Jack was diagnosed with stage III Multiple Myeloma (MM) in 1995 at the relatively young age of 45 with children only 16, 14, & 10 years old. The first time he met another myeloma patient was at a local support group meeting. He realized it was incredibly important for him to see someone living and breathing with MM. So now he is proud to help facilitate the San Francisco Bay Area Myeloma Support Group (www.sfbayareamyelomasupport.org).
In 1995 there were only 2 treatment paths for MM: Melphalan-Prednisone or VAD followed by an auto transplant. What a difference nearly 20 years have made, which is such good news for MM patients, our caregivers, families and friends. Each year at ASH Jack looks forward to hearing about clinical trials focusing on new drugs, treatment protocols, and quality of life issues. Jack has attended ASH in the past with the IMF and will be, once again, blogging to share his experience.
Today Jack is a strong proponent of patients participating in clinical trials so that tomorrow our children and grandchildren (he now has three!) will only know myeloma and other cancers as curable diseases.
Yelak was diagnosed with myeloma at the very young age of 26. He is a 16+ year survivor and is a co-leader of the North Texas Myeloma Support Group.Yelak is excited about the opportunity to attend ASH with the IMF again this year to hear the advances in research and latest clinical trial updates. He plans to share this information and hope with his local support group members and will also blog and tweet from ASH. He will share updates from previous clinical trials and his perspective on IMF educational programs during ASH.
Cynthia 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.Cynthia was diagnosed with multiple myeloma in July 2008 after suffering for two years with debilitating back pain, which was wrongly attributed to degenerative disc disease. 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.
This will be Cynthia’s fourth year attending ASH with the IMF and she is excited to learn about the progress that has been made in some of the monoclonal antibody trials, to learn more about minimal residual disease “MRD”, how it’s measured, and whether it is going to be a goal of all induction treatment in the future. Cynthia will be sharing all she learns at ASH through live coverage on Twitter.
Follow Cindy on Twitter at @MyelomaTeacher
Linda was diagnosed with multiple myeloma in April 2010 at the young age of 46. She and her husband, Jack, co-lead the Chattanooga Multiple Myeloma Networking group. Linda recently received treatment for her first relapse and is back in remission.Linda has always been interested in and followed the results of the annual ASH meetings via the IMF’s website. This year, however, she is very pleased to be able to attend ASH for the second time with the IMF and to hear the information firsthand. Linda will share her ASH experience by tweeting updates and photos from the conference. Linda will focus her coverage on maintenance therapy and monoclonal antibody treatments in development.
Gail is a myeloma survivor in near complete remission since 2008. She is a proud co-leader of the Southside Atlanta Myeloma Support Group. By profession, Gail is a certified Community Health Educator. She is passionate about translation of basic and clinical research to information patients, caregivers, and supporters can use. Gail is attending the American Society of Hematology (ASH) annual meeting for the first time. Gail’s coverage of ASH will include her perspective as a first-time attendee.
Teresa has been a nurse at Mayo Clinic Rochester in the bone marrow transplant (BMT) program and working with myeloma patients since 1991. Currently, she is working as a transplant coordinator. She has been a member of the IMF Nurse Leadership Board since 2006. Since 2007, she has been affiliated with the Multiple Myeloma Sharing Sessions in Rochester, MN and has been the acting meeting facilitator since 2010.Teresa has attended the ASH meeting for many years, and she has attended ASH for the last four years in association with the IMF as a nurse liaison. She is very excited to participate in the patient-nurse liaison program with the IMF: there is so much to learn and discuss as a group and it is an inspiring experience. During ASH, Teresa will focus her reporting on updates on transplant and maintenance therapy.
Jim Omel, MD, is a fulltime caregiver for his wife, who has multiple sclerosis. He was diagnosed with myeloma in 1997 and was treated with VAD (vincristine, doxorubicin, and dexamethasone) and radiation. At relapse in 2000, he had an autologous stem cell transplant, retired from active medical practice, and began a new role as a cancer research advocate. Relapse in 2006 was treated with Revlimid and again irradiated. Revlimid was continued as maintenance therapy. In late 2010, another rib recurrence was treated with local radiation, Velcade, and Revlimid. He currently is taking no treatment except for periodic Aredia infusions.Jim’s advocacy includes work with the NCI (peer review, Board of Scientific Advisors, Myeloma Steering Committee), FDA, Alliance Cooperative Group (Myeloma, Transplant and Leukemia Committees), Center for International Blood and Marrow Transplant Research (transplantation), Moffitt Cancer Center, Seattle (FHCRC), local hospital board and cancer events, and of course his Central Nebraska Myeloma Support Group.This year at ASH, Jim is interested in learning about and reporting on myeloma genomics, pathways, and measurement of minimal residual disease (MRD) through flow cytometry.
Cindy was diagnosed in 1995 with MGUS (monoclonal gammopathy of unknown significance), and by 1996, was told she had smoldering myeloma. Cindy continues to see her oncologist regularly for monitoring.Prior to her diagnosis, like most patients, Cindy had never heard of multiple myeloma. Thanks to the Internet, she found the IMF and attended one of the IMF Patient & Family Seminars. Cindy soon realized the impact of meeting other myeloma patients. As a result, she started the Kansas City Multiple Myeloma Support Group in 1996. Cindy says that with the help of the IMF, the group continues to grow and support myeloma patients in the Kansas City area.Cindy has attended ASH in the past with the IMF and is looking forward to hearing all the updates from the clinical trials and bringing that information back to her local community as well as blogging and tweeting to the myeloma community at large. Cindy will focus her blogging on MGUS and smoldering myeloma updates.
Tom Swick is chairman of the Orange County (CA) Multiple Myeloma Support Group. He was diagnosed with IgA-lambda type myeloma in 2007 at age 54, and feels very fortunate to have maintained a stable remission since initial treatment.Tom worked as a software engineer in the computer and aerospace industries, and lives in San Clemente, CA, with his wife Judy and one of three adult daughters. He is very excited to attend ASH for the first time, and promises to report on new drugs in the pipeline.
Michael Tuohy was diagnosed with multiple myeloma 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 56th Annual Meeting to hear the current status of the most interesting research in myeloma. Michael will focus his ASH coverage on research in relapsed and refractory myeloma.
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 11 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!
Jerry Walton, 69 years old, is a 33-year Navy veteran who retired from active duty in 1998 in Virginia Beach, VA. He then taught Math in a local public school until June 2007.Diagnosed with smoldering multiple myeloma in August, 2006, he attended an International Myeloma Foundation (IMF) Patient & Family Seminar in March of 2007. That valuable and motivating experience inspired him to start the Southeastern Virginia Multiple Myeloma Support Group (www.seva.myeloma.org) a few months later.Jerry is excited to be one of the myeloma support group leaders invited by the IMF to attend the annual American Society of Hematology (ASH) meeting this year. Looking forward to this year’s ASH meeting, he anticipates learning much more about the many new and emerging novel therapies, the effectiveness of various drug combinations, the role of stem cell transplants, the Black Swan Research Initiative and treatments for specific types of the disease based on genetic factors, and more.Jerry will focus his reporting on updates regarding smoldering multiple myeloma and stem cell transplants.