Watchful Waiting

Your doctor may suggest watchful waiting if you’re diagnosed with chronic lymphocytic leukaemia (CLL) but you don’t have symptoms. Watchful waiting means delaying treatment until you have symptoms. The purpose is to avoid the side effects of treatment as long as possible.

If you and your doctor agree that watchful waiting is a good idea, you’ll get exams and blood tests every 3 to 6 months. Your doctor may suggest starting treatment if you develop symptoms.

Some people worry that waiting to start treatment may reduce the chance to control leukaemia before it gets worse. Having regular checkups reduces this risk.

If you choose watchful waiting but later become concerned about delaying treatment, you should talk with your doctor. You can change your mind and have treatment at any time.

Questions you may want to ask your doctor about watchful waiting

  • Is it safe for me to delay treatment? Does it mean I won’t live as long as if I started treatment right away?
  • Can I change my mind later on?
  • How often will I have checkups?
  • How will we know if the leukaemia is getting worse?

Chemotherapy

Most people with leukaemia are treated with chemotherapy. Chemotherapy uses drugs to kill leukaemia cells.

Several drugs are used for leukaemia, and they may be given in different ways. The drugs used for leukaemia may be given through a thin needle directly into a vein (intravenously) and as tablets and liquids that you swallow. The drugs enter the bloodstream and can kill leukaemia cells almost all over the body.

However, many drugs given directly into a vein or taken by mouth can’t pass through the tightly packed blood vessel walls found in the brain and spinal cord. If leukaemia affects the brain or spinal cord, the drugs may be given through a needle into the fluid that fills the spaces in and around the brain and spinal cord. This method is known as intrathecal chemotherapy, and it is given in two ways:

  • Into the spinal fluid: The doctor may inject drugs into the spinal fluid. Injections into the spinal fluid can be painful.
  • Under the scalp: The surgeon may place a device known as an Ommayareservoirunder the scalp during surgery. The doctor injects drugs into the device. This method usually doesn’t hurt. The doctor may suggest this method when many doses of intrathecal chemotherapy are planned.

You may receive chemotherapy in a clinic, at the doctor’s office, or at home. Some people need to stay in the hospital during treatment.

The side effects depend mainly on which drugs are given and how much. Chemotherapy kills fast-growing leukaemia cells, but the drugs can also harm normal cells that divide rapidly:

  • Blood cells: When drugs lower the levels of healthy blood cells, you’re more likely to get infections, bruise or bleed easily, and feel very weak and tired. Your health care team will check for low levels of blood cells. If your levels are low, your health care team may stop the chemotherapy for a while, reduce the dose of the drug, or give you a blood transfusion. They may also give you medicines that help your body to make new blood cells.
  • Cells in hair roots: Chemotherapy may cause hair loss. If you lose your hair, it will grow back after treatment, but the colour and texture may be changed.
  • Cells that line the digestive tract: Chemotherapy can cause a poor appetite, nausea and vomiting, diarrhoea, or mouth blisters. Your health care team can give you medicines and suggest other ways to help with these problems.

Ask whether chemotherapy could make you unable to have children. Chemotherapy can cause infertility in adults, but most children treated with chemotherapy for leukaemia seem to have normal fertility when they grow up. If teens or adults want to have a child someday after treatment, they may choose to store sperm or eggs before treatment starts.

Targeted Therapy

Targeted therapies are drugs that can block the growth of leukaemia cells. For example, a targeted therapy may block the action of an abnormal protein that causes leukaemia cells to grow.

Several targeted therapies are used for leukaemia. The type of targeted therapy depends on the type of leukaemia:

  • For CML and ALL: People with the Philadelphia chromosome may receive a targeted therapy. Nearly everyone with CML (chronic myeloid leukaemia) and some people with ALL (acute lymphocytic leukaemia) have this chromosome. The targeted therapy used for CML and ALL is a pill that you swallow. Possible side effects include nausea, diarrhoea, rash, and swelling. This drug may also cause headache, hair loss, or joint pain.
  • For CLL: People who have CLL (chronic lymphocytic leukaemia) may receive a targeted therapy that is different from the one used for CML and ALL. This drug is given directly into a vein through a thin needle. It may cause nausea, vomiting, diarrhoea, night sweats, or joint pain. Side effects usually go away after treatment ends.

Questions you may want to ask your doctor about chemotherapy or targeted therapy

  • Which drug or drugs do you suggest for me? What will they do?
  • What are the possible side effects? What can we do about them?
  • When will treatment start? When will it end? How often will I have treatments?
  • How will we know the treatment is working?
  • Will there be lasting side effects?

Radiation Therapy

Some people with leukaemia receive radiation therapy along with chemotherapy. You’ll lie down on a treatment table, and a large machine will aim high-energy rays at your body to kill cancer cells. The machine may be aimed at the brain or other parts of the body where leukaemia cells have been found, or the machine may be aimed at the whole body.

You’ll go to a hospital or clinic for treatment. Radiation therapy for the brain or other areas is usually given 5 days a week for several weeks. Radiation therapy for the whole body is given once or twice a day for a few days, usually before a stem cell transplant.

Side effects depend mainly on how much radiation is given and the part of your body that is treated. Ask your health care team what to expect. Side effects may develop during radiation therapy or months or years later.

Radiation therapy aimed at the brain may cause you to feel tired or to lose hair from your head. Your health care team can suggest ways to manage these problems, which usually go away when treatment ends. However, some side effects, such as memory loss or other problems, may be permanent.

It’s common for skin in the treated area to become red, dry, and itchy. Check with your doctor before using lotion or cream on that area. After treatment is over, the skin will slowly heal.

You’re likely to become tired during radiation therapy, especially in the later weeks of treatment. Although getting enough rest is important, most people say they feel better when they exercise every day. Try to go for a short walk, do gentle stretches, or do yoga.

Questions you may want to ask your doctor about radiation therapy

  • Why do I need this treatment?
  • When will treatment start? When will it end? How often will I have treatments?
  • How will we know the treatment is working?
  • What side effects should I expect? What should I tell you about?
  • Are there any lasting effects?

Stem Cell Transplant

Some people with leukaemia receive a stem cell transplant. This treatment is done after radiation therapy aimed at the whole body, a large dose of chemotherapy, or both. Radiation therapy and chemotherapy will destroy both leukaemia cells and normal blood stem cells in the bone marrow.

Stem cell transplants take place in the hospital. You may need to stay in the hospital for several weeks.

To replace the normal blood stem cells that are destroyed by radiation therapy and chemotherapy, you’ll receive healthy blood stem cells through a vein. It’s like getting a blood transfusion. The transplanted stem cells will move to the bone marrow and make new blood cells.

People who receive stem cells from a donor, such as a sister or brother, may get graft-versus-host disease. The donated white blood cells may react against your normal issues and harm your liver, skin, or digestive tract. This disease can be mild or very severe. It can occur any time after the transplant, even years later. Steroids or other drugs may help.

Questions you may want to ask your doctor about stem cell transplants

  • What kind of stem cell transplant do you recommend? Where will the stem cells come from?
  • How long will I be in the hospital? Will I need special care? How will I be protected from germs?
  • What care will I need when I leave the hospital?
  • What are the risks and side effects of this treatment? What can we do about them?
  • How will we know if the treatment is working?
  • What is my chance of a full recovery? How long will that take?