After rare CTCL diagnosis, Lowcountry man finds dedicated care team at Hollings Cancer Center

Only about 3,000 people in the U.S. are diagnosed each year with cutaneous T-cell lymphoma (CTCL).

It’s a rare cancer, representing only a small percentage of the 80,350 cases of non-Hodgkin lymphoma diagnosed in the U.S. each year.

And in February, Rich Maxwell became one of those 3,000. It was a hard blow for someone who had just retired in January and had plans to enjoy travel, volunteer work and his family.

Suddenly, he had to come to terms not simply with a cancer diagnosis, but with the fact that CTCL is considered incurable and must be managed as a lifelong chronic condition.

Fortunately, Maxwell had access to a multidisciplinary clinic at the Medical University of South Carolina, where dermatologists and oncologists work together to manage this disease and provide specialized treatments offered nowhere else in the state.

“I truly believe in this team because they're going after my disease and not being cautious about it,” Maxwell said. “They're doing things that are appropriate for my condition, but they're not holding back either.”

A difficult diagnosis

Cutaneous T-cell lymphoma is a term for a group of cancers that develop in the white blood cells, or lymphocytes, in the skin.

It’s a cancer that shows up in the skin, in the form of redness; rashes; or raised, thick patches, but it’s not a skin cancer. Skin cancer develops in different types of cells in the skin, often as a result of sun damage. Doctors don’t yet know what causes CTCL.

Maxwell was already under the care of MUSC Health dermatologist Jane Scribner, M.D., because of a family history of dermatology issues. About two years ago, he started having eczema-like breakouts on his hands and legs.

Scribner performed several biopsies over the course of those two years, but it was only this year that one of the biopsies had a definitive result – CTCL.

Because CTCL involves both the skin and the lymphocytes, patients often see both a dermatologist and an oncologist.

At MUSC, patients can see both specialists together at a special clinic held twice per month. MUSC Hollings Cancer Center oncologist Ash Gurumurthi, M.D., who specializes in T-cell lymphomas, and physician assistant Amanda Stovall join their dermatology colleagues, John Maize, M.D., and Scribner, to meet with patients and patients’ families as a combined team.

“They talk it through, and they challenge each other,” Maxwell said. "I've got a team of people who are working together to do the best they can to treat my disease. In my case, I see the team semiannually, and I'll see Dr. Scribner in between. That way, I am seeing somebody every quarter.”

Gurumurthi said the combined clinic is valuable for getting everyone on the same page and making the best use of each specialty's expertise. Dermatology, for example, can address the skin symptoms – and often, patients in the early stage of the disease only see a dermatologist. Oncology can oversee the use of systemic treatments to attack the disease in the lymphocytes. Radiation oncologists sometimes get involved, too, using a type of radiation therapy that penetrates only millimeters under the skin.

Multiple treatment options

Maxwell has gotten a taste of all of these treatment options. In addition to topical treatments, he began phototherapy, a treatment that uses specific wavelengths of ultraviolet light to calm the skin lesions.

“It’s a process of providing you with UVA radiation at increasing doses for increasing lengths of time. My first treatment was 19 seconds – I mean, it took me longer to undress, but over time the length of treatment has increased,” he said.

By July, his treatment length had worked up to almost three minutes.

“It doesn’t take very long. But it’s a treatment that’s going to help beat down some of the cancerous T-cells. It’s not as dramatic as radiation therapy is, but it’s very useful at keeping things under clinical control, which is what we’re aiming to do,” Maxwell said.

He’s also had total skin electron beam therapy with the Radiation Medicine team at Hollings.

“That was remarkable. It really made a huge difference in what I could see happening on my skin,” he said.

Total skin electron beam therapy is a treatment that uses a carefully calculated dosage of radiation to penetrate the entire skin surface – but only 1 to 2 millimeters deep, so that the cancerous T-cells are affected, but the radiation doesn’t reach any internal organs.

"The good news is they've got Spotify in there, and I could listen to the music that I wanted to hear. It was a nice distraction.”

Rich Maxwell
cutaneous T-cell lymphoma patient

This type of radiation therapy is typically only available at academic medical centers, and Hollings is the only place in South Carolina to offer it.

The treatment requires patients to stand in different positions to ensure that the radiation reaches every inch of the skin. That can be taxing, Maxwell said, although the staff makes the process as easy as possible.

“The staff is terrific. They are very careful to work with you and tell you everything that's going to happen,” Maxwell said. “If there's anything uncomfortable about receiving the therapy, there would be two things. One is standing in the same position for four minutes. That can be a little uncomfortable. The other is that I've never had contact lenses in my life, so I wasn’t used to having shields in my eyes. They put these little eye cups in to protect your eyes after putting local anesthetic drops in each eye. The good news is they've got Spotify in there, and I could listen to the music that I wanted to hear. It was a nice distraction.”

Dealing with a cancer diagnosis

Possibly the hardest thing about his diagnosis was understanding what medicine can, and cannot, do.

Maxwell had to dispense with the common understanding of “remission.” Instead, the medical team helped him to think in terms of “under clinical control.”

“The therapies, whether it's oral medications, phototherapy, radiation therapy, are all modalities to help me keep my disease under clinical control,” he said. “It's never going to be cured, but it can be controlled. And that's what I love about the team; it’s that they know all the modalities that can help do that. They're talking to each other. They're challenging each other's viewpoints so they can come up with the best recommendations for me as the patient.”

“It's never going to be cured, but it can be controlled. And that's what I love about the team; it’s that they know all the modalities that can help do that. They're talking to each other. They're challenging each other's viewpoints so they can come up with the best recommendations for me as the patient.”

Rich Maxwell
cutaneous T-cell lymphoma patient

His daughter, who is in graduate school for counseling, strongly urged him to get a therapist to talk through his feelings about his diagnosis with, and he’s found therapy to be very useful. He also found a support group through the Cutaneous Lymphoma Foundation.

Treatments have left him fatigued, but he’s still able to do some of his volunteer work, and he’s eager to be able to do more.

“It's very easy, I think, to isolate yourself and feel sorry for yourself,” he said. “There are plenty of times I feel sorry for myself. But there are also things I can do to stop that or to at least hold it at bay so that I can enjoy the fact that I have a wonderful daughter. I have a wife whom I've been married to for 50 years. And we're going to enjoy the rest of our lives together.”

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