Published on February 7, 2019
How can patients cope with the complex set of emotions that accompany an acute myeloid leukemia (AML) diagnosis? How does emotional distress influence quality of life? With an AML diagnosis every aspect of one’s life is affected. Watch this video to understand the role patients and their loved ones can play to receive the best care. We discuss how to manage the emotional impacts of this condition with leading AML experts and an AML patient.
Patient advocate James Bond is willing to connect with any patient needing support or information. Patients can contact him at Jim.firstname.lastname@example.org.
This is a Patient Empowerment Network program produced by Patient Power in partnership with The Leukemia & Lymphoma Society. We thank Astellas, Celgene, Daiichi Sankyo, Jazz Pharmaceuticals, and Novartis for their support.
Transcript | Coping With the Emotional Side Effects of AML
Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.
Hello, I'm Beth Probert, and I am a patient advocate and ambassador with Patient Power. I am also an MPN patient. Thanks for joining us for this Patient Empowerment Program in partnership with The Leukemia & Lymphoma Society. Today, our program is Coping With the Emotional Side Effects of AML, and we are joining our AML community.
We're gonna focus on where we're headed with treatment of acute myeloid leukemia—what patients can look forward to in the coming year.
We will also answer questions that you can submit to AML at patientpower.info. And please note that we cannot provide specific medical advice over the internet. And it wouldn’t be fair to you. We always recommend that you seek care from your own doctor or AML specialist, and that's how you will get the best treatment for you.
I'd like to start now and introduce our panel.
And we'll start off with Dr. Thomas LeBlanc, a medical oncologist, palliative care physician, and patient experience researcher from Duke Cancer Institute. Welcome, Dr. LeBlanc.
Hi, thanks for having me.
And I would like to introduce Michelle Rajotte. She is the Associate Director of The Leukemia & Lymphoma Society's Information Resources Center. Michelle has been with LLS for 13 years. Hi, Michelle.
Hi, good to be here.
Thank you. And last but not least, I'd like to introduce our patient advocate today, James Bond. And James has survived multiple myeloma for 27 years, and AML for the past 7 years. James and his wife, Kathleen, have shared their story in 29 states. And patients can contact him directly at his email, which is Jim.Bond48@gmail.com.
So, thank you for joining us today, Jim.
Happy to be here.
Great. Well, Dr. LeBlanc, I would like to start with you. Tell us a little bit about your background in AML and palliative care, please.
Sure. So, by training I'm an oncologist, but when I went through my cancer care training, I realized that oftentimes we fail to really attend to some of the issues that are most important to patients and families. And those might be things related to symptom burden, quality of life, emotional well-being, communication, understanding of prognosis. And so, I ended up pursing additional training in palliative medicine where those types of issues really are the focus. And in doing so, got a sense that really adding specialist palliative care to cancer care and blood cancer care particularly, really could improve many aspects of the experience for patients and families.
And ultimately that is what my clinical practice and research have come to focus on. But in my clinical practice, I largely see patients with myeloid malignancies, including acute myeloid leukemia and some related conditions.
That is so interesting and very unique, because very often we see our doctors and we don’t get the whole palliative side of it. So, I can honestly and personally say that that is just a wonderful added bonus. Thank you.
And, Michelle, can you tell us a little bit about your role at LLS, and really what the goal of the information resource center is?
Sure. So, I'm part of the Information Resource Center at Leukemia & Lymphoma Society, which, The Leukemia & Lymphoma Society's main goal is to help find a cure for leukemia, lymphoma, Hodgkin's disease, myeloma, and improve the quality of life of all patients and their families.
And IRC is a part of that. So, basically, what we do is—it's staffed by information specialists who are master level, either social workers, nurses, or other healthcare professionals who've been trained in blood cancer. And we can do anything from answer questions, provide disease information, help with clinical trial searches, find different support resources, refer to other organizations if we need to for other resources. But really, it’s anything that someone needs in the moment.
So, we'll talk with them over the phone, through email, or through chat online, and we figure out what it is that they need based on talking to them, or whatever they provide to us. And then, provide them with the resources and support they need.
Wow. And that is just invaluable. And we definitely need to bring focus to the cancer patients and what your department could ultimately provide to them. Thank you.
So, Jim, you are a long-time survivor. How has your cancer diagnosis impacted you emotionally?
