If you have been diagnosed with peripheral T-cell lymphoma (PTCL), you probably have many questions and concerns. This fact sheet will help you learn about PTCL, its treatment options, the importance of communication with your health care team and sources of emotional and practical support.
What is PTCL?
PTCL is a rare and often fast-growing cancer that develops from white blood cells called T-lymphocytes, or T-cells. T-cells are an important part of the immune system; they help your body fight infection. In cases when some T-cells start to grow too quickly and out of control, they can accumulate in the body. This is what happens in a T-cell lymphoma. The term PTCL is sometimes used to describe a group of T-cell lymphomas. The three most common types are PTCL not otherwise specified (PTCL-NOS), anaplastic large cell lymphoma (ALCL) and angioimmunoblastic T-cell lymphoma (AITL) but many other types exist.
PTCL is most often treated with a combination of chemotherapies. Common chemotherapy combinations for PTCL are CHOP (cyclophosphamide, doxorubicin, vincristine, prednisone) and CHOEP or EPOCH (etoposide, vincristine, doxorubicin, cyclophosphamide, prednisone). Sometimes your doctor may recommend a stem cell or bone marrow transplant at the end of combination chemotherapy.
If your lymphoma does not go away or goes away and comes back other treatments are often recommended. Pralatrexate was the first drug the U.S. Food and Drug Administration (FDA) approved specifically for PTCL patients. Pralatrexate is approved for treating patients with relapsed (disease returns after treatment) or refractory (disease does not respond to treatment) PTCL. In 2011, the FDA approved romidepsin injection for the treatment of PTCL in patients who have received at least one prior therapy. Other drugs now approved for relapsed T-cell lymphoma include belinostat and brentuximab vedotin (anaplastic large cell only).
Clinical trials evaluate new treatments, like an immunotherapy (treatment that uses the body’s immune system to fight cancer), help researchers make progress in treating cancer. Many new drugs and treatments for PTCL are being studied in clinical trials. If you would like to participate in a clinical trial, ask your doctor or nurse about any trials available for people coping with PTCL. Read CancerCare’s “Don’t Be Afraid of Clinical Trials” fact sheet for more information on clinical trials.
Communicating with Your Health Care Team
Be sure you’re comfortable talking with your doctor and other members of your health care team. Your health care team includes nurses and social workers as well as your primary care doctor and cancer specialist. You should feel at ease talking openly and sharing your concerns with them. Remember: you are a key member of the team.
Take an active role in your health care. Make written notes about questions or concerns you have. This can help you keep track of issues to discuss with your health care team. You may find it helpful to take someone with you to your medical appointments. Taking notes during appointments can be helpful, too. Reviewing the notes later will help you remember what was discussed.
Understand the treatment plan your doctor is recommending. Many factors need to be considered in choosing the treatment that’s best for you. To be sure you’re comfortable with the treatment plan your doctor has proposed, consider getting a second opinion. Read CancerCare’s fact sheet titled, “When to get a Second Opinion” for more information.
Share your concerns and feelings. Talk with family and friends about how you’re coping. Let your loved ones show their concern for you by helping out in practical ways such as driving you to medical appointments, doing household chores or simply listening when you need to talk.
Talk with a professional counselor or oncology social worker. After being diagnosed with PTCL, you may feel sad or worried about the future. Many people with cancer have these feelings. It may be helpful to talk with someone who specializes in helping people with cancer cope with emotional concerns. CancerCare’s professional oncology social workers provide individual counseling free of charge.
Consider joining a support group. A support group connects you with others going through a similar situation. You can share experiences and learn from each other. CancerCare’s support groups are led by professional oncology social workers. We offer face-to-face support groups, as well as telephone and online groups.
Make time for yourself. Prayer, meditation, exercise, yoga and other mind/body practices can help quiet the mind and provide clarity and peace during a crisis of cancer.
CancerCare’s A Helping Hand. CancerCare’s A Helping Hand is a searchable, online database of financial and practical assistance available for people with cancer. This comprehensive online tool features up-to-date contact information and descriptions for hundreds of national and regional organizations offering financial help to people with cancer. You can search by diagnosis, zip code and type of assistance.