Jack Aiello was diagnosed with stage III multiple myeloma (MM) in 1995 at the relatively young age of 45 with children only 16, 14, and 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, the only two treatments for MM were melphalan and prednisone (MP) or VAD, or V = vincristine (Oncovin). A = Adriamycin (doxorubicin), followed by an autologous stem cell transplant.
What a difference nearly 22 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 four!) will only know myeloma and other cancers as curable diseases.
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 support group leadership, information resources, advocacy sites, social media, and the IMF, Yelak has successfully integrated myeloma to his life for over 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. His motto is 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 believes through research advocacy myeloma patients will be able to better balance quality of life with treatment outcome while helping accelerate both translational and basic myeloma research.
Yelak understands the need and is passionate about improving access to life-saving cancer drugs globally, advancing the innovation pipeline through research, and increasing patient participation. He is a member of the IMF board of directors, the Global Myeloma Action Network (GMAN), a patient advisor for pharmaceutical companies, a liaison for the Smart Patients myeloma community and a speaker at Patient & Family seminars, and a new member of the Eastern Cooperative Oncology Group (ECOG) patient advocacy team.
Nancy and her husband, Mike, joined the local support group in Atlanta in 1998, after his Myeloma diagnosis that year. At that time, there were few options and the prognosis was bleak, but the group offered information and encouragement in understanding this disease. Nancy ended up leading the group in early 2007 when the original leader passed away. Mike had seven years of good quality remission after his stem cell transplant in 2001. The new drugs given at relapse added years, but he passed from Myeloma in January 2011.
Nancy continued with the support group to share all that she had learned over the years as a Myeloma caregiver. In late 2012, the regional director retired and Nancy stepped into that role and now has over 30 support groups that she visits annually and continues to lead the Atlanta group. Nancy is passionate about helping patients and caregivers to stay up-to-date on the latest Myeloma treatments. She also emphasizes quality of life issues for both patients and caregivers.
Nancy is excited to be attending ASH this year in Atlanta. She will be monitoring the reports about monoclonal antibodies. Her focus on all reports will be the level of side effects, which have a direct impact on quality of life.
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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!
Diagnosed with multiple myeloma in July of 2010, John Deflice, MD, underwent induction therapy of Revlimid®, and dexamethasone, followed by an autologous stem cell transplant in March of 2011 at Cedars Sinai Hospital in Los Angeles, CA. He was placed on a maintenance dosage of Revlimid (15 mg) and dexamethasone, gradually tapering off the dex.
John and his wife attended several of the Los Angeles Patient & Family Seminars as well as one in San Francisco. John feels that attending these seminars, “was the best decision we could have made at that time. The presentations were exceptionally helpful and the support was just what we needed.” Today, he is co-leader of the Land of Enchantment Multiple Myeloma Support Group. Excited to attend ASH 2016, John hopes to learn about the new therapies for relapse and about data regarding maintenance therapy.
Diagnosed with multiple myeloma in April 2010 at the young age of 46, Linda Huguelet has been co-leading the Chattanooga Multiple Myeloma Networking group alongside her husband for 7 years. She underwent an autologous stem cell transplant in 2010 and enjoyed almost four years in remission before her first relapse in 2014. She repeated her induction therapy of Revlimid®/Vecade/Dex and returned to a complete remission and continued treatment with Velcade maintenance. In May 2016, her numbers began to climb again. Currently, she continues to have a VGPR with Empliciti®/Revlimid/Dex.
Throughout her myeloma journey, Linda has found it important to exercise regularly. She currently enjoys morning walks, tai chi and water aerobics. Fitness helps her fight fatigue which allows her to continue working full-time. She even works remotely during her bi-weekly Empliciti infusions.
Excited to learn of the latest developments in myeloma care, Linda will be attending ASH for the fifth time with the IMF. She recently participated in a CAR-T Patient Advocacy Forum hosted by Celgene and she’ll add CAR-T therapies to the things she’s most excited to learn about at the ASH conference. Maintenance therapies, updates on the approved monoclonal antibodies, and new emerging monoclonal antibody treatments will also be a focus for Linda.