Well, it's been like riding a roller coaster. My caregiver wife, Kathleen, Kathleen is sorry she can't be joining us today. But the lowest point, of course, was getting diagnosed with a deadly incurable blood cancer. My first one, multiple myeloma. And then the second one, AML, many years later.
And so, what we tried our best to do is, to try to even out that roller coaster ride emotionally. And, I'll give you an example, after 10 years of dealing with myeloma, I was told, Jim, there's nothing left that can help you, you need to go to a hospice. And that was obviously crushing.
And what we tried to do is pull each other up and say, "Look, we've been through tough spots before." And we figured out that just rely on the doctors, rely on our own research ability, and they’ll be something coming up. And we were able to figure out, hey, there's a clinical trial that was mentioned to us, and within a month of being told to go to a hospice, we were out of town in a clinical trial, and within two weeks, I was told, "You're in remission."
So, that was a tremendous high. And again, what we try to do when we get really good news is pull each other down and try not to be so excited, but we try to even things out. And that's very difficult to execute, but for 27 years now, we've had a good deal of experience. There are a few other tings we do emotionally, we say, "Look, let's do all we can, and then let's not look back and second-guess ourselves."
And even to make it more normal, we cut off all cancer discussions with ourselves, ideas, or with a family member at 8:00 p.m. our time. We say, "You know what? Let's just do what we're gonna do at night, and let's defer that to the morning." That tends to let our emotions calm down and let us live more normal lives—at least in our minds.
It has not been easy. It's been very difficult and emotionally at times, we've actually played a role of trying to lift up the medical team who, the AML diagnosis in particular, they explained to me, "Jim, you're 64 years old," When I got AML, that was seven years ago. They said, "Your chances of survival are not good. The only way you can live is through a fourth bone marrow transplant. And this one has to be not from your matching sister, but from an unrelated donor, if we can find one."
So, they really encouraged me to consider just hanging up, but our approach, and this helps us emotionally is, no, we’re gonna treat this thing called cancer like a problem. We're gonna put it in front of us, and we’re gonna deal with it as analytically, or unemotionally as we possibly can. And lo and behold, the doctors, as they'd come around in my, I don't know, 10-week stay in the hospital, whatever it was, they would keep trying to say, "Jim, don’t get your hopes up. This might not work out."
And it did work out, and we found ourselves much better off by, I do my favorite thing, and that is, I make myself exercise each and every day. And sometimes that exercise is not much, it's walking with my IV pole around the floor section when doing a transplant.
Or it's walking on my treadmill on snowy icy Ohio days like today. But that helps me emotionally, because it gives me something that's not cancer, it's quiet time to think, and it really led to something that’s been just magical in terms of helping both of us emotionally.
When I had to leave town to do the clinical trial, my wife, Kathleen, got to thinking as a long-term volunteer of the American Cancer Society, she realized that there are not enough people in the country aware of these things that the ACS has called, "Hope Lodges." So, she founded, launched, and leads, to this day—this was 13 years ago, she launched the first one. And I was not a cyclist, but I saw a link between the exercise that I think is so vital for me emotionally and physically, and this bike ride. So, I decided to buy a bike and trained. And I'll be darned, I've ridden it every year four days, 328 miles from Cleveland to Cincinnati.
Wow, well that is really inspiring.
Thank you. And that helps me tremendously emotionally because that training and riding takes up a good three-and-a-half, four months of my year, and I look forward to that, and the fundraising is tremendously exhilarating, because I get to hear from people that I don’t hear from that often.
So, the key there is emotionally, I think, is just having a long-term plan, and not letting…
…and, Jim, I'm just gonna jump in really quickly, this is amazing information. So, hold that thought, we are going to jump on some of the thoughts you said, and I do want to say really quickly, I love the "we" in that. We.
And we'll click back onto that. So, I'm gonna hop over now to Dr. LeBlanc. And could you go through, with your vast experience, what are the key emotional side effects that you see your AML patients facing day to day?
Yeah, this is such an important question, and it's one that we don’t ask often enough, and we don’t talk about these issues very often, unfortunately. So, I'm really excited that we're having this webinar, first of all. And I'll tell you, it's important to recognize as well, every patient, every person is different. So, there is not one quintessential AML experience. That's really important to recognize.
