After retiring in 1990, Truman Evitt was looking forward to traveling and spending time with his family and friends. In 1996, Truman went to his local doctor in Fort Worth, Texas complaining of flu-like symptoms and bloating. According to Truman, "My stomach was really, really large and I had shortness of breath, no energy and I felt rotten." His doctor told him the bloating was caused by fluid built up in his stomach linings. He was then referred to a gastroenterologist.
Soon after, Truman underwent a laparoscopy. The pathology report came back as peritoneal mesothelioma. His oncologist did not recommend surgery, chemotherapy or radiation, or any other treatment regimen. Mr. Evitt consulted with doctors in Fort Worth and Dallas, Texas. None of them could recommend any treatment. The future looked bleak. The only "palliative" remedy his doctors suggested was draining the fluid from his abdomen on an as-needed basis. They offered a prescription for pain, but Truman declined. "I never took aspirin, why would I need a pain medication?" It took approximately 1.5 years and two laparoscopic surgergies to determine a diagnosis. Meanwhile, the only relief for Truman was the draining of the fluid from his abdomen the first of which occurred on March 7, 1996 and the last on July 22, 1998.
After contacting this office, the Evitts were directed to contact Dr. John Costanzi in Austin, Texas in hopes of qualifying for the Onconase protocol. The Onconase trial is a blind study which compares Onconase versus Doxirubicin. Unfortunately, the Evitts were not guaranteed Truman would receive the Onconase and declined the treatment.
The Evitts then contacted Dr. Robert Taub at the Columbia University Medical School in New York City. Dr. Taub offered to attempt to excise the tumor, but the Evitts were concerned that Truman was not strong enough to survive the surgery and the follow up treatment. This did not deter the Evitts. They wrote a letter to Dr. Paul Sugarbaker in Washington D.C. as well as contacted Dr. Steven Hahn in Philadelphia, Pennsylvania regarding Photodynamic Therapy. Unfortunately, they did not hear back from Dr. Sugarbaker and were not comfortable with the success rate of peritoneal mesos using Photodynamic therapy.
The bad news did not stop Truman and Jean from forging ahead. According to Jean "It caused us to intensify our search." Some mesothelioma patients hear the grim prognosis and retreat. Not the Evitts. They kept the faith -- after all, in their mind, there just had to be a cure. Mesothelioma has been reported in the literature for over 40 years -- certainly there had to be some doctors out there in this great country who could help them keep the monster at bay. They kept reading, asking questions and researching, undaunted by the naysayers and do-nothings.
"We never lost hope." During this time, Truman was having 8 to 10 quarts of fluid drained from his stomach every 10 to 12 days. The running total of the amount of fluid drained from his abdomen to date is over 246 quarts! The draining of the fluid had become almost routine.
According to Truman, "Whenever I felt uncomfortable, I would go down to the clinic and get up on one of the available beds. The doctor would come in and disinfect a spot on my stomach, and then inject it with an antibiotic or painkiller or something. That's just a short injection. Then he would use a needle about four inches long that he sticks in there and connects that up to tubes and to a vacuum bottle and then turns the faucet and starts draining. When the bottle gets full, they just change bottles."
In 1998, Truman's "playing" weight of approximately 192 pounds decreased to a low of 147 pounds.
In the spring of 1998, through their oncologist in Fort Worth, the Evitts were referred to Dr. Roman Perez-Soler at the University of Texas/M.D. Anderson Medical Center in Houston, Texas. Dr. Perez-Soler then referred them to Dr. Claire Verschraegen. Truman and Jean were immediately drawn to Dr. Verschraegen, "She met us with a big smile and at that moment we new that help was here." Dr. Verschraegen spoke with them about an experimental treatment (Platar).
In April of 1998, Truman had his first treatment. After the second chemotherapy treatment, the fluid retention had almost stopped. After the third treatment, it completely stopped -- no more fluid!
Here is a medical abstract that describes the treatment protocol that Truman was fortunate enough to participate in. This was provided to us by Dr. Verschraegen, who is very enthusiastic about the treatment and eager to help more patients.
PHASE I STUDY OF AN INTRAPERITONEAL LIPOSOMAL CISPLATIN ANALOG (L-NDDP) FOR TREATMENT OF PERITONEAL CARCINOMATOSIS.
C. Verschraegen, P. Mansfield, B. Feig, M. Steger, Q. Ping Wu, D. MacLean, Z. Siddick, R. Perez-Soler, W. Hu, A. Kudelka, J. Kavanagh, A. Khokhar. The University of Texas, M. D. Anderson Cancer Center, Houston, Texas.
