![]() ![]() Often, a sibling can make a good cell donor, but Raffer was an adopted child and knew of no siblings. Raffer, you definitely need to think about a permanent change-specifically, a stem cell transplant to replace the immune system with donor cells which would keep the disease permanently in check." "We had to address that with aggressive treatment," Kim said. When she saw him, Raffer already had tumors in his skin. Current therapies work only for four to six months and the cancer cells become more resistant and aggressive after each treatment, Kim said. With Sézary Syndrome, the disease has further infiltrated the blood so the cancerous cells circulate continuously and develop leukemia (cancer of the blood). "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." "Your insides fall out when you hear Stage 4 of anything," Raffer said. That made Raffer's disease state a Stage 4. 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. 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. That rash can ultimately transform into tumors and malignant cells can spread to other organs in the body. The most common mycosis fungoides symptoms causes lesions that appear as a scaly, itchy rash. When someone has mycosis fungoides, malignant cells in the blood travel to the skin. Mycosis fungoides is a type of lymphoma-the most common form of blood cancer. If not one of the world's experts, she is certainly the West Coast guru for what you have." What is mycosis fungoides? Go to Stanford, this physician told Raffer. ![]() 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. And there was nothing that worked very well to control it."Īfter 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. It also started getting very thick plaques, with lesions all over my back, my abdomen and my arms. "I have never in my life imagined what it would be like to have your whole body constantly itching," Raffer said. The most troubling symptom, however, was the itching. The rash changed over time, ultimately finding its way to every part of his body. The rash would get better, but then it would come back, worse than before. For several months, he was treated with steroids. 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. ![]() When the rash first appeared in 2008, Paul Raffer, MD, thought it was most likely something quite benign. This unusual blood cancer appears in the skin ![]()
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