Living With Advanced Follicular Lymphoma
Resources, expertise, and survivor support to help you after a diagnosis

There are more than 30 different types of non-Hodgkin lymphoma, but some are a lot more common than others. Follicular lymphoma is the most common type of indolent — or slow-growing — lymphoma, accounting for 20 to 30% of all non-Hodgkin lymphoma cases.

“Follicular lymphoma is not considered curable, but many patients live [for a long time] with this disease,” Dr. Jakub Svoboda, a hematology specialist at Penn Medicine, tells SurvivorNet. In fact, even when follicular lymphoma is diagnosed at an advanced stage, the average survival is greater than twenty years.

Because follicular lymphoma grows so slowly, treatment sometimes involves a “watch and wait” approach rather than starting active treatment right away.

In this guide, we will break down how this type of lymphoma is diagnosed, the treatment options for advanced cases and cancer that recurs (comes back), what to expect while undergoing treatment, and what it’s like to live with this form of blood cancer.

While “active surveillance” or a watchful waiting approach is taken for many cases of follicular lymphoma, a more advanced diagnosis may mean you need to start treatment right away.

Your medical team will work with you to find the most effective treatment option while maintaining your quality of life as much as possible.

“The best approach is to be careful about when to initiate treatment, and then to choose the proper treatment to try and maximize the response rates … which tend to be quite good in follicular lymphoma,” Dr. Elise Chong, an oncologist/hematologist at Penn Medicine, tells SurvivorNet.

Follicular lymphoma responds well to chemotherapy and radiation. In patients with localized disease — that has not spread — radiation may even be curative. And for patients with advanced disease, several new treatment approaches are showing quite a bit of promise.

The recommended treatment, especially in advanced cases, is often a monoclonal antibody called rituximab (Rituxan), alone or in combination with chemotherapy.

“Rituximab targets a protein called CD20 on the cell surface of the follicular lymphoma cells,” explains Dr. Chong. “We’ve been using this antibody for many years now.”

After chemo, doctors may give additional antibody infusions every two months for up to two years — a strategy called maintenance that can prolong remission without adding harsh side effects.

For some patients, remissions are long-lasting, but for others, their disease either does not respond to initial treatment or it returns (recurs).

If your cancer does come back, your doctor will be ready with another round of treatment that oncologists call “second-line therapy” — and options have advanced quite a bit recently.

“It took us from the 1970s to the late 90s to improve on the four drug combination CHOP, which is still the standard, adding rituximab to that [the previously discussed R-CHOP combination],” Dr. Stephen Schuster, medical oncologist at Penn Medicine, tells SurvivorNet.

Today, not only have the treatments gotten better, but the pace of new drug development has sped up, he says. Several new immunotherapies — drugs that harness the power of the immune system to fight cancer — have come out, just in the last few years.

New immunotherapy drugs approved for non-Hodgkin lymphoma in recent years include:

• Brentuximab vedotin (Adcetris)
• Polatuzumab vedotin (Polivy)
• Tafasitamab (Monjuvi)

A type of immunotherapy known as bispecific antibodies have shown much promise in the non-Hodgkin lymphoma space.

These drugs can simultaneously bind to proteins, one on the cancer cells and one on the immune system cells. This prompts the immune cell to eliminate the cancer cells.

When Is CAR T-Cell Therapy Used?

For cancer that continues to return or does not respond to other treatments, chimeric antigen receptor (CAR) T-cell therapy is one of the newest high-tech treatments. This approach involves taking your own immune cells, called T cells, and genetically modifying and multiplying them in a lab so that they attach to proteins on the surface of your lymphoma cells and attack them.

These treatments each work in a slightly different way. And they can be effective for people who’ve tried and failed at two previous treatments.

“We’re coming up with the best approaches for people who were not successfully treated by first- or second-line approaches,” Dr. Schuster says.

Whether you underwent treatment for follicular lymphoma, or you and your medical team are taking a “watch and wait” approach, your “survivorship plan” will involve a degree of monitoring going forward.

A survivorship plan will include a schedule for follow-up exams and tests, plus a schedule for tests to check for any long-term health impacts from your cancer or treatment, and screening for any new cancers.

Your doctor will likely tell you what to look out for in terms of side effects that could show up late or over the long term. Your care team will provide you with diet and physical activity recommendations as part of your survivorship plan.

