Follicular Lymphoma: A Slow-Growing Blood Cancer
- Follicular lymphoma is a type of non-Hodgkin lymphoma. It is a slow-growing blood cancer that is considered incurable — however, because it grows so slowly, patients often do not need treatment right away or can go long stretches without getting additional treatment.
- Monitoring, with blood tests and sometimes imaging scans, is an important part of living with follicular lymphoma.
- Even if you are diagnosed with follicular lymphoma at an advanced stage, there are many good treatment options and approaches and many people go on to live very full lives with the disease.
- When treatment is needed, your doctor may recommend a drug called rituximab, a monoclonal antibody, alone, rituximab with a chemotherapy combination, or — in more advanced cases where the disease does not respond or returns — an immunotherapy drug known as a bispecific antibody or CAR T-cell therapy.
Even if you are diagnosed with follicular lymphoma at an advanced stage, there are many good treatment options and approaches, and many people go on to live very full lives with the disease.
Read MoreWhat Is Follicular Lymphoma?
Follicular lymphoma starts in B-lymphocytes, the immune cells that normally churn out antibodies to fight infection. When a genetic glitch makes one of those cells grow out of control, it usually settles inside a lymph node and divides quietly. Doctors call that behavior indolent. Picture grass sprouting in a shady yard: it grows, but so slowly that you might mow just a few times each season. Follicular lymphoma, a type of non-Hodgkin lymphoma, is not rare. Roughly 15,000 Americans receive the diagnosis each year, accounting for about one in four non-Hodgkin lymphomas. Most people diagnosed are over age 60, and women are affected slightly more often than men.Because follicular lymphoma creeps along, many people feel fine at first. A swollen node might be noticed during a dental exam or appear on a CT scan ordered for kidney stones. Classic warning signs — called B symptoms — may include nighttime drenching sweats, unexplained fevers, or weight loss of ten pounds or more, but these occur in the minority.
When Is ‘Watchful Waiting’ Used Instead Of Active Treatment?
Hearing “We’re not starting treatment yet” can be unsettling. Yet decades of research show that watch-and-wait does not shorten survival for most follicular lymphoma patients. Five-year survival across all stages hovers near 90%.
Dr. Michael Jain is a physician at Moffitt Cancer Center in Tampa, Florida, where he treats patients with lymphomas of all types and is the medical director of the Center’s CAR T-cell program.
“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. Jain 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.”
During surveillance, you will see your doctor every few months for an exam and simple blood work, with an imaging scan once or twice a year. Treatment begins only if nodes grow rapidly, impair organ function, or if fevers, night sweats, or low blood counts appear.
When It’s Time to Treat
Doctors weigh several factors before recommending therapy, which might include:
- Symptom burden: Are nodes painful or pressing on vital structures?
- Stage and tumor bulk: Very large masses or widespread marrow involvement usually prompt action.
- Rate of growth: A sudden surge in size or the so-called POD24 (progression within 24 months of first therapy) signals a need for more aggressive options.
- Personal priorities: Work, family plans, travel distance to an infusion center, and tolerance for side effects all shape the decision.
Each choice is highly individual, Dr. Jain says.
“If someone has had long remissions and few prior treatments, we might choose a gentler approach. If the disease is returning quickly, we aim for a therapy that can hold it in check for a longer stretch — even if it means more clinic visits up front,” he explains.
First Choices: Chemo-Antibody Combinations
For many years, the backbone of initial treatment has paired the antibody rituximab with standard chemotherapy drugs. Common combinations include R-CHOP, R-CVP, and rituximab plus bendamustine. These regimens shrink tumors in more than 90% of newly treated patients and often keep follicular lymphoma quiet for five to eight years.
Some people with very limited (stage I or II) disease achieve long remissions with a short course of radiation alone. Others receive obinutuzumab, a next-generation antibody that targets the same CD20 marker as rituximab but grips the cancer cell more tightly.
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.
Rituximab Alone: A Gentle But Powerful Option
Not every patient needs chemotherapy. In fact, some do very well with rituximab alone.
A landmark study followed patients with advanced, asymptomatic, low–tumor burden follicular lymphoma for over 15 years. It found that early rituximab monotherapy (which means given as the only therapy) — whether given as a short 4-week induction or followed by two years of maintenance dosing — significantly delayed the need for any additional treatment.
At the 15-year mark, 65% of patients who received induction plus maintenance had not started a new therapy, compared to just 34% in a group that used the “watch and wait” approach. This confirms that for select patients, single-agent rituximab can offer long-lasting control with fewer side effects than chemotherapy.
Targeted Oral Therapies
When follicular lymphoma returns, many patients pivot to pills that hone in on cancer-specific weaknesses.
