By Cancer Support Community  |  Aug 24, 2022

Managing Side Effects of Acute Lymphoblastic Leukemia Treatment

As the largest professionally led nonprofit network of cancer support worldwide, the Cancer Support Community (CSC), including its Gilda’s Club affiliates, is dedicated to ensuring that all people impacted by cancer are empowered by knowledge, strengthened by action, and sustained by community. CSC achieves its mission through three areas: direct service delivery, research, and advocacy.

This article about the side effects of treatment for acute lymphoblastic leukemia (ALL) is excerpted from CSC’s Frankly Speaking About Cancer series, which can be downloaded from the CSC web site.

Your Treatment Plan

Cancer doctors use a combination of drugs to kill ALL cells by targeting the fast-growing cancer cells. Some of the most complex chemotherapy combinations and treatment schedules used in the whole field of oncology are used to treat ALL. Most people do well with treatment.

Because of the acute nature of ALL, treatment usually begins as soon as possible after diagnosis. Treatment options will be based on what subtype of ALL you have, your age, your general level of health and whether cancer has spread to other parts of your body.

In general, ALL treatment takes two years for females and three years for males. However, most of the therapy can be done as an outpatient and the majority of therapy is spent on a maintenance phase, which allows you to return to many of the things you did before your diagnosis. If you have trouble obtaining medications or taking them as prescribed, talk to your treatment team about options.

Side Effects Can Be Unpredictable

Because most cancer treatment drugs are not specific to cancer cells, they can affect any cells in your body that grow quickly. This unwanted damage to healthy cells is what causes side effects.

Different types of treatments and dosages can cause varying side effects. The level of side effects you might experience will also depend on your individual body, your general health and your age. Some side effects can appear almost as soon as treatment begins, and others can appear months or even years later.

Research is continuing to uncover ways to lessen side effects, and people who are treated for ALL now are less likely to have long-term effects than people treated in the past. It is also important to remember that many cancer treatments will decrease symptoms caused by ALL – so you may feel better, and your quality of life may actually improve during treatment.

Immediate Side Effects

The immediate side effects that come while you are having treatment for ALL, or soon after you complete it, may include:

  • From reduced red blood cell counts, known as anemia: tiredness (fatigue), dizziness, weakness, headaches, pale coloring.
  • From low platelet counts, known as thrombocytopenia: easy bruising, unexplained bleeding, and small red or purple spots on the skin, known as petechiae.
  • From decreased white blood cell counts, known as neutropenia: increased risk of infection, especially respiratory, bladder and blood (known as sepsis) and around the eyes, nose, mouth, genital and rectal areas, and catheter sites.
  • From damage to hair follicles: hair loss, known as alopecia, ranging from thinning to complete. While most often associated with hair on the scalp, all body hair can be affected.
  • From damage to gastrointestinal tract: mouth and throat sores, dry mouth or changes in taste, loss of appetite, nausea and vomiting, diarrhea, or constipation.
  • From nerve damage, known as peripheral neuropathy: numbness, tingling, burning sensations, and discomfort or weakness in hands or feet.
  • From damage to the reproductive system: women’s periods usually stop, and men may stop producing sperm.

Most of these side effects go away soon after treatment is finished. If serious side effects occur during treatment, that type of chemotherapy may have to be reduced or switched to another drug.

Just because a side effect is common does not mean it is guaranteed to occur. Most people undergoing ALL treatment do not experience all of these side effects, and the ones they do may be mild. The most important thing you can do is to let your health care team know when you experience side effects, as there are many treatments available to lessen them, including:

  • Drugs to prevent nausea and vomiting
  • Drugs or transfusions to increase the numbers of platelets and red blood cells
  • Antibiotics to prevent an infection or prevent it from taking hold
  • Drugs that help the body eliminate the contents of killed tumor cells that can spill into the blood
  • Drugs for pain and discomfort
  • Self-care techniques to prevent or decrease severity of mouth sores, skin breakdown, infections and fatigue

Questions to Ask Your Care Team

  • What are the possible side effects of this treatment, both in the short term and the long term? How long will they last?
  • Is there anything that can be done to reduce side effects? Are there any complementary therapies that may help me cope with cancer treatment?
  • When should I contact my doctor about my side effects, and who specifically should I contact?
  • Could this treatment affect my ability to become pregnant or have children in the future? If so, should I talk with a fertility specialist before treatment begins? Is there even time to do this?
  • Will I have any hair loss? If so, when will my hair grow back? Who can I speak to about getting a wig if I want one?
  • Where can I get support and resources if should need them? This can include counseling, support groups, financial and other practical resources

Long-Term Side Effects

ALL requires a very long treatment regimen, with strong chemotherapy drugs that can leave lasting effects for many years, even for the rest of your life. These long-term side effects can show up months or years after your treatment is finished. Most long-term survivors don’t have serious late effects, but it is important to catch any problems early to be able to treat them.

Below are some of the more common long-term side effects seen after treatment for ALL. Your risk of developing any of them depends on many factors, especially the specific treatment you receive. You and your doctor should discuss the possibility of these occurring, what to look out for and if anything can be done to prevent them. After treatment, follow-up is critical to be able to catch any of these late effects and figure out ways to help you.

Learning problems are especially common if you receive radiation therapy or intrathecal chemotherapy into your spine. These therapies kill leukemia in your central nervous system, but can also cause problems to the brain, such as Attention Deficit Disorder, Attention Deficit and Hyperactivity Disorder or general academic difficulties. People who experience this do not have any reduction in their IQs, but they are slower at processing information. If it is suspected that you suffer from this problem, a neuropsychiatric evaluation is usually the next step, and possibly meeting with a psychologist. There are a number of things that can be done to address these learning abilities, including developing an Individual Education Plan (I.E.P.) to make up for this deficit if you are still in school. An I.E.P. allows you to get certain accommodations in work or school.

Bone and joint problems can be caused by steroids, a common part of leukemia treatment that can lead to damaged bones and joints or osteoporosis (thinning of the bones). Mild to moderate osteoporosis can be treated with medication and exercise, but if severe bone or joint problems occur, you may need to stop steroid use and be referred to an orthopedic surgeon.

Heart problems can be caused by certain chemotherapy drugs. Your doctor will likely have you undergo an echocardiogram, a simple painless test to check heart function, before beginning therapy so it will be easy to see if there is any decreased function after therapy. Your doctor may arrange for a consultation with a cardiologist, a doctor who specializes in care of the heart. After therapy, you may have a follow-up echocardiogram to assess heart function, as the cardiotoxic effects of some chemotherapy may not be seen until several years after treatment.

Another cancer – acute myelogenous leukemia (AML) – developing later in life is a risk for around five percent of people receiving certain chemotherapies. Even less frequently, some people who have been cured with ALL therapy will develop non-Hodgkin’s lymphoma or other cancers. Discuss this with your health care team so you can better understand what this means for you.

Infertility is a risk after some chemotherapy treatments, radiation therapy to certain parts of your body and stem cell transplant.

Patients and caregivers can find support and additional materials about ALL from the Cancer Support Community’s Helpline (888-793-9355) and website as well as your local CSC or Gilda’s Club. The Cancer Support Community’s Open to Options® program offers help for asking questions of your health care team when facing a cancer treatment decision.


Categories: Leukemia