People who have cancer may wonder if diet and exercise are still priorities for their health. The short answer is: absolutely. In fact, it may be more important than ever for patients’ well-being.

“In terms of cancer, oftentimes patients feel that they don’t have any control over any part of their life and that’s not true,” Dr. Sairah Ahmed, associate professor in the division of cancer medicine at the University of Texas MD Anderson Cancer Center, tells SurvivorNet.

On the contrary, she says, “diet, exercise, and stress control are extremely important when going through cancer therapy, as well as once you’re done treating your cancer and trying to get back to the rest of your life.”

Because of follicular lymphoma’s slow-growing nature, the disease may be first detected when a patient seeks medical treatment for something else.

For example, a patient may develop kidney stones and have a CT scan because of severe back pain. The CT scan shows the kidney stones, but it also shows some 2 centimeter lymph nodes in the groin area.

Symptoms may include:

• Swelling in the lymph nodes
• Night sweats
• Unexplained fevers
• Weight loss (10 lbs. or more)
• Fatigue

However, these symptoms are rare. Typically, when a patient begins to experience symptoms, the cancer has progressed to stage 3 or 4 follicular lymphoma.

To confirm a lymphoma diagnosis, your doctor will need to perform a biopsy on a lymph node.

A biopsy can determine what the type of cancer is, but imaging tests will then be needed to discover where in the body the cancer is.

Your doctor may order a CT or PET scan to determine the stage of the cancer.

For follicular lymphoma, the approach is often to monitor the disease for signs of progression rather than begin treatment right away. However, if symptoms have become problematic, your doctor may recommend active treatment.

Follicular lymphoma is often thought of as more of a chronic condition, with long periods of good health between treatments.

“If you have a garden that’s growing, we can kind of mow the lawn and then many years later the grass grows back and then we give another treatment and mow the lawn again. That’s follicular lymphoma,” Dr. Michael Jain, medical director of the CAR T-Cell Program at Moffitt Cancer Center, tells SurvivorNet.

“When the grass finally gets too high, we mow it back. Then we enjoy years of green before bringing the mower out again.”

When treatment is not needed immediately for follicular lymphoma, a “watchful waiting” or “active surveillance” approach may be taken.

This surveillance period may involve regular:

• Physical examinations
• Blood work
• Imaging (CT or PET scans)

Physicians are often eager to discuss the medical aspect of facing cancer, but may be less available to help you cope with the stress and mental toll this disease can have.

There are many questions worth asking about stress management, emotional wellness, and how both can impact a patient during the cancer journey.

This is not always the easiest conversation to start with a doctor, so we’ve provided resources to help you get questions about your emotional needs answered.

In order to keep your mental health in check, it’s important to be aware of signs, which can be subtle, that there is something affecting your mind. These signs might include:

• A change in eating or sleeping habits
• Losing interest in people or usual activities
• Experiencing little or no energy
• Numb and/or hopeless feelings
• Turning to drinking or drugs more than usual
• Non-typical angry, upset, or on-edge feelings
• Yelling/fighting with loved ones
• Experiencing mood swings
• Intrusive thoughts
• Trouble getting through daily tasks

These symptoms can be wide-ranging and vary a great deal from person to person. Everyone experiences grief differently, for example. However, if you are feeling unusually sad, on-edge, or like you’re no longer interested in activities you used to love, know that there are many treatment options available and many different healthy ways to help you cope.

Treatment options for people struggling with mental health really run the gamut. While some people may benefit from seeking the help of a psychologist and getting on medication, others see great improvement by simply implementing some lifestyle changes, such as prioritizing exercise and cutting back on alcohol.

Those struggling should know that they are not alone — about one in five American adults has experienced some sort of mental health issue, according to mentalhealth.gov. However, what worked to help someone else cope may not necessarily help you as treatment must be individualized.

Plenty of people continue to work through different parts of the cancer journey. It can help you to maintain a sense of normalcy and get your mind off the diagnosis.

However, patients who are unable to work, need to take significant time off, or are retired may be worried about how they are going to cover the cost of treatment.

As an employee, you have rights — and there are certain specialists who work at cancer centers and may be able to help you figure out bills, transportation assistance, work accommodations, and more.

Also, you can check out SurvivorNet’s in-depth guide on Paying for Cancer Treatment here.