This video will explore CAR T cell therapy You’ll learn what it is, who it may be for, and the risks and benefits. CAR T cells are a new way to treat some cancers with gene therapy. This treatment helps your own immune system find and kill cancer cells. CAR T cells are unique for a few reasons: When we use standard chemotherapy, cancer cells can find ways around that chemotherapy. This therapy works in a new way and doesn’t depend on cancer cells continuing to be sensitive or respond to chemotherapy. It acts in a different way and so patients that have cancer, even if they’ve not responding to other standard therapies, this therapy may still help them. The other thing that’s different about CAR T cells versus the standard therapy, standard chemotherapy is given and the drug actually gradually leaves the body over time, and when a happen when that happens it stops working. We hope that CAR T cells will be able to stay in the body. Perhaps even up to months to years, and if they do, the hope again is that they will continue to kill cancer cells and keep a cancer from returning. Your t-cells are collected from your bloodstream by a process called apheresis. They are sent to a lab to be treated with gene therapy. Your t-cells’ genes are reprogrammed so they grow special proteins called CARs. CAR stands for chimeric antigen receptor. The CARs on the surface of the T-cells help find the cancer cells. The CAR T-cells are grown in a lab until there are millions of them. Then, they’re given back to you through an infusion. Normal T cells may not be able to find cancer cells, but CAR T cells, once in your body Can multiply, find, and destroy them. The treatments using CAR T cells are primarily for people who have had other standard treatments, like chemotherapy or transplant and their disease has relapsed or is refractory. So right now, CAR T cells are not an option for someone newly diagnosed with AML or ALL. The Food and Drug Administration has approved the use of CAR T cells for only a few specific diseases. In many cases, people can only get CAR T-cells therapy through a clinical trial. To join a clinical trial you have to meet specific requirements about your disease and about the kinds of treatments you’ve undergone. It takes a few hours in the clinic to collect the T cells from your bloodstream. Then, it can take two to six weeks for the CAR T cells to be made. During this time you’ll be at home or getting other treatments. About a week or two before the CAR T cells are given to you, you’ll go to the clinic or hospital to get standard chemotherapy infusions. These drugs prepare your body for the CAR T cells. On the day of CAR T cell infusion, you’ll be in the hospital or clinic and the infusion will take about an hour. You’ll be closely monitored for several hours afterwards. You’ll go home if the doctors think you’re doing well enough. Treatment isn’t over after the infusion. Most people need bone marrow biopsies over the next few weeks to monitor how the treatment is working. Doctors will continue to monitor your health for up to 15 years. You may even get more infusions of CAR T cells. The concern about CAR T cells is that we know that they can have some serious side effects. They don’t occur in all patients, but when they do occur, it can be serious and rarely patients can die from these side effects. One common side effect of CAR T cell therapy is a syndrome called cytokine release syndrome. You may hear it called CRS for short. What it means is that your body is setting up an immune reaction, kind of an inflammatory response and when it does that, it releases substances into the bloodstream called cytokines. Cytokines can cause this response in the body, where the blood pressure may fall, patients may develop a fever, become quite ill. Some patients require care in an intensive care unit. The good thing is that patients recover. And we also know other ways now to manage this CRS than we did when CAR T cells were first being used. So doctors now recognize the signs. We can teach patients about the signs to watch for. Another side effect, other than this CRS, that has been seen with CAR T cells is something called neurotoxicity. Some patients have developed difficulty thinking, problems with talking, but even some patients have had seizures. So it’s really important for family members or caregivers of a patient who undergoes CAR T cell therapy to be alert for signs or symptoms of change. Therefore, if you would have any signs or symptoms of either CRS or neurotoxicity, it would be very important to contact your medical team and to be seen right away. Earlier treatment will help you get better. If you’re meeting with a doctor about CAR T cell therapy, ask specific questions about the treatment and what you can expect. Some questions that you might ask include: Are CAR T cells the right therapy for me? Is this a clinical trial, or is this an FDA-approved CAR T cell therapy? What are the risks for this treatment? And what have people experienced, who have had this therapy before me? And, how well has this worked for other people? Will I need to be in the hospital? And if so, how long? Will my insurance cover the cost for this treatment? Or will it be paid by the clinical trial? The FDA approved CAR T cell therapies are very expensive. If your doctor says the FDA approved CAR T cell therapy is right for you, you’ll need to work very closely with your insurance company to make sure you have the appropriate coverage. If you are part of a clinical trial testing CAR T cells, the CAR T cell portion of that trial is typically not billed to a patient. However, it is still important to check with your insurance company as there may be expenses that you’ll have to pay for yourself. You can find a list of CAR T cell clinical trials at the Jason Carter Clinical Trials Program website. JCCTP.org or call (888)-814-8610 This video is offered by the Be The Matched Patient Support Center. And the Jason Carter Clinical Trials Program. Contact the patient support center for free one-on-one support, Information, and resources about blood and marrow transplant and CAR T cell therapy.