After 18 Years of Living With Multiple Myeloma, Dr Jim Omel Is An Expert

When Grand Island cancer doctor Dr. M. Sitki Copur read the July 10 edition of the ASCO Post, the trade publication for the American Society of Clinical Oncology, there was a familiar face on the cover — his neighbor, retired Grand Island family practitioner Dr. Jim Omel. “Dr. Omel is not an oncologist, but he is a myeloma expert,” Copur said. “He is in the loop. He knows everybody, not only in the United States, but in the world, including the International Myeloma Foundation; he knows every single person who is dealing with myeloma as an expert.” Omel smiled at the label of “expert” on myeloma — a blood cancer that nests in and degrades bone. He smiled at the label primarily because he felt blessed to have become an expert — having lived 18 years with the disease after being told in 1997 that he would live but three. “It’s by the grace of God,” Omel said of his survival. Omel missed his own diagnosis for the better part of a year. As a busy doctor at Family Practice of Grand Island, Omel attributed growing back pain to a lack of proper exercise and improper lifting of his wife, Pat, whom he cares for due to her multiple sclerosis. But the night before being on call for the 1997 Thanksgiving holiday, Omel was doing sit-ups in an effort to strengthen up. He felt his back break. “It literally popped,” he said. “The bone was eroded, it was like an eggshell, and pretty soon collapsed.” He managed to maneuver around with his wife’s scooter and headed out for rounds that holiday, where a fellow doctor saw him and advised Omel he needed to step back and be a patient, instead of the doctor. That’s when an X-ray revealed the break in his back — miraculously not damaging Omel’s spinal cord. A simple blood test that followed revealed the cause — multiple myeloma, or myeloma for short. “I was devastated,” Omel said. “Multiple myeloma was, and still is, an incurable cancer.” Omel gathered his family around — two daughters, two sons and his high-school sweetheart bride from Giltner — and shared the grim diagnosis. At that time, myeloma killed 97 percent of its victims in fewer years than can be counted on one hand. He prepared to die. He sold his coin collection, his pharmacy bottle collection and other investments. “However, a funny thing happened on my way to dying … I lived,” Omel later wrote in an article for CR, a magazine for the American Association for Cancer Research. He underwent radiation, went back to work and started to lead a local myeloma support group that still meets from 10 a.m. to noon on the third Wednesday of each month at Evangelical Free Church in Grand Island. “It’s a support group that isn’t about whining … it’s informational,” Omel said. “We explain the disease. We explain new treatments.” And he does so in an caring and personal way — being a myeloma patient himself. “He is a very intelligent, kind and compassionate man,” said myeloma support group member Illene Drake of Axtell. Omel’s 18-year survival with the disease creates hope, Drake said. The information he shares is “encouraging.” “He provides pamphlets and brochures and invites in speakers,” such as representatives on new cancer drugs, Drake said. Omel provides all that — and knows every group member and their spouse by name. “You come in and he says ‘Welcome Illene. Welcome Rollie,’” Drake said. “He’s uplifting. He makes you feel good.” She said he never imposes his direction and is consistent on urging patients to work with their own oncologist, but he helps patients understand their treatment, conditions to watch for and provides reassurance. That work showed Omel how valuable his physician background was in researching and understanding his disease — and how much assistance he could provide to others in his shoes who have been diagnosed with myeloma. So after a 2010 relapse that lead to a stem cell transplant and his retirement at age 53, his medical career took a new turn. “What I’ve done in my retirement, is to use my medical knowledge to help cancer patients,” Omel said. Even through additional relapses in 2006 and 2010 and his own radiation and chemotherapy treatments, Omel’s voracious reading and knowledge, attendance at national conferences to meet the leaders in the field, and time and willingness to serve myeloma patients has launched him into some key positions. At first, he declined an invitation to join the National Cancer Institute’s patient advisory board for a four-year term, believing he wouldn’t be around long enough to fill the term. He thankfully rethought that position. Omel now works as a volunteer with the National Cancer Institute in Bethesda, Maryland, which oversees and helps design all clinical trials. He also works with the U.S. Food and Drug Administration as one of 160 patient representatives nationwide, three of which have myeloma. Those patient representatives represent various diseases and are called upon to serve on the FDA advisory panel to review the research behind new drugs being considered for approval. “One of my most proudest times was sitting on the panel to approve carfilzomib, which is a very good anti-myeloma drug,” Omel said. It is a proteasome inhibitor which