Presenting Emil Parente: Living With WM For 32 Years
Emil Parente is a WMer with a real past, and he is happy to share it with others, particularly those who are newly diagnosed. After all, Emil is special—he was diagnosed in 1980 at the relatively young age of 50 and is still doing very well after all these years. He wants others with WM to take heart and hope from his WM journey.
At the time of Emil’s diagnosis, he was working at a senior executive for Fluor Corporation, the world’s largest publicly-owned engineering/construction company, and was required to have an annual company physical. Blood tests indicated that he had a high erythrocyte sedimentation rate (ESR), and he was referred to a specialist to determine the cause. When Emil arrived at the specialist’s office, he discovered that the doctor’s specialty was oncology, and he began to realize that he might have a serious problem. After a bone marrow aspiration, the doctor provided a preliminary diagnosis of multiple myeloma, but another physician indicated that it was Waldenstrom’s “syndrome” instead (as it was referred to then).
At that time not much was known about WM. The doctor who confirmed Emil’s WM diagnosis suggested that Emil might want to see Dr. Jan Waldenström in Stockholm, Sweden, but he decided not to go—a decision that in hindsight Emil now regrets because he missed the opportunity to meet such an important physician in the history of WM.
Emil’s biggest concern about his cancer diagnosis was one that many cancer patients can identify with—he had an 8-year-old daughter and a 5-year-old son, and he was understandably worried about their futures. In 1980 no one could really answer his questions about life expectancy, so Emil made a conscious decision, as he says “not to obsess about his disease but rather to fight it, with as few chemotherapy treatments as possible, and to live life normally while doing so.” Emil still has a copy of the first article he read in 1988 about WM life expectancy, published by the University of California-San Francisco, which stated that “the median survival [of WM patients] is about 50 months.” Since Emil had already passed that mark by the time he read the article, he feels to this day that his decision has been the right one.
In 1982, Emil went to Dr. Stephen J. Forman, a hematologist at City of Hope, and has remained with Dr. Forman ever since. Dr. Forman’s philosophy has been to treat symptoms and not numbers; consequently, Emil was on watch and wait and did not begin treatment until 1985, when his IgM and serum viscosity reached the point of concern about possible ill effects from hyperviscosity syndrome. At that time, there were basically only three treatments for WM, chlorambucil (Leukeran), prednisone, and plasmapheresis (PP). Dr. Forman started Emil on chlorambucil.
Even with chlorambucil, Emil’s IgM production required regular PP treatments to keep it under control. Since chlorambucil proved to be ineffective, Emil has since used PP as his primary “line of defense” against WM and he believes that PP is somewhat under-utilized in the management of WM. In fact, Emil has had 189 PP treatments, or as he calls them, “oil changes,” since his diagnosis. He experienced a serious spike in his IgM in 1991 and began a series of five cladribine (2CdA) treatments. At that time, cladribine was in clinical trials for hairy cell leukemia patients, and Emil believes that he may have been one of the first WMers to receive it. In any case it brought his disease under control, and with continued PP he remained stable until 2002.
Another spike in IgM production led Emil to try solo Rituxan therapy in 2002, but he didn’t receive any measurable benefit from it, so he began combination Cytoxan/fludarabine/Rituxan treatment in 2003. He was originally scheduled for six cycles, but after four cycles the antibiotic he was taking to prevent infections during treatment led to overgrowth of a dangerous intestinal bacterium called Clostridium difficile, the effects of which landed him in the hospital for a short period. Other than that, he has not been hospitalized for WM-related problems. Following that experience, Emil resumed PP as his only treatment.
Because of recent periodic sinus and ear infections (with some hearing loss), Emil has added regular intravenous IgG as part of his regimen. This spring, he was again experiencing higher IgM levels and began contemplating a decision to pursue another treatment. At the advice of Dr. Forman, Emil chose six cycles of bendamustine, administered for two consecutive days every four weeks. Rituxan will be added as his IgM decreases in order to avoid a potentially dangerous IgM flare. While Emil is experiencing some fatigue and gastrointestinal upset, he is encouraged that at the end of his second treatment cycle, his IgM has gone from 5,000 to 4,000. He is hoping that this therapy will greatly reduce his need for periodic plasmapheresis.
Over the years, Emil has seen a big improvement in treatments for WM, as there are now many more options available than there were in the 1980s. The process of plasmapheresis itself has also changed. When Emil first began PP, it was a batch process vs. the continuous process utilized today. Then a three-liter exchange required 4-4 ½ hours. Now Emil has a five-liter exchange requiring about 2 ½-3 hours. Emil has been able to use his veins (instead of a port) for all his PP treatments, although he admits that finding a good nurse for the “stick” is very important to the process.
Emil “discovered” Arnie Smokler and the IWMF in the mid 1990s and became an IWMF Support Group leader for Orange County, California, in 2006. His first Support Group meeting was at his house with about 15-16 people in attendance. Today, his group uses the auditorium at a local hospital and has about 135-140 members. While Emil has now turned over the job of leader to IWMF Trustee Marty Glassman, he still remains available to talk to newly diagnosed WM patients. His major advice to these patients is to go to a comprehensive cancer center, at least for backup opinions, and not to rely solely on a local oncologist who may not have much experience with WM. He also advises that “knowledge is power” and urges new patients to become informed about their disease and to be an active participant with their doctors in the decision making process. To that end, he encourages them to join the IWMF.
Emil has enjoyed life with his wife, Phyllis, his children, Vicky and Stephen, and now his three grandchildren, Kira, Gianna, and Owen. His philosophy to live as normally as possible has served him well. At age 82, Emil has traveled the world, he has reached a major milestone to see his children grown and with families of their own, and he remains committed to his goal of helping other WMers understand that they too have the potential to achieve and maintain a good quality of life.