Coping with Acute Myeloid Leukemia
A diagnosis of acute myeloid leukemia (AML) can leave patients and their loved ones feeling uncertain, anxious and overwhelmed. Patients have important treatment decisions to make, emotional concerns to manage, and insurance and financial paperwork to organize, among other practical concerns.
One of the many sources of information and support for people coping with AML is CancerCare, the leading national organization providing free, professional support services and information to help people manage the emotional, practical and financial challenges of cancer.
Real World Health Care recently spoke with CancerCare‘s Christine Calafiore, MSW, LSW, an oncology social worker who provides counseling to people coping with cancer. She shared advice for those newly diagnosed with AML and highlighted the services CancerCare offers to the AML patient community.
Diagnosing AML Can Be Challenging
Real World Health Care: Why is AML sometimes difficult to diagnose?
Christine Calafiore: Many of our clients go to the doctor complaining about pain, fatigue, abnormal bleeding and bruising. These are symptoms of several different conditions, and it often takes multiple rounds of tests, scans and even misdiagnoses before the final diagnosis of AML is reached. That process may take even longer if the patient is not in the typical age group for AML, or if their primary physician doesn’t have much exposure to patients with AML.
Start a Dialogue with Your Care Team
RWHC: What is your advice for people who are newly diagnosed with AML? What type of questions should they ask their care team?
CC: The mind can go blank when first hearing the diagnosis of leukemia, especially since there are several different types of leukemia with a confusing alphabet’s soup of acronyms: CLL, AML, ALL. That’s why it’s a good idea to schedule a follow up visit where you can ask questions. Write down your questions ahead of time and bring a notepad to capture the answers so you can refer to the details later. You may also want to bring a friend or a loved one to that session for support and to ask questions you might forget.
During that information-gathering visit, ask about any biomarkers, genetic markers and mutations you can be tested for to help guide your treatment options. Ask what type of treatment options are available and which of the available treatments your care team recommends. Find out how long the treatment will last, what the typical (and atypical) side effects are, including short-term and long-term physical and emotional side effects. Ask how the diagnosis and treatment might impact any other health conditions you have and vice-versa. Younger patients will want to ask how treatments may affect their fertility.
Make sure you know the roles and responsibilities of everyone on your care team and how various care team members can provide support during and after your treatment. Whom can you call on a Saturday if you’re having an unexpected side effect?
Confirm that your treatment team is in your insurance network and ask if anyone involved in your care is out-of-network. For example, if you need surgery, your surgeon may be in network, but your anesthesiologist may not, and you may end up getting charged unexpected fees. Speak up about your need for financial counseling or assistance to help cover the cost of treatments, travel to and from treatments, child or dependent care, nutritional supplements and ancillary support. Your treatment center may have in-house resources to help with this, or they may refer you to an outside resource like CancerCare.
Be Ready for Potential Lifestyle Changes
RWHC: What sort of restrictions or lifestyle changes should people with AML expect during and after treatment?
CC: Restrictions will likely vary based on the severity of the diagnosis and the type of treatment you’re receiving. Before you start treatment, your care team should provide guidance about social distancing in public and with loved ones, how to protect yourself from germs, accommodations you may need at work or school, and recommended nutrition and exercise.
Prepare for your normal routines to be interrupted. Establish a support network among friends and family members – people who can help you with things like grocery shopping, mowing your lawn, ferrying your kids or grandkids to and from school and activities, or walking your dog. Make sure those support people are right for the job. For example, it may not be realistic to ask your 9-to-5 working relative to pick up your kids from school every day at 3pm.
Set up delivery services for food, household goods and pet supplies. Keep foods on hand that are easy to store and prepare. Try to have a variety of foods on-hand so you’ll always have something to accommodate changing taste buds.
The oncology social workers at CancerCare can help you think through all of these issues and provide guidance on how to navigate the inevitable changes in your life and the lives of your family members.
RWHC: What can the patient’s friends and family members do to help them navigate these lifestyle changes?
CC: Friends and family members should be ready for their loved one to experience changes and challenges before, during and after treatment. Their energy may lag. Their mobility may become restricted. As mentioned earlier, they may need assistance with tasks they’ve done easily before – even the day before – because they need to rest and save their energy for tests, scans and treatments.
Assign a primary caregiver to set up an online Google document, or take advantage of the tools at My Cancer Circle, to organize and coordinate meals and help among the larger friends-and-family support group. These tools also make it easy to share treatment schedules and other information about what’s going on with the patient, so the primary caregiver isn’t overburdened with providing individual updates.
Accessing AML Support Services
RWHC: How does CancerCare support the AML community with services and resources?
CC: CancerCare serves the entire cancer community with a number of resources. Our toll-free Hopeline at 800-813-HOPE (4673) is staffed Monday through Thursday from 10 a.m. to 6 p.m. ET and Friday from 10 a.m. to 5 p.m. ET. Through the Hopeline and our web site, our oncology social workers provide individual and group support, practical information and other resources.
We start by gathering information about the patient’s diagnosis and location so we can start matching them with services in their area. We provide case management, educational information and workshop opportunities for caregivers and other special groups, online and in-person support groups, and for patients in some locations, individual counseling. We also have a Pet Assistance & Wellness (PAW) Program that offers advice on how to care for one’s pet during cancer treatment, reduce risk of infection from pets and find local support programs. Plus, we offer special programs that provide socialization and support for seniors, including an online book club and a pen pal program.
When CancerCare can’t directly meet the patient’s needs, we will provide referrals to other organizations that can help. Our goal is to make sure that people living with AML and other cancers feel prepared for their treatments and have the right support systems in place.
A Message from Our Sponsor
The HealthWell Foundation offers an AML Fund that provides up to $10,000 in annual grants to help cover the costs of treatment copays or insurance premiums.