By Steve Blanchard - January 25, 2019
Joni Manfre is a researcher. Not professionally, but personally, especially when it comes to her own health.
The retired educator, who lives in Hudson, has learned a lot about Neurofibromatosis type 2, or NF2, since she was diagnosed in 2014.
“I do very well on the internet,” Manfre said during a recent visit to Moffitt Cancer Center. “I love it. You do the research, you check into it and you find what works for you.”
NF2 is a genetic condition that leads to the development of tumors on hearing nerves.
“Very often, tumors start to grow on both hearing nerves silently in childhood until hearing loss,” said Dr. Xia Wang, a clinical medical geneticist at Moffitt. “Patients may hear ringing in the ear or suffer a loss of balance. Sometimes the tumor is big enough to press on the brain stem and can be life-threatening.”
Manfre doesn’t rely solely on the web for her information. Last year, she attended the first-ever “Bridging the Gap in Neurofibromatosis” conference at Moffitt Cancer Center and plans to be in attendance for the second conference, on Feb. 9 at Moffitt’s Vincent A. Stabile Research Building.
“Last year I learned so much about pain management and the options that are available,” she said. “I would have never learned about those if I hadn’t attended. It also helps to meet people who are on similar journeys as yours.”
While Manfre was diagnosed with NF2 in 2014, it wasn’t her first experience with a tumor on her hearing nerves. In 1983, she began losing her balance and sought medical help from a local ER.
“They didn’t find anything and kept telling me I had an ear infection,” Manfre said. “Luckily I finally found a doctor who found the tumor on the right side and we were able to treat it way back then. I was told that I would never have to worry about it again and that I could go and enjoy my life. I was 27.”
She married and started a family. Then the tumor returned and her doctor discovered a new tumor on her left side. She lost hearing on her right side, but treatment at Moffitt and Tampa General Hospital saved the hearing in her left ear.
Weighing her options, she opted for treatment with Avastin® (bevacizumab) over surgery.
Avastin is a medication that triggers the body’s immune system to attack tumors. In NF2, this medication helps stop the tumor from developing new blood vessels and improves hearing.
“Avastin has a significant effect on shrinking the tumor and improves hearing or halts hearing loss,” said Dr. Sepideh Mokhtari, who specializes in Neuro-Oncology at Moffitt. “Smaller dosages can limit the side effects of treatment and many NF2 patients can stay on the treatment for years.”
“There is a lot more information out there than you know,” she said. At the conference, medical experts, patients and caregivers can openly discuss the conditions and talk about treatments, ranging from standard medical care to new discoveries on the horizon.
The conference, featuring medical experts and patients, runs from 10 a.m. to 3 p.m. It is free to attend but reservations are required at NFCOnference@Moffitt.org or by calling 813-745-4251.
“Getting a diagnosis of any kind is scary as hell,” Manfre said. “The important thing to do is not to panic and to find the information that you need. This conference is the perfect place for that.”