makes it hard for a cancer cell to get rid of its waste, similar to another anti-myeloma drug called Velcade. “There will be three new drugs that come to the FDA in late 2015 or early 2016 and I hope to be on one, two or all three advisory panels,” he said. Such medications are key to the progress in treating myeloma patients, he said. Six new drugs have been developed through trials since his own diagnosis. But too few patients are part of trials, Omel said. Only 3 percent of adult cancer patients are part of trials. The remaining 97 percent are not — for various reasons including, the patients may not hear about the trials, their doctors may not know about them or the patients may be too afraid to try a trial. “In clinical trials, you always get the best treatment or the best treatment, plus a new drug — that’s the way they work,” Omel said. “Patients shouldn’t be worried. They are not a guinea pig." But without trials, nothing advances, he said. “Clinical trials are the backbone of new therapy for cancer,” Omel said. “If we don’t have cancer trials, cancer therapy would never progress. It would always be the same.” That’s why Omel is now working hard to educate doctors, patients and the general public about a new way to find out about trials and the latest treatment practices — and outcomes — on a variety of cancers. It’s called CancerLinQ — an informational database by ASCO that doctors can access in their offices to find patients with symptoms similar to their own patients and what remedies are working best. “CancerLinQ is for and about better care for patients with cancer,” Omel wrote in the July 10 edition of ASCO. “Currently the vast bulk of the clinical data contained in electronic health records is known only to the patient, the patient’s physician and hospital point of care, and the patient’s family. “By making these data accessible to clinicians and researchers everywhere, CancerLinQ offers the promise of learning about the benefits and harms of specific treatment, improving quality of care, and quickening the development of new therapies,” Omel wrote. A proof-of-concept prototype of CancerLinQ was revealed in 2013 and was presented to doctors and patients at the ASCO national meeting just last month. “It’s in the development process,” Omel said. “CancerLinQ is being opened to 15 different oncology practices across the country with the hope of enrolling 500,000 patients … another 100, or more, practices are waiting in line to be approved to be associated with CancerLinQ.” One of those 15 practices selected for the CancerLinQ pilot is the Oncology Department at CHI Health St. Francis, which makes Copur ecstatic. “This project is very, very important,” Copur said. “Medicine has been lagging behind … in using the internet and data. “One of the problems is HIPPA, which is a huge wall,” Copur said. CancerLinQ can begin to break down that wall by sharing patient data so doctors can access the latest information on what Copur calls the “ever-evolving” world of oncology. “The clinical trials are the real treatments that oncology patients benefit from,” Copur said. “If you look under the guidelines, the best oncology treatment is clinical trials. “Dr. Omel is part of it, and our cancer program will be part of the pilot,” Copur said. “He is a very good colleague and friend and a great partner for our patients — for our cancer program.” Dr. Richard Fruehling, Omel’s former partner at Family Practice of Grand Island, said Omel has always been “an excellent physician and a very good person.” “His efforts to create the myeloma support group and to be involved on a national and international level with myeloma research has been quite spectacular,” Fruehling said. They were so spectacular Omel was personally invited by National Cancer Institute Director John Niederhuber to join his board of scientific advisers for a five-year term. Omel accepted. He also has continued to serve myeloma patients directly, not only at the Grand Island support group, but nationally as a patient representative for the Myeloma Foundation. He also serves as a counselor for the Leukemia and Lymphoma Society to explain the disease to new myeloma patients nationwide who are seeking additional information and guidance. Just in the last month, Omel has talked over the phone with five new patients in counseling calls that can last up to two hours. Some patients need help dealing with the shock of having an incurable disease. Others need help forming questions for their own doctors. Some want to know more about environmental factors that have been linked to myeloma or about the high proteins found in a simple blood test that can serve as an indicator. “It’s a good feeling to help people,” Omel said. Omel and Pat have now been married 48 years. Their family of four children has grown to include 14 grandchildren and five great-grandchildren. Most of the grandchildren and all of the great-grandchildren came along after Omel’s diagnosis and what he thought would be his funeral. “He’s using his time, talent and knowledge to help other people, and doing a super job,” Copur said. “I’m not surprised at all at what he has accomplished.” “He has turned a negative into a huge positive,” Copur said.