Know what questions to ask your doctor so that you can play an active role in your treatment. The shock of a diagnosis may make it hard to remember all the questions you want to ask, or to remember everything the doctor says. It's helpful to write down all your questions in advance, and to take notes or tape record the doctor’s answers, or to bring someone with you. Some questions you may want to ask include:
- What kind of leukemia do I have?
- What are my treatment choices? Which do you recommend? Why?
- What are the benefits of each treatment?
- What are the risks and possible side effects of each treatment?
- Is there anything I can do to decrease any side effects?
- If I have pain, how can you relieve it?
- How long will the treatment last?
- Will I have to change my everyday activities?
- How much will the treatment cost? How do I find out whether my insurance will cover it?
- What is the risk of the leukemia returning if I am in remission?
- Can I be cured of this leukemia?
It may be helpful to get a second opinion about your diagnosis or treatment plan. Your own doctor may be able to refer you to another hematologist or a cancer specialist. You can also get names from your local medical society, a hospital, or a medical school. Call the National Cancer Institute’s Cancer Information Service (1-800-4-CANCER) for information about cancer centers and other treatment centers in your area.
Minimize your risk of infection. Washing your hands thoroughly and not eating raw vegetables and fruits will help you to avoid infection. While you are receiving treatment for leukemia, you should avoid people who are sick and stay away from crowds. However, this is not necessary for people with stable-phase CML.
Your doctor is the best source of information on the drug treatment choices available to you.
Some leukemia patients may have radiation therapy in addition to chemotherapy.
Radiation therapy uses high-energy x-rays to shrink tumors and stop cancer cells from growing.
Most often it targets a specific area of the body, such as an enlarged spleen. Radiation can also relieve bone pain caused by growth of leukemia cells in the bone marrow. For people with acute leukemia, radiation could be used on collections of leukemia cells in the testicles or central nervous system. Some patients might have radiation over their entire body before a bone marrow transplant.
If you receive radiation you may experience a number of side effects, including tiredness, hair loss, red, dry, tender, and itchy skin, nausea and vomiting, and loss of appetite. These effects are temporary.
Bone marrow transplantation (also called stem cell transplantation) replaces diseased stem cells with healthy ones to restore the bone marrow’s ability to produce blood cells. In bone marrow transplantation, diseased bone marrow is destroyed by high doses of radiation and chemotherapy. It is then replaced by healthy bone marrow cells. The healthy cells may be taken from the patient's own marrow before the procedure, treated to remove the diseased cells, and stored. The healthy cells may also come from a donor. Most often donor marrow is used, since most people with leukemia do not have enough cancer-free cells in their bone marrow. The donor usually must be a close relative with a matching tissue type. For a patient without an appropriate family donor, searches for a matched donor can be done through registries.
The healthy cells are delivered via blood transfusion, after which they begin growing in the bone marrow and producing normal blood cells. This may take three weeks or longer. During this time, you must stay in the hospital where you are protected from germs until you have enough white blood cells to fight infection. If you have received stem cells from a donor, you will be given drugs to prevent your body from rejecting the cells or from attacking your own body. You will also be given drugs to prevent infection.
Bone marrow transplantation may help people with acute leukemia who have not responded to chemotherapy, or whose disease has come back after a remission. For people with CML, this procedure has been the only hope for cure. For chronic leukemia, bone marrow transplantation can provide a good remission. There are, however, side effects of bone marrow transplantation:
- Increased risk of infection, hair loss, nausea, and vomiting from the radiation and chemotherapy
- Graft-versus-host disease. This is a serious post-transplant reaction in which the donor (graft) cells reject the host (body) cells into which they were implanted. This condition may occur right away, or not for years. You will receive drugs to prevent this.
- Damage to your lungs from radiation, resulting in shortness of breath. Specifically, the damage is due to pneumonia, which may be permanent and/or lethal.
- Infertility for women caused by damage to the ovaries.
- Damage to the thyroid gland, leading to problems with metabolism.
- Cataracts caused by damage to the lens in your eye.
Infusion of donor lymphocytes is a new technique that shows promise. Infusing lymphocytes (as opposed to stem cells) from a donor has led to remission for patients with CML who had a relapse after bone marrow transplantation. Scientists are currently studying this procedure to see if it will work for other conditions.
Medications and other supportive care is important to relieve or prevent many side effects and complications caused by leukemia and its treatment. Your doctor will use a variety of measures to manage the symptoms of leukemia and the side effects of your treatment.
- Anti-emetics. Drugs you take while receiving chemotherapy can prevent or decrease nausea and vomiting.
- Growth factors. Drugs called growth factors can raise your blood count and lower your risk of infection.
- Anti-toxins. When leukemia cells are destroyed, they release toxins that travel through the body in the bloodstream and can damage the heart, kidneys, and nervous system. To prevent this damage, you may be given drugs and extra fluids that flush these toxins from the body.
- Red blood cell transfusion. If you are tired or short of breath due to low levels of red blood cells, you may be given a transfusion of these cells.
