If you’ve recently been diagnosed with peripheral T-cell lymphoma (PTCL), you probably have many questions and concerns. This fact sheet is intended to help you learn about PTCL, find answers to your questions, and find sources of 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 which 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.
Terms You Should Know
Hematologist-oncologist A doctor who specializes in treating blood cancers.
Chemotherapy Cancer treatment with one or more drugs. Many types of chemotherapy may be used to treat PTCL. Your hematologist-oncologist may treat your PTCL with chemotherapy treatments such as cyclophosphamide, Oncovin (vincrinstine) and Adriamycin (doxorubicin), and even steroids. A new drug, Folotyn (pralatrexate), was recently approved to treat PTCL after the cancer has come back or stopped responding to other treatments.
Prognosis A prediction about the probable outcome based on stage of disease and treatment options.
Clinical trial A study testing a new cancer treatment. Many new therapies are now showing great promise in treating PTCL, many of which are being studied in clinical trials. You may want to ask your doctor about participating in a clinical trial.
Stem cell transplant A procedure that places (or transplants) healthy blood-forming cells (called stem cells) into your body after they have been collected, either from yourself or someone else. Because these stem cells live and divide in your bone marrow, the procedure is often called a bone marrow transplant. There are many kinds of stem cell transplants (autologous, allogeneic, umbilical cord) which your doctors can explain in detail. Stem cell transplantation is an effective treatment option for some patients 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 doctor or 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 (doing household chores, driving you to medical appointments, listening when you need a sympathetic ear).
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 for those who aren’t able to travel.
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 some clarity and peace during a crisis of cancer.