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 aggressive (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 these cells start to grow too quickly and resist dying, they can accumulate in the body. This is what causes cancer.
PTCL is most often treated with a combination of chemotherapies. Two common chemotherapy combinations for PTCL are CHOP (cyclophosphamide, doxorubicin, vincristine, prednisone) and EPOCH (etoposide, vincristine, doxorubicin, cyclophosphamide, prednisone).
Pralatrexate (Folotyn) 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 (Istodax) injection for the treatment of PTCL in patients who have received at least one prior therapy.
Relapsed PTCL patients may also be treated with chemotherapy combinations such as ICE (ifosfamide, carboplatin, etoposide), followed by a stem cell transplant. Gemcitabine (Gemzar) is effective against some forms of relapsed PTCL and is often given in combination with other chemotherapies.
Clinical trials, studies that evaluate new treatments, help researchers make progress in treating cancer. Because PTCL is a rare cancer, it can be challenging to find patients to enroll in clinical trials. However, many new drugs 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.
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.
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.
Ask about support resources in your community. Community groups that provide support for people with cancer may be able to offer volunteer drivers, respite care and other services. Talk to a social worker about the kinds of help that may be available in your community.
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.