Options include:
- Tazemetostat (Tazverik): This inhibits EZH2, a gene abnormality found in roughly a fifth of follicular lymphoma cases. It is also an option when no usual therapy fits.
- BTK inhibitors: These shut down Bruton’s tyrosine kinase, a growth signal inside B-cells. The newest agent, zanubrutinib, earned FDA approval in March 2024 when paired with obinutuzumab for people who had tried at least two prior treatments.
- Lenalidomide: This immune-boosting pill combines well with rituximab in the so-called R-squared regimen and is often used when patients wish to avoid more chemotherapy.
Most of these tablets are taken daily or in short cycles at home. Dose adjustments and supportive medications tackle common nuisances such as fatigue, diarrhea, or mild skin rash.
Bispecific Antibodies Assist Your Immune System
Antibody drugs flag lymphoma cells for destruction; bispecific antibodies go a step further. One arm latches onto the lymphoma (usually CD20 or CD19), while the other arm grabs CD3 on T-cells, yanking them into direct contact.
“These drugs drag the quarterback of the immune system right next to the tumor,” Dr. Jain explains. “Once that happens, the T-cell can fire and tackle the cancer.”
First-in-Class Approval: Mosunetuzumab
In December 2022, the FDA approved a bispecific antibody called mosunetuzumab for adults whose follicular lymphoma had returned after at least two prior therapies. In its pivotal study, 80% of participants responded, and 60% saw all visible disease disappear.
When patients begin taking mosunetuzumab, “step-up dosing” is often used. The first dose is tiny, the second a bit larger, and the third the full amount. This schedule lowers the risk of fevers known as cytokine-release syndrome (CRS).
Early dosing, given as an infusion or subcutaneous injection, may require a short hospital stay or extended clinic monitoring, but later visits are quicker.
Side effects might include:
- Fever
- Chills
- Low blood pressure
- Mild confusion
- Fatigue
- Low antibody levels that increase infection risk
Most reactions occur in the first week and resolve quickly with medicines such as acetaminophen, IV fluids, or the immune-calming drug tocilizumab.
Several next-generation bispecifics — glofitamab, epcoritamab, odronextamab — are in late-stage trials, often in combination with lenalidomide or other antibodies.
The Promise Of CAR T-Cell Therapy
Some people prefer to “rip the Band-Aid off” with a single, intensive therapy that might buy many chemotherapy-free years. That is the promise of CAR T-cell therapy, a treatment approach where doctors collect your T-cells, engineer them to carry a new receptor that’ll lock onto cancer cells, and infuse them back into your bloodstream.
Although CAR T is already standard for aggressive B-cell lymphomas, trials in follicular lymphoma are showing equally impressive results. Many participants remain disease-free several years after a single infusion.
However, Dr. Jain cautions that logistics matter as patients must be closely monitored when they get this treatment.
“Patients usually live near our center for about a month, and families must plan for time off work and temporary housing. But for those who can manage the short-term complexity, the payoff can be tremendous,” he explains.
Potential side effects include:
- Cytokine-release syndrome (CRS): high fevers, low blood pressure
- ICANS: temporary word-finding trouble or confusion
- Low blood counts: fatigue or infection risk for a few weeks
Most events are mild to moderate and respond well to supportive care. Long-term issues are uncommon, and many people resume full-time work and normal activities within two or three months.
Living With Follicular Lymphoma
Most follicular lymphoma survivors share a common goal: normalcy. They want to keep working, spend time with family, travel, and otherwise fulfill their life goals. Patients should be reassured that the chronic nature of the disease rarely stops those dreams.
“Quality of life comes down to two things,” Dr. Jain reminds patients. “Is the lymphoma under control, and are we minimizing treatment side effects? When both boxes are checked, people live remarkably normal lives.”
Experts recommend keeping the following things in mind after a follicular lymphoma diagnosis:
- Work and finances: Many people remain employed, especially during watchful waiting or pill-based therapies. Patients can discuss flexible hours or intermittent leave with the human resources department at their job.
- Family planning: Some chemotherapies affect fertility. If you are hoping to conceive children in the future, ask about sperm, egg, or embryo preservation before treatment begins.
- Exercise and diet: Moderate physical activity improves energy, mood, and immune function. Aim for a balanced diet rich in lean proteins, fruits, and whole grains, but listen to your body on treatment days.
- Mental well-being: Mindfulness, yoga, or a simple evening walk can ground your thoughts. Sharing concerns with a social worker or psychologist often lifts a heavy emotional burden.
Questions To Ask Your Doctor
- Do I really need treatment right now?
- How often will you scan or test my blood?
- What are my options, and how do they fit my lifestyle?
- What side effects should prompt an urgent call?
- Am I eligible for a bispecific-antibody trial or CAR T-cell therapy?
- How will this plan affect my work, travel, or family goals?
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