I’ve always chosen to live my life as if I didn’t have cancer. I just face forward and try to do everything I want to do, working around symptoms and treatment side effects.
—Michael S. Katz, MBA
Michael S. Katz, MBA, has lived longer than any of his doctors thought he would. A two-time cancer survivor, Mr. Katz was diagnosed, first with multiple myeloma in 1990 and then with colorectal cancer in 2008, and has spent the past 2 decades tirelessly advocating for patients with cancer.
The 61-year-old native New Yorker was just 37 when he was diagnosed with multiple myeloma following the discovery of a large plasmacytoma in his ilium, which was causing a limp and weakness in his right leg. His doctor advised a resection of the iliac crest and an allograft, but offered no other details of the incurable cancer, which then carried a dismal survival of 3 to 5 years.
“When I was first diagnosed, I wasn’t given the full story of what myeloma was or its prognosis. The focus was on the orthopedic crisis,” said Mr. Katz. And with the Internet still in its infancy, there were no online patient support groups or myeloma advocacy organizations to turn to for information.
When the disease appeared to be progressing 1½ years later, he was offered an allogeneic bone marrow transplant, which is associated with an overall mortality rate between 25% and 50%.1 “That statistic got my attention,” said Mr. Katz, who then crisscrossed the country meeting with specialists to learn more about myeloma and explore his treatment options, which were limited to chemotherapy, bone marrow transplantation, and radiation therapy.
“It was a very scary and lonely time,” said Mr. Katz. It was that experience that would become the catalyst for Mr. Katz’ advocacy on behalf of myeloma survivors.
Living With Chronic Cancer
Like many patients with myeloma, Mr. Katz has seen his cancer seesaw between stable and active disease over the years. He credits the advances in myeloma treatment, including the immunomodulatory agents thalidomide (Thalomid), lenalidomide (Revlimid), and pomalidomide (Pomalyst) and the proteasome inhibitors bortezomib (Velcade) and carfilzomib (Kyprolis)—which have transformed the management of myeloma—with keeping him alive for 24 years. During that time, Mr. Katz rose in his career as a management consultant, raised three sons with his wife, Susie, and saw the birth of seven grandchildren.
These were also years that led Mr. Katz to advocacy, a calling he attributes to his desire to pay forward the help he received early in his diagnosis from the late Francesca M. Thompson, MD, a renowned orthopedic surgeon, who was diagnosed with multiple myeloma in 1987 and was among the first patients with the disease to undergo an autologous bone marrow transplant. Dr. Thompson later chronicled her struggle with myeloma in her book, Going for the Cure.2 Dr. Thompson provided Mr. Katz with basic information on myeloma that helped him reach a decision on how to treat serious bone lesions.
“The impact of talking with Dr. Thompson was so powerful and I felt so grateful, it got me thinking that I could do the same for others,” said Mr. Katz.
Making a Difference
After reaching out to Susie Novis, a cofounder and President of the International Myeloma Foundation (IMF), to see how he could help the organization, Mr. Katz offered to set up the IMF’s patient database and began speaking at the organization’s Patient & Family Seminars, which led to one-on-one patient counseling. He also helped develop the IMF’s Myeloma Manager, which allows patients to track their laboratory results. He is now an Executive Board Member of the IMF.
It was his involvement in the IMF that led to his work as a patient advocate for the Eastern Cooperative Oncology Group (ECOG), where he was elected Chair of its Patient Representative Committee and was later made Chair of the Coalition of Cancer Cooperative Groups’ Patient Advisory Board. Other influential positions followed, including an appointment as Chair of the Director’s Consumer Liaison Group at the National Cancer Institute and selection on the Drug Development Patient Consultant Program at the U.S. Food and Drug Administration.
But it was Mr. Katz’ involvement with ECOG’s E4A03 clinical trial that changed his life—and the lives of virtually all myeloma survivors.3 E4A03 was a randomized phase III trial that compared lenalidomide and standard-dose dexamethasone (40 mg for 4 consecutive days with 4 days rest for 28 days) and lenalidomide and low-dose dexamethasone (40 mg once every 7 days for 28 days) in newly diagnosed patients with multiple myeloma.
