Follicular Lymphoma (FL) is a type of non-Hodgkin lymphoma (blood cancer) that affects the cells of the immune system.1
B cells, T cells and glands called lymph nodes make up the body’s immune system which protects the body from diseases.2 Sometimes, the cells inside a lymph node can grow abnormally and become cancerous.
Patients with Follicular Lymphoma have abnormal (cancerous) B cells that develop in clumps called ‘follicles’ inside the lymph nodes and potentially, other parts of the body.1 Follicular Lymphoma is a slow-growing B-cell lymphoma, and patients can live for many years with this form of lymphoma cancer.
To determine if a person has Follicular Lymphoma (FL), your care team will ask about your treatment history, followed by a thorough physical exam to look for possible symptoms of the disease, such as swollen lymph nodes at various parts of the body.
Often, a biopsy is done where a swollen lymph node is removed for testing. The sample is then tested in the lab by a pathologist to help identify the type of lymphoma and how mature it is. Imaging studies, such as X-ray scans,PET- CT scans, MRI, or ultrasound, may also be done for a better understanding of the extent of the disease.
Enlarged lymph nodes, or lumps, are often the first symptoms of Follicular Lymphoma (FL) cancer symptoms. Other common symptoms to look out for include:
Risk factors refer to anything that increases one’s risk of getting cancer, but they do not determine the diagnosis as Follicular Lymphoma (FL) patients may have few or no known risk factors. According to statistics, the risk for developing FL increases with age9, and in men more than women10. FL is extremely rare in children.9
Factors within your control
Factors outside of your control
Some Follicular Lymphoma (FL) patients will not have success with traditional chemotherapy treatments. This means that their cancer became resistant and was non-responsive to standard treatments (refractory Follicular Lymphoma).
~20% of patients who have recovered or saw a decrease in cancer symptoms later report that their lymphoma has come back.11 This means that their cancer has returned (relapsed Follicular Lymphoma).
Prior to CAR-T cell therapy, patients with refractory or relapsed FL had limited treatment options and substantially reduced survival. Studies have shown that ~60% of patients initially diagnosed with FL will either have a refractory disease or have a disease recurrent within 5 years of initial therapy.13
In the past, the treatment options for patients with R/R FL included radiation and chemotherapy. Since then, scientific advances and medical research have opened doors for new treatments, such as CAR-T cell therapy.
In cancer care, treatment options depend on several factors12, including the type and stage (extent) of the patient’s Follicular Lymphoma (FL). It is best to consult with your care team on what the recommended treatment journey is for you.
CAR-T cell therapy, or Chimeric Antigen Receptor T cell therapy, is a type of immunotherapy that enhances the body’s natural ability to treat cancer by using modified T cells.
CAR-T cell therapy involves altering the body’s T-cells, a type of white blood cell found in the immune system, with new receptors. This receptor is called a Chimeric Antigen Receptor, or CAR, and helps to target and stop the spread of cancer cells in the blood.
In order to collect the T-cells, the patient’s blood is drawn through a process called Leukapheresis. This process takes 3 to 6 hours to extract the T-cells from the body.
Patient’s collected T cells are modified into CAR-T cells at a specialized manufacturing facility. The CAR-T cells are then transported back to the hospital, which usually takes 3 to 4 weeks, but timing and manufacturing outcomes can vary.
Before infusion, the physician decides if a short course of chemotherapy is needed to prepare the body. Once ready, the patient will receive CAR-T cells through a single infusion that takes less than 30 minutes. At this stage, the increase in CAR-T cells may enhance the patient’s ability to withstand against cancer cells.
In the short term, regular monitoring to manage side effects is essential. Whether the infusion was received in an inpatient or outpatient setting, it will be necessary to stay close to the treatment center for at least 4 weeks.
In the long term, the treatment team will establish a monitoring plan for ongoing follow-ups. The Food and Drug Administration (FDA) recommends that all patients be followed for 15 years after infusion. The treatment team will offer the patient participation in a long-term registry conducted by the Center for International Blood and Marrow Transplant Research (CIBMTR) for this follow-up. This information is used to help future patients and contributes to understanding the effects of CAR-T cell therapy in the real world outside of clinical trials.
CAR-T cell therapy stands out from other cancer therapies because it is an individualized therapy made from the patient’s own cells.
Each patient’s CAR-T treatment is created from the T cells in their own immune system. CAR-T cells remain active in the body and act as a “living drug” to stop the growth of any new cells that may become cancerous.20 Long-term data suggests that some patients recovered within months of treatment, meaning all lymphoma cancer symptoms and signs and have disappeared.
Unlike other treatments, CAR-T is designed to be a one-time treatment, with or without hospitalization (and may be done in an in-patient or out-patient setting). In most cases, a short course of chemotherapy is needed to prepare your body for infusion.1
CAR-T therapy does not require a donor as it uses one’s own cells for treatment.1 Thus, it is helpful for patients who may be ineligible for stem cell transplant due to other co-morbidities, while not bearing the risks associated with a transplant. It is considered a widely studied and safe option.
CAR-T cell therapy might be the next step if initial treatments have not been working or the cancer has returned. It’s important to seek a second opinion to determine if CAR-T cell therapy is right for your child or if the hospital they are treated at does not offer advanced treatments such as CAR-T.
T cell health declines over time and is also affected by additional lines of treatment, such as chemotherapy, which then lowers your child’s overall response rates to CAR-T therapy.
