Refractory CNS lymphoma

What is Refractory CNS Lymphoma?

Refractory CNS lymphoma (rCNSL) is a rare and aggressive form of central nervous system (CNS) lymphoma, which is a type of non-Hodgkin lymphoma that occurs in the brain and spinal cord. It is an incurable form of cancer that tends to affect people 50 to 70 years of age, and is strongly associated with HIV infection. It is diagnosed when a person has already undergone at least a single round of standard treatment for CNS lymphoma, but the cancer has either not responded to treatment or returned after a brief remission period.

Symptoms of Refractory CNS Lymphoma

The symptoms of rCNSL can be variable and depend on the particular area of the brain or spinal cord that is affected by the tumor. Symptoms may include headaches, seizures, confusion, vision problems, and cognitive impairment. More specific symptoms may include weakness in a particular area, changes in coordination, and changes in the way someone speaks or moves.

Treatment for Refractory CNS Lymphoma

Treatment options for rCNSL include chemotherapy, radiation, and high-dose intrathecal chemotherapy. Surgery is not often used due to the risk of disrupting the sensitive neurological tissues in the brain and spine. Additional treatments may include chemotherapy, targeted therapy, monoclonal antibodies, and stem cell transplants. In some cases, clinical trials of new treatments may also be recommended by the doctor.

Management of Side Effects

Side effects of treatment for rCNSL can include fatigue, hair loss, nausea, skin problems, and an increased risk of infection. People who receive radiation therapy may also experience swelling of the brain or problems with memory and concentration. The doctor will work with the patient to manage any side effects and minimize their severity.


Living with rCNSL can be challenging, both physically and emotionally. It is important for people living with rCNSL to focus on managing their symptoms and implementing strategies to cope with the impacts of the condition and treatment. These strategies may include medicine to manage pain and nausea, relaxation techniques, and lifestyle changes such as diet and exercise.


Living with rCNSL can also be emotionally challenging, and it is important for people to seek out social support. This can include support from family and friends, as well as support from healthcare providers and organizations. Resources like online support groups and networks can also be helpful in connecting with others who are in similar situations.