Based on his experience with lower-dose dexamethasone, which had been successful in keeping his myeloma from progressing, and the similar feedback he was getting from patients in the IMF’s support groups and on the listservs of the Association of Cancer Online Resources he was overseeing, Mr. Katz convinced the Chair of the ECOG Myeloma Committee to launch a comparison of the low- and standard-dose dexamethasone and lenalidomide regimens.
Because a clear survival advantage was found in the lower-dose dexamethasone arm (96% of patients in the low-dose arm were alive at 1 year vs 87% for those on the standard dose), the trial was halted early. Although the clinical trial tested the lower-dose regimen in the upfront setting, the study’s results led to a change in the standard of care for the use of dexamethasone in all disease stages and in virtually all dexamethasone-containing combination drug regimens.
“E4A03 was a huge win and significantly reduced early deaths and steroid toxicities [in patients with myeloma],” said Mr. Katz.
Mr. Katz was also instrumental in raising awareness of bisphosphonate-related osteonecrosis of the jaw, a rare but serious condition that has been linked to the use of pamidronate (Aredia) and zolendronic acid. In 2004, after the IMF received numerous reports from myeloma patients of osteonecrosis of the jaw and tooth loss after taking bisphosphonates, the organization conducted a Web-based survey to assess the risk factors involved.
According to the published results,4 over 1,200 people responded to the survey—904 with myeloma and 299 with breast cancer. The findings showed that 152 of the patients had either osteonecrosis of the jaw or suspicious findings. Of the patients with myeloma, 71% had received zoledronic acid and 29% had received only pamidronate.
In 2007, in response to concern over bisphosphonate-related side effects, ASCO updated its clinical practice guideline on bisphosphonate treatment for multiple myeloma5 to include a discussion of osteonecrosis of the jaw, recommending that most patients receive bisphosphonate treatment for no longer than 2 years.
Rewarding Patient Advocacy
During the 2014 ASCO Annual Meeting, Mr. Katz was recognized for his advocacy with ASCO’s Partners in Progress Award, which honors individuals who have made valuable contributions in cancer awareness and public advocacy.
“The news of the award came out of the blue and I was shocked,” said Mr. Katz. “I have ‘broken a lot of china’ in my public policy work, being very vocal in public forums about the lack of discipline evident in some of the regulation and management of research and clinical trials, so I wasn’t expecting this kind of recognition. It means a lot to me to know that people appreciate what I do.”
In addition to his advocacy work, Mr. Katz is also a lay leader of his synagogue and does volunteer work for Lifeline for the Old, an organization in Israel that provides employment and social services for the elderly.
Facing the Future
Controlling his myeloma has become more challenging in recent years, and Mr. Katz is now dependent on a mobility scooter to get around. Nevertheless, he remains confident the continued advancements in myeloma treatment will keep his cancer manageable for years to come.
Although now retired from his consulting career, Mr. Katz shows no signs of slowing down on his cancer advocacy work. That work now includes serving as a reviewer of federal- and state-funded research grant programs supporting a spectrum of cancers and developing a methodology for measuring the accrual performance of underrepresented minorities in publicly funded clinical trials.
“I’ve always chosen to live my life as if I didn’t have cancer. I just face forward and try to do everything I want to do, working around symptoms and treatment side effects,” said Mr. Katz. “I’ve been a patient for so long, I’m much better now at managing those things.” ■
Disclosure: Dr. Katz reported no potential conflicts of interest.
1. Bensinger WI: Is there still a role for allogeneic stem-cell transplantation in multiple myeloma? Best Pract Res Clin Haematol December 20:783-795, 2007.
2. Thompson FM: Going for the Cure. New York, St. Martins Press, 1989.
3. Rajkumar SV, Jacobus S, Callender N, et al: Phase III trial of lenalidomide plus high-dose dexamethasone versus lenalidomide plus low-dose dexamethasone in newly diagnosed myeloma (E4A03): A trial coordinated by the Eastern Cooperative Oncology Group. J Clin Oncol 25(18S):Abstract LBA8025, 2007.
4. Durie B, Katz M, Crowley J: Osteonecrosis of the jaw and bisphosphonates. N Engl J Med 353:99-102, 2005.
5. Kyle RA, Yee GC, Somerfield MR, et al: American Society of Clinical Oncology 2007 clinical practice guideline update on the role of bisphosphonates in multiple myeloma. J Clin Oncol 25:2464-2472, 2007.