In 2016, Stan Stanek was a healthy 60-year-old enjoying his first year of retirement. But in December of that year, he got a diagnosis that turned his life upside down.
Stanek wasn't feeling well at Thanksgiving. His symptoms felt like the flu, but when they didn't get better, he went to see his doctor. Within a few days, tests revealed that he didn't have the flu. He had acute myeloid leukemia (AML).
His blast count — the number of abnormal white blood cells in his bone marrow — was extremely high. "I went from not feeling good for a couple of days to ending up in the hospital and staying there for 55 days," he says. Doctors told him that if he hadn't come in when he did, he wouldn't have survived for more than a few weeks.
The Uncertainty of Life With AML
AML is unlike many other cancers. It progresses differently from one person to another. Whether your cancer is easy to cure or hard to treat depends on factors like the way your tumor acts, how well it responds to treatment, and the number of abnormal blast cells in your bone marrow at diagnosis. That unpredictable outlook brings a lot of uncertainty.
"In AML there's a range. Some patients have excellent outcomes. For some patients, the chance of a prolonged survival is really remote. That makes it challenging for patients to plan for what the future is likely to hold," says Jacob Appelbaum, MD, PhD, a physician at Fred Hutchinson Cancer Center in Seattle, Washington.
The intense treatment and its side effects add to the stress.
Treatment Challenges
An allogeneic stem cell transplant, also known as a bone marrow transplant, is the main treatment for AML. It starts with high doses of chemotherapy or radiation therapy to kill cancer cells, followed by an infusion of blood-forming stem cells from a donor. Those stem cells produce new, healthy blood cells in the bone marrow.
A stem cell transplant offers the best chance to cure AML, but it's not for everyone. Because this treatment comes with serious risks, you must be healthy enough to qualify.
After Stanek spent 55 days in the hospital on chemotherapy, his cancer went into remission. His doctors told him a stem cell transplant was the next step. He was ready, but his test results told a different story. Chemotherapy had damaged his heart. He was no longer eligible for the transplant.
After getting treatment for his heart condition, Stanek was ready to try again for a stem cell transplant. But by then his cancer had relapsed.
He joined a clinical trial of a new targeted AML drug at MD Anderson Cancer Center. Over a six-month period, he made 18 trips from his home near Minneapolis, Minnesota, to Houston, Texas, more than 1,000 miles away. Finally, Stanek learned that his cancer was in remission again. He could proceed with the stem cell transplant.
What AML and Its Treatments Do to Your Body
A stem cell transplant is an intense process. The preparation, procedure, and recovery take several months. "It's a marathon, not a sprint," Appelbaum says.
Doctors have gotten better at managing side effects, but these treatments still cause problems like tiredness, hair loss, mouth sores, nausea, vomiting, and diarrhea. One of the most serious risks is graft-versus-host disease (GVHD). It happens when the donor's immune cells see your own tissues as foreign and attack them, which causes a serious and sometimes life-threatening reaction.
"GVHD is much less common now because we have a new way of doing the transplant," Appelbaum says. Doctors give chemotherapy three or four days after the stem cell infusion to "tune" your new immune system so that it reacts against the leukemia cells but not your own cells.
There are also less intense alternatives to a stem cell transplant: lower-dose chemotherapy or targeted therapy. These treatments come with fewer side effects, but they don't cure the disease and you'll have to stay on them indefinitely.
Should you opt for an intense treatment that cures your cancer but has serious side effects, or a treatment with fewer side effects that won't cure your cancer? "That's a real challenge for patients to choose between," Appelbaum says.
AML and Your Emotional Health
This cancer doesn't only affect your body. It pulls you away from your job and family. You may have to travel long distances for treatment, like Stanek did. The constant uncertainty adds stress and worry to your life. It's no wonder that anxiety and depression are much more common in people with AML than in those without it. Untreated emotional strain could make you less likely to survive your cancer.
A good support system can help you cope with AML. He stresses the importance of asking for help. Tell your doctor how you feel. Talk to a therapist or counselor. Lean on the people around you.
"I have a wonderful, strong family. My wife was the greatest caregiver," Stanek says. His daughters Katy and Caroline also stepped up. "They sat down with me and said, 'Dad, you've taken care of us our whole life. Let us take care of you.' And that, to me, was such a gift," he recalls. An entire community rallied around his family — friends, neighbors, and members of their church made more than 41,000 visits to their CaringBridge webpage.
Life After AML Treatment
Once your tests show no more signs of cancer, you're in remission. Yet each follow-up visit can still bring worry. There's always a chance AML could return.
Stanek says he met about 28 people with AML during his treatment. Most relapsed. About a third of them passed away. "I think for most cancer patients, especially those with leukemia, the biggest fear is that you are going to relapse. Fortunately, I haven't," he says.
The odds of a relapse drop, the more time that passes. "One of the things I tell patients is the longer they go, the less likely it is that their cancer is going to come back," Appelbaum says. After you've gone five years with no evidence of cancer, you're considered cured. It has been nearly 10 years since Stanek's diagnosis.
Looking back on his journey with AML, Stanek calls it "the most important event of my life (besides becoming a husband and father)." Not only did he gain more appreciation for life, but he helped and encouraged other people he met along the way. "I became a better person because of it," he says. "I learned that paying it forward can be one of the most rewarding ways to live life."
Show Sources
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SOURCES:
American Cancer Society: "Chemotherapy for Acute Myeloid Leukemia (AML)," "Stem Cell Transplant for Acute Myeloid Leukemia (AML)."
Blood Cancer United: "Allogeneic Stem Cell Transplantation."
Jacob Appelbaum, MD, PhD, Fred Hutch Cancer Center; assistant professor, Division of Hematology and Oncology, University of Washington.
Medicine (Baltimore): "Anxiety and Depression Predict Unfavorable Survival in Acute Myeloid Leukemia Patients."
Oncology Research: "Outcomes of Patients with Acute Myeloid Leukemia Who Relapse After 5 Years of Complete Remission."
Stan Stanek, 69, patient, Chanhassen, Minnesota.
