When Craig Kozicki was diagnosed with peritoneal mesothelioma he knew that statistically, his prospects were grim. But his positive attitude and science background prompted him to question both his doctor's fatalistic prognosis and the relevance of dismal survival statistics to his own case.

Craig Kozicki took responsibility for his own treatment, searched out the best tools he could find, and took on surgery, chemotherapy, radiation, and out-of-state medical care with an upbeat approach. Six and a half years later, Craig is back to work and family activities, living with no evidence of disease, and eager to help others face mesothelioma with knowledge and a positive outlook.

In July of 1998, at age 42, Craig began to experience symptoms that at first he attributed to digestive trouble: bloating, indigestion and changes in his abdomen. He was losing weight, but didn't know it because his stomach was getting bigger. His first thought was that he needed to do more exercise. When his abdomen became hard, he felt as if he were pregnant and saw a doctor. Following a CAT scan, his doctor determined that Craig had ascites (fluid buildup in the abdomen) which was drained and tested. There were no mesothelioma cells in the fluid, but because of Craig's age and health history, the doctor instead suspected liver problems.

Craig underwent exploratory surgery (debulking, spleenectomy and omentumectomy), intended to obtain samples of his liver. What the surgeon found was peritoneal mesothelioma, confirmed by the pathology report. Craig's doctors had acted quickly, and he received his diagnosis only nine days after his first visit to the doctor. But the prognosis, delivered to his wife, was bleak. The doctors told Shelly that Craig should get his affairs in order; neither conventional surgery, radiation nor chemotherapy would do anything for him. He was advised to enjoy the time he had left. After receiving the news, Shelly went into such a state of shock that they called in her own trusted physician, the GI responsible for Craig's rapid diagnosis, to help calm her down.

Craig's response was straightforward and proactive. A chemical engineer with a degree from Wayne State University, Craig was working in the manufacture of intermediate chemicals. His active lifestyle included family vacations, softball, golf, basketball and traveling to attend the sports events of his twelve-year old daughter, Emily. When he received the news that his condition was serious, the first thing he wanted to do was tell Emily. It was perhaps the hardest thing he had to do during his entire ordeal with mesothelioma. Throughout, Craig and Shelly remained very open with Emily, telling her about test results and Craig's progress during treatment.

When an oncologist saw Craig, he reiterated the doubtful prospects for treatment. He said conventional approaches were not very effective, and Craig's best bet was to end up in a clinical trial for a new chemotherapy drug or other treatment.

At this point, Craig decided to become his own advocate in seeking out treatment. Craig got on the Internet and dove into researching his options, in addition to reading and talking to people about the disease. He knew that the less-than-hopeful statistics he was seeing were already very old. And, he reasoned, his case was not necessarily represented by those statistics. He considered himself one individual data point out of the total, the one who was not going to accept that there was little or no hope. Instead, Craig was determined to find the best people available to go to work on his behalf.

Craig and other family members used the Internet to find doctors on the cutting edge of research and treatment of mesothelioma, realizing that finding the best care would require out-of-state travel over an extended period. His file was sent to Dr. Nicholas Vogelzang in Chicago (a member of MARF's Board of Directors) and Dr. Paul Sugarbaker in Washington, D.C. At the same time, his sister discovered Dr. Robert Taub (a member of MARF's Science Advisory Board) in New York City, and set up an appointment for Craig.

Craig saw Dr. Taub and his partner in the mesothelioma treatment protocol, surgeon John Chabot, and immediately knew he was where he needed to be. After consulting with Dr. Taub and Dr. Chabot in late July of '98, he was accepted into their trimodal protocol. Craig began the treatment feeling satisfied that he was armed with the best tools available to him.

At the time, Craig did not have a bulky tumor. It appeared as freckles on the surface of the peritoneum and intestine. Nonetheless, because of the dour prognosis he had received, Craig assumed that the surgeon would want to act as quickly as possible. Craig had already planned a family vacation to California and when he saw Dr. Chabot he asked for a note indicating that he should receive a refund on his plane fare for medical reasons. Dr. Chabot surprised Craig when he told him that waiting a week or two wouldn't matter. The surgeon suggested that if he was mentally able to enjoy his trip, he should take the vacation with his family.

At the end of August, Craig underwent the first step of the trimodal approach--an abdominal surgery called laparotomy and removal of part of the peritoneum called the omentum. During the surgery, Dr. Chabot scraped out as much of the tumor as possible in order to make the second step, chemotherapy, more effective. Chabot also evaluated the progress of the disease, and decided to remove Craig's affected spleen. Finally, he installed two ports in Craig's abdomen. The ports are essentially two 3/4-inch diameter balls, each with a tube going down into the abdominal area, used to administer intraperitoneal chemotherapy.

