Find Support for Acute Myeloid Leukemia

Acute myeloid leukemia grows fast, which makes everything move fast. You might start targeted drug therapy soon after your diagnosis, quickly followed by hospital stays for intense rounds of chemotherapy.

That can pack a lot of emotions, information, and decisions into a short amount of time.

Good news: you can find help fast, too. Here's info for support at every stage of the process.

After Your Diagnosis

Every diagnosis is different, but what to do next is the same:

Draft your health care team. Along with your medical professionals, make a list of go-to family members and friends, a counselor, or a social worker and someone who can offer religious or spiritual guidance.

Get to know your experts. Doctors. Radiologists. Oncologists. Nurses. Pathologists. You’ll have many specialists by your side during your treatment. Understanding their roles can help you get the best care you need.

Understand your insurance. What’s covered and what’s not? Call your insurance agent or the number on the back of your insurance card for a full explanation of your deductible, network of providers, out-of-pocket costs, etc. Better yet, delegate it to someone you trust.

Educate yourself. Tap into cancer advocacy groups like CancerCare. Many have links to free online workshops, podcasts, and articles, plus stories from other people who share your experience.

Write it down. It’s normal to have a lot of questions. Jot them in a notebook to make sure you’ve covered every base. Write down the answers during your appointment so you can check back if you forget something later.

During Treatment

Find rides. You likely will have many medical appointments. Accept help from family and friends to drive you. But if you don’t have a ride or can’t drive yourself, check into local groups that offer free transportation.  The American Cancer Society’s Road to Recovery program can match you up with a volunteer driver. Call 800-227-2345 to see if you’re eligible and to book a ride.  

Cover costs. Cancer can be expensive: Co-pays and days off work for treatments add up quickly. Many nonprofits have programs to help with everything from meal delivery to home care. Plug your diagnosis, ZIP code, and assistance needs into CancerCare’s Helping Hand Online Financial Resource Database to find local and national groups.

Continued

After Treatment

Home recovery. Home health care kicks in if you need medical after you leave the hospital. Ask your doctor for suggestions and find out what your insurer covers. Other good resources include your state and local health departments and the National Association for Home Care and Hospice (NAHC).

End of life. AML remission rates are getting better. But some people may need hospice care if they’re not likely to recover. You may have several hospice groups to choose from where you live, so ask friends and your health care team for references or speak to the organizations. The National Hospice and Palliative Care Organization has tips on how to find a good match.

Anytime

Counseling. It helps to be heard. Oncology social workers know how to give emotional support to people with cancer as well as their caregivers.  Ask your doctor or therapist for a recommendation.

Peer support. Family and friends can listen, but another person with AML may truly understand what you’re feeling. Connect with a group for people with AML and other blood cancers, in person, online, or by phone. The Leukemia & Lymphoma Society has a free service that can match you and your family with a trained volunteer.

No matter who you are, help is available every step of the way through your AML.

WebMD Medical Reference Reviewed by Brunilda Nazario, MD on April 08, 2019

Sources

SOURCES:

Leukemia & Lymphoma Society: “Acute Myeloid Leukemia,” “Home Care,” “The AML Guide: Information for Patients and Caregivers,” “Peer-to-Peer Support.”  

American Cancer Society: “Treating Acute Myeloid Leukemia (AML),” “Road To Recovery: Get a ride to cancer treatment.”

Mayo Clinic: “Acute myelogenous leukemia.”

CancerCare: “If You’ve Just Been Diagnosed,” “Counseling.”

MD Anderson Cancer Center: “Newly diagnosed cancer patients: Questions to ask your health care team.”

Cancer 101: “See What’s Inside Our Planner.”

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