immediately. You need IV antibiotics. They'll check your blood counts, you're probably going to get admitted to the hospital. This is a serious life-threatening issue." So, we don't ever want a patient or family to not realize and to think, "Well I just don't want to bother anyone." And to stay home for a day or two and suffer a really poor outcome, especially if it could be something avoidable. So don't be shy. Always call and ask. And think about your leukemia team, your cancer care team, as being the captain of the ship at that point, of the body. So you might think, "Well a heart issue, that's probably not connected to my leukemia." But once you have leukemia, it doesn't matter. Any issue you have, you go to your leukemia team. And they will help you figure out whether it's something that they deal with or maybe they passed it on to somebody else.

Loriana Hernandez-Aldama: I will say, seven years out from my bone marrow transplant, and when people ask who is my primary care I still give my leukemia oncologist. Because we live with this anxiety, and I feel like he saved my life, I'm going to check with him for everything. And I think more patients need to break down that barrier and feel that it is okay to do that. But we also live with the stress that we feel like we're just one blood draw away from going back to where we were traumatized.

Dr. LeBlanc: Yeah. And even as somebody who sees and treats so many people with these types of diseases, I still can't even imagine what that feels like, to live with that sort of anxiety. So how do we help patients cope with that uncertainty? How do we help them and their family members deal with this new normal? Okay, I'm in remission now. What does that mean? How do I tell my loved ones about this?

What's the next step in my treatment? How would I know if things are changing, if I'm maybe suffering a relapse? What does that even look like? What do I have to watch for and look out for? And these are the normal, natural kinds of questions that everybody has. But we don't always do a great job of preparing them to go back out into the world, when maybe they were in the hospital for most of the last six months, getting all of these chemotherapy treatments. And now we're saying, "Okay, you're doing well. Come back in three months and see us in the clinic." "Three months and I'm not going to see you, and I'm not going to have a blood draw. What does that mean now? How do I do that?" But that's the normal reaction.

Loriana Hernandez-Aldama: For me, even though when my doctor would say three months, somehow my anxiety would find a way to send me back sooner. And he would say, "You can't cut the cord, you just want to see me again." Because I would have such anxiety. And I needed a reintegration program to reintegrate back with my family, with my husband, with my son and also to help me cope from the trauma. Because it really did add a burden, and I did email my doctor.

I still email him all the time this many years out, because I have questions. I'm worried, "Is the vaccine going to trigger?" "No, you're fine." I asked so many questions. And I think as long as your doctor is okay with it, and you set those parameters of when is it okay to reach out, and when is the right time, and who's somebody you can reach out to if he or she isn't available? Then I think it's great to have that open communication. Because I know when I find myself in the ER these days, and they see my history, they're scared to touch me like, "Do you need to talk to your oncologist?" So, your history follows you. It's baggage.

What Advice Do You Have for Patients Who Are in Remission?

Dr. LeBlanc: Yeah. Oh, absolutely. And it's great to have that kind of relationship where you can have good two-way communication with the cancer care team. And it isn't always that way. Or, it may look different for different patients and families in different care settings, and different clinics and health systems and such. But there always should be, and generally is, some venue through which to ask for help. To say, "I don't know about this,” or “Should I be worried about that?" To be able to call, to send an email, to send a message, to send a page. There has to be that connection.

And so any patient or family who isn't sure, you have to just ask. If I'm worried about something at 10 pm or 1 am, is there a number? What do I do in the middle of the night? Or if it's during regular business hours, am I supposed to do something different? What's the best or right way to get ahold of my team, my pit crew? And every place has those things in place. We don't really communicate it very well or effectively. So you have to feel empowered to ask, otherwise, you won't know the answer.

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