BOB MEYERS AND HIS DAUGHTER LESLIE WATSON have always been close. In fact, they live right down the street from one another in their Georgia neighborhood. So, when Watson received the diagnosis of clear cell carcinoma in the summer of 1996 and then follicular lymphoma (FL) later that fall, Meyers was there by her side as her devoted caregiver. “We were totally swept up with emotion. At the time, the prognosis for follicular lymphoma was not like it is today,” says Meyers. “I was determined to learn as much as I could about the disease and be her advocate.”
Watson was only 30 years old and ready to start her life as a new bride before her first diagnosis. A diagnosis of two cancers was unexpected—especially follicular lymphoma—a cancer she had never heard of before. She and Meyers immediately went to work looking for oncologists to discuss treatment options. “The first oncologist we spoke with wanted to treat it very aggressively with FND (fludarabine, mitoxantrone, dexamethasone). This was before rituximab (Rituxan) was widely prescribed,” says Watson. “After just receiving a hysterectomy to treat my clear cell carcinoma, we wanted to speak with other oncologists to get an idea of other options. That’s when we learned of watch and wait.”
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After much research provided by her father and receiving two second opinions, Watson decided the best option for her follicular lymphoma was watch and wait, which meant she received CT and PET scans every six months. “We wanted to learn as much as we could about the disease to make the best-informed decision for Leslie,” says Meyers. “I started to look up doctors and researchers on the internet and just started cold-calling them. Many of them were happy to speak to me. In particular, researchers were rather flattered that I wanted to talk with them about their research!”
During his investigation, Meyers found out about the 1996 Lymphoma Research Foundation’s (LRF) inaugural North American Educational Forum on Lymphoma (Ed Forum) and asked his daughter to attend with him. “When we attended the Ed Forum, we were just blown away,” recalls Watson. “Here we are in a room with 600 or so people—lymphoma patients, survivors and their caregivers—full of hope, intellectual curiosity, and taking charge of their disease. It was a truly remarkable experience.”
For Watson, attending the Ed Forum was her first time connecting with other lymphoma patients and survivors and sharing her lymphoma journey with others outside her family. “I was a fiercely private person at the time. But here I am among survivors, attending amazing lectures, speaking informally with leading doctors and feeling so supported. Knowledge replaced fear of the unknown,” she says.
Since Watson’s initial diagnosis in 1996 and the decision to watch and wait, she has undergone treatments with Rituxan (rituximab) and pencil beam proton radiation. In 2019, she received the news that there was no measurable evidence of disease. This was the first time she had heard that in her 23 years with FL. Throughout this time, Meyers and Watson continued to attend the LRF Ed Forum to stay up to date on the latest treatments for follicular lymphoma and to network with others in the community. They’ve attended more than a dozen Ed Forums since that first one in 1996. “Every year, we learn something new, and we continue to meet people who are surviving and thriving for years with this disease. It’s been amazing, and it’s thanks to my dad and his research for finding LRF and their amazing resources.”
An Unexpected Turn of Events
After a routine annual physical in October 2019, Meyers received a call from his physician’s office that his blood work showed something was amiss and recommended he visit an oncologist. After additional tests, he received the diagnosis of chronic lymphocytic leukemia (CLL). “My experience with Leslie over the years prepared me not to be shocked when bad news comes,” says Meyers. “I just knew this is a new disease we had to learn. The LRF Ed Forum was two weeks after my diagnosis of CLL. Leslie and I went to the Ed Forum for me this time.”
Meyers’ and Watson’s roles were now reversed, with Watson being the caregiver and Meyers, the patient. Although they had attended many Ed Forums by the time of Meyers’ diagnosis, they didn’t know much about CLL. “We went to learn about a new disease. We started from ground zero, like many of the lymphoma patients we have met year after year,” says Meyers.
After attending the Ed Forum in 2019, speaking with other CLL survivors and doctors, and having conversations with Meyers’ oncologist, they decided to watch and wait. “We came home full of knowledge, ideas and hope,” says Meyers. “The LRF staff is competent, caring and totally committed. The give-and-take among patients and close interactions with outstanding doctors are so important. To add, the fact that the Ed Forums are held in genuinely nice locations with top-notch accommodations and service helps make each conference a special, uplifting and memorable experience.”
The Lymphoma Research Foundation’s mission is to eradicate lymphoma by funding innovative research and to serve those touched by this disease by sharing research and treatment insights directly with the lymphoma community through national education programs and resources.
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