Woman’s Eyelid Swelling and ‘Scratchy’ Eyes Dismissed As Allergies. It Turned Out To Be a Warning Sign of Follicular Lymphoma

It’s important to note that eyelid swelling as the first sign of lymphoma is extremely uncommon, with only a few reported cases, a research letter published in JAMA Ophthalmology explains. Pushing for answers when it comes to your health is vital, but understand that the symptoms King experienced are very rarely the initial symptom of lymphoma. However, ocular lymphoma is more likely to cause swelling around the eyes, according to the American Academy of Ophthalmology.

King, who was diagnosed in her early 50s, explained to UT MD Anderson, “They [eyelids] almost looked like I had pink eye, but the swelling would come and go from one day to the next. People started telling me I looked tired and asking me if I was OK.

“I felt fine overall, but my eyes were really scratchy. It was like when you’re watching a movie late at night, and you’re exhausted and just want to go to bed, but you’re determined to catch the end of it. One eye was also a little smaller than the other.”

She then noted how her doctors first believed her symptoms were caused by allergies. However, after a few months of eye drops and continuous allergy testing, there was no improvement in her condition.

RELATED: Facing Follicular Lymphoma: A Guide To Understanding, Treating & Living Well With A Slow-Growing Blood Cancer

By August of that year her doctor referred her to a neurologist, and a month later, an MRI scan showed multiple tumors—one behind each eye and two others in her throat and below her jaw.

A biopsy ultimately confirmed she had follicular lymphoma, prompting her to be referred to MD Anderson Cancer Center.

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King, who has since been declared “cancer-free” was diagnosed with a form of lymphoma that was “not considered that advanced,” allowing a year of targeted therapy leading to remission.

However, when her cancer returned 12 months later under her tongue, she underwent surgery and aggressive chemo before having no evidence of disease.

“My treatment wasn’t painful, and it didn’t mess up my vision. But it did make me so draggy that I sometimes felt like someone had poured lead into my veins. The chemotherapy also made my hair fall out, which was really depressing,” King recounted, adding that her hair has since regrown and is “almost completely back to normal.”

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As for why she’s decided to be involved in UT MD Anderson’s Book Walk to End Cancer, she said it stemmed from having “survivor’s guilt” after one of her relatives passed away from cancer in her early 30s.

King continued, “I’m not very good at fundraising. And, I didn’t feel much like walking, either. But I wanted to do something. … Our contributions may not be very much. But I believe we go through life so we can be there for somebody else.

“This is my way of saying I remember those who didn’t survive, and that I understand what those who are still in treatment are going through.”

Bispecific Antibodies Show Promise For Follicular Lymphoma

What Is Follicular Lymphoma?

Follicular lymphoma can feel like a baffling diagnosis. It is technically a cancer, but one that often moves at a crawl. Many people live for decades with few or no symptoms, and modern medicine keeps adding new tools that make those decades even smoother.

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.

This disease 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.

Sneaky Lymphoma Symptoms Often Lead to a Late Diagnosis

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.

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.

Treating Follicular Lymphoma

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.”

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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.

Treatment Options for Follicular Lymphoma

If you are diagnosed with follicular lymphoma, you should discuss treatment options with your doctor. The type of treatment depends on various conditions including your age and overall health to how advanced the cancer has become.

Treatment options include:

• Active surveillance, which includes regular exams and tests
• Monoclonal antibody therapy, which uses lab-created antibodies to kill cancer cells.
• Targeted therapy, targets drug treatments for abnormalities present within cancer cells.
• Immunotherapy, which uses your immune system to fight cancer.
• Radiation therapy, which uses high-power energy beams to kill cancer cells.
• Chemotherapy uses drugs designed to kill cancer cells
• Bone marrow or stem cell transplant,

“A bone marrow transplant is a therapy where your bone marrow and your blood cells are completely replaced by someone else’s bone marrow cells and blood cells,” says Dr. Jun Choi, a hematologist-oncologist at NYU Langone’s Perlmutter Cancer Center.

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?

Be Your Own Advocate

Remember, a component of advocating for yourself in healthcare includes going back to the doctor multiple times and even getting multiple opinions.

Dr. Steven Rosenberg is the National Cancer Institute Chief of Surgery, and he previously told SurvivorNet about the advantages of getting input from multiple doctors.

WATCH: The value of multiple opinions.

“If I had any advice for you following a cancer diagnosis, it would be, first, to seek out multiple opinions as to the best care. Because finding a doctor who is up to the latest of information is important,” Dr. Rosenberg said.

Contributing: SurvivorNet Staff

Learn more about SurvivorNet's rigorous medical review process.

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