Due to the aggressive nature of the disease, T cells collected in earlier stages can lead to better outcomes and a higher chance for complete recovery.21 T cells can be cryopreserved for up to 2 years.
CAR-T therapy may be associated with certain risks such as cytokine release syndrome (CRS) and neurological toxicities, which may be severe or life-threatening. Please refer to the Prescribing Information for more details.Download the discussion guide here to support the various conversations with your care team
Lymphoma Action. Follicular lymphoma. Lymphoma Action. (2022). Retrieved October 11, 2022, from https://lymphoma-action.org.uk/types-lymphoma-non-hodgkin-lymphoma/follicular-lymphoma
Treating B-cell non-Hodgkin lymphoma. (n.d.). Cancer.Org. Retrieved October 11, 2022, from https://www.cancer.org/cancer/non-hodgkin-lymphoma/treating/b-cell-lymphoma.html
GLOBOCAN 2020: New global cancer data. (n.d.). Uicc.Org. Retrieved March 11, 2022, from https://www.uicc.org/news/globocan-2020-new-global-cancer-data
Kaseb, H., Ali, M., & Koshy, N. (2022). Follicular Lymphoma. Ncbi.nlm.nih.gov. Retrieved October 11, 2022, from https://www.ncbi.nlm.nih.gov/books/NBK538206/.
Carbone A, Roulland S, Gloghini A, et al. Follicular lymphoma. Nat Rev Dis Primers. 2019;5(83):1-20.
Sortais C, Lok A, Tessoulin B, et al. Progression of disease within 2 years (POD24) is a clinically relevant endpoint to identify high-risk follicular lymphoma patients in real life. Ann Hematol. 2020;99(7):1595-1604.
Tests for non-Hodgkin lymphoma. (n.d.). Cancer.Org. Retrieved March 11, 2022, from https://www.cancer.org/cancer/non-hodgkin-lymphoma/detection-diagnosis-staging/how-diagnosed.html
Signs and symptoms of non-Hodgkin lymphoma. (n.d.). Cancer.Org. Retrieved March 11, 2022, from https://www.cancer.org/cancer/non-hodgkin-lymphoma/detection-diagnosis-staging/signs-symptoms.html
Ma S. Risk factors of follicular lymphoma. Expert Opinion on Medical Diagnostics. 2012;6(4):323-333.
Carbone A, Roulland S, Gloghini A, et al. Follicular lymphoma. Nat Rev Dis Primers. 2019;5(83):1-20
Novartis. (2022). Kymriah FL Disease State Training 2022– extracted from Novartis resource
Treating B-cell non-Hodgkin lymphoma. (n.d.). Cancer.Org. Retrieved March 11, 2022, from https://www.cancer.org/cancer/non-hodgkin-lymphoma/treating/b-cell-lymphoma.html
Ahle, S. (2022). How I Treat in Brief: Early Relapsing Follicular Lymphoma – ASH Clinical News. ASH Clinical News. Retrieved October 11, 2022, from https://www.ashclinicalnews.org/education/how-i-treat-in-brief/treat-brief-early-relapsing-follicular-lymphoma/
Radiation therapy for Hodgkin Lymphoma. (n.d.). Cancer.Org. Retrieved March 11, 2022, from https://www.cancer.org/cancer/non-hodgkin-lymphoma/treating/radiation-therapy.html
Targeted therapy drugs for non-Hodgkin lymphoma. (n.d.). Cancer.Org. Retrieved October 11, 2022, from https://www.cancer.org/cancer/non-hodgkin-lymphoma/treating/targeted-therapy.html
Aliqopa. (n.d.) RxList. Retrieved October 11, 2022, from https://www.rxlist.com/aliqopa-side-effects-drug-center.htm
High-Dose Chemotherapy and Stem Cell Transplant for Non-Hodgkin Lymphoma. Cancer.org. (2022). Retrieved 11 October 2022, from https://www.cancer.org/cancer/non-hodgkin-lymphoma/treating/bone-marrow-stem-cell.html
Understanding immunotherapy. (2013, March 25). Cancer.Net. https://www.cancer.net/navigating-cancer-care/how-cancertreated/immunotherapy-and-vaccines/understanding-immunotherapy
Frankly Speaking About Cancer, Cancer Support Community, Gilda’s Club. (2021). CAR T Patient & Caregiver Guide. The Cancer Support Community. Retrieved March 11, 2022, from https://www.cancersupportcommunity.org/sites/default/files/fsac/CAR_T_Patient_and_Caregiver_Guide.pdf
Novartis. (n.d.-a). I AM KYMRIAH: A Guide for Patients and Caregivers (Diffuse Large B-Cell Lymphoma).136665. – extracted from Novartis resource
Geddes, L. (2022, February 2). First patients of pioneering CAR T-cell therapy ‘cured of cancer’. The Guardian. https://www.theguardian.com/society/2022/feb/02/first-patients-pioneering-car-t-cell-therapy-cured-of-cancer
Künkele,A,.Brown, C., Beebe, A., Mgebroff, S., Johnson, A, J., Taraseviciute, C.mA., Rolcyzynski, L.S., Chang, C.A.,Finney, O.C., Park, J. R., & Jensen, M.C. (2019). Manufacture of Chimeric Antigen Receptor T Cells from Mobilized Cryopreserved Peripheral Blood Stem Cell Units Depends on Monocyte Depletion. Biology of Blood and Marrow Transplantation, 25(2), 223-232. https://doi.org/10.1016/j.bbmt.2018.10.004