What Is Anaplastic Large-Cell Lymphoma?
ALCL is a serious illness. It can be fast growing, and it often returns. Treatments can help you fight it. Other therapies can help you feel better.
Scientists are still looking for new and better ways to treat both the disease and the symptoms.
When you have lymphoma, cells called lymphocytes grow out of control. These are white blood cells that usually fight infection. With ALCL, they build up in small glands called lymph nodes or in other parts of your body, like your lungs or skin.
ALCL can show up in two ways:
- In the skin, it's called cutaneous ALCL. It usually grows slowly.
- In the lymph nodes and other organs, it's called systemic ALCL. It often spreads quickly.
Doctors will also need to find out whether your cancer has a certain protein, called ALK.
- ALK-positive cancers are more common in young people and usually respond well to chemotherapy.
- ALK-negative cancers are more common people over 60. This type may need stronger treatment because it is more likely to come back.
Researchers don't know what causes ALCL, but they do know it isn't inherited.
Often, the first sign of systemic ALCL is swelling in the neck, armpit, or groin, where your legs meet the trunk of your body.
You may also have symptoms like:
With cutaneous ALCL, you may first notice one or more raised, red bumps on the skin that don't go away. These are tumors. They can form open sores, and they may itch.
Getting a Diagnosis
When you come in for a visit, your doctor will want to know:
- When did you first notice changes?
- Are there any swollen glands?
- Is there pain? Where?
- What about appetite? Any weight loss?
- More tired than usual?
- Any skin bumps? Do they itch?
To see if you have ALCL, doctors may take a biopsy from a swollen lymph node. It's quick and doesn't require a hospital stay. Doctors make a small cut in the skin and remove all or part of the lymph node, or use a needle to take a sample. They look at the cells under a microscope.
Other tests may be needed, such as:
- Blood tests
- Bone marrow biopsy. Doctors use a special needle to remove a small amount of the soft material inside your bones and check it for cancer cells.
- Chest X-ray, which uses radiation in low doses to make images of organs in your chest.
- CT. A powerful X-ray that makes detailed pictures of the inside of your body.
- MRI, which uses powerful magnets and radio waves to make pictures of organs and structures.
- PET scan, in which radioactive materials called tracers look for cancer.
These tests look to see where and how much the cancer has spread. This is called staging. It helps you and your doctor decide the right treatment.
- Stage I. Cancer is found in lymph nodes in only one part of the body, like the neck or groin.
- Stage II. Cancer is found in two or more groups of lymph nodes. All of the lymph nodes are either above or below the diaphragm, a sheet of muscle between your chest and stomach.
- Stage III. Cancer is found in lymph nodes both above and below the diaphragm.
- Stage IV. ALCL has spread to other organs, such as the liver, bones, or lungs.
Questions to Ask Your Doctor
- What stage is the cancer?
- Where exactly have you found cancer?
- Is it ALK-positive?
- Have you treated someone with ALCL before?
- What treatment do you recommend?
- What are the side effects?
- How and when will we know if it works?
- What if it doesn't work?
- Could I be in a clinical trial?
- How do I connect with other families facing ALCL?
No matter what form of ALCL you have, there are treatments to help. And researchers are hopeful to have new and better options in the future.
Your treatment choices will depend on the type of ALCL you have and where it is in the body.
Chemotherapy is the main treatment for systemic ALCL, when the cancer is in your lymph nodes and other parts of the body.
A kind of chemotherapy called CHOP is used for both ALK-positive and ALK-negative ALCL. The therapy gets its name for the first letters of the drugs it uses: Cytoxan, hydroxydaunorubicin, Oncovin, and prednisolone.
If your cancer is ALK-negative, doctors may use CHOP at higher doses.
If your cancer doesn't respond to CHOP, you may get another drug called brentuximab vedotin (Adcetris).
A stem cell transplant may also be an option for you, but it's a complicated and risky procedure. It's usually only done when other treatments have failed. Doctors inject stem cells into your body to help you grow new cancer-free ones. The stem cells come from your own body, or from a closely matched donor.
For primary cutaneous ALCL, treatment may include:
- Radiation, which uses high-energy rays to kill cancer cells
- Surgery to remove the tumors
If the cancer is in many areas of the skin, you may need a combination of chemotherapy drugs.
Taking Care of Yourself
Being diagnosed with cancer can make you feel like you've lost control. Remember that you're in charge of your treatment decisions and how you live your life.
While you are getting treatment, you may not feel your best. Some treatments, like chemotherapy, have side effects. You may feel weak or tired, and you may be sick to your stomach
To help you feel better:
- Eat enough calories and protein each day to keep up weight and stay strong. Try several small meals instead of fewer bigger ones.
- Ask the doctor or nurse for ways to ease nausea and other side effects of treatment.
- Get support from friends, family members, counselors, or members of your spiritual community. You can also join a support group of other people with ALCL.
- Stay active. Exercise when you feel up to it. Talk to your doctor about what's right for you.
- Try to get good rest.
- Wash hands often, and stay away from people who may be sick.
Don't miss regular doctor appointments. They're key to finding out how well the treatment is going, and to deciding if any changes are needed.
What to Expect
Every situation is different, but treatment to fight ALCL can work well. Sometimes, the cancer comes back. Ask your doctor what to watch for, and listen to your body.
The treatments can bring discomfort. Make sure your doctor knows how you're feeling. Take advantage of other therapies that can ease symptoms and help you feel better.
A serious illness is hard for the whole family. It's natural that you will have questions, concerns, and frustrations. Find the support you need, and ask for help when you need it.
Keep informed about research that's under way. You may be able to take part in a clinical trial.
You can find out more information on anaplastic large-cell lymphoma on the web site of the Lymphoma Research Foundation. It has links to help you find the support of people and families who have ALCL, and to information about clinical trials.