This unusual blood cancer appears in the skin
When the rash first appeared in 2008, Paul Raffer, MD, thought it was most likely something quite benign. He is a neurologist, not a skin doctor, but he had practiced long enough to know that a rash is a very common symptom in medicine. For several months, he was treated with steroids. The rash would get better, but then it would come back, worse than before.
The rash changed over time, ultimately finding its way to every part of his body. The most troubling symptom, however, was the itching.
"I have never in my life imagined what it would be like to have your whole body constantly itching," Raffer said. "I stopped being able to sleep. My skin started flaking and peeling. It also started getting very thick plaques, with lesions all over my back, my abdomen and my arms. But the worst part was the itchiness. And there was nothing that worked very well to control it."
After a consultation with a dermatology specialist who suspected Raffer might be having an allergic reaction to some substance, Raffer went through a series of tests that disproved that theory. Next, he was directed to a dermatopathologist who did a second look at Raffer's skin and shared the results: mycosis fungoides, sometimes called cutaneous T cell lymphoma of the skin.
Go to Stanford, this physician told Raffer. "See Dr. Youn Kim. If not one of the world's experts, she is certainly the West Coast guru for what you have."
What is mycosis fungoides?
Mycosis fungoides is a type of lymphoma—the most common form of blood cancer. When someone has mycosis fungoides, malignant cells in the blood travel to the skin. The most common mycosis fungoides symptoms causes lesions that appear as a scaly, itchy rash. That rash can ultimately transform into tumors and malignant cells can spread to other organs in the body. Mycosis fungoides, which translates roughly as mushroom-like fungating disease, is the most common form of a subfamily of cancers caused by one particular type of immune system cell, the T-cell lymphocyte.
Youn Kim, MD, director of Stanford's multispecialty cutaneous lymphoma program, quickly discovered that Raffer's mycosis fungoides, which can grow quite slowly, had advanced to an aggressive form called Sézary syndrome. That made Raffer's disease state a Stage 4. That truly frightened him.
"Your insides fall out when you hear Stage 4 of anything," Raffer said. "But I figured if anyone was going to be able to figure out the way to treat this, it would be the team at Stanford."