CURE gets an update from Bobby Harsh, Annette Mattern and Eileen Gould.
A few months after the Summer 2011 article “Melanoma: Ready for Takeoff,” Bobby Harsh is still in the clinical trial for Yervoy (ipilumumab), which was approved by the Food and Drug Administration in March. He is absolutely happy to be there.
“My life has been normal,” says Harsh, who was diagnosed with stage 2C melanoma in late 2007. “I guess normal is a good thing.” Now in the maintenance phase of the medication, Harsh travels to Charlotte, N.C. from his home in Maryland once every three months to have CT scans, which he calls his security scans. They show that Harsh’s cancer is not progressing.
Harsh was asked by Bristol-Myers Squibb, the company that manufacturers Yervoy, to speak about his success with the drug at the Skin Cancer Foundation's Skin Sense Award Gala this past October. He was also featured in a USA Today article in June that corresponded with the release of the clinical trial’s positive data at a large cancer research meeting. In response to his recent fame in the skin cancer world, Harsh says people have contacted him for advice about treatment and life with the disease.
“I think because my story has such as positive outcome, it gives people a lot of encouragement,” he says. Harsh, 44, says he is planning for the future. In March he will be eligible for retirement from the state police after serving 22 years as a flight paramedic. He’s currently looking forward to a family road trip in 2013 with his wife and three children to the northeastern states and up into Canada in the family camper. The trip will allow Harsh to check off a few more states on the U.S. map on the side of his camper.
Ovarian cancer patient Annette Mattern, featured in the Spring 2011 article, “Breaking Out of the Silence,” continues to stay busy, despite a recent set back. She had surgery in early November to remove six tumors.
“It's what women with this kind of disease deal with all the time,” Mattern says. “I'm living my purpose now, and I'm not finished. This is just something I need to take care of.”
Mattern has no time to slow down as she is the president of the Ovarian Cancer National Alliance. In July, she and 400 other advocates held a public forum in Washington D.C. where trained advocates attended a congressional hearing to speak with lawmakers about cancer research funding from the congressional budget.
“Fighting the federal budget wars in Washington is really scary. Scarier than cancer,” laughs Mattern.
Keeping up with the digital age, the alliance has created an app called The Ovarian Cancer Symptom Diary that allows women to track symptoms indicative of ovarian cancer, alerts them if a doctor's appointment is needed and allows users to download and print a full symptom report for the doctor's office.
Another recent alliance project sends ovarian cancer survivors into university medical schools and nursing schools across the country. The program, Survivors Teaching Students: Saving Women's Lives, is now implemented in 81 medical schools and 33 nurse practitioner, nursing and physician assistant training programs across the country. Mattern intends to step down from the OCNA presidency in January and focus completely on the program.
In her limited downtime, Mattern practices yoga, eats a vegan diet and reads “voraciously.” She fills the rest of her time by helping other cancer survivors who need guidance, questions answered or just to talk.
“A lot of feeding my soul comes from trying to help a woman recognize that she has choices,” Mattern says. “I may not choose that I have cancer, but I can choose how to have this experience.”
You read about Eileen Gould in the Winter 2010 story "The Cost of Living." Eileen received radiation as treatment for Hodgkin lymphoma in 1978. It wasn’t until years later that she developed coronary artery disease and breast cancer, possibly due to the effects of that radiation treatment. Today she is still the patient editor of Memorial Sloan-Kettering Cancer Center's Bridges newsletter (mskcc.org/bridges) for cancer survivors, which is published quarterly and is a venue for patients to share their stories about their journey.
“This fall, I started and am coordinating a pilot program for MSKCC called Art Expressions, which brings artists in residence into the hospital to teach free-of-charge workshops like watercolor, knitting, collage and paper crafts to outpatients at the hospital,” Gould says. “It has been enormously popular and we have waiting lists for all of the classes.”
Gould says the art provides an escape for patients and survivors, and many have expressed that it now gives them a positive view of coming to the hospital. The most important thing, she says, is that it is a source of relaxation.
She continues to see Kevin Oeffinger, MD, director of MSKCC’s Adult Long-Term Follow-Up program and Michael Stubblefield, MD, for other late effects from the radiation, including pulmonary and cardiac issues and autonomic dysfunction and rehabilitation. Staying healthy allows Gould to continue playing tennis, which she has enjoyed since college.