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Acute lymphocytic leukemia (ALL), sometimes called acute lymphoblastic leukemia, is a type of cancer that begins in the immature white blood cells in the bone marrow, the hollow space inside of your bones where blood is made. The leukemia cells do not function like normal blood cells, and they grow quickly inside the bone marrow, overtaking the space there. This prevents the bone marrow from making the normal blood cells that are needed for fighting infection, preventing bleeding, and delivering oxygen to all the cells of your body. With acute leukemia, these cancerous blood cells multiply rapidly. This makes the disease get worse quickly.
ALL is most common in children, teens and young adults (15 to 39 years of age), but it can happen at any age. More than half of people diagnosed with ALL are less than age 20; 10 percent are ages 20-34.
Signs and 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.
- 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, the doctor puts a thick hollow needle into a large bone, usually the back of the hip bone. If the sample is liquid bone marrow, it is called a bone marrow aspiration. If the sample is a solid piece of bone and bone marrow, it is called a bone marrow biopsy. Often both types of samples are taken, as this can help your doctor better understand important details about the leukemia.
Chromosome Testing of the cells in the blood to look for DNA changes that predict the course of the disease and a person’s response to treatment.
Molecular Tests can identify specific changes in the DNA that are not always seen on chromosome testing.
Spinal Fluid Tests to find out if the leukemia has spread to the spinal fluid 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 disease you have
- Your age
- Your general level of health
- 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 to kill leukemia cells. Other treatments you might need include biological therapy, blood or platelet transfusions, radiation, steroids and antibiotics. The process usually includes intense treatment for three to six months. A significant part of this first treatment phase may occur in the hospital. This is followed by a long period of low-intensity maintenance treatment.
The total treatment period lasts between 2 and 3 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.
A stem cell transplant (sometimes called a bone marrow transplant) may also be part of the treatment plan, depending on your situation and your overall health. A newer type of cellular therapy called CAR T cell therapy is also sometimes used to treat ALL, in cases where it has come back or not responded to multiple treatments.
Measurable Residual Disease Testing
Checking for measurable residual disease (MRD) is part of routine testing for both adults and children living with ALL. MRD refers to the small number of cancer cells that remain in your body during and after cancer treatment. It is sometimes called minimal residual disease.
MRD testing is so sensitive that it can find 1 cancer cell in 100,000 healthy cells. It may even be able to detect 1 cancer cell in 1 million healthy white blood cells. Other lab tests may not detect these cancer cells that remain after treatment, and you may not show any signs or symptoms of cancer.
Benefits of MRD Testing
Knowing your MRD levels helps your doctor determine how well your treatment for ALL is working. It helps predict the risk of your cancer returning. Checking for MRD can also help confirm and monitor remission. Knowing how much MRD is present in your body allows treatment to be tailored to your unique needs. This gives you the best chance of achieving complete remission.
Understanding MRD Results
Testing for MRD tells your doctor whether there are cancer cells remaining in your body. MRD-negative means that there are no traces of detectable cancer left. People who are MRD-negative may live longer without disease than those who are MRD-positive. Although testing negative for MRD is the goal, it is possible to test MRD-negative but still have your ALL return.
MRD-positive means that some cancer cells are still present. If you test MRD-positive, your health care team may suggest consolidation treatment. This uses immunotherapy or chemotherapy to remove the remaining leukemia cells. MRD results may also show whether you’d benefit from stem cell transplant.
The timing of MRD testing depends on your unique situation. For example, your doctor may recommend MRD testing:
- After the final cycle of a planned combination therapy
- After stem cell transplant
- During treatment to confirm the depth of remission
- At the 1-year point of maintenance therapy
- At regular intervals after treatment is completed
You may need more than one MRD test, so be sure to ask that your blood or bone marrow be sent to the same lab that handled your previous MRD tests. Using the same lab will help you and your care team make accurate comparisons about your MRD status over time.
Kristin & Benny: Immunotherapy & Acute Lymphoblastic Leukemia
Kristin and Benny discuss their experience with Kristin's acute lymphoblastic leukemia and immunotherapy treatment. Would you like to learn more about immunotherapy?
