My Experience with All4Cure
I was introduced to All4Cure several months ago by former friend and myeloma advocate, Cherie Rineker. Cherie drew me in with her warmth and bright smile, but it was her tireless advocacy for those of us living with multiple myeloma that urged me to pay attention when she talked. Our ages and stories were similar, so I was eager to learn from her years of experience and research. Cherie spoke highly of All4Cure and its founder, Dr. Tony Blau, who supported Cherie both professionally and personally right up until her death in October of 2019. I talked with Dr. Blau recently about how All4Cure can help those of us living with multiple myeloma and also the surprising way it has already benefited me.
What is All4Cure?
All4Cure is an online, information-sharing platform that brings together myeloma patients, clinicians, and researchers. After patients register (at no cost) and release their medical records, Dr. Blau and his team collect, compile and discuss the data. They then enter it into the All4Cure system, creating a personalized but anonymous data dashboard. These dashboards are then accessible to participants, who can then ask questions about and comment on a particular patient’s situation.
Since genetic complexities can play such a large role in the treatment of myeloma, All4Cure allows patients and their oncologists to compare treatments and outcomes among those with genetic similarities in the hopes of choosing the most effective treatment path. All4Cure does not provide advice or replace the need for an oncologist, but it does serve the role of a knowledgeable friend, bringing ideas to the table that patients and their oncologists may want to consider.
Dr. Blau created All4Cure in hopes of improving patient outcomes and finding a cure for multiple myeloma, a still incurable disease that he himself was diagnosed with in 2015. Prior to his diagnosis, he was already a hematologist and scientist working toward a cure for cancer, but now he has some serious skin in the game. He experienced that same surreal feeling upon diagnosis like many of us. He’s also been through both autologous and allogeneic stem cell transplants, and he understands living with the constant threat of relapse.
His sense of urgency infuses his mission with All4Cure to bring the latest, up-to-the-minute research advances in myeloma. Since studies have shown that myeloma patients who see specialists have better long term survival, Dr. Blau’s mission is for All4Cure to offer a patient, with or without a specialist, essentially the best-in-class care no matter where they are seen. And as I found out, even if one is already seeing a specialist, an extra pair of eyes never hurts.
My exprience with All4Cure
I signed up for All4Cure without any of Dr.Blau’s sense of urgency. I am relatively new to the world of myeloma, currently in remission, and several oncologists declared me moderate risk with no precarious genetic abnormalities. My All4Cure dashboard, however, told a different story. I discovered that my oncologist had missed a high-risk t(14:20) translocation from my genetic FISH test prior to transplant.
As much as I cringed seeing that information, I was able to inform my doctor so we can make more informed decisions moving forward. Not only that, I posted a question about my treatment options and got valuable input from some of the top myeloma experts in the country. When I see my oncologist, we will discuss possible changes in treatment, and I will ask (rather, beg) him to sign up with All4Cure. With all of us working together, I have much more hope that I’ll have the best prognosis possible.
All for one, and one for all
Eventually, Dr. Blau hopes to have a fully automated system, capable of efficiently storing data for millions of patients. He also aims to expand All4Cure to other diseases beyond multiple myeloma. There’s still a ways to go, but myeloma patients can sign up now, knowing that our data can be used to help others, and the experiences of others can be used to help us. This mutually beneficial and interconnected relationship is a theme already familiar to many of us living with cancer. It also lies at the heart of All4Cure’s mission and motto: All for one, and one for all.
What type of blood cancer are you or your loved one diagnosed with?