It took a stem cell transplant from her sister to help Julie Polon survive Stage IV non-Hodgkin lymphoma. But the same treatment that saved her life also threatened to ruin it with side effects caused by a common and devastating condition.
Now, thanks to scientists at the Fred Hutchinson Cancer Research Center, Polon, a 47-year-old mother of five, has found a way to heal one of the worst symptoms of chronic graft-vs.-host disease, which occurs when cells from a stem cell donor attack the body of the host. In Polon’s case, the GVHD affected her intestines, her mouth, and, worst of all, her eyes.
Her case of ocular GVHD was so severe, the Colville, Washington, woman was recruited as one of the first participants in a clinical trial of bandage contact lenses, therapeutic devices that protect the cornea and soothe the dry eye, irritation, redness and light sensitivity suffered by many stem cell transplant patients.
“It feels like sand in your eye. Blinking was just awful. It’s the friction of your eyelid,” recalled Polon, who received her allogeneic stem cell transplant from her sister, Leah Rowe, in 2010, after chemotherapy and a transplant with her own cells failed to halt the aggressive cancer that targets white blood cells.
Starting two years ago, her dry eye condition got worse and worse, Polon said. Then, the GVHD started affecting her vision. Everything was blurry, from morning to night. She couldn’t read. She couldn’t watch TV.
“When we started this in April, my vision was just fuzzy enough that I was ready to stop driving,” said Polon, whose boys range in age from 17 to 26, with two still living at home, including a 20-year-old son with Down syndrome. “I was so worried at the thought of not being able to get my kids to school.”
That’s when she enrolled in the clinical trial designed by Dr. Stephanie Lee, a bone marrow transplant and GVHD expert at Fred Hutch, Dr. Tueng T. Shen, a professor of ophthalmology at the University of Washington, and their colleagues.
They studied the effect of bandage contact lenses in 19 patients with moderate to severe ocular GVHD. After four months of using the bandage contacts and regular doses of antibiotic eye drops, more than half of the patients – 54 percent – reported that their symptoms improved significantly.
The researchers hope to present their results in February at Bone Marrow Transplant Tandem Meetings planned by the Center for International Blood and Marrow Transplant Research, or CIBMTR, and the American Society for Blood and Marrow Transplantation, or ASBMT.
But Polon said she doesn’t need a presentation to know that the treatment is a success. She started feeling the benefits within a couple weeks.
“It’s been miraculous for me,” she said. “If it works for anybody else like it did for me, they’ll be so happy.”
The study was partially funded by the National Institutes of Health’s Office of Rare Diseases Research, the National Center for Advancing Translational Sciences and the National Cancer Institute. Contributors also included the David and Patricia Giuliani Family Foundation of Seattle.
The trial grew out of a common and perplexing problem. GVHD affects between 50 percent and 75 percent of all patients who receive allogeneic transplants, in which patients receive cells from outside donors. Of those, more than half of the chronic GVHD cases involve the eyes, said Lee.
“Graft-vs.-host disease is awful,” said Lee, adding that ocular GVHD is particularly distressing. “People have to pull over to put drops in their eyes because they can’t see while driving.”
Bandage contact lenses were first used in the 1970s to help heal eye problems caused by conditions including corneal ulcers, chemical burns, surgery and disease. They’re much like normal contact lenses, just a little thicker and they contain no vision correction. They protect the damaged cornea, restoring vision and function.
Shen, who has been part of the eye care team at the Seattle Cancer Care Alliance for more than a decade, has used bandage contact lenses with GVHD patients off-label for years. That’s despite reluctance among many ophthalmologists to use the bandage lenses because they're left in for weeks, even months, at a time, posing a risk of serious eye infections.
In an analysis of treatments of chronic ocular GVHD, the American Academy of Ophthalmology says that the bandage contacts may be used, but only with “extreme caution.”
Shen acknowledged that some of her peers are leery of the devices. But she emphasizes that patients are required to use antibiotic drops three times a day to prevent infections.
“Of course, the risks of infection with the use of contact lens is a concern (generally less than one in a few thousands cases)” she wrote in an email. “However, the benefit of restore quality of life is also a major consideration of our treatment plans.”
Conducting a well-designed, well-documented Phase II clinical trial was a step toward validating the practice, Shen added.
“Our data is excellent,” she said. “There is no question our patient(s) experienced significant improvement in their quality of lives with safe use of bandage lenses.”
Lee hopes that the success of even this small trial will encourage other transplant experts and ophthalmologists to consider using the bandage contacts in GVHD patients.
“Eye GVHD knows no boundaries,” she noted, adding that there are patients all across the U.S. who may be suffering from the condition. Many may not live close to an eye care doctor who has used the lenses to treat GVHD.
“I hope our report will help spread the word that these lenses may provide significant relief for patients severely affected by eye GVHD,” she said.
For Polon, the bandage contacts were so helpful that she didn’t want to take them out when the clinical trial ended. Although the lenses soothe the symptoms of GVHD, they don't reverse the condition, only the symptoms, Lee said. Polon knew the problems would begin again.
“I’m still using mine, we’re still doing it,” she said. “I don’t know if I can give them up.”
JoNel Aleccia is a staff writer at Fred Hutchinson Cancer Research Center. From 2008 to 2014, she was a national health reporter for NBC News and msnbc.com. Before that, she was a reporter, editor and columnist for more than two decades at newspapers in the Northwest. Reach her at firstname.lastname@example.org.