Although it's clear that immunotherapies have played an important role in non-Hodgkin's lymphoma (NHL) and other blood cancers for many years, this kind of treatment may not be right for you.
Figuring out if it is requires a frank talk between you and your medical team.
First Things First
"Just like there are many forms of NHL, there are many forms of immunotherapy. But patients want to jump right in to something like CAR T-cell therapy because they have read about it, heard about it, and know that it has produced some amazing results," says Brian T. Hill, MD, a medical oncologist with the Cleveland Clinic.
The problem is that CAR T-cell therapy is not used as the starting treatment for NHL. Other effective treatments, including other forms of immunotherapy, have an excellent and longer track record.
"What we want to do is get the right treatments to the right patients at the right time," Hill says. "Immunotherapy is just one tool in the toolbox."
What Type of NHL?
Non-Hodgkin's lymphoma is actually a group of diseases, and yours may be more aggressive than others. Your treatment will depend on not only on the type of NHL you have, but also on how quickly it's growing and how far it has spread.
For example, diffuse large B-cell lymphoma (DLBCL) is an aggressive type that needs quick treatment. Follicular lymphoma is a slow-growing type. Your doctor may recommend a watch-and-wait approach.
Doctors also consider your age, overall health, any medical conditions you have now or had in the past, and the kind of treatment you want.
What Kind of Immunotherapy?
The main treatment for NHL is chemotherapy, and it's likely your doctor will try that first. Sometimes, chemo is combined with a drug called rituximab (Rituxin), a form of immunotherapy called a monoclonal antibody.
It was a "game changer" for some people, Hill says, when it gained approval back in 2006 as a starting treatment for DLBCL in combination with four chemotherapy drugs, known as R-CHOP. Rituximab can be used alone, too. Since then it's also received approval as a starting treatment for people with low-grade or follicular B-cell lymphoma.
Other monoclonal antibodies are approved for other forms of NHL. "Patients are often surprised to learn that monoclonal antibodies are a form of immune therapy and could be among the first treatments they receive," he says.
If you don't respond to this treatment, your doctor can try other approaches and combinations. "NHL is a very treatable disease," Hill says, "and I want to emphasize that not all patients are going to need CAR T-cell treatment or experimental treatment."
Consider the Bigger Picture
"I was out of options and had already been through the wringer with other treatments that failed," says Emily Dumler of Shawnee, KS, "so I thought, 'How hard could this be?'" She was one of the first people to receive CAR T-cell therapy for her DLBCL as part of a clinical trial in 2015.
She found out that it can indeed be tough. "The treatment alone was very hard, but there are other things that come up that you just don't initially think about, and you have to be realistic." That was an important lesson for her.
She suggests that you make sure you have support from friends and family. And remember that some forms of immunotherapy may not be available close to where you live. Dumler had to travel to Texas for treatment, and that involved costs for plane trips, lodging, and food. "Costs you didn't think about can add up quickly," she says.
Although CAR T-cell treatment is approved for certain forms of NHL, health insurers are just catching up with coverage policies. That means treatments will generally be reviewed on a case-by-case basis, and you could need to get approval before you start treatment so your insurance pays for it.
Expect Side Effects
Side effects from immunotherapy are generally milder than from chemotherapy or radiation, but some can be nasty.
Dumler had two classic ones: brain changes and the severe flu-like symptoms of cytokine release syndrome. "The side effects are very frightening," she says. The good news: They're treatable and typically don't last long.
Since immunotherapy treatment like CAR T is relatively new, Dumler admits that sometimes she also worries about long-term effects. "There really isn't a lot of long-term data, and that's something that patients should consider," she says.
Trials Aren't a Last Resort
That's the way that Dumler thought of clinical trials before she became a "guinea pig," she says. "I used to feel sorry for people in trials. Now I know better."
Clinical trials are a mainstay of good medical care. "Immunotherapy is very exciting to both doctors and patients, and there are so many different immunotherapy trials going on that patients may qualify for," Hill says. "This is how treatment improves and how more lives are saved."
If you're interested in an immunotherapy clinical trial for your NHL, talk to your doctor about what's available and may be a good fit for you. You need to think about things like cost and timing and the potential risks and benefits, then see if that clinical trial matches up with your own goals for treatment.
And it's OK to get a second opinion. "If you doctor won't talk to you about immunotherapy, I think people should go see another doctor," Dumler says. "Maybe you won't be a candidate, but maybe you will. And maybe it could save your life."