L-NDDP is a lipophilic derivative of cisplatin formulated in liposomes that was shown to have activity in mesothelioma by intrapleural administration. We are conducting a study of intraperitoneal infusion with escalating doses of L-NDDP every 28 days following a 3+3 design. Patients could be dose escalated once, if no toxicity occurred at the entry level. The first 2 courses were given under visual inspection with laparoscopy. If a benefit was observed, a subcutaneous port was placed in the peritoneal cavity for subsequent administration. Pharmacology was performed on the plasma and the ascites of some patients. Up to 6 courses were administered to 2 pts, 5 courses to 1 pt, 3 courses to 2 pts, 2 courses to 2 pts, and 1 course to 7 pts. Premedication consisted of a serotonin receptor blocker. Cohorts of 3 pts were treated at 200 and 300 mg/m2, and cohorts of 6 pts at 400, and 450 mg/m2. At this last level, dose-limiting side effects were observed, and consisted of posttherapeutic adhesions preventing retreatment in 3 pts. Hematologic toxicity was seen at > 400 mg/m2, and included grade 2 anemia (3 pts), grade 3 thrombocytopenia (1 pt), and grade 3 neutropenia (2pts). Grade >2 non-hematologic toxicity (all doses) consisted of nausea/vomiting (8 pts), fatigue (6 pts), abdominal pain (8 pts), back pain (3 pts), constipation (2 pts), and sensory neuropathy (2 pts). All pts with refractory ascites responded. Significant antitumor activity was also observed in 6/6 pts with mesothelioma. One additional cohort of pts will be treated at 350 mg/m2, to further evaluate the safety and efficacy of intraperitoneal administration of L-NDDP.
Truman completed 5 treatments. The treatments were discontinued due to loss of feeling in his feet and hands.
In addition to the chemotherapy treatments, Truman has been taking various herbal remedies and immune-builders as well as following a strict nutritional regime. He and Jean also walk at least one mile a day. The Evitts also firmly believe in the power of prayer. According to Jean, Truman's lovely wife: "Prayer is the center of our healing. I am convinced it is the reason Truman is still alive."
Truman has slowly gained back some of his weight. He currently weighs in at a strapping 190 pounds. He is regaining some of his strength and states that except for the numbness in his hands and feet he is feeling remarkably well. He is scheduled to return to Houston every three months for regular follow ups. After his last check up in May of 1999, Truman's doctors told him they were so pleased with his progress that upon his next visit in August, they would like to perform additional tests to see if the cancer had "abated."
Even with the encouraging results from M.D. Anderson, the Evitts still realize the graveness of the cancer. Truman still has trouble climbing stairs and tires easily. He has had to cut back on the time he normally would spend with his eight grandchildren and one great-grandchild. Asked to assess how his illness has affected his wife's life, Truman reflected: "The cancer has pretty much turned her [Jean's] life upside down. We went from being active and doing many things together to being inactive. I just can't do it anymore." Truman and Jean celebrated their 50th wedding anniversary in January.
Dr. Verschraegen has alerted us that she would be pleased to speak to any patients with peritoneal mesothelioma regarding their eligibility for the Phase I Platar protocol in Houston. You can reach Dr. Verschraegen at her office at 713-792-7959.
Dr. Verschraegen has also advised that a Phase II study of mesothelioma with pleural decortication, L-NDDP (Platar), and radiotherapy is currently open for pleural mesothelioma at M.D. Anderson Hospital in Houston, as well. Patients with pleural mesothelioma can call Dr. Shin at 713-792-6363.
*** POSTED JUNE 7, 1999 ***
Note: Intraperitoneal PLATAR suspended at MD Anderson, 9/7/99
We just received news that that the Platar trial at MD Anderson in Houston, Texas has been suspended due to toxicity. The trial in New York for pleural mesothelioma is continuuing. I have contacted Dr. Verschraegen at MDAnderson to confirm this report. More to follow.
RGW
** POSTED SEPTEMBER 7, 1999 **
An Update -- 2/5/01
Truman underwent sugergy to remove some tumors in October. Soon after the surgery, he developed an infection but recovered and eventually re-gained his strength. His weight is back up as well as his appetite. When we spoke to him, he stated he is walking around his block for exercise. He has a return appointment with his doctors on February 19.
An Update -- 8/10/01
We are happy to report that Truman and Jean are doing well, considering. They are moving to another area around Fort Worth, nearer to one of their children, and Truman currently isn't undergoing any treatments for his cancer.
Still, he is tired from time to time, and six months ago, he had two and three-quarter liters of fluid drained from his right side and two liters of fluid drained from his left side. He had been sleeping in a chair to alleviate the pain, but since he had the fluid drained, he has been relatively comfortable and visiting the doctor periodically for check-ups -- checking his back, his stomach, his breathing, and the occasional CAT scan or X-ray.
Although he still has numbness in his legs and hands and has trouble walking - the result of his Platar treatments at MD Anderson- his last X-ray about two months ago at the Arlington Cancer Center was clean, and since then, he has been spending time with Jean and family, enjoying books on tape (his Platar treatments diminished his eyesight, as well, making it impossible to read), and getting ready to move to his new home.
We will keep you posted on the progress of this long-time mesothelioma survivor.
Mr. Evitt passed away on September 25, 2001