Acute lymphocytic leukemia (ALL) is a type of cancer that begins in the immature white blood cells in the bone marrow. These altered cells are still in their immature stage and cannot function normally in the blood, and prevent the bone marrow from producing normal blood cells needed for fighting infection and delivering oxygen to all the cells of your body. With acute leukemia, these cancerous blood cells multiply rapidly, making the disease get worse quickly.
ALL is most common in children, adolescents and young adults (15 to 39 years of age), with more than half of those diagnosed with ALL being less than age 20; 10 percent are age 20-34.
Signs & Symptoms
ALL symptoms tend to appear out of nowhere and get worse quickly. Some of the most common symptoms include:
- Feeling weak, extremely tired, dizzy or light-headed, or appearing abnormally pale
- Bruising or bleeding easily, especially frequent or severe nosebleeds and bleeding gums
- Fevers, recurring or long-lasting infections, such as in the upper respiratory tract or slow healing of minor cuts and abrasions.
People with ALL may also have some non- specific symptoms, including:
- Weight loss
- Loss of appetite
- Night sweats
Some of the less commonly seen symptoms include:
- Lumps under the skin (swollen lymph nodes)
- Bone and joint pain
- Swelling in the abdomen
- Respiratory problems, such as trouble breathing or coughing
- Neurologic problems, such as headaches, seizures, vomiting and trouble with balance
A diagnosis of leukemia is made through standardized tests that look for specific hallmarks of the disease, such as swollen lymph nodes or too many immature white cells in the blood. Beyond a physical exam and blood tests that may suggest you have leukemia, one or more of the following procedures may be used to definitively diagnose leukemia
- Bone Marrow Tests to see if the bone marrow contains leukemia cells, and if so, which type of leukemia. To remove a sample of the marrow cells, a thick hollow needle is inserted into a large bone, usually the back of the hip bone, to remove. If the sample taken is liquid bone marrow, the procedure is called a bone marrow aspiration. If the sample is a solid piece of bone and bone marrow, the procedure is a bone marrow biopsy.
Chromosome Testing of the cells in the blood to look for specific DNA changes that have been shown to predict a patient’s prognosis and response to treatment.
- Spinal Fluid Tests to determine whether the leukemia has spread to the spinal cord and spaces around the brain. Samples are collected through a spinal tap (also known as a lumbar puncture).
Imaging to look for infections or spread of leukemia beyond the blood and marrow to other organs.
Treatment for ALL depends on what subtype of ALL you have, your age, your general level of health and whether it has spread to other parts of your body. Acute leukemia usually needs to be treated right away. The main treatment is chemotherapy, which uses medicine or drugs to kill leukemia cells. Other supportive treatments you might need include biological therapy, blood transfusions, platelet transfusions, radiation therapy, steroids and antibiotics. In general, the process includes intense treatment for three to six months, followed by a prolonged period of low-intensity maintenance treatment, with the total treatment period being between two and three years. During the maintenance phase, you are able to return home and resume many, if not most, of the things you could do before your diagnosis.
Side Effect Management
It helps to learn more about the side effects of treatment before you begin, so you will know what to expect. When you know more, you can work with your health care team to manage your quality of life during and after treatment.
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 side effects.
Short-term Side Effects
The immediate side effects that come while you are having treatment for ALL, or soon after you complete it, may include:
- Anemia: tiredness (fatigue), dizziness, weakness, headaches, pale coloring
- Thrombocytopenia: easy bruising, unexplained bleeding, small red or purple spots on the skin, known as petechiae
- Neutropenia: increased risk of infection, especially respiratory, bladder, blood and around the eyes, nose, mouth, genital and rectal areas and catheter sites
- Alopecia: hair loss ranging from thinning to complete (while most often associated with hair on the scalp, all body hair can be affected)
- Mouth and throat sores, dry mouth or changes in taste, loss of appetite, nausea and vomiting, diarrhea or constipation
- Peripheral neuropathy: numbness, tingling, burning sensations, discomfort or weakness in hands or feet
- Damage to the reproductive system: women’s periods usually stop and men may stop producing sperm
Long-term Side Effects
Lasting side effects can show up months or years after your treatment has finished, and can last for many years, even for the rest of your life. Although most long-term survivors don’t have serious late effects, it is important to catch any of these issues early to be able to treat them, some may include:
- Learning problems, such as such as Attention Deficit Disorder, Attention Deficit and Hyperactivity Disorder or general academic difficulties.
- Damaged bones and joints or osteoporosis (thinning of the bones)
- Decreased heart function
- Another cancer
Facing a cancer diagnosis at a young age is understandably a shock. A cancer diagnosis can be difficult to cope with, both from a practical and an emotional standpoint. Especially with ALL, you may have become ill suddenly and have to start making decisions right away about a very long treatment process.
