AS TOLD TO SUE HERMS in 2012 and UPDATE PROVIDED to ELENA MALUNIS in SEPTEMBER, 2018
First published in The IWMF Torch magazine in October 2012, pages 11, 32.
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 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 as 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 was already well 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, he used PP as his primary “line of defense” against WM and to this day he believes that PP may be somewhat under-utilized in the management of WM. In fact, over the course of 26 years, Emil has had 190 PP treatments (he calls them “oil changes”) or one every 7 weeks…which he considered “inconvenient but doable”.
In 1991, Emil experienced a serious spike in his IgM and began a series of five cladribine (2CdA) treatments. At that time, cladribine was in clinical trial for hairy cell leukemia, and Emil believes that he may have been one of the first WMers to receive it. From this treatment, Emil enjoyed a 10-year benefit. Prior to this treatment he was receiving PP every three to five weeks, after cladribine he only needed PP every 3 months.
In 2002, another spike in IgM production led Emil to try solo Rituxan therapy, but he didn’t receive any measurable benefit from it, so in 2003 he began combination Cytoxan/fludarabine/Rituxan treatment. He was originally scheduled for six cycles, but he had to stop after four cycles since 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 never been hospitalized for WM-related problems. Following that experience, Emil resumed PP as his only treatment.
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 he 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 a five-liter exchange requires only 2 ½-3 hours. Emil used 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. While Emil has not been treated with Ibrutinib, his opinion is that its introduction may have obsoleted the PP process as a basic approach for the treatment of WM.
In June, 2012, Emil 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 was added as his IgM decreased in order to avoid a potentially dangerous IgM flare. After 4 cycles of Bendamustine and Rituxan his absolute neutrophils count dropped below 1.5 and treatment was stopped. However, the Bendamustine-Rituxan combination proved a “miracle” drug for Emil. His IGM was completely stabilized and he has not needed any further PP or other WM treatments since then.
Emil “discovered” Arnie Smokler and the IWMF in the mid-1990s and, in 2006 he became an IWMF Support Group leader for Orange County, California. His first Support Group meeting was held at his house with about 15-16 people in attendance. Today, this group, over 100 strong, is still active under the leadership of Marla Chao. And, Emil remains available to talk to newly diagnosed WM patients. His major advice to the newly diagnosed is to go to a comprehensive cancer center, at least for a second opinion, 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.
In September 2016, Emil was diagnosed with Myelodysplastic Syndrome (MDS)…a bone marrow failure disorder. And, since 2017 he has been treated weekly with Procrit which increases his hemoglobin. While MDS has impacted his lifestyle, he continues to do many of the things he enjoys like playing some golf, walking, reading, following the stock market…and most importantly, spending time with his family.
Emil has enjoyed life with his wife, Phyllis, his children, Vicky and Stephen, and now his four grandchildren, Kira, Gianna, Owen and Ethan. His philosophy to live as normally as possible has served him well. At 88 years of age, 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.
Laguna Niguel, California