In mid September, while recovering from the surgery, Craig developed a blood clot and spent some time in the hospital. Craig's intraperitoneal chemotherapy began in early October and ended in January of 1999. Craig received twelve intraperitoneal treatments, the first eight alternating between the chemotherapy drugs cisplatin and Adriamycin (doxorubicin), administered every seven days to two weeks, depending on his schedule and tolerance of the drugs. The final four were weekly treatments of the immunotherapy drug interferon-gamma.

During the treatments, Craig was determined to stay active and not fall into moping and feeling sorry for himself. He suffered from some nausea, but was able to limit his use of anti-nausea medication while striving to work as much as he could. He managed to work 3 to 4 hours a day, mostly from home. He walked and did household tasks, being careful not to overextend himself. Craig felt very fortunate when he compared his own experience to what his research had led him to expect. While he didn't have the pep and energy he was used to, he didn't need to sleep six hours during the day like some people he had heard of, nor did he experience severe vomiting.

After chemotherapy and before the scheduled second surgery, Craig received a PET scan which revealed two small spots of residual disease. On February 8, 1999, Dr. Chabot opened Craig's abdomen to remove the chemotherapy ports, do an inspection, and perform a "hot chemo belly wash." For 90 minutes the abdomen is infused with heated cisplatin and mitomycin. Craig was sore internally for a period after the surgery, but he was soon out of the hospital, walking around and engaging in light activity. The two diseased spots were not visible on the post-surgery PET scan, and Dr. Taub and Dr. Chabot determined that the surgery and belly wash had removed them. Nonetheless, Dr. Taub decided to do six additional intravenous chemotherapy treatments using a gemcitabine/cisplatin combo each time. These were administered to Craig in St. Louis, one treatment per week.

Craig found that he was able to receive many of his treatments, then go right to work. As he got further away from his second surgery, he was gradually increasing his time back at his career. Craig received his radiation therapy in St. Louis with a local radiation oncologist. The radiation consisted of a low dose covering a large area from the hip to the chest, with a barrier over vital organs. During the 28 treatments, one every day, Monday through Friday, Craig surprised a lot of his acquaintances because he didn't feel sick and went right to work after each treatment.

Throughout his progress against mesothelioma, Craig took it one step at a time, refusing to look at it as an overwhelming "big scary monster." He underwent ten months of treatment, 20 trips to New York, three surgeries, extra chemotherapy and daily radiation, but he looked at each piece discretely, as a manageable chunk. He used to joke with his colleagues about his progress, saying each day after a treatment what percentage of the total he had already completed.

Craig was finished with all his treatments in June of 1999. Then, every three months he scheduled a PET scan, CAT scan, blood work and a trip to New York to visit Dr. Taub and Dr. Chabot. Later, his visits were lengthened to follow-ups every six months with no treatment.

In late November of 2001, Craig's doctors discovered a recurrence of tumor in the rectus muscle. In January of 2002, Dr. Chabot removed the tumor and part of the muscle, replacing it with a patch of Mylex and administering 25 follow up radiation treatments directly to the muscle after this surgery.

Four years later, Craig says he is not in any pain, and is not restricted in doing what he wants. He gradually returned to full-time work and enjoys golf, basketball and his normal schedule of family activities, including vacations. He does have adhesions in his abdomen, and is back to seeing his treatment team every three months. He still feels that, medically, he couldn't be in better hands in the world, and has developed close relationships with members of Dr. Taub's staff. (For a complete, highly informative description of Dr. Taub's protocol at Columbia Presbyterian Cancer Center, please click here.

Even though his treatment and recovery "weren't a picnic," the part of the experience that most amazed Craig is the lesson he learned about human nature. "The people who helped me along the way were just unbelievable," he says. "Not just the people you'd expect, like family and friends, but people you don't know." Though he is a person who usually prefers to do things on his own and not rely on others, Craig soon learned to accept help when someone offered it. He realized how invaluable that help was to his progress down the line. Supporters donated frequent flyer miles for his trips to New York, and a group of friends put on a golf outing to raise money for his family's living expenses during travel.

Craig wasn't able to play golf that day, but he rode around in a cart thanking friends, family, and even a lot of people he didn't know who had come out to have some fun and support a good cause.

Much as he would like to, Craig knows he can't begin to pay back all those who helped him. Instead, he now devotes time to helping other mesothelioma patients. Dr. Taub's new mesothelioma patients call Craig to receive tips on treatment and living in New York. His continued positive outlook on the disease is an inspiration to others. "Every day, every month, every year that I'm alive is that much closer to the cure being found," Craig believes. "You have to be your own advocate. If I had just accepted what the doctors originally told me, I wouldn't be talking to others about it today."