MY FOLLICULAR LYMPHOMA
STORY

During a routine checkup, Bob’s doctor found some enlarged lymph nodes, which Bob had noticed before, but thought it could be a build-up of scar tissue from years of practicing martial arts.

Shortly, after this checkup, he was diagnosed with follicular lymphoma. Bob was stunned and also 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 manage the disease. In addition to conducting his own research, Bob got opinions from three different healthcare providers. All gave him significantly different treatment options, confirming that there is not one set standard of care.

One oncologist actually asked him, “What do you want to do?” and this surprised him. The doctor emphasized that it was important to be comfortable with the treatment he selected and to understand the pros and cons. Partnering with his wife, a former speech/language pathologist who enjoys researching and understanding the minutia of complicated matters, this collaborative approach resonated with Bob. In his experience, Bob found that oncologists treating follicular lymphoma evaluate the best treatment course based on a variety of factors such as, age, medical history, and quality of life objectives.

Ultimately, Bob decided to initially pursue a watch and wait approach. He felt comfortable with the decision to hold off on immediate treatment after his doctor explained that he was most likely living with follicular lymphoma for a few years before his diagnosis. Together, they made an upfront decision about when the right time to start treatment would be if Bob’s cancer progressed to a given point.

While watching and waiting, Bob and his wife continued to research treatment options and learned more about the immune system and the potential impact from follicular lymphoma treatments. Bob changed his lifestyle by radically improving his diet, getting more sleep, and continuing his rigorous exercise regimen in case there was a need to pursue treatment. After nine months, Bob began his first treatment course.

Looking back, Bob found it was empowering for him not to have to make a rash decision following his diagnosis, hearing a few different expert opinions, and having the confidence to ask a lot of questions. He shared, “I tried to focus on not letting my diagnosis and ultimately treatment negatively impact my life. Your mental attitude is half the battle in your survivorship journey, so I worked on staying positive and talked openly about my condition.”

Now in remission, Bob sees his oncologist periodically for normal medical tests to monitor for relapse. He was pleased to share follicular lymphoma didn’t stop him from achieving a long-term goal.

“I actually passed my 3rd degree black belt exam one month before I started treatment,” Bob noted. “My goal was to keep going and earn 4th degree, which I was able to achieve about one and a half years later, while living with follicular lymphoma. I was really motivated to get back to normal life and I encourage others living with follicular lymphoma to do the same, striving for a positive mindset throughout their own journeys.”

She had, however, started experiencing symptoms including bloating and swollen lymph nodes and her doctors initially couldn’t pinpoint what was causing them. Ultimately, following a CT scan, and eventually a biopsy, Kendra received the correct diagnosis of follicular lymphoma.

“I was relieved to get an answer and to know what was wrong… I held on to the outlook that this diagnosis just represented the next chapter of my life and that this is a challenge I can meet,” recalled Kendra. She researched more about the disease and joined an online support group on Facebook. Her parents were also a huge support system, in fact, her father was a lymphoma survivor who was treated successfully at 80-years old.

Kendra began exploring her options and ultimately, she and her doctor decided to begin treatment right away. This appealed to Kendra as her priority was going into remission as quickly as possible with the most potentially effective treatment to shrink her tumors quickly.

She shared, “I remember thinking, ‘this is my life I need to advocate for myself and feel comfortable with my doctor and treatment plan.’”

Kendra completed four rounds of treatment, which she responded to well. After that, her doctor recommended moving to a less aggressive treatment regimen for her final two rounds since it would be less toxic for her body. Following those six rounds, she did two years of maintenance therapy. Currently, she continues to monitor for relapse by getting blood work examined every six months and undergoing routine tests recommended by her doctor. If she notices a change in anything, Kendra will discuss it with her doctor right away, while trying to avoid jumping to negative conclusions.

Kendra’s advice to others living with follicular lymphoma is to choose a doctor who is open to having a dialogue about your treatment options. “Don’t be afraid to self-advocate and have an open dialogue with your doctor. It’s important to remember that doctors can disagree,” Kendra noted. “If something feels off, if you’re not feeling right with the doctor you have, get a second opinion!”

It was empowering for Kendra to ask her doctor a lot of questions and it allowed her to turn her relationship with her doctor into a true partnership. Kendra encourages others to do their best to take ownership over their follicular lymphoma journey.

After her diagnosis, Kendra found a renewed energy to follow her passions. At the end of the day, “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.

Upon his return home, Robert visited his primary care physician (PCP) who recommended that he see a dermatologist. The dermatologist believed that Robert “bump” was likely a cyst and recommended cosmetic surgery to remove it and referred Robert to a surgeon. Following the procedure, the pathology report revealed it was lymphoma. At the time, Robert had no symptoms of the cancer.

In recounting the call from the surgeon, Robert recalled, “I didn’t know anything about lymphoma. I couldn’t even spell lymphoma!” Shortly after, Robert met with an oncologist who confirmed a diagnosis of follicular lymphoma. Robert sat down with his wife and son to give them the news – he admits they were “kind of fearful.” “Back then [in 1998],” he notes, “a diagnosis of cancer wasn’t very promising,” but together, he and his family were determined to beat it. “I had to find out as much information as I could. I wanted an oncologist on the leading edge, one that specialized in follicular lymphoma.” Robert acknowledges that his dogged determination played a factor in each and every one of his decisions regarding his follicular lymphoma. “I wanted to be able to intelligently sit down with my family and oncologist to go through all of the options on the table — and I encourage others to do the same.”

After receiving the standard, first-line treatment for follicular lymphoma, Robert’s cancer went into remission for five years and he continued to see his oncologist every six months for regular check-ups. It was during one of these routine appointments that Robert learned his cancer had returned, but in a different location. Because of this, Robert worked closely with his oncologist to review all possible options and create a tailored treatment plan to fit his unique needs.

Robert stresses the importance of having routine visits with your doctor to ensure the best health outcomes, knowing that follicular lymphoma can relapse at any time. Without routine check-ups, Robert acknowledges he could have missed his relapse and progressed into a later stage of cancer. “Regardless of if you are newly diagnosed or have been living with follicular lymphoma for years, talk openly with your doctor about the latest follicular lymphoma research and treatment options available to suit you.”

As a Lymphoma Research Foundation (LRF) patient ambassador, Robert routinely speaks with others living with follicular lymphoma and has built strong relationships with those he’s met. “My biggest piece of advice for others is to find an oncologist that specializes in their particular disease and in regard to lymphoma, patients should actively inquire about the latest and greatest clinical trials,” said Robert. Despite the challenges of follicular lymphoma, Robert continues to live a full and rewarding life, and encourages others to do the same, and keep a positive mindset.

“It’s important not to be timid about the continuation of your life. If you played pickle ball before your diagnosis, then continue to play pickle ball. If you take cruises every year, continue to go on cruises,” Robert acknowledges that people living with cancer “tend to look over our shoulders” when it comes to living with an incurable disease because of the fear that it may relapse or spread, but he encourages a forward-looking mindset. “There is promise out there for all these forms of lymphoma. Not overnight, but with the research and technology that’s available today, we’re going to move forward exponentially.”

Today, Robert lives in Florida, with no signs of relapse, and still has routine, six-month visits with his oncologist. His insights on living with follicular lymphoma can encourage those with this blood disorder to, in his words, “continue moving forward with your life.”