You’ve probably heard of lymphoma, the most common type of blood cancer, and you’ve probably heard of non-Hodgkin lymphoma – but have you heard of follicular lymphoma (FL)? It is a slowly growing, typically incurable blood cancer and the most common form of sluggish non-Hodgkin lymphoma, accounting for about 20% of all cases in the United States. FL can be diagnosed at any age, but is more common in people in their mid-50s and 60s.
FL affects the lymphatic system, a system of lymph nodes that are found throughout the body. Common symptoms of FL include swollen lymph nodes (hard, painless lumps) under the arms, in the neck, and / or in the abdomen or groin, and tiredness, weight loss, and shortness of breath. Other common symptoms may also include a fever, chills, or enlargement and persistent lumps. In some cases, patients may not have obvious symptoms at diagnosis.
Subtle symptoms are common in many FL patients, including Juliana, who was diagnosed at the age of 26 in 2011 when she was studying to become a nurse. Her nursing class learned to examine lymph nodes, and her classmate noticed that she had a large lymph node on her neck. Juliana visited a Lymphoma specialist in Los Angeles near her home in Southern California, who confirmed her diagnosis and helped Juliana devise a treatment plan.
“I remember it so well because I felt good physically but was scared emotionally,” explained Juliana. “When my oncologist told me I had follicular lymphoma and that there was no cure, I felt like I couldn’t take in any other information. I wondered how this could happen and what it would mean for my life.”
Lack of healing means no hope
Juliana and her family
While there is usually no cure for FL, the good news is that people with FL may live for many years. Working with a doctor to determine the best approach to treatment, including disease management and monitoring, can help many people lead relatively normal lives.
FL is characterized by cycles of remission and relapse, which means that people can experience long periods of remission that can last years after their initial treatment before their disease returns (relapses). Follicular lymphoma can also become resistant to previous treatments as it relapses or progresses (this is known as refractory FL), as the cancer can be more aggressive and / or difficult to treat.
Given the mostly subtle symptoms of FL, relapse can be difficult to detect without a routine check-in with a doctor. In order to achieve the best possible health outcomes, it is important that people with FL check-in regularly with their doctor and not forego care, even during the COVID-19 pandemic. Telemedicine appointments can be an option, but should not completely replace in-person appointments.
“I’ve had a good experience with telemedicine since the pandemic started, but if there is anything you are concerned about, don’t hesitate to see your doctor face-to-face. If you are worried about the coronavirus, do so. ” Call your doctor, nurse, or clinic and ask what safety precautions they have in place and what to expect when you get there. This can give you more confidence when you go on a personal visit, “said Juliana. She also encourages others with FL to” continue to have your treatments, as these treatments will ultimately help us get into better shape and get infections and other diseases fend off. ”
People with FL should work closely with their health care providers to develop long-term treatment plans that take into account the severity of the disease as well as their individual treatment goals and lifestyle needs. The good news is that numerous treatments for FL are available today and new research is taking place. New treatment options also include oral medications that can be taken from home and can help with the COVID-19 pandemic. Other new forms of treatment are immunotherapies, which help your own immune system fight the lymphoma.
After her initial diagnosis, Juliana felt reassured after attending an educational forum run by the Lymphoma Research Foundation to learn about the variety of treatments available.
“It gave me hope and an attitude that the current data at the time did not define me or my prognosis. It gave me the idea that as new research continued and new treatments became available in the EU, my options would continue to get better, and so would the future that encouraged me to have a family and get on with my life, “said Juliana.
After monoclonal antibody treatments, Juliana went into remission in 2013. She continued to visit her oncologist regularly. Juliana did not let her cancer define her and began her career as a nurse. She and her husband started a family. Four years ago, just a few months after the birth of her daughter, Juliana fell behind.
“At the time of my relapse, we had just moved and had a baby. I was wondering how my cancer could be back and how it happened again.”
While relapse is never the news anyone wants to hear, the good news is that Juliana underwent additional treatment that successfully put her back into remission. “I’ve been in remission since 2016 and currently in good health. I still see my oncologist for check-ups several times a year and do labs regularly.” In fact, Juliana and her husband welcomed their second child, a healthy boy, last June. She continues to advocate and connect with other people affected by FL through the Lymphoma Research Foundation.
“The fear and feeling of being alone after a cancer diagnosis or relapse is very real, especially if you are looking for information. The Lymphoma Research Foundation made it clear to me that I was not alone on my journey and have excellent resources for people I live with Lymphoma, especially during the pandemic. ”
Read more about questions to ask your doctor about FL here.
Leukemia & Lymphoma Society
Lymphoma Research Foundation
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This resource was created with the assistance of Epizyme.