If you've been diagnosed with diffuse large B-cell lymphoma (DLBCL), you've probably heard of an innovation called CAR T-cell treatment. This gene-based immunotherapy is available for folks who have not responded to, or who have relapsed after, at least two other types of cancer treatment.
And, yes, it has side effects that can range from ones that require no treatment to ones that can be life-threatening. Fortunately, your care team can manage them all.
“There is no doubt that the side effects of CAR T-cell treatments can be scary, but the message is that this treatment offers [people] a chance for a cure, and these potential side effects are treatable and reversible,” says Matthew Frigault, MD, an oncologist at the Massachusetts General Hospital Cancer Center.
There are two FDA-approved CAR T-cell treatments for DLBCL: axicabtagene ciloleucel (Yescarta) and tisagenlecleucel (Kymriah)
You usually get side effects from these within a week or two after treatment. But some may happen later.
Since some of these side effects can be very serious, these treatments carry a "black-box" warning, the most serious given by the FDA. All sites that provide CAR T-cell therapy must have a special certification, which includes training to recognize and manage issues that come up.
“[People] can be assured that everyone on their team [is] very highly trained and will monitor them closely and carefully while they are hospitalized, and after they leave,” says oncologist Paolo F. Caimi, MD, of University Hospitals Cleveland Medical Center.
Because these side effects can be serious, people who have CAR T-cell therapy must be close to the site of their treatment for a period of time after they're released, he adds.
The possible side effects that your doctor will discuss with you include:
Cytokine Release Syndrome (CRS)
You may have heard of the “cytokine storm” in 2018, when many people got seriously ill during flu season. This “storm” also goes by the name of cytokine release syndrome, or CRS.
Cytokines are molecules that help the body fight infections like the flu. But when your body makes too many, the result is widespread inflammation. That can cause serious problems.
CRS is the most common side effect of CAR T-cell treatment. That’s because after you get CAR T cells, your body’s immune system plans an all-out assault on your cancer cells, with load of cytokines leading the fight. Although that means your body is fighting the cancer, the massive release of cytokines can cause CRS.
“One way to think of it is that it’s almost too much of a good thing,” Frigault says.
- Low blood pressure
- Trouble breathing
- Rapid heartbeat
- Kidney and liver problems
In most cases, these symptoms are pretty mild and can be managed with things like steroids, acetaminophen and IV fluids. In more severe cases, you may get a drug called tocilizumab (Actemra).
A second set of side effects falls under the umbrella of something called neuro toxicities. That means they can affect your brain or nervous system. They could include:
- Loss of balance
- Trouble speaking
These symptoms are manageable and generally only last a few days. In severe cases, you may get steroids to handle them.
Immune System Issues
DLBCL affects a special type of infection-fighting white blood cell called a B cell. The CAR T-cell treatment targets a molecule on your B cells called CD19. It'll affect both cancerous and noncancerous B cells, and sometimes too many healthy B cells die off. That’s when you may get B-cell aplasia, which leaves you prone to more infections.
The treatment is immunoglobulin therapy, which gives your body the antibodies you need to fight off infection.
Tumor Lysis Syndrome
You may hear this called TLS. When cancer cells break down or die, they release certain substances into your blood. Sometimes, when cancer cells die quickly, your kidneys can’t get rid of these substances from your blood fast enough. That's TLS.
- Difficulty peeing
Serious Allergic Reactions
Your immune system may go into overdrive after CAR T-cell treatment, trying to fight off the CAR, or chimeric antigen receptors. This may lead to a condition called anaphylaxis, which is an allergic reaction -- just like some people get a bad allergic reaction to a bee sting,
Symptoms can range from hives and facial swelling to trouble breathing and low blood pressure. This is not as common as other side effects, but it does need immediate treatment to help you breathe and ease the response.