During the summer of 2018, I spent some time in Europe facilitating the Global Myeloma Action Network meeting, attending IMWG conference and sparring, from a patient perspective, with Dr. S. Vincent Rajkumar on the topic of “Do I Need a Stem Cell Transplant for the Treatment of Myeloma?” and sharing the stage with leading researchers of myeloma during the EHA Janssen Satellite Symposium, where Dr. Francesca Gay and I discussed treatment options in Europe.
I was also privileged to attend and speak at the IMF Patient and Family seminars, support group leaders’ summits and the fall fundraising gala where Dr. Robert Kyle was honored for his lifetime achievement in improving the lives of myeloma patients. I have also been able to attend the ECOG meetings and fall conferences, as well as several NCI myeloma committee meetings.
If, 23 years ago, when I was diagnosed with myeloma and given 2-3 years to live, you told me I will be alive almost a quarter of a century later let alone be fortunate enough to serve my fellow patients, I would have thought it was a pipe dream. But, here I am!
Diagnosed during the year-end holidays of 1995 and treated with VAD (Vincristine Adriamycin Dexamethasone)– the treatment breakthrough of the year was the administration of Vincristine using continuous ambulatory pump over 96 hours that allowed myeloma patients to be treated in an outpatient setting and not have to be admitted the hospital.
Fast forward 23 years to #ASH18, according to the clinicaltrials.gov website, there are 453 open and recruiting clinical trials for multiple myeloma. Searching the #ASH18 abstract website for myeloma yields over 900 myeloma related matches and over 200 oral sessions. Since 2003, there are 9 novel therapies approved for the treatment of multiple myeloma.
These advances have enabled the average life expectancy of standard risk myeloma patients to increase to up to 10 years.
With all these advances during the last two decades, myeloma remains incurable. We continue to loose family members, friends and loved ones to this disease. Treatment-related side effects remain high, and in some cases, treatment itself is limited.
Hope continues to shine a light in the darkness of this incurable cancer. So far, I have met, in person, three myeloma patients that have gone through CAR-T therapy and are leading their life with the best quality they can remember. I see long-term survivors that have been able to incorporate myeloma, its side effects, uncertainties into their life and living life to the fullest – thanks to more effective, tolerable and targeting treatment advances.
While these treatments are born from better understanding of the biology of myeloma and start in someone’s highly sanitized laboratory and come to see the day of light after many years of research and testing, the American Society of Hematology Annual meeting and Expositing is the premier and prestigious show and tell venue for researchers, pharmaceutical companies, and non-profit organizations to present their findings and share the future with their peers and partners.
As many ASH’s before, IMF’s Satellite Symposium, IMWG working breakfast, Oral and Poster presentations, IMWG Conference Series webcast, networking and camaraderie along with sleeplessness are some of the things I look forward to this year’s #ASH18.