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By Claire Saxton, Vice President, Education and Outreach, Cancer Support Community  |  Sep 2, 2020

CAR-T Cell Immunotherapy: What to Expect

As the largest professionally led nonprofit network of cancer support worldwide, the Cancer Support Community (CSC), including its Gilda’s Club affiliates, is dedicated to ensuring that all people impacted by cancer are empowered by knowledge, strengthened by action, and sustained by community. CSC achieves its mission through three areas: direct service delivery, research, and advocacy.

This article about the side effects of Chimeric Antigen Receptor T (CAR-T) cell therapy is excerpted from CSC’s Frankly Speaking About Cancer series, which can be downloaded from CSC’s web site.

What is CAR-T Cell Therapy?

CAR-T therapy uses a patient’s own immune cells and “re-engineers” them to fight cancer. Some researchers have called these re-engineered cells a “living drug,” and every patient who undergoes CAR-T cell therapy receives CAR-T cells created in a lab just for them.

CAR-T therapy is a very complex treatment. Collecting and altering the cells is difficult and the therapy is only offered at some major cancer centers, primarily to patients with blood cancer. It also is an expensive treatment. Ask if your insurance will cover the drug and hospital costs and if you qualify to get the therapy as part of a clinical trial where the drug cost is covered. Patients may have to travel long distances, so also ask if you can get assistance to cover travel, lodging and food costs for you and a caregiver.

CSC offers no cost Airbnb housing for qualified patients (and/or their caregivers) traveling at least 50 miles for treatment.  Since CAR T requires many steps and at times long visits at or near the CAR T center, this program can be very helpful.

Is CAR-T Cell Therapy Right for You?

Patients treated with CAR-T cell therapy typically have cancers that have recurred or progressed following other treatments. The U. S. Food and Drug Administration has approved CAR T Cell therapy for specific types of Leukemia and Lymphomas. Many of the patients eligible for CAR T cellular therapy have few or no other treatment options available. Eligibility for CAR T depends on cancer sub type, general health status and other factors, including having disease(s) other than cancer. Some people respond very well to CAR-T cell therapy while others do not. Some who respond initially relapse over time.

There is great interest in treating other types of cancer, including solid tumors, with adoptive T-cell therapies. Clinical trials are now enrolling patients with different tumor types. Over time, scientists will learn from these trials which CAR-T cell therapies work best for which cancers.

Side Effects of CAR-T Cell Therapy

The side effects of CAR-T cell therapy can be severe and very serious. This is a major reason why this treatment is done only in hospitals that have a team of physicians, nurses and support staff with the expertise to manage the potentially life-threatening effects. Patients are very carefully monitored for side effects after their CAR-T cell infusions.

Cytokine release syndrome (CRS) is by far the most serious possible side effect. After CAR-T cells are infused back into the body, they release a large amount of cytokines into the bloodstream. This can cause a wide range of problems. Patients at first experience high fevers, and sometimes nausea, fatigue and muscle aches. Unfortunately, the CRS can progress to more serious life-threatening situations with difficulty in breathing and low blood pressure.

Patients who have more cancer in their bodies are more likely to have severe CRS than patients with less cancer in their bodies. It’s a sign that the treatment is working and there is a positive response. The worst symptoms usually occur in the first days or weeks of treatment. As the number of cancer cells goes down, the symptoms tend to go down as well. Doctors use a variety of medicines to help manage these issues and get patients through the first phase of treatment. These include steroids and drugs that can directly block the action of cytokines. Researchers also are working on ways to minimize the chances of CRS occurring.

Some patients have nervous system side effects, including becoming delirious or having hallucinations or seizures. Problems affecting the brain and nervous system can be very severe and life-threatening, lasting from days to weeks for some patients.

Another possible side-effect is B cell aplasia, or the loss of normal B cells. Many CAR-T cells target a specific protein called CD19. The protein is found on both normal and cancerous B cells. This means some normal B cells can also be destroyed. This can reduce the body’s ability to protect itself from infections. Doctors use injections of immunoglobulin (immune defense proteins made by healthy B cells) to help prevent infection. B cell aplasia can continue as long as the CAR-T cells persist in the body. So far, this side effect seems to be well managed with immunoglobulin infusions.

Living with CAR-T Cell Therapy Side Effects

Patients who start CAR-T cell therapy will be told about all of the side effects they might have. It is very important that patients and their caregivers tell their doctors about any side effects they experience. Most side effects can be managed if they are treated early.

Patients who do respond to CAR-T cell therapy and get beyond the initial side effects often have few or no long-lasting side effects and live normal lives. However, patients may have long-lasting side effects from their other treatments.

Getting Support

Patients who get CAR-T cell therapy and their caregivers need a high level of support during the process. If you are considering CAR-T cell therapy, you should:

  • Have an open and honest discussion with your oncology team about your cancer and its treatment.
  • Be willing to change doctors or travel to a different cancer center if your current cancer center does not offer CAR-T cell therapies or CAR-T cell clinical trials.
  • Have a caregiver who can provide physical and emotional support before, during and after the treatment.

Patients and caregivers can find support and additional materials about immunotherapy from the Cancer Support Community’s Helpline (888-793-9355) and website as well as your local CSC or Gilda’s Club. The Cancer Support Community’s Open to Options® program offers help for asking questions of your health care team when facing a cancer treatment decision.

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