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. Since then Jack has had 3 transplants (2x auto, 1 full allo), participated in 2 clinical trials (including original thalidomide trials), lots of chemo and lots of radiation.
What a difference nearly 23 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 the young age of 25 with stage III multiple myeloma 23 years ago, Yelak Biru is research advocate in both the private and public sector. He is a member of the board of directors of the International Myeloma Foundation, an ECOC patient advocate, an NCI Myeloma Committee Member and patient advisor for several industry partners. Through social media and as an invited national and international speaker, Yelak motivates his audiences focusing on the issues of QOL, cancer life balance, and innovating for now. Follow Yelak on Twitter @NorthTxMSG.
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.
Jim Omel’s myeloma diagnosis occurred in 1997 following a vertebral fracture. His initial treatment is now ancient myeloma history: (VAD…Vincristine, Adriamycin, and dex) along with radiation. At relapse in 2000 he had an ASCT, retired from active medical practice, and began a new role as a cancer research advocate. Relapse in 2006 was treated with Revlimid, local bone irradiation, and Revlimid 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 has included working with the NCI Myeloma Steering Committee, FDA, Alliance Cooperative Group (Myeloma and Transplant Committees), CIBMTR (transplantation), Moffitt Cancer Center, Seattle FHCRC, ASCO (CancerLinQ, Bisphosphonates in Myeloma Review Panel, Palliative Care Taskforce, Myeloma Guidelines Panel, Platelet Task Force), local hospital cancer committee, and of course his Central Nebraska Myeloma Support Group. He is an External Advisory Board member for Washington Univ (St. Louis) CMMN (Center for Multiple Myeloma Nanotherapy), and BCNI (Blood Cancer Network Ireland). He is a Steering Committee member for Celgene’s USA Connect MM observational trial, and a Steering Committee member for Takeda Oncology’s global INSIGHT trial. He is an NCCN Myeloma Guidelines for Multiple Myeloma Panel member.
Jim has a special interest in helping develop MRD as a clinical trial endpoint and has worked with expert panels on this subject. It is hoped that MRD (-) or (+) findings might become an effective biomarker to accurately predict treatment effect. Hopefully we can reach a point where proven MRD negativity can be an FDA approved endpoint to speed drug approval. Clinical trial testing might prove it capable of serving as a marker for patients and their doctors to safely consider holding treatment or taking a break from therapy. At ASH Jim will be especially interested in posters and presentations featuring the clinical utility of MRD evaluation to benefit myeloma patients.
Since being diagnosed with myeloma in 2015 Valarie has rallied to educate, inspire and empower other myeloma patients and caregivers. She is facilitator for the myeloma support group in Aurora Illinois.
Enthusiastic about being a part of ASH 2018, Valarie hopes to learn more about therapies for relapsed myeloma, living with myeloma as a chronic disease and the racial disparities in myeloma care.
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 was diagnosed with myeloma in 2013. She is a co-facilitator of the Charleston Area Multiple Myeloma Networking Group, and is in the process of starting a group in Orangeburg, SC. Tiffany is a strong myeloma advocate, committed to address the increased risk of diagnosis among African Americans through awareness and education. Tiffany comments, “I am eager to impact and empower others with the knowledge I anticipate learning at ASH 2018.”
Yvonne is excited and honored to attend ASH 2018. She is a Multiple Myeloma patient and advocate diagnosed in 2005. She leads the Pittsburgh Multiple Myeloma Support. Yvonne is thankful for every group member and looks forward to sharing what she learns to help empower them to be their own best advocate.