- Platelet transfusion. If your platelet count is low, you may receive a platelet transfusion to decrease the risk of uncontrolled bleeding.
- Mouth sensitivity, bleeding, and risk for infection. Leukemia can cause sensitivity and bleeding in your mouth, as well as a greater risk of mouth infection. Your doctor may tell you to have a dental exam before you start treatment. Your dentist can tell you how to keep your mouth healthy and clean during your treatment.
Clinical trials are research studies that test new treatments on people after these treatments have been studied in the lab. Many leukemia patients take part in clinical trials, which give them access to promising new drugs and other treatments. Ask your doctor if there is a clinical trial that might benefit you. Clinical trials involve risks as well as benefits, and it is important to understand what these are. Call the National Cancer Institute at 1-800-4-CANCER for more information about clinical trials.
The only operation used in treating leukemia is removal of the spleen. Since leukemia affects the blood and bone marrow, there is no solid tumor to cut out to cure the disease. Surgery, however, may still be used to increase your comfort. If the spleen is affected by leukemia, it may become so large that it presses on other organs and causes discomfort. In that case an operation to remove the spleen will bring relief, though it will not cure the leukemia.
A surgical procedure may be used to insert a tube into a large vein. This allows chemotherapy or other drugs to be given without repeated injections with a needle.
Alternative therapies may help you by relieving the side effects of leukemia treatments or by boosting your immune system. Some alternative therapies have been well-studied, so their effects are scientifically proven. Others have not undergone study, and their effects are unproven. Consult your physician before embarking on alternative therapies.
Most children who get leukemia have the acute type. The treatment they receive depends on whether they are at high risk or low risk. Children with leukemia are put into either a high-risk or low-risk group based on their white blood cell count (lower is better), features of their chromosomes, and their response to treatment (an early response means the child will do better). Those at high risk receive more intensive treatment.
Children may suffer long-term side effects from radiation and chemotherapy. Some of these long-term side effects may include:
- Difficulty with learning and coordination. This can occur in children who have had radiation to the brain, and can result in poor school performance. For this reason, children receive radiation only when chemotherapy fails to work or in patients with high-risk acute lymphoblastic leukemia.
- Infertility. Boys who receive radiation to their testicles usually cannot have children when they grow up. The radiation may also decrease hormone production, so they need to take hormones later on.
- Heart damage. Both drugs (particularly anthracyclines and radiation) can cause damage to the heart such that it cannot pump adequately.
- Risk of AML. A small number of children who are given certain chemotherapy drugs for ALL—particularly alkylating agents—develop AML. This risk must be weighed against the benefit of using chemotherapy to treat ALL.
Many cases of acute leukemia can be cured; however, chronic leukemia can only rarely be cured. Your prognosis will depend on the particular type of leukemia you have and on the particular features of your case. If you have gone five years after treatment without any signs of disease (two years for children), the chance that your leukemia will recur is small.
- ALL. In over 90% of cases, the first course of chemotherapy brings about a remission. Fifty percent of children who have ALL are free of disease five years after their treatment. Young children between the ages of three and seven have the best prognosis, while the outlook for people over 20 is less favorable. Both children and adults whose first white blood cell counts are under 25,000 per microliter of blood have a better prognosis than people whose counts are higher.
- AML. For 50% to 85% of people with AML, treatment brings about a remission. Between 20% and 40% of people with this disease remain disease-free after 5 years. People who get AML after having radiation and chemotherapy for another disease, as well as those over 50, have the poorest prognosis.
- CLL. For those with CLL, the chances for recovery depend on how advanced their disease is. This is indicated by the numbers of lymphocytes and platelets, whether they have anemia, and whether they have an enlarged spleen or lymph nodes. People who have B-cell leukemia, the most common type of CLL, may live 10 to 20 years after the disease is diagnosed. Severe anemia and a low platelet count are signs of a worse prognosis. Another factor is that having CLL increases the chance that you will develop another form of cancer.
- CML. A bone marrow transplant during the early stages of CML offers a chance for cure. However, 20% to 30% of people with this disease die within 2 years after receiving a diagnosis. Another 25% die in each following year. Others may survive another 4 years or more until blast crisis occurs. Most often patients die within 2 months of a blast crisis, but some live another 8 to 12 months with chemotherapy. Interferon-alpha and Gleevec have led to remission in some patients, so there is hope that new treatments will improve the outlook for people with CML.
For several years after your treatment ends, you will need to see your doctor often for follow-up visits. Follow-up exams are extremely important. They enable your doctor to check for signs that your leukemia has recurred, and to watch for the appearance of any long-term side effects of treatment. It is essential that you tell your doctor if you experience any new symptoms.
- Common Side Effects of AntidepressantsFind out about common and not-so-common side effects of antidepressants and how to manage them.
- How Drugs Can Lower CholesterolDiscover how cholesterol-lowering medications work in your body to bring your cholesterol numbers down to ideal levels.
- Do Over-the-Counter Proton-Pump Inhibitors Work?You might wonder why you need a prescription for GERD if many PPIs are available over the counter. Get the answers to this and other questions about OTC PPIs.