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.
On August 21, 2004, John Auerbacher was vacationing with his wife, eight-year old son, and five-year old daughter at a Montana dude ranch. On a stormy trail ride, John’s horse spooked and tossed him to the ground. The pain was horrific. The local urgent care clinic failed to recognize John’s L5 fracture, so the family continued with their vacation plans to show the children Yellowstone National Park.
Still in excruciating pain, John visited an ER in Montana for another misdiagnosis and so remained blissfully ignorant for a few more days. Back in New York, John’s friend, an orthopedist, ordered the appropriate tests and earned the unfortunate task of sharing the bad news (on his wife’s birthday). Pain and panic of a different sort set in.
While awaiting consults with New York City specialists, John and his wife flew to the University of Arkansas for Medical Sciences (UAMS) in Little Rock for a thorough work-up. Their recommendation: move to Little Rock for six months to undergo two stem cell transplants. The New York specialists disagreed among themselves and with UAMS. Left reeling with conflicting advice, fortunately, John’s rabbi knew Rosanne Kalick (former IMF support group leader), and Rosanne connected John to the IMF.
On October 8, barely a month after diagnosis, the IMF held a Patient & Family Seminar nearby. Rosanne told John to go and speak with “Susie.” He walked into that seminar and asked for “Susie,” who said, “you should speak with my husband.” Within minutes, Dr. Brian Durie arrived, whom John had never heard of at the time. Dr. Durie transported John into a world of concern, self-education, and support. Today, John comments, “I did not imagine that the IMF would become so integral to my life. Now, seven Patient & Family Seminars later, one ASH meeting under my belt and years of attending and leading a support group, the IMF is essential to my physical and mental health.”
In 2004, John followed the advice of Dr. Durie and several other myeloma specialists, which was “take care of your back.” John complied with radiation, kyphoplasty, and bisphosphonates. However, John delayed direct myeloma treatment until February 2007. His first regimen consisted of Revlimid® (lenalidomide) and dex over a three-year period, followed by two and a half years of stability without treatment. After a PET-CT showed some new lesions in the summer of 2012, he began a relapse course of Revlimid and dexamethasone with the addition of Velcade® (bortezomib).
As the M-spike crept up more recently, another PET-CT disclosed a very rare and dangerous fungal infection in his sinuses (Cryptococcus neoformans grubeii). After a miserable two-week hospital stay to receive an infused anti-fungal (Amphotericin B), John began a very effective course of Pomalyst®, dex, and Kyprolis® (carfilzomib). Due to elevated blood pressure and shortness of breath, the Kyprolis was stopped.
Today, John is on Pomalyst® (pomalidomide) and dex and discussing which medicine to add: Empliciti® (elotuzumab), Darzalex® (daratumumab), or Ninlaro® (ixazomib).
He continues to swim, practice yoga, ski (against doctor’s advice), and work. John also enjoys a diet of fresh food to counter the ravishing appetite that dex can bring on and to maintain an otherwise healthy body. With his son is in college and his daughter about to graduate high school, John and his wife just celebrated their 25th wedding anniversary.
Last year, John became a co-facilitator with Jeff O’Donnell of the Westchester (NY) IMF Support Group. Jeff and John had occasionally stepped into these roles on the rare occasions when Mike Katz was unavailable.
While at the 2016 ASH conference, John hopes “to focus on the advances in combining the new drugs approved in 2015, on the most promising medicines in clinical trials, and on what patients can expect from the incorporation of MRD testing as a standard.”
Follow John on Twitter @IMFjohnMyeloma
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White Plains/Westchester Multiple Myeloma Support Group
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.
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.
Thomas Goode was diagnosed with a plasmacytoma in 2005 at the age of 34. Thomas underwent six weeks of radiation to shrink the mass. He relapsed in 2007 with complaints of back pain and was diagnosed with multiple myeloma due to masses on his T-12/L1 and his ribs. Thomas had an autologous stem cell transplant in July 2007.
His doctor noticed the mass was still there along with an M-spike. He had a second stem cell transplant in 2008 using his brother as a donor. He obtained a complete response from this transplant and was treatment free for two years.
