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 attended Rutgers University graduating with degrees in Psychology and Education. Upon graduation she secured her first teaching position and immediately fell in love with her chosen profession. Cynthia continued teaching for 28 years.
Now retired, Cynthia is using her passion for education to teach a new group of “students” – myeloma patients and their caregivers. Cindy belongs to the Philadelphia Multiple Myeloma Networking Group where she serves on the steering committee. Using social media to educate is her passion. Cynthia educates and advocates by tweeting at @MyelomaTeacher and sharing myeloma resources, educational opportunities and clinical trial information on her MyelomaTeacher Facebook page. Ms. Chmielewski is the co-founder of the #MMSM TweetChat and is also a regular panelist on the CureTalks Podcast. Ms. Chmielewski was an invited panelist and presented posters on using social media in hematology at the annual meetings of the American Society of Hematology (ASH), the American Association for Cancer Research (AACR) and the European Bone Marrow Transplant (EBMT).
Cindy enjoys serving as a voting member on the IRB at the University of Pennsylvania, the patient advocate on the Myeloma Steering Committee of the NCI’s Clinical Trial Network and a peer grant reviewer for the Department of Defense.
John DeFlice is a nine year survivor of multiple myeloma. He had a stem cell transplant in 2011 and is currently on maintenance therapy. He is also the co-lead of an International Myeloma Foundation support group in Santa Fe, New Mexico and has attended ASH at the invitation of the IMF for three years. He will again be attending ASH 2019 in Orlando, Florida and is interested in the new antibody therapies, the new Chimeric Antigen Receptor (CAR-T) therapies, Chimeric Antigen Receptor-Directed Natural Killer cell (CAR NK) therapy, Bispecific T-cell Engager (BiTEs) therapies and the new drugs such as Iberdomide (CC 220).
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 since February 2011. 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®/Velcade/Dex and returned to a complete remission and continued treatment with Velcade maintenance. In May 2016, her numbers began to climb again and she maintained a VGPR with Empliciti®/Revlimid/Dex for almost 2 years. She is currently responding well to Darzalex®/Pomalyst®/Dex and enjoys only going for treatments on a monthly basis.
Linda has found it important to exercise regularly throughout her myeloma journey. She currently enjoys morning walks, tai chi and water aerobics. Fitness helps her mentally and physically which allows her to continue working full-time. She feels fortunate to be able to work remotely during her infusions.
Excited to learn of the latest developments in myeloma care, Linda will be attending ASH for the seventh time with the IMF. Updates on new combinations with the approved monoclonal antibodies and new emerging conjugated monoclonal antibody treatments will be of interest to Linda at this year’s ASH.
Follow Linda on Twitter: @LindaMYELOMA
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The Chattanooga Area Multiple Myeloma Networking Group
TERESA MICELI, RN, BSN, OCN
Teresa S. Miceli, BSN OCN is a 28-year nurse veteran in the area of Blood and Marrow Transplantation. Her current role is that of a BMT RN Care Coordinator for the Adult Program at Mayo Clinic-Rochester, MN. She is well recognized for her extensive experience in autologous and allogeneic Blood and Marrow Transplantation.
Her areas of professional interests include multiple myeloma, side effect management, survivorship, and stem cell transplantation. She has authored journal articles, and is a national and international speaker at professional society meetings and patient symposia on these topics.
Ms. Miceli is a charter member of the Nurse Leadership Board of the International Myeloma Foundation. She is the facilitator of the Multiple Myeloma Sharing Sessions in Rochester, MN, a support group for myeloma survivors and caregivers.
JIM OMEL, MD
Jim Omel, MD is a retired Family Practice physician who was diagnosed with myeloma in 1997. His cancer was initially treated with VAD and radiation. At relapse in 2000 he had an ASCT, retired from active medical practice, and began a new role as a cancer research advocate. Relapses in 2006 and 2010 were treated with local bone irradiation, the IMID Lenalidomide and Proteosome Inhibitor Bortezomide. His experience includes 14 months of ONJ with exposed mandible, caused by bisphosphonate therapy.
Dr. Omel’s advocacy has included the NCI Myeloma Steering Committee, peer review and the NCI Director’s Board of Scientific Advisors, FDA Patient Representative, Alliance Cooperative Group Myeloma and Transplant Committees, CIBMTR, ASCO (CancerLinQ, Platelet Task Force, Clinical Pathways Task Force, and Bisphosphonates in Myeloma Review Panel), NCCN Myeloma Guidelines reviewer, LLS First Connection, Takeda Oncology’s INSIGHT clinical trial Steering Committee and PLC (patient leadership council), Celgene’s Connect MM Steering Committee, and 20 years leading the Central Nebraska Myeloma Support Group. He has served as an external advisor to research projects at St. Louis Washington Univ, FHCRC in Seattle, Moffitt Cancer Center in Tampa, and Blood Cancer Network Ireland.
Since being diagnosed with myeloma in 2015 Valarie has rallied to educate, inspire and empower other myeloma patients and caregivers. She enjoys being a patient advocate and is facilitator for the myeloma support group in Aurora Illinois.
Delighted to have the opportunity to be a part of ASH 2019, Valarie hopes to learn more about therapies for relapsed myeloma, disparities in patient outcomes by patient race-ethnicity, the latest in BiTE therapy and the risk of secondary cancer as a result of myeloma treatment.
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 finding the best treatment options, and beating myeloma. He had an autologous stem cell transplant in 2002, and is currently on Revlimid® His approach over the years has been to become empowered by learning as much as he could to have productive conversations with his doctors, and to then share his experience with others to help them along their own journey. He and his wife Robin started the first myeloma support group in Connecticut in the Spring of 2001 with the help of the IMF, which is known as the Connecticut Multiple Myeloma Fighters Information Group.
Follow Michael on Twitter: @IMFmikeMyeloma
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Connecticut Multiple Myeloma Fighters Information Group
Robin Tuohy became a passionate advocate in the myeloma world in 2000 when her husband, Michael was diagnosed. In 2005 she began working for the International Myeloma Foundation, and is now Vice President Support Groups. Robin attends most major myeloma medical meetings and seminars to learn and share key updates and hope with other patients and caregivers. Robin leads the IMF’s Support Group team and oversees approximately 160 U.S. myeloma specific support groups. She is responsible for the IMF’s Support Group Leaders Summit, Myeloma Action Month program, Living Well Conference Calls, and leads a group of patients that are support group leaders at the American Society of Hematology (ASH) annual meeting. Robin and her husband, Michael also founded and co-lead the Connecticut Multiple Myeloma Fighters Information Group.
Follow Robin on Twitter: @IMFsupport
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Connecticut Multiple Myeloma Fighters Information Group
Tiffany was diagnosed with myeloma in 2013. She is the facilitator of The Multiple Myeloma Network for Orangeburg, SC Group and a co-facilitator of the Charleston Area Multiple Myeloma Networking Group. Tiffany believes purpose drives passion and her renewed purpose driven life as a cancer survivor and advocate. Tiffany comments, “I am eager to impact and empower others with the knowledge I anticipate learning at ASH 2019.”