Ocular Melanoma: An Uncommon Dedication to a Rare Cancer
A survivor describes the Ocular Melanoma Foundation’s third annual retreat
By Sue Russell
Editor's Note: Sue Russell died on Nov. 26, 2017. The following story appeared in our web-exclusive event coverage for Cancer Today.
On a Friday afternoon in early November, I rushed from work in Center City Philadelphia to greet friends with whom I share a diagnosis—ocular melanoma (OM), or eye cancer, a rare form of cancer quite different from the better-known skin melanoma. I had met my OM friends virtually through online forums or the Facebook OM support group, but we also had spent time together previously over lunch and dinner.
Because I live and work in Philadelphia, a hub of OM-related
research and treatment at Wills Eye Hospital and Thomas Jefferson University Hospital, OM patients from other areas frequently pass through. I often get together with them, but this weekend was special. We were gathering for the third annual Eye Am Not Alone (EANA) retreat sponsored by the Ocular Melanoma Foundation (OMF), held Nov. 1-3 at the Kimmel Cancer Center at Jefferson.
A Rare Cancer
Ocular melanoma is rare. The odds of being diagnosed are about six in a million, and roughly 2,500 people are diagnosed with it each year in the U.S. When I was diagnosed in 2011, 50 percent of OM patients were expected to die of the disease from its spreading to other organs, and mortality ranged from six months to five years after diagnosis. However, this percentage has been updated as a result of genetic testing.
It’s now known that the risk of metastasis and death from OM is estimated to be about 50 percent to 70 percent for patients whose genetic factors are associated with higher risk, and about 10 percent for patients who do not have these genetic characteristics. Theoretically, this growing understanding of OM genetics can guide the development of targeted treatments. However, OM’s rarity makes formal clinical research hard to conduct, because the number of available patients is too small to warrant large multi-center clinical trials. These trials are necessary for establishing a drug’s efficacy, which boosts its chances of getting approved by the U.S. Food and Drug Administration (FDA).
It is not easy living with the uncertainty surrounding cancer. The feeling is magnified when proven treatments are scarce or nonexistent, and insurance companies balk at paying for off-label treatments. The challenge is to get the word out about better outcomes and ongoing clinical trials so people with OM can feel less alone and learn to be their own advocates with the knowledge they gain. That’s what the EANA retreat is all about.
The Retreat Experience
The Ocular Melanoma Foundation was started in 2003 by ocular surgeon Robert Allen, who was diagnosed with ocular melanoma and treated by enucleation (removal of the affected eye) in 2000. Allen had recognized the lack of research into and proven treatments for OM, leading him to establish the foundation to help other ocular melanoma patients. His son, Grant Allen, became chairman of the OMF upon Robert’s death in 2005, after his cancer spread. The younger Allen presided over this year’s retreat, which he called the largest gathering of eye cancer patients ever.
“We partnered with the Kimmel Cancer Center at Jefferson to construct an agenda for patients and caregivers that was a balanced blend of hard, scientific knowledge and tactical information for the here and now of cancer treatment,” Allen says. “Every year, EANA is a key OM community catalyst, and our hope is that patients leave with a sense of education, of renewed energy and, most importantly, of close community.”
The retreats are free for patients; a nominal fee is charged to caregivers and others. OMF provides all meals and offers financial help to those who otherwise couldn’t afford to attend. In addition, the foundation offers funding for travel to and from OM treatments, a pressing need for many patients who must travel long distances for consultation and treatment.
For this year’s OMF retreat in Philadelphia, 140 people came from 21 states and several countries, including a participant who made the trip from Australia. Many more followed the retreat through live streaming on the OMF website
. Those attending came to hear from top researchers about recent progress, to learn and share information with each other, and to gain the support of others who would understand. As one attendee put it: “This disease is not a death sentence. There is some hope, and there is nothing like talking to someone who knows exactly how you feel, who has the same fears and worries [and] goes through the same level of emotions.”