CAR T for Multiple Myeloma: What to Expect at Your Appointments

Chimeric antigen receptor therapy (CAR T cell therapy) has shown great promise in treating some blood and bone marrow cancers, including multiple myeloma, lymphoma, and relapsed/refractory CLL. Your doctor may recommend this form of treatment when other therapies fail or your cancer comes back. While it comes with unique challenges, CAR T therapy can enable your cells to kill the cancer through CAR expression.

The entire process can span several months, including several pre-treatment appointments, the actual CAR T infusion, and follow-up appointments. Here’s a breakdown of what you can expect.

Before starting CAR T therapy, you will undergo a series of appointments and tests to determine whether you’re a candidate for the treatment.

“Patients typically undergo a series of tests to ensure eligibility, including blood tests, imaging (CT or PET scans), bone marrow biopsy, organ function tests (heart and kidney), and infectious disease screening,” said Wael Harb, MD, a board-certified hematologist and oncologist at MemorialCare Cancer Institute at Orange Coast and Saddleback Medical Centers in Orange County, California.

Factors that may impact your eligibility include the type and stage of your cancer, your health status, and your ability to tolerate the treatment. You may not be eligible if you have an extensive medical history, have undergone certain cancer treatments in the past, or have an uncontrolled autoimmune condition.

Your doctor will discuss these factors with you before recommending CAR T-cell therapy. This is the ideal time to ask questions about the process and aftercare. You may also meet with a financial counselor to learn about the cost of therapy, including insurance coverage and potential financial assistance options.

If you’re a candidate and decide to proceed, you’ll meet with several CAR T team members, including a care coordinator, social worker, pharmacist, dietitian, and infusion nurse. You’ll need to take precautions leading up to treatment, such as avoiding live vaccinations and practicing good hygiene to prevent infection. Your doctor may also recommend a specific diet to ensure you’re getting proper nutrition.

Other preparations include signing consent forms, arranging work or family responsibilities, and addressing potential transportation or lodging needs during your treatment.

Before your CAR T infusion, you’ll undergo a leukapheresis procedure to collect your T cells (immune cells that help fight infection and disease). This process involves drawing blood through an IV or central venous catheter (CVC), separating the T cells from other blood components, and returning the remaining blood to your body. It takes three to five hours to complete.

The collected T cells are genetically modified in a lab to produce chimeric antigen receptors and are then multiplied before being infused back into your body during treatment. The preparation time varies depending on the CAR T cell product, said Abhinav Deol, MD, a hematologist-oncologist and member of the Bone Marrow and Stem Cell Transplant Multidisciplinary Team at Karmanos Cancer Institute in Detroit, Michigan. “Some products for lymphoma can be available in about two to three weeks, and others may take six to eight weeks to manufacture.”

The infusion takes place at a hospital or specialized treatment center. It takes anywhere from 30 minutes to several hours, but you’ll likely be admitted to the center for several days or longer. However, some treatment centers now offer outpatient CAR T therapy followed by daily monitoring to those who meet the eligibility criteria.

Before the infusion, you need lymphodepleting chemotherapy to prepare your body for the therapy. These medications may be given orally, through an IV, or by injection several days before your planned CAR T infusion. Pre-treatment helps create an environment that makes it easier for the infused T cells to multiply and attack the cancer.

The infusion of CAR T cells is similar to a blood transfusion. The size of your veins determines the type of access used for infusion, either through an IV line or a CVC. The process usually takes 30 minutes to an hour. An infusion nurse will monitor you for any reactions or side effects during and directly after the process.

You’re closely monitored for immediate complications for up to an hour and then transferred to your recovery room. The most common risks associated with CAR T therapy are cytokine release syndrome (CRS) and neurotoxicity (inflammation in the brain).

CRS occurs when the infused CAR T cells become highly active and release large amounts of cytokines into the bloodstream. Cytokines are proteins that help regulate immune responses, but they can cause an inflammatory response in excessive amounts.

Common symptoms of CRS include:

• Fever

• Chills

• Muscle pain

• Nausea

• Vomiting

• Fatigue

• Headache

• Fast heartbeat

• Low blood pressure

Neurotoxicity can cause confusion, seizures, hallucinations, and other neurological problems. You should avoid driving for at least eight weeks after the infusion due to the risk of delayed neurological complications, Dr. Deol said.

Dr. Harb added that infection, anemia, low platelet count, respiratory issues, organ dysfunction, and prolonged cytopenias (low blood cell counts) are also possible.

Myo Htut, MD, a board-certified hematologist at City of Hope in Duarte, California, told Patient Power that when outpatient CAR T therapy is an option, “patients are followed closely for about 10 to 14 days (first two weeks) to monitor toxicities related to CAR T therapy.” If there are no significant side effects, weekly monitoring continues for weeks three to four, followed by monthly monitoring in those without complications.

If outpatient isn’t an option, you can expect to be hospitalized for seven to 10 days for monitoring if you do not experience significant side effects, Dr. Deol said. Once home, he added that you’ll need someone to monitor you at home, contact your care team, and bring you to the clinic or hospital if there are any concerns or symptoms related to CRS or neurological complications.

“Most patients who don’t have significant complications feel back to baseline and hopefully better around a month after CAR T cell therapy,” said Dr. Deol. “Patients may have slower recovery times if they develop cytokine release syndrome or neurological complications that require additional interventions.”

The exact post-treatment follow-up schedule will vary based on your treatment response and any potential side effects or complications. You’ll continue seeing your oncologist and cancer care team for regular check-ups and monitoring.

“It generally takes four to six weeks to recover fully,” said Dr. Htut. “There can be low blood counts in some patients, which can take up to three months to recover [from].”