In October 2010, Thomas had a third stem cell transplant, again using his brother as a donor. Thomas started maintenance Velcade subcutaneously for one year. Unfortunately, he relapsed once again and began taking Revlimid®. Today, he takes Revlimid® daily for maintenance treatment and his myeloma is at rest.
Since diagnosis, he has developed a totally different outlook on life: “I live my life to the fullest and cherish each day as if it’s my last. Not only do I co-lead the Triangle Area Support Group in NC, but also a Reflective Ambassador for Celgene. This role gives me the privilege of visiting other support groups and telling my story about my journey with myeloma and my experience with Rev/Dex.” The IMF is delighted to welcome Thomas to his first ASH Annual Meeting.
Diagnosed with multiple myeloma in April 2010 at the young age of 46, Linda Huguelet today co-leads the Chattanooga Multiple Myeloma Networking group alongside her husband. 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 experiences positive results with Empliciti®/Revlimid/Dex.
Excited to learn of the latest developments in myeloma care, Linda will be attending ASH for the fourth time with the IMF Linda’s focus will be on maintenance therapy, updates on the monoclonal antibodies approved in late 2015, and new emerging monoclonal antibody treatments.
Follow Linda on Twitter: @IMFlindaMYELOMA
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The Chattanooga Area Multiple Myeloma Networking Group
Teresa MIceli is a RN at Mayo Clinic-Rochester in the area of Blood and Marrow Transplant. She is a member of the International Myeloma Foundation’s Nurse Leadership Board and the facilitator of the Rochester Multiple Myeloma Sharing Sessions in Minnesota. Teresa has attended ASH many times, both as a learner and educator. She comes to ASH 2016 with a dual role as a support group leader and nurse liaison.
Diagnosed with myeloma in 1997, Jim Omel was initially treated with radiation and VAD, or V = vincristine (Oncovin®). A = Adriamycin® (doxorubicin). When he relapsed in 2000, he underwent and ASCT, retired from active medical practice, and began a new role as a cancer research advocate. Upon another relapse in 2006, Jim was treated with Revlimid®, local bone irradiation, and Revlimid as maintenance therapy. In late 2010, another recurrence in his ribs was treated with local radiation, Velcade, and Revlimid. Today, Jim is not undergoing any treatment, except for periodic Aredia infusions.
Jim’s advocacy includes work with the NCI Myeloma Steering Committee, FDA, Alliance Cooperative Group (Myeloma and Transplant Committees), Center for International Blood and Marrow Transplant Research (CIBMTR), Moffitt Cancer Center, Fred Hutchinson Cancer Research Center in Seattle, ASCO (CancerLinQ and Bisphosphonates in Myeloma Review Panel), local hospital cancer committee, and of course, his Central Nebraska Myeloma Support Group.
For most of 2016, Jim has worked with an outstanding group of myeloma experts and FDA officials who are developing and writing a consensus “white paper” to clinically define and use MRD testing for myeloma patients. The goal of the white paper will be to make this test more readily available for patients and to make MRD an accepted and agreed clinical end-point for myeloma clinical trials. At ASH 2016, Jim will be especially interested in posters and presentations featuring the clinical use of MRD evaluation to benefit myeloma patients.
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 for nearly nine years, using Revlimid® in various dosages and combinations. This fall, he began searching for the treatment that will provide the next nine-year remission (or CURE!). Tom keeps fit and active doing group exercise classes. He worked as a software engineer in the computer and aerospace industries, and lives in San Clemente, CA, with his wife Judy. They have three daughters. Thrilled to attend ASH again, Tom is interested in the application of new drug combinations and in the treatment of relapsed myeloma.
Follow Tom on Twitter: @IMFtomMYELOMA
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Orange County/Irvine Multiple Myeloma Support Group
Michael Tuohy is a sixteen-year multiple myeloma survivor, having been diagnosed in 2000 at the age of 36. He had an autologous stem cell transplant in 2002, and is currently on Revlimid® (11 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.
Michael has attended ASH with the IMF in the past is looking forward to this year’s 58th 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 newly approved treatments in current combination trials.
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 15 myeloma patients and support group leaders through the various programs at ASH 2016. 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.”