Living Past Leukemia: Survivorship and Lasting Side Effects

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These days, leukemia patients have a wide range of options for treating their cancer. However, as treatments become more effective and patients live longer, long-term and late side effects have become an area of growing concern.

“Not a lot of research looks at the long-term side effects of leukemia treatment,” Mary-Elizabeth Percival, M.D., assistant professor of medicine at University of Washington and attending physician at Seattle Cancer Care Alliance, said in a phone call with HealthCentral. “The field isn’t where it should be. We worry so much about relapse, that any survival is considered a win.”

Because of this significant risk of relapse, doctors recommend leukemia patients be sensitive to any changes in their bodies weeks, months, or even years after treatment.

“If anything seems unusual,” Percival says, “you should talk to your doctor about it, especially because graft-versus-host disease (a complication of stem cell transplants) can happen any time. Keeping in touch with your doctor or a survivorship clinic is important.”

Survivorship clinics can help patients, who are years or even decades from diagnosis, differentiate between symptoms that are late side effects and those that are signs of relapse.

Here are some of the most common long-term side effects that leukemia survivors should watch for.

Cardiac problems – Radiation and a particular class of chemotherapy agents called anthracyclines can contribute to heart problems that may appear during treatment or many years later.

In a phone interview with HealthCentral, Erik J. Chow, M.D., who is an associate professor of pediatrics at the University of Washington, Fred Hutchison, and Seattle Children’s Hospital and the chair of the survivorship committee for the Children’s Oncology Group (COG), a National Institute of Health-funded organization working to improve treatment and survivorship, said that COG recommends children treated for leukemia receive regular cardiac screenings for the rest of their lives.

Memory loss – According to Dr. Percival, memory problems like “chemo brain” may occur after cancer treatment but often resolve themselves with time. The American Society of Clinical Oncologists (ASCO) recommends getting plenty of rest and exercise to help manage the symptoms.

Fertility problems – Leukemia treatment can affect the fertility of both female and male patients, whether they had chemotherapy and radiation therapies as children or adults. The problem is common enough that some cancer centers, like Seattle Cancer Care Alliance (SCCA), are opening their own onco-fertility offices to help patients freeze sperm and eggs for future use before treatment begins.

Hypothyroidism – According to Dr. Percival, the conditioning regimen for patients getting a stem cell transplant from another person (rather than using his or her own stem cells) can disrupt thyroid function, and patients may need thyroid hormone replacement medication when treatment is over.

Second cancers – Healthy cells are damaged by chemotherapy and radiation therapies. These damaged cells may contribute to the growth of new forms of cancer later in life.

Osteonecrosis – Daniel DeAngelo, M.D., Ph.D, associate professor of medicine at Harvard Medical School and director of clinical and translational research for adult leukemia at Dana-Farber Cancer Institute, said in an email interview with HealthCentral, that osteonecrosis is a common long-term side effect of treatment for acute lymphocytic leukemia (ALL). This condition can occur when some drugs—such as steroids or the high-dose chemotherapy that comes with stem cell transplants—damage blood vessels in the bone, causing it to weaken or die, which can cause pain and fractures.

Sun sensitivity – According to Dr. Percival, patients who have a stem cell transplant from a separate donor need additional sun protection, because sun exposure can trigger or worsen graft-versus-host disease.

As patients live longer, survivorship becomes a more important aspect of patient care. When cancer therapy is over, patients should obtain a copy of their treatment summary and schedule an appointment with a survivorship clinic.

Having a treatment summary is especially important for children, Chow said, “because everyone has to grow up eventually and get care from either a family practice or internal medicine doctor, and they won’t always be seen by a pediatric oncologist. With this record, they will hopefully understand that if they get these side effects, it may be related to the treatment they received.”

With time, efforts may move beyond identifying and coping with symptoms to reducing and preventing side effects of treatment.

“The survivorship committees at the Children’s Oncology Group are heavily invested in treatments that preserve current cure rates, but further reduce the side effect profile,” Chow said. “There’s a lot of interest in immunotherapeutics which promise less toxicity, and we’re studying how to incorporate them into treatment that already exists.”

See more helpful articles:

Leukemia: The Basics

Leukemia Types and Their Characteristics

Leukemia Treatment Options