A look at the social side of medicine. In this edition, Jose A. Bufill, MD, shares the story of a patient who was helped by coincidence, serendipity, and hematologists around the world making an effort to talk to each other.
Stuffy nose. Everybody gets a stuffy nose once in a while. When the stuff didn’t clear with antibiotics and decongestants, his family doctor referred Enrique to an ear, nose, and throat guy for evaluation of bad sinusitis. He didn’t need any expensive tests to figure out what was going on: a little white nubbin about the size of a pencil eraser right on the roof of Enrique’s palate. It took a week to book the biopsy. When the doctor went back in to take the thing off, the nubbin had grown… a lot. It looked like a crater. And Enrique was talking as if someone was pinching his nose. It took longer than usual for the final diagnosis to come back: “extranodal NK/T-cell non-Hodgkin lymphoma, nasal type.” A mouthful even for a native English speaker.
Enrique was from El Salvador and, though he knew some English, he preferred to speak in Spanish. He had lived in the United States for about 10 years, and his co-workers at the factory called him Hank. He was a welder. He and his buddies made axles for RVs and mobile homes in Elkhart, Indiana. His wife and four young children came over from El Salvador once he got a steady job, and they were all with him the day I met him for the first time. His doctors saved time by arranging for CT scans to be completed before our initial consultation. Those scans showed a mass partially filling his maxillary sinus and eroding through his palate. Fortunately, there seemed to be no lymphoma elsewhere. By the time I got to meet him, he had received a couple of doses of radiation to his face.
My first impression? Hank looked really sick. His voice was muffled. His face and eyes seemed puffy. All his bones ached. Sweats and low-grade fevers had begun. I called his radiation oncologist and learned that he had been completely well the week before. His blood work results confirmed our concerns: The calcium level was way up, his kidneys were shutting down, and worse, those test results had recently been normal. He believed me when I wrote “linfoma – muy malo” on our official stationery. A PET scan now showed his lymphoma was everywhere: bones, lymph nodes, liver, and spleen. Again, none of this had been apparent on the CT scans done days before. Hank was in big trouble. His cancer was exploding.
I arranged for him to be hospitalized immediately to try to reverse the kidney failure and lower his toxic calcium levels. It was clear that radiation alone would be inadequate and chemotherapy would be needed right away. But which chemotherapy should we use? He was falling apart under our noses. Extranodal NK/T-cell non-Hodgkin lymphoma, nasal type, is an exceptionally rare tumor everywhere except among East Asians and certain native populations of Central and South America. Even among those groups, it accounts for no more than 6 percent of all lymphomas. None of my colleagues recalled having treated a case and – as is the case for many rare cancers – no well-validated treatment exists. Patients with advanced disease can die in a matter of months.
Happily for me, a colleague in the bone marrow transplantation section at the University of Chicago had just returned from Hong Kong, a part of the world where Hank’s disease is most prevalent. After reviewing Hank’s case with him, he recalled a conversation he had a few days before with a Chinese colleague who told him about a new chemotherapy program he and his colleagues had developed with promising results in this tumor. Their research had just been accepted for publication, and the Chinese doctors decided on a perfect acronym: their treatment would be called “SMILE” – one letter for each of the five drugs used. With 24 hours of IV fluids under his belt, Hank was feeling better and his numbers were improving. He was ready to start chemo.
I can’t say that Hank’s SMILE was a walk in the park. A rollercoaster ride would be more accurate. He had many complications: severe nose bleeds, a trip or two to the intensive care unit with sepsis, a brief brush with dialysis, and many anxiety-ridden weeks. But today, Hank is back, working full-time and in complete remission from his lymphoma. While he was sick, his axle-manufacturing company went out of business. After a few years on disability, he re-entered the job market and – remarkably – found a job making axles for a competing firm. He still struggles with the English language, but he loves his new country. Hank, his wife, and their children are now U.S. citizens, and from time to time, his wife brings in great “pupusas” for the nurses and office staff.
Hank received his cancer care in a scrappy, small-town hospital in northern Indiana. Around here, Amish buggies compete with soccer moms in mini-vans on country roads. Our factories make car parts, mobile homes and RVs, hand-made furniture, and even the world’s finest sliding door hardware (a system designed from scratch by one of my patients who died not long ago at age 94, the patriarch of a wonderful family and founder of a multimillion-dollar business). And, if you ask Hank and his family, we also have the best medical care in the world right here.
What made the system work for him was that people made an effort to talk to each other. Think about it: A European-born academic transplant doctor working in Chicago travels to China for a medical meeting. He hears in passing about a new treatment for the rarest of lymphomas. He returns home to a pile of messages and answers the one from a friend and colleague in private practice. Within a few hours, Hank’s U.S. team confers with colleagues in Hong Kong to help him – an El Salvadoran immigrant in dire straits – get state-of-the-art treatment, months before research results would be made public. His chemo orders were written using the galley proofs from the Chinese paper. Coincidence? Serendipity? Perhaps. What is certain is that Hank’s SMILE has become – for all of us – a heartfelt laugh.
*Note: The patient’s name and country of origin have been changed.