But at the same time, when we have studied this issue and interviewed patients, and care givers, and family members, there certainly have been some common themes that have come through about people's experiences. And one of the one that is, I think, particularly important to recognize is the sense of shock at this diagnosis. Now, acute leukemias, we call them acute, because they tend to come on very quickly and suddenly.
And many of the patients we see will say things like, "I was fine three weeks ago. And now I can't even walk up a flight of stairs." And, "I'm so tired, I'm taking naps, this is not like me. I usually run marathons, and now I can only run a couple miles, something is going on." And this really degenerates, for many, people over the course of day or a few weeks.
And sometimes it means they end up urgently in the hospital and are told, "You can't leave. Something's going on, we don’t really know what it is, but we're concerned. You might have leukemia." And if they're not at a large medical center, they may get shipped off hours away from home to a place that's not familiar where they don’t know anyone.
So, that shock and suddenness of the diagnosis makes everything else much more difficult, and it sometimes creates, even, social isolation related to where AML is treated. Where it tends to be treated more so at academic centers than it is in the community, although, certainly, some of these treatments are provided in the community.
But patients getting high-dose therapies do tend to come to large research centers. So, we've certainly seen that issue impact many patient's experiences. The other one that comes up quite often, that really compounds the decision-making and the emotional difficulties, is the issue of uncertainty. So, unlike many cancers, we really don’t know what to expect when a person is diagnosed with AML. And everyone asks, "Well, what stage is this?" and we don’t really have stages for this disease.
We, certainly, have ways that we can try to get a sense for what we might expect for the patient who's sitting before us. And we do all kinds of fancy testing, and we talk at length about those issues, but at the same time, we really can't say what's going to happen to you, my patient sitting across from me who I'm trying to help guide through the process.
And there are actually a lot more risks associated with leukemia treatments as you heard Jim talk about. A stem cell transplant is a difficult and risky process, and sometimes that's part of curing AML, or hoping to cure AML. But even high-dose chemotherapies in the hospital, some people actually do have really difficult complications, and even can die from those treatments, and yet, those are the treatments that usually are required to cure a person.
So, we have to have these difficult decisions made sometimes under a lot of distress emotionally, and amid the suddenness of this diagnosis, where we say, this is probably the best treatment for you, and it gives you a chance at cure, but it's not a guarantee. And some people end up not making it out of the hospital. And usually what happens is, that's just such difficult information. Many folks shut down and they say, "I don't know, what should I do. Tell me what to do."
Or they'll turn to a family member or a friend who might or might not be around and available during that difficult time, especially if they're in another city away from home. So, these are some of the things we'll commonly see when patients are newly diagnosed with AML.
Wow. That is very intense. And there are obvious emotional connections. And sometimes we hear someone's diagnosed, and we completely forget that emotional side. So, I wanted to ask you, as well, you’ve been involved with research into the relationship between the emotional stress in AML patients and the overall prognosis. Could you please explain how the study was conducted, and what were some of the prevailing results of this study?
Sure. So, we did a longitudinal study of patients with AML who were being seen and treated on our in-patient service. So, these were mostly patients getting high-dose chemotherapy who would be stuck in the hospital for a month or even a bit more.
Like Jim described, getting these really intensive treatment regimens. And this was a study basically aimed at helping us better understand what people go through when they live that. And certainly, I've seen that in caring for many patients with AML, as have our nurses, and other members of the cancer care team, but actually, there has been very little formal, objective study of the patient experience with AML and related blood cancers.
So, what we did is we actually surveyed patients using validated instruments, and we assessed their symptoms, their quality of life, their overall distress levels, and in addition, we assed their understanding of their illness. Their understanding of what we call, "prognosis," The idea of what the likely outcome of the treatment or the disease is going to be. And we did all of those—that whole battery of assessments every week when they were in the hospital, and then when they were out of the hospital, we did that every month.
And we followed patients for six or even upwards of 12 months, and different things happened. Some people went into remission and were cured, some people had relapses, some people went into transplant, some people had transient remissions, or even multiple relapses, got additional treatment. And by following patients over time, we were able to develop a profile of the patient experience with AML and look at different versions of that. Including, what people understand about their illness, and how that relates to their overall emotional well-being.
That is amazing. And was there something that just jumped out really quickly as far as the largest response rate you saw when people were taking care of that emotional part?