David’s Story, Male, Age 51, U.S.A
In January 2007, David Benincasa, a Philadelphia-based engineer, musician, avid golfer and father of two came down with the flu and the shakes. For a man who uses his hands, this was definitely a cause for worry. By Memorial Day weekend of that year, David’s symptoms had gotten progressively worse. His speech was beginning to slur, the shaking became more severe, his vision was blurry and he was unable to walk.
David and his wife, Carla, whom he describes as his “support system”, went to their local hospital. Doctors ran a battery of tests, but all of them came back inconclusive. They knew David had some type of encephalitis but for some reason they could not reach a diagnosis. That Friday night, David was taken to Jefferson University Hospital, a night Carla describes as “one of the worse nights we ever had.” After continuous vomiting and disorientation, the neurological doctor on call, examined David and immediately ordered an MRI. The doctor’s concern was that the next stage would be heart and lung failure, so David was moved to the Critical Care Unit where his breathing and heart rhythms were closely monitored. No one was sure, but there was an underlying suspicion that David’s rapidly deteriorating condition was due to some type of cancer. However, they were unable to pinpoint where in David’s body it was hiding.
On Monday morning, the doctors decided to try an IVIG in hopes that it would help reverse some of David’s symptoms. In the meantime, his doctor sent an email to Dr. Josep Dalmau, an old mentor and a friend at the Abramson Cancer Center of the University of Pennsylvania, asking for his guidance. Dr. Dalmau suggested doing a spinal tap. Based on David’s medical history, the doctor was sure he had paraneoplastic disorder or PND. Immediately after the diagnosis, David and Carla began to look up resources on the internet. “Everything we read was so negative,” David recalls. “All the blogs and websites we read. None of them reported any chance of surviving this. It was very discouraging.”
An IVIG was ordered and David’s progress was monitored over the next few weeks. The first week, David was unable to feed himself or do anything mobile and he still couldn’t successfully perform exercises used to test his neurological functions. However, after the second round of IVIG there was a slight improvement in David’s neurological exams. The Benincasas were very encouraged. By the following Sunday, on Father’s Day, David was able to feed himself. He could also see much better and could shave himself. That same day, his doctor drove David’s spinal fluid specimen to Dr. Dalmau’s office. Within a few days Dr. Dalmau’s team identified a paraneoplastic antibody (called anti-Ma2) in David’s spinal fluid. The following Tuesday, David was dismissed from Jefferson University Hospital and the Benincasas began home care physical therapy.
While back at home, David received another dose of IVIG and saw a significant improvement. When they came to see Dr. Dalmau at the Abramson Cancer Center, he advised them to see a urologist. Dr. Dalmau indicated that in young men the paraneoplastic antibody identified (anti-Ma2) almost always associates with a tumor of the testicle. This type of tumor can be microscopic and very difficult to identify. After much consulting back and forth between Dr. Dalmau and the doctors at Jefferson Hospital, the decision was made to remove David’s left testicle. The operation was performed at Jefferson in October; even though the doctors were a little skeptical about cancer actually being present.
After the operation, to the doctors’ surprise, David was rapidly improving! When David arrived for his appointment, he walked in on his own with a cane and outperformed all of his neurological tests. Carla says this particular moment sticks out in her mind. “The doctors were happy and grateful to be a part of this scientific exploratory surgery that would enable David to live a happy and healthy life”.
One more round of IVIG treatment was ordered and since then David Benincasa is now free of anti-Ma2 paraneoplastic antibodies. He is physically healthier and robust, with a happiness that radiates from his eyes and enough presence to fill a room. He recently played softball for his work’s softball league and went three for three in his first game. “I feel like I lost everything and now I have it back,” he says. He credits his wife, his children and the doctors who worked overtime on his case, with being the true champions. “It wasn’t me. My wife, and kids, and those amazing doctors. Those are the ones who are responsible for me being here today.” His wife agrees and also adds the importance of educating the public about paraneoplastic disorder. “Everything we read on the internet was negative and that’s not true. Families struggling with this need to know that help does exist. We found it here, through Dr. Dalmau. It’s important to get that out.”
If anyone would like to contact the Benincasa Family for questions, information, or to share their own personal experience with paraneoplastic disorder, they can be reached at their email address: firstname.lastname@example.org.