There are a number of things you can do to make the cancer diagnosis and treatment process smoother.
The first thing to consider is enlisting someone to help you, such as a caregiver, keep everything straight and to help with logistics, such as transportation and meals. The primary caregiver for young adults tends to be a parent or a spouse, but could be anyone who is dedicated to supporting you emotionally and helping you stay on task with all the things you have to manage.
If you have been assigned a patient navigator (sometimes called a nurse navigator), use them as much as possible! If you haven’t been assigned one, ask your health care team how to arrange one for yourself. Patient navigators are people dedicated to helping guide people through the complex health care system.
Communicate with Your Health Care Team
Good, open communication with your health care team is critical to your treatment and recovery.
- Don’t be afraid to ask questions or let your team know if you are experiencing side effects or struggling with the emotional impact of your cancer.
- Take charge of your support network from the very beginning, teaching your friends and family what you need from them. How do you do this? Primarily by being up front with your loved ones. A social worker can help you with the process of communicating with your loved ones.
- How to tell a partner or casual date about your diagnosis (and later, history) of cancer? The answer is up to you, but it is a good idea to discuss with others and work out your “script” about your version of events to feel comfortable with who you decide to tell, and when and how you tell these people.
- Make connections with others facing the same problems that you are. It could be through in-person support groups or activities, and also through online support groups.
- Convey your wishes about making decisions should you become unable to do so for yourself through an advance health care directive, written legal information that can usually be prepared for free without the use of a lawyer. This can be an opportunity to discuss with loved ones your personal goals, values and beliefs, let them know the care and treatment you would prefer and to convey to them any information you would want to make sure they know.
Find Emotional Support
Dealing with a cancer diagnosis can be stressful. It can cause a rollercoaster ride of emotional ups and downs. Treating your emotional health is just as important as treating your physical body. There a number of tangible ways to help you take care of your emotional health, including:
- Give yourself permission to have a down day, and get back on track the next day.
- Focus on what you can control.
- Concentrate on what you can do today and deal with what comes at you one day—or even one hour or one minute—at a time through yoga or meditation, for example.
- If you start to find that your ups and downs have become extreme and severely interfere with your ability to function, or worry seems to be consuming your life, the most important thing you can do is to reach out for help.
Find Financial Support
Cancer is expensive to treat, and an ALL diagnosis can be a particularly heavy burden for younger people, who may not be employed, or if they are working, have not been in the workforce as long and don’t usually have the savings that older people do. No matter what your personal situation is, there are a number of steps you can take to improve your financial situation, including:
- Shopping around for the best health insurance
- Utilizing all available financial assistance programs
- Taking advantage of any options your school or employer offers
For more information, learn more about Coping with the Cost of Care.
Talk About Body Image and Identity
A particular concern for many younger people with a cancer diagnosis is how it is going to affect the way they look, such as hair loss, weight loss or gain, or scars or skin changes from radiation therapy. To help cope with body image changes, do things that make you feel good about yourself. Anything you can do to find comfort and confidence in your body can help. Options include:
- Engaging in a form of physical activity that you enjoy most days of the week
- Eating healthy foods that help you feel energized
- Wearing clothing styles that accentuate what you like more about your body
Most chemotherapy (and radiation to the head) can cause hair loss. There are a few options that can make the process less traumatic, including:
- Using an over-the-counter hair-loss drug
- Cutting your hair short or shaving your head
- Wearing a wig or head covering
A very important part of many young adults’ identities, but an area that many don’t often ask about, and health care providers don’t usually bring up, is sex and intimacy. It is important for you to be able to be intimate with your partner, whatever that might look like and however it may need to be adapted (for example, risk of infection or bleeding, fatigue and pain may need to be taken into account). In general, there are few physical limitations to having ALL that affect intimacy—including strict adherence to using protection (even using two methods) against sexually transmitted diseases and becoming pregnant. Cancer treatment may leave you nauseated or fatigued, be sure to keep your partner in the loop about how you are feeling.
Talk to Your Health Care Team About Fertility
There are an increasing number of options available to address the risks to fertility for many of the therapies that would be given to someone with ALL:
- Young men and boys after puberty can bank sperm that can be frozen and cryopreserved so that if they do have fertility issues later, there are options available for artificial insemination and in vitro fertilization.
- Young women and girls after puberty can take medications that suppress the menstrual cycle during treatment, which can potentially be protective of fertility. More procedures are becoming available where people can have pieces of their ovaries removed and have eggs frozen for use later.