In 1995, Jack Aiello was diagnosed with stage III multiple myeloma (MM). He was 45 years old, and his children were only 10, 14, and 16 years old. After meeting another myeloma patient at a local support group meeting, he realized the importance of connecting with other human beings who are living and breathing with the illness. As a result, he now facilitates the San Francisco Bay Area Myeloma Support Group (www.sfbayareamyelomasupport.org).
At the time of his diagnosis, only two treatment paths for MM existed. What a difference nearly 20 years have made! Each year at ASH, Jack looks forward to hearing about clinical trials focusing on new drugs, treatment protocols, and quality of life issues.
Today, Jack is a proponent of patients participating in clinical trials. He hopes that our children and grandchildren (he now has three!) will only know myeloma and other cancers as curable diseases.
Follow Jack on Twitter: @JackMAiello
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Diagnosed at a young age of 25 with stage III multiple myeloma, Yelak Biru is a patient turned myeloma research advocate. Working with a team of medical practitioners and educating himself through active support group leadership, information resources, advocacy sites, social media, and the IMF, Yelak has successfully integrated myeloma to his life for almost two decades.
From the time he was told he had, give or take, three years to live, Yelak has balanced the realization that life is both uncertain and finite with an attitude of hope. Evolving diagnoses fear to hope, and sharing that hope is his personal motivation. It is also the motto of the North Texas Myeloma Support group, one of the oldest support groups in North America that he leads.
Yelak has attended a half-dozen ASH conferences, myeloma satellite symposiums, IMWG working breakfasts, debates, and regional and community myeloma workshop. He was a featured presenter at the 2015 European Hematology Associate satellite symposium on Relapsed and Refractory Myeloma.
Yelik also participates in the Global Myeloma Alliance network and facilitates the SmartPatients.com myeloma group. He is passionate about improving access to life-saving cancer drugs globally and advancing the innovation pipeline through research and patient participation.
Yelak has recently joined the International Myeloma Foundation Board.
Cynthia Chmielewski is proud to be a “Jersey Girl.” She was born and raised in the Trenton area and attended Rutgers University, where she earned degrees in Psychology and Elementary/Special Education.
In July 2008, after suffering for two years with debilitating back pain that was wrongly attributed to degenerative disc disease, Cynthia was diagnosed with multiple myeloma. Cynthia has achieved a very good partial remission using novel therapies, and her disease is stable. She continues treatment with a maintenance therapy protocol and is enjoying an excellent quality of life.
As it is her fourth year attending ASH with the IMF, Cindy is really excited to learn about the progress that has been made in some of the monoclonal antibody trials, and to learn about Minimal Residual Disease (MRD)—how it’s measured and whether it will become the goal of all induction treatment.
She is an active educator on social media. With over 3,500 followers on Twitter, Cindy facilitates doctor-patient connections online on a daily basis and at a breakneck speed!
Follow Cindy on Twitter: @MyelomaTeacher
At the young age of 46, Linda Huguelet was diagnosed with multiple myeloma. She underwent an autologous stem cell transplant in 2010 and enjoyed almost four years in remission; however, experienced a relapse in 2014. Then, she repeated her induction therapy of Revlimid®/VELCADE®/dex and returned to a complete remission. Today, she continues maintenance treatment with VELCADE®. She and her husband, Jack, co-lead the Chattanooga Multiple Myeloma Networking group.
This year marks Linda’s third time attending ASH with the IMF. She is excited to hear the latest developments first-hand. As she blogs and tweets from the conference, her focus will be on maintenance therapy and the emerging monoclonal antibody treatments.
In August 2006, Jim Barth was diagnosed with stage 1 or stage 2 multiple myeloma (depending on the staging system at the time). At the time, he urged his doctor to move forward with treatment that did not interrupt his work. For a little over nine years, Jim has lived without treatment with the exception of Zometa. His oncologist continually monitors his disease.
Jim follows a diet consisting of red wine, dark chocolate, pomegranate concentrate, and 95% reduction in red meat from previous to his diagnosis. (Not necessarily an IMF-endorsed diet, but certainly something Jim enjoys!) And, he gladly continues to work as a full-time middle school math teacher. No stranger to a heavy workload, Jim also facilitates the Tampa Bay Multiple Myeloma Support Group.
In August 2006, Nick Menedis was diagnosed with multiple myeloma and has been the Columbus Area Myeloma Support Group Leader for nearly six years. He credits his wife, Sandy, with being his caregiver and major support partner for facilitating the group. At 67 years old, Nick is an active golfer and coaches the First Tee golf group of Central Ohio. In addition, he coaches swimming and bowling Special Olympics’ teams.
For his myeloma treatment regime, Nick explains, “I have always been on Revlimid® and dexamethasone. I started with 25 mg Revlimid® and 40 mg dex (pulse). In 2011, I moved to 15 mg, and my dex was stepped down to 20 mg, and then 12 mg. From 2012 to 2014, I was off of dex completey; however, it was reintroduced to 4 mg on Mondays during my 21-day treatment period.”
Nick says he loves what he does. “I owe so much to the IMF for guiding me through my myeloma adventure from the beginning. I can’t wait to get to ASH!”
