Support for Primary Central Nervous System Lymphoma

After you receive treatment for primary central nervous system lymphoma, your NYU Langone doctors determine how often you need follow-up appointments.

These visits may include physical exams, blood tests, and imaging tests to ensure the disease has not returned. Most people have an MRI scan and physical exam every three to six months after treatment ends.

Doctors at NYU Langone remain involved in your care and are available seven days a week to answer questions, address your concerns, and assist with any needs that might arise. Support services are also available at NYU Langone’s Perlmutter Cancer Center.

Supportive and Integrative Care

The supportive care team at Perlmutter Cancer Center provides ongoing treatment for pain or discomfort. Pain management includes the use of medication and integrative therapies.

Integrative health services offered at NYU Langone include acupuncture, which involves inserting fine needles at certain anatomical points to relieve cancer-related pain, dry mouth, and fatigue caused by treatment. Our specialists also offer massage therapy, which can help reduce stress.

We also provide treatment for any medication-related side effects, including infection, irritation of the mouth and intestines, and bleeding from the nose or gums.

Rehabilitation

At Rusk Rehabilitation, our experts prescribe and provide treatments designed to help you better manage primary central nervous system lymphoma.

Managing Weakness and Fatigue

After an evaluation by a doctor at Rusk Rehabilitation, you may be prescribed physical and occupational therapy. This can include strength training and aerobic exercise to address any weakness and fatigue caused by the cancer or the treatment.

Our specialists create a customized rehabilitation program with the goal of optimizing your independence during everyday activities.

Neuropathy Treatment

Neuropathy, or nerve damage, may be a side effect of the chemotherapy drugs used to treat primary central nervous system lymphoma. If you have neuropathy, you may experience numbness, tingling, pain, or weakness in the hands, feet, arms, legs, or other parts of the body.

Doctors at Rusk Rehabilitation can prescribe medication to ease any discomfort due to neuropathy. Physical therapy can prevent the condition from interfering with your balance, strength, and ability to walk.

Cognitive Rehabilitation

Depending on where the tumor is located in the brain, you may experience trouble thinking or processing information. At Rusk Rehabilitation, our doctors, neurologists, and psychologists can help you regain cognitive ability or adapt to any challenges you may be experiencing.

Physical and Occupational Therapy

Primary central nervous system lymphoma tumors can affect your balance and the way you walk or perform daily activities. Our rehabilitation doctors can prescribe physical and occupational therapy to address these challenges, and can create an exercise-based program that maximizes your ability to compensate for a loss of balance.

Occupational therapists are available to help people return to their usual activities, such as preparing meals and using a computer.

Speech and Swallowing Therapy

Depending on the location of the tumor and treatments, you may have trouble with speech and swallowing. Our rehabilitation doctors can prescribe speech and swallowing therapy to provide strategies to restore function, including exercises for the mouth, tongue, and voice box.

This therapy can also help people who are having problems with memory and communication skills.

Visual Rehabilitation

When primary central nervous system lymphoma involves the eye, vision can be affected. Our rehabilitation doctors can prescribe visual perceptual rehabilitation to help people improve the skills necessary for cooking, reading, writing, and getting around.

HIV and AIDS Support

HIV infection and AIDS are chronic, lifelong conditions. People who have HIV infection and AIDS need continuous medical attention. NYU Langone doctors help people with these conditions to manage their medications and any complications that arise.

Most people with HIV infection use a combination of medications to prevent the virus from reproducing. These antiretroviral medications are designed to keep the virus in check for life. Long-term use of these medications, however, increases the risk of heart attack.

People on antiretroviral therapy visit their care team every few months for regular checkups and are monitored for side effects, such as nausea, vomiting, diarrhea, skin rashes, and osteonecrosis, which is a condition in which poor blood supply leads to the breakdown of bones. Complications include infections, such as cytomegalovirus infection or nontuberculous mycobacterial infection, as well as liver damage, weakening of bones, and anemia.

If you have HIV and AIDS as well as primary central nervous system lymphoma, your NYU Langone doctors work together to manage your care.

Psychological and Social Support

People with primary central nervous system lymphoma may experience depression, anxiety, and other psychological problems. Our specialists can help you cope with any treatment-related stress.

A psycho-oncologist, a healthcare provider trained to address the psychological needs of people with cancer, can provide you with information about support groups and one-on-one counseling sessions available at Perlmutter Cancer Center.

NYU Langone experts can connect people with HIV infection or AIDS to social workers, educational programs, and community support groups.

Social workers are also available to help you address any financial concerns that may arise during your treatment.

Clinical Trials

New treatment options for primary central nervous system lymphoma may be available through clinical trials, which are scientific studies designed to test promising new cancer treatments. Your doctor can help you determine if a clinical trial is right for you.

The trials may include high-dose chemotherapy with stem cell transplantation, in which damaged stem cells in the bone marrow—the spongy tissue inside bones—are replaced with healthy ones from your own blood or that of a donor.

People who have a stem cell transplant spend several weeks in the hospital and may require antibiotics and blood transfusions. If your immune system was weak to begin with, due to AIDS or another health problem, your recovery time may be longer. NYU Langone offers support services to help you and your family throughout recovery from a stem cell transplant.

Other treatments being tested in clinical trials include targeted medications, such as monoclonal antibodies, which target and destroy cancer cells, and tyrosine kinase inhibitors, which block enzymes that contribute to cancer growth. These medications may be taken with chemotherapy drugs.