How Three People Living with Follicular Lymphoma Found Empowerment in Their Cancer Journey
(BPT) - Dealing with the complexities of a typically incurable blood cancer like follicular lymphoma can be challenging – but empowered communications between patients and their healthcare providers can help.
In My Blood is a new online resource created with input from a group of patient advocates and advisors, that aims to empower people living with follicular lymphoma to partner with their healthcare providers and play a proactive role in treatment decision-making, based on where they are in their follicular lymphoma journey.
In My Blood features several resources for patients and care partners, including My Follicular Lymphoma Coach, a first-of-its-kind questionnaire for follicular lymphoma patients to help better understand their personal experience through a series of questions, which produces a customized, downloadable guide featuring information on living with follicular lymphoma, treatment options and relevant questions to ask their healthcare providers. While there has been significant innovation in follicular lymphoma treatment over the past several years, the treatment landscape can be complex and overwhelming.
Other online resources include a downloadable daily and weekly symptom tracker, a glossary of common terms associated with follicular lymphoma, and videos highlighting real patient stories.
One of these personal stories is from Kendra, an actor and singer who ran and practiced yoga regularly. In 2017, she started to experience some bloating, swollen lymph nodes and headaches – but a consultation with her doctor and an ultrasound didn’t reveal anything. Then a lump appeared on Kendra’s chest and her instincts told her to call her doctor again, who recommended she come in for a few scans.
Kendra’s scans "lit up like a Christmas tree.” Although she appeared to be in overall good health, she was diagnosed with follicular lymphoma, a type of blood cancer, at age 44. She began exploring her treatment options right away with her doctor.
What is follicular lymphoma?
Follicular lymphoma is a slow growing, typically incurable form of non-Hodgkin’s lymphoma, accounting for about 20% of diagnoses in the United States each year, or about 14,800 people.1 It’s a cancer of the lymphatic system, which is a system of lymph nodes found throughout the body, including the neck, underarms, chest, abdomen, and groin/pelvis.2
Many people are asymptomatic at diagnosis,3 but some common symptoms include painless, swollen lymph nodes in the neck, armpit or groin, persistent fatigue, abdominal or chest pain, fever, night sweats, or unexplained weight loss.4 Today, there are several treatment options available for patients with follicular lymphoma, depending on the stage of their disease, treatment history, and other lifestyle needs.
While follicular lymphoma is typically incurable, some people can live with this type of cancer for many years – experiencing cycles of remission, living cancer-free, or with minimal signs of disease before the cancer returns, called a relapse. In addition, many patients may find their cancer has become resistant to treatments they’ve received before, leaving them with fewer options when seeking out the next course of treatment.
Remaining vigilant and informed while maintaining clear and proactive communication with healthcare providers is essential in order to detect signs of a potential relapse in follicular lymphoma. In My Blood offers downloadable daily and weekly symptom trackers to support patients and care partners with disease monitoring.
While having treatment conversations with her doctor, Kendra remembers thinking, “This is my life, I need to advocate for myself and feel comfortable with my doctor and my care plan. Don’t be afraid to self-advocate and have an open dialogue with your doctor.”
Living with follicular lymphoma
Like Kendra, Kim and Bob both felt similarly empowered in their journeys with follicular lymphoma.
When Kim, a semi-professional basketball player, was diagnosed with follicular lymphoma at 28 years old, the news came as a huge surprise. After finding a lump in her upper thigh in 2020, she decided to get the swollen lymph node checked out by a doctor. During the visit, her doctor found other enlarged lymph nodes throughout her body and recommended a biopsy.
As Kim sought treatment for her follicular lymphoma, she felt isolated trying to manage her diagnosis on her own. During an appointment with a specialist, Kim learned about the Leukemia and Lymphoma Society (LLS) and the Lymphoma Research Foundation (LRF), two resources that helped her learn more about follicular lymphoma and connect with others who were also navigating life with a typically incurable blood cancer.
For Bob, the start of his follicular lymphoma journey came just one month shy of his 51st birthday. As a karate enthusiast – he was living an active lifestyle and never imagined the enlarged lymph nodes his doctor found during a routine checkup would lead to a cancer diagnosis. Bob had noticed them before but thought it could be a build-up of scar tissue from years of practicing martial arts.
Bob was stunned and worried how he would tell his family. However, he was quickly motivated to begin researching and connecting with healthcare providers to determine a plan of action to treat his follicular lymphoma. In addition to conducting his own research, Bob got opinions from three different healthcare providers. All gave him different treatment options, revealing that there is not one set standard of care.
After her diagnosis with follicular lymphoma, Kendra found a renewed energy to follow her passions. “We have no guarantees in life, so I’d encourage those newly diagnosed to re-evaluate your life and look at this as an opportunity to prioritize what you love most,” Kendra said. Today, Kendra continues to pursue acting and singing while regularly monitoring her health by getting blood work examined every six months and undergoing routine tests recommended by her doctor.
Bob sees his oncologist routinely to monitor for relapse and continues to practice karate at home in between spending time with his granddaughter. He shared, “I try to focus on not letting my diagnosis and ultimately treatment impact my life. Your mental attitude is half the battle in your survivorship journey, so I worked on staying positive and talk openly about my condition,” he said.
Kim receives scans every six months and, in between appointments, makes sure to check in with her oncologist about anything that might seem abnormal. “I would encourage someone dealing with follicular lymphoma to not to be so hard on themselves. Do what you need to do for yourself,” said Kim. She hopes that sharing her story will inspire others and provide a sense of encouragement.
In My Blood and the My Follicular Lymphoma Coach were created with input from a group of patient advocates and advisors, including Kendra, Kim, and Bob, to empower patients and their care partners to navigate life with follicular lymphoma. To learn more about follicular lymphoma, please visit follicularlymphoma.com.
Sponsored by Epizyme, Inc.
- About Non-Hodgkin Lymphoma. American Cancer Society. Accessed November 11, 2021. Available at: https://www.cancer.org/cancer/non-hodgkin-lymphoma/about.html.
- Lymphoma Non-Hodgkin: Introduction. Cancer.Net. Accessed November 11, 2021. Available at: https://www.cancer.net/cancer-types/lymphoma-non-hodgkin/introduction.
- Understanding Follicular Lymphoma: Relapsed/Refractory. Lymphoma Research Foundation. Accessed November 11, 2021. https://lymphoma.org/wp-content/uploads/2020/09/LRF_Fact-sheet_Follicular-Lymphoma-Relapsed_Refractory_090920.pdf.
- Lymphoma. Mayo Clinic. Accessed November 11, 2021. https://www.mayoclinic.org/diseases-conditions/lymphoma/symptoms-causes/syc-20352638.