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 will happen to you. Most people undergoing ALL treatment do not have all of these side effects. The ones they do have may be mild or may change significantly over time.
The most important thing you can do is to let your health care team know when you have side effects. There are many treatments that can reduce them.
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:
- Tiredness (fatigue), dizziness, weakness, headaches, pale coloring
- Easy bruising, unexplained bleeding, small red or purple spots on the skin
- Increased risk of infection, especially respiratory, bladder, blood and around the eyes, nose, mouth, genital and rectal areas, and catheter sites
- Hair loss ranging from thinning to complete (usually on the scalp, but 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
- Numbness, tingling, burning sensations, discomfort or weakness in hands or feet
- 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. These are sometimes called “late effects”. They 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:
Coping With ALL
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. It can also be a shock to face a cancer diagnosis at a young age.
There are a number of things you can do to make the cancer diagnosis and treatment process smoother.
Ask for Help
Find someone to help you keep everything straight and to help with planning for transportation and meals. The primary caregiver for young adults tends to be a parent or a spouse. But it could be anyone who will support you emotionally and help you 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 get one. Patient navigators are people dedicated to helping guide you through the complex health care system.
Communicate With Your Healthcare Team
Good, open communication with your healthcare team is critical to your treatment and recovery.
- Don’t be afraid to ask questions or let your team know if you are having side effects or struggling with the emotional impact of your cancer.
- Take charge of your support network from the very beginning. Tell your friends and family what you need from them. A social worker can help you communicate with your loved ones.
- How do you 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 it with others and work out your “script” so you feel comfortable with who you decide to tell, and when and how you tell them.
- 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.
- Prepare a healthcare directive to explain your wishes about making decisions should you become unable to do so for yourself. This is written legal information that can usually be prepared for free without a lawyer. This can be a chance to discuss with loved ones your personal goals, values and beliefs. Let them know the care and treatment you would prefer and tell them anything you want to make sure they know.
Acute Lymphocytic Leukemia: Coping with Relapse
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. Yoga or meditation can help.
- 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, reach out for help.
Find Financial Support
Cancer is expensive to treat. It can be especially challenging for young people to deal with ALL. You may not have a job. If you are working, you probably have not been employed for a long time and may not have much savings. There are a number of steps you can take to improve your financial situation, including:
- Shopping around for the best health insurance
- Using all available financial assistance programs
- Taking advantage of any options your school or employer offers
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 you look. You may be dealing with 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 physical activity that you enjoy most days of the week
- Eating healthy foods that increase your energy level
- Wearing clothing styles that play up what you like most about your body
Some chemotherapy (and radiation to the head) can cause hair loss. To deal with this, you can try:
- Using an over-the-counter hair-loss drug
- Cutting your hair short or shaving your head
- Wearing a wig or head covering
Sex and intimacy are very important parts of many young adults’ identities. But it is a topic many ALL patients don’t ask about, and health care providers don’t usually bring it up. Talk with your doctor about sexuality and intimacy so he or she can help you. Cancer treatment may leave you nauseated or fatigued. Be sure to tell your partner how you are feeling. Use one or more methods of protection against sexually transmitted diseases and pregnancy.
Learn Ways to Cope With Intimacy & Fertility Issues
Sometimes, side effects from cancer treatments and the stress of having cancer can lead to sexuality and intimacy issues with a partner.
Talk to Your Healthcare Team About Fertility
There are a growing number of options to address the risks to fertility for many ALL treatments:
- Young men and boys after puberty can bank sperm that can be frozen. If they do have fertility issues later, they could choose to use the banked sperm for artificial insemination or in vitro fertilization.
- Young women and girls after puberty can take medications that suppress the menstrual cycle during treatment. This can potentially protect fertility. More procedures are becoming available to allow women to have pieces of their ovaries removed and have eggs frozen for use later.
- Sperm or egg banking should be done before starting chemotherapy treatments, so ask about this right away if you might be interested.