Teresa S. Miceli, BSN OCN is a registered nurse at Mayo Clinic in Rochester, Minnesota. For the past 24 years, she has been working in the field of blood and bone marrow transplant. With the International Myeloma Foundation (IMF), she has been an active member of the Nurse Leadership Board for over a decade. In addition, she facilitates the Multiple Myeloma Sharing Sessions in Rochester, Minnesota, a support group for myeloma survivors and caregivers. Teresa also travels nationally, providing patient and nursing educational presentations. This year, she returns to the American Society of Hematology Annual Meeting with the IMF as a support group leader and nurse liaison.
Dr. Jim Omel was diagnosed with multiple myeloma in 1997. As initial treatment, he received vincristine and dexamethasone (VAD) and spine radiation. At relapse in 2000, he had an autologous stem cell transplant, retired from active medical practice, and began a new role as cancer research patient advocate. His relapse in 2006 was treated with Revlimid®, irradiation, and maintenance therapy with more Revlimid®. During this relapse, he also experienced 14 months of exposed mandible (ONJ). In late 2010, another rib recurrence was treated with local radiation, VELCADE®, and Revlimid®. Currently, he is not undergoing any treatment except for periodic Aredia® infusions.
Dr. Omel is a member of the National Cancer Institute’s Myeloma Steering Committee, a member of the ASCO CancerLinQ Patient Advocate Committee, a myeloma patient representative for the Food and Drug Administration, a member of the Patient Advocate Committee and Transplantation Committees of the Alliance Cooperative Group, and the Co-Chair of the Center for Blood and Bone Marrow Transplant Research Consume Advocacy Committee. For several years, he has been a member of his local hospital cancer committee and has led the Central Nebraska Myeloma Support Group monthly meetings since 1999.
In October 1997, Carlene Pratt was diagnosed with multiple myeloma; and at that time, the cancer affected over 90% of her body. After one year of aggressive treatments, Carlene was given a stem cell transplant in October 1998 at the City of Hope.
Carlene has been living with multiple myeloma for nineteen years. She has undergone several chemotherapy regimens, including Thalidomide/Dexamethasone, Revlimid®/Dexamethasone and VELCADE® Subq (last treatment, May 2012). She is not presently on any chemotherapy regimens and is not in remission. Carlene explains, “The medication I currently take controls the neuropathy sustained from the chemo drugs.”
Carlene has been married to her husband of 31 years, Edward John Pratt III, and they have two sons: Edward, 27 and Christopher, 20. Mrs. Pratt celebrated a very special event two-months ago when she became a grandmother to a beautiful baby girl, Olivia.
After being a co-leader of the Inland Valley Multiple Myeloma Support Group for ten years, Carlene established the Upland California Myeloma Support Group in 2013.
She is excited about ASH 2015—in particular, she is “most interested in information regarding myeloma patients’ response, remission, and survival.”
In April 2007, Hugh Schaffer was diagnosed with multiple myeloma. His treatment history has consisted primarily of thalidomide and dexamethasone frontline therapy. In November 2007, he received his first stem cell transplant, and a second stem cell transplant in February 2008. Today, he is not undergoing any maintenance therapy.
Hugh has enjoyed a wonderful career in public education as a Teacher, Librarian, and District Media Coordinator. As a hobby, he is a musician: he sings, plays guitar and cello, and enjoys storytelling. Today, he serves as the co-facilitator of the Greater Cincinnati Area Myeloma Support Group and has since 2012.
Hugh has been married to his wife, Marie, for 46 years. He commends her as “the consummate caregiver. Her attention to details pays huge dividends with my care. I am very blessed.” The two make family visits a “high priority,” even more so since Hugh’s diagnosis. They love to visit their children in Florida, Michigan, and Minnesota, as well as getting to spend time with their six grandchildren!
Tom Swick is Chairman and Leader of the Orange County California Myeloma Support Group. In 2007, he was diagnosed with IgA-lambda type myeloma at the age of 54. He “feels very fortunate to have maintained a stable remission since initial treatment.” After many years on Revlimid®/dexamethasone, Tom switched to lower-dose Revlimid®, along with Medrol® and Biaxin® this year.
Tom worked as a software engineer in the computer and aerospace industries, and lives in San Clemente, California, with his wife Judy and one of three adult daughters.
He is very excited to attend ASH again, and is interested in immunotherapy and new drugs in the pipeline.
Michael Tuohy is a fifteen-year multiple myeloma survivor, having been diagnosed in 2000 at the age of 36. He and his wife, Robin, started the first myeloma support group in Connecticut in the spring of 2001 with the help of the IMF.
Michael has attended ASH with the IMF in the past is looking forward to this year’s 57th Annual Meeting to hear the current status of the most interesting research in myeloma and to bring back information and hope to his local community. In particular, Michael’s focus will be in the relapsed and refractory setting and learning more about the benefit of maintenance/continuous therapy.
Robin Tuohy is caregiver to her husband, Michael, who was diagnosed with multiple myeloma in 2000 at the age of 36. Robin is also the Senior Director of Support Groups for the International Myeloma Foundation. Robin will be leading a group of 15 myeloma patients and support group leaders through the various programs at ASH. Each day will consist of listening to oral presentations, viewing posters in the vast Exhibition Hall, attending educational, myeloma specific programs, and much more. During ASH, Robin will be providing updates on all of the exciting activities the support group leaders participate in. Robin hopes the support group leaders’ blog posts, videos, tweets, and live coverage from all events will spread hope and excitement for our futures! Knowledge is Power!