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When a rash isn't just a rash: A patient's battle with mycosis fungoides

Paul Raffer, MD, is a doctor, accustomed to avoiding the kind of leap that non-physicians often make by assuming common symptoms are something far more serious. So he saw the rash that appeared on his body a few years ago as nothing to worry about. The irony, of course, is that the rash turned out to be something quite serious: mycosis fungoides, a form of blood cancer that shows itself in the skin. It’s a common form of cutaneous lymphoma but it is considered rare, appearing at a rate of 3.6 cases per million people each year.

Raffer’s belief that the rash was benign changed, as he told me for this story, when that rash spread over his entire body and began to itch continuously. “I stopped being able to sleep. My skin started flaking and peeling. I 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.”

Because mycosis fungoides is rare, specialists are not plentiful. But what encouraged Raffer, who lives in Arizona, was when his doctor instructed him: “Go to Stanford. See Dr. Youn Kim. If not one of the world’s experts, she is certainly the West Coast guru for what you have.”

Once Raffer was evaluated at the Stanford Multidisciplinary Cutaneous Lymphoma Clinic, he received another blow: His condition was at Stage IV. (Mycocis fungoides can progress quite slowly, but Raffer’s had advanced to an aggressive form called Sézary syndrome.) “Your insides fall out when you hear Stage IV of anything,” Raffer said. But, three years later, Raffer is healthy again.

2 Responses to “ When a rash isn't just a rash: A patient's battle with mycosis fungoides ”

  1. Linda Holt Says:

    My daughter has a different form of this. She has large spots on the legs and buttocks. She lived in Australia. She started having this when she was a teenager. We went to doctor for years trying to find out what this was. She doing well but has problems on and off. She’s now 41 years old. They were wondering if her dads exposure to Agent Orange could have caused this?

  2. R. Clayton Says:

    I have had a horrible, itchy rash for over a year now. ( I also have CLL leukemia) and wonder if this rash could be mycosis fungoides. I have been to several dermatologists, who have done biopsies which have shown excema. But it is all over my body and the itching has been so bad that I have to stay home most of the time. I have even had to go to a burn center for treatment. Could mycosis fungicides be related to CLL?


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