“I knew that you didn’t see a hematologist and have a bone marrow biopsy when you had a hangnail.” That is how Joe Schwarz put it when he was being diagnosed for multiple myeloma in 1984. Now, nearly a quarter of a century later Dr.Schwarz, still an active, productive astrophysicist explains his disease and treatment. During these decades, Joe did have some remission, but for so many of these years, his myeloma was active, and he needed ongoing treatment that carried him from an early experimental transplant through the more common stem cell procedures, and even a bone marrow transplant from a sister who had two bouts of breast cancer. He is a marathon runner, too. And now, Joe seems to be setting another pace – this one to becoming the longest surviving myeloma patient with active disease. We are all out there on the track with him – following his lead, hoping we can make it, too.

Joe grew up on the West Side of Manhattan, two blocks from the Museum of Natural History. His father was an international lawyer who worked for the United Nations Secretariat from the very beginning, in 1945, to the time of his mandatory retirement age in 1963. Before the UN, he worked as an attorney for the OSS during World War II. Joe’s mother was a reporter for the New York Times where she met the brilliant attorney and married. When their first child was born, Abby, who is 4 and 1/2 years older than Joe, she left her reporting job. But she still stayed busy and became a fundraiser for the Americans for Democratic Action.

Sometimes cancer seems to hit randomly, but if there were ever a cancer cluster, it seemed to be happening in Joe’s immediate family. His mother died of Acute Lymphocytic Leukemia when she was 73. His father died of colon cancer just before his 81^st birthday, and during the 1980s, his sister was battling breast cancer – she had two bouts with it. When Joe was being diagnosed for myeloma, his mother had just died two years earlier, he was helping to take care of his father who was struggling with colon cancer, and his sister was fighting her way through breast cancer. Joe says, “For the first time in my life, it was clear to me that I was really alone.” Joe didn’t want to share his myeloma prognosis with his ailing father.

Joe’s own diagnosis came along in a surprising way. He was living and working in Boston. Back in 1972, he received his PH.D while studying with famed astrophysicist, Richard McCray who had been an assistant professor at Harvard until the early 1970s when he moved to Colorado State University. Joe stayed in Cambridge, and certainly took well to the research and academic environment of Harvard.  He loved to run, and in 1984, he was training for his seventh marathon, running along the Charles River while his girlfriend, Ginevra, accompanied him on her bicycle. He was planning to run about 10 miles, but after three or four, he just could not run any longer. He just thought that he was overtired, but a few days later, his heart was beating heavily even after a slow warm-up jog. He knew something was wrong, and he went to have a checkup with his GP who took some blood tests and began to see irregularities. The most glaring problem was that the enzyme which suggests viral hepatitis was very much elevated. His SGOT, or serum glutamic oxaloacetic transaminase was at 135. SGOT is present in the liver and heart, and when it spills over into the blood, especially at such high levels, then, there is a problem. His doctor, Mathew Budd advised that he back off running, and certainly not drink alcohol for awhile. Joe traveled to Italy that summer with Ginevra, and met her family. He wondered about not being able to drink in Italy. “They probably thought that I was some weird American teetotaler – but I didn’t touch a drop of wine while I was there.”

When Joe returned from his trip to Italy, Dr. Budd told him that not only was his SGOT still elevated, that there was a another item to look into – a protein showing up in his blood, and he needed to see a hematologist, and probably have a bone marrow biopsy. The diagnosis was troubling to Joe, but the doctors waited over a year before considering any treatment. He was in a wait and watch program. Joe returned to Italy to join Ginevra who had won a 1985 competition in astrophysics. It looked like Ginevra was returning to her homeland permanently. Joe received a leave of absence from his job at the Smithsonian Astrophysical Observatory in Cambridge, and he received a temporary position in Italy. Over the years, that temporary stay in Europe expanded to the point he is now fully employed in Munich at the European Southern Observatory.

Joe was only in his late 30s when he was diagnosed with myeloma. He never gave up running, and his first instinct when being diagnosed was to get out the running shoes. The world wasn’t too large for him to find the best treatment. Here is an American in Europe, seeking out the best that could be offered for Myeloma. While in Italy, he came under the care of Alberto Grossi, who according to Joe, “Became one of my closest friends in Italy, but also my doctor.” This doctor provided great insight and direction. But Joe didn’t stop in his treatment tracks in Europe. He also traveled to the United States to receive innovative treatment at Dana Farber where his doctor became Ken Anderson. Sometimes, patients refuse to travel to the next town for seeing medical care, or even a second opinion. Joe traveled different continents. Maybe, that is the reason for him still being alive, almost 25 year after diagnosis. There is no substitute for aggressively going for a cure.

Joe has never been cured, but he is a perfect example of how myeloma can be treated as a chronic illness. During these three decades, Joe has had active disease, maybe some remission, but mostly myeloma on the march. From the very beginning of his diagnosis, he pursued novel approaches including special bone marrow transplants, two stem cell transplants in 6 months, interferon, thalidomide, steroids, monoclonal antibodies, and even that transplant from his sister who had breast cancer twice. And miraculously, Joe is still with us – still a productive member of the scientific community. The myeloma remains under enough control so that he can get on with his life. There seems to be a whole new world opening to us myeloma patients, and it has taken a brilliant astrophysicist to help point the way.