Follow Linda on Twitter: @LindaMYELOMA
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The Chattanooga Area Multiple Myeloma Networking Group
Teresa S. Miceli, BSN OCN is a registered nurse at Mayo Clinic – Rochester. Since 1991, she has been working in the area of Blood and Marrow transplant. She is an active member of the International Myeloma Foundation (IMF) Nurse Leadership Board since the initiation in 2006, providing patient and nurse education through presentations and publications. In addition, she facilitates the Multiple Myeloma Sharing Sessions in Rochester, Minnesota, a support group for myeloma survivors and caregivers. She attends the American Society of Hematology Annual Meeting with the IMF as a support group leader and nurse liaison.
Laura Mooney is a caregiver to her husband Charles who was diagnosed with Multiple Myeloma in 2010. Laura is a native Staten Islander, one of six children and has been in the media sales business for almost twenty years. With this background, she was able to start a local Multiple Myeloma Support Group in January of 2012. Reaching out to the local Staten Island Newspaper following the death of Geraldine Ferraro, a story about the formation of the group ignited an initial meeting where over 30 patients and caregivers attended. Laura knew there were other newly diagnosed patients struggling with this disease who needed support and education on how to cope with this situation.
The Staten Island Multiple Myeloma Support Group meets once month with various speakers invited to educate and inspire members. Laura along with her husband has raised awareness in her local community about Multiple Myeloma. Being in New York the group has been fortunate to have some of the best Myeloma specialists visit and speak about advances towards a cure.
Doctors from Mount Sinai and Sloane Kettering, as well as nurse practitioners from Hackensack Medical Center have addressed the group, along with lawyers, social workers and patients who have been in long term remission.
Laura and Charles make home visits to new patients from time to time and have participated in local health fairs in an effort to get the word out about their support group. She is pleased to report that Charles who had a stem cell transplant in 2011 has been in stringent complete remission with no maintenance drugs at present. Laura and Charles continue to enjoy the reward of helping others in their home of Staten Island, New York.
Michael Tuohy was diagnosed with multiple myeloma in 2000 when he was 36 years old. With two young children (ages 2 and 7) the focus was always on beating myeloma and long-term survival. His approach over the past 18 years has been to become empowered, learn as much as he could to have productive conversations with his doctors, and to then share his experience and voice with others to help them along their own journey. Michael had an autologous stem cell transplant in 2002, various challenges through the years, and is currently on Revlimid® (12 years.) He and his wife Robin started the first myeloma support group in Connecticut in the Spring of 2001 with the help of the IMF.
Follow Michael on Twitter: @IMFmikeMyeloma
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Connecticut Multiple Myeloma Fighters Information Group
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 12 myeloma patients and support group leaders through the various programs at ASH 2017. 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!
Follow Robin on Twitter: @IMFsupport
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Connecticut Multiple Myeloma Fighters Information Group
Tiffany Williams is a native of Charleston, South Carolina. She is married to her best friend Adrian Williams, and they are the proud parents of three children; AJ (Adrian Jr.) who passed away in 2004 at the age 13; Christian, 23; and Andrew, 20.
Tiffany is a pediatric nurse practitioner/doctor of nursing practice and assistant professor. She was diagnosed with multiple myeloma on November 16, 2013 and transplanted on July 21, 2014 after two cycles of VCD (bortezomib, cyclophosphamide, and dexamethasone) and four cycles of CRd (cyclophosphamide, lenalidomide, and dexamethasone). Currently, she is on Revlimid maintenance and in complete remission. Tiffany is co-facilitator of the Charleston Area Multiple Myeloma Networking Group. She comments, “Attending IMF support group leaders and regional workshops has changed my life, inspiring me through hope. I am eager to impact and empower others with the knowledge I anticipate learning at ASH 2016.”