How Franklin’s Health Was Restored after Histiocytosis
Franklin Walters is a retired Navy diesel engine mechanic who was diagnosed with Langerhans cell histiocytosis, a rare cancer of the blood. When doctors at the VA hospital were unable to treat his disease, he came to MSK and received an effective, experimental targeted therapy.
When 58-year-old Franklin Walters first visited Memorial Sloan Kettering in May 2018, he was incredibly sick. The retired Navy diesel engine mechanic and his family feared that nothing more could be done.
“He was literally at death’s door when he came here,” says Franklin’s MSK doctor, neurologist Eli Diamond. “He was in such a hopeless place.”
Franklin had Langerhans cell histiocytosis (LCH) a rare cancer of the blood that usually attacks the skin, causing a variety of rashlike conditions. In some people, it also causes tumors on the bones. Franklin had been diagnosed a few years earlier and had been treated at the Veterans Affairs (VA) Medical Center in Manhattan. But despite the best efforts of the doctors there, the treatments were not working.
Franklin’s mouth was filled with open wounds. It was nearly impossible for him to eat and drink. He had lost 40 pounds in less than two months. Additionally, his buttocks and groin area were covered with excruciating sores, making it painful to sit down. When he wasn’t lying in bed, he had to carry around a pillow to sit on.
Running Out of Options
“The doctors at the VA gave us two choices,” says Denia Walters, Franklin’s sister and caregiver. “He could go to the VA Medical Center in Brooklyn, where they would give him radiation therapy for the sores in his mouth as well as a temporary feeding tube, or we could go to NewYork-Presbyterian for chemotherapy. We didn’t think he was strong enough to handle the potential side effects of the radiation treatments, so we decided to try the chemotherapy.”
When that treatment also failed to stop his symptoms, Franklin was referred to Dr. Diamond. Dr. Diamond is one of the world’s leading experts in treating LCH and other forms of histiocytosis. Combined, these rare disorders affect only a few hundred people in the United States every year. Dr. Diamond and the rest of MSK’s histiocytosis team see more adults with these conditions than doctors at any other hospital in the country.
As part of his research, Dr. Diamond is leading a clinical trial of the drug cobimetinib (Cotellic®) for histiocytosis. Cobimetinib is a pill that blocks the activity of a protein called MEK, which can cause histiocytosis tumors to grow. It is already approved to treat melanoma.
Unfortunately, Franklin didn’t qualify for the study due to other health problems. In addition to LCH, he has diabetes and kidney disease. He had already lost an eye due to diabetes, and his doctors were worried about his other eye.
A Clinical Trial of One
After pursuing many avenues to gain access for the appropriate treatment, Dr. Diamond was able to get Franklin another drug, called trametinib (Mekinist®). This drug, which works in a similar way as cobimetinib, is also approved to treat melanoma that’s caused by a MEK mutation. “The company, Novartis, agreed to provide the drug through its compassionate use program,” Dr. Diamond explains. “It’s essentially a clinical trial with only one patient.”
The decision came with risks, but both Dr. Diamond and Franklin decided that the potential benefits outweighed them.
“There’s no information in the medical community about whether we can give these drugs to someone like Franklin, who has advanced kidney disease,” Dr. Diamond adds. “Franklin’s story is a nice illustration of how someone with a rare condition who also has other independent medical complications can still benefit from cutting-edge treatments here at MSK.”
A Huge Turnaround
Franklin’s response to trametinib was remarkably fast. Within a few weeks, the sores in his mouth were gone and the ones on his backside began to close up. The pain was going away, and he was able to eat normally again.
There were still complications. He had to be hospitalized twice, once for kidney problems and another time for an infection. Dr. Diamond had a candid conversation with Franklin about becoming more proactive in his own care. Both Franklin and Denia credit this tough love with the huge turnaround in how Franklin copes with his overall health, including how he manages his kidney disease.
Franklin is still dealing with his other health problems, including undergoing dialysis three times a week. But his LCH is gone. He has not had any side effects from the trametinib, which he’s able to take at home. Dr. Diamond plans to keep him on the drug indefinitely.
“When you have a winning team, you don’t change out the players,” Denia says. “We don’t want to risk having his cancer come back.”
Franklin is a man of few words, but he has some significant ones for Dr. Diamond. “Every time I see him, I call him my miracle worker,” he says.