Sponsored by an educational grant from Epizyme, Inc.
During Blood Cancer Awareness Month this September, Men’s Health Network (MHN) is highlighting follicular lymphoma (FL), a slow-growing blood cancer which accounts for approximately 20 percent of all non-Hodgkin lymphoma (NHL) cases in the United States.[i]
We spoke with Bob Mesloh, who was diagnosed with FL more than 20 years ago at the age of 50. Since his diagnosis, Bob has undergone two rounds of treatment, the second, after his cancer returned (relapsed). Today, he is living in remission, while continuing to have regular check-ups with his oncologist. Throughout his journey with FL, Bob has sought to share insights with others about FL by speaking candidly about his unique experience.
Bob’s diagnosis wasn’t the most typical. He was in Asia on an international business trip when he noticed a “small bump” on his right temple while shaving in his hotel room. Upon his return home, Bob visited his primary care physician (PCP) who recommended that he see a dermatologist. The dermatologist believed that Bob’s “bump” was likely a cyst and recommended cosmetic surgery to remove it. He referred Bob to a skilled surgeon for this. Following the procedure, the pathology report revealed it was lymphoma. In recounting the call from the surgeon, Bob stated, “I didn’t know anything about lymphoma. I couldn’t even spell lymphoma!”
Shortly after, Bob met with an oncologist who confirmed a diagnosis of FL. Bob 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.”
Bob acknowledges that his dogged determination played a factor in each and every one of his decisions regarding his FL. “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 this first round of treatment, Bob’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 Bob found out his cancer had returned in a different location. Many patients with follicular lymphoma often experience periods of remission before their disease returns (relapses), and they may also become resistant to previous treatments they have received (refractory) as their disease progresses. Because of this, Bob worked closely with his oncologist to review all possible options and create a tailored treatment plan to fit his unique needs.
Today, Bob stresses the importance of patients having routine visits with their doctor to ensure the best health outcomes, knowing that FL can relapse at any time. Without routine check-ups, Bob 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 FL for years, talk openly with your doctor about the latest FL research and treatment options available to suit your needs.”
Bob also notes the importance of regular check-ups and how having open lines of communication with your doctor doesn’t change just because of the current COVID-19 pandemic. “Take advantage of telemedicine, and don’t be afraid to be proactive by calling your doctor with any questions about your care,” said Bob. “Telemedicine or phone calls shouldn’t fully replace in-person visits, but continuing to partner with your medical team on your situation and unique needs is vital.”
Knowledge truly is power when it comes to navigating any health challenge, including FL. Healthcare professionals and advocacy organizations, such as the Lymphoma Research Foundation (LRF), can be tremendous resources.
As an LRF ambassador, Bob routinely speaks with other FL patients and has built strong relationships with those he’s met through the program. “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 Bob. He credits the LRF with providing him the latest in FL information, and urges patients to visit lymphoma.org. He also encourages patients to download the app, which he mentioned is a great source of additional information about the disease.
Despite the challenges of FL, Bob lives a full and rewarding life, and encourages fellow FL patients to do the same. “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… outside of COVID of course!” Bob acknowledges that cancer patients “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 (metastasize), but he encourages patients to also look ahead. “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.”
Men’s Health Network believes that personal stories, such as Bob’s, can offer encouragement to those impacted by FL or other blood cancers. Follicular lymphoma is a disease that can relapse or progress, but the good news is that oral treatment options are available, which can be taken from the convenience of your own home. Ask your doctor about new options and whether they should be part of your treatment plan. Today, Bob lives in Florida cancer-free, and still has routine, six-month visits with his oncologist. His insights on living with FL can encourage those with this blood disorder to, in his words, “continue moving forward with your life.”
To learn more about FL please click here
[i] Lymphoma- Non-Hodgkin: Introduction. Cancer.Net. Accessed July 31, 2020. Available at https://www.cancer.net/cancer-types/lymphoma-non-hodgkin/introduction
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