In 1995, I was diagnosed with stage 3 multiple myeloma and given only two-to-three years to live. At the time, my wife and I had been married for over 20 years, and our children were 10, 14, and 16 years old. To be told I had such a short time to live, at that point in my life, was intensely overwhelming. Beyond anything else, I wanted to be there for my family, but my doctors were telling me I might not.
So I decided to learn as much as I could to find and receive treatment by oncologists who specialized in myeloma. When I asked my first doctor how many myeloma patients he was treating, he answered “Two, including you.” Hearing this shocked me and reinforced my goal to find other doctors who might have more perspective and experience with what other myeloma patients were facing. I found a local oncologist/hematologist who was treating a dozen myeloma patients and had connections at Stanford, my local cancer center.
Finding Help in the Right Places
Perhaps the most important step in my journey was finding a local myeloma support group. First, I remember being so relieved just to see twenty other myeloma patients living and breathing with the same disease as me. Second, this group helped me get educated about myeloma. I learned that, at that time, there were only two treatments for myeloma—oral therapy for older patients and an autologous transplant for younger patients like myself.
Figuring I’d go the transplant route, I interviewed the doctor in charge of Stanford’s hematologic transplant department. I learned that, while they were very strong in leukemia and lymphoma, they had just changed their transplant protocol for myeloma patients (having performed it on only 2 patients at that time). Again, my concern was lack of experience. During this time, several members of my myeloma support group discussed their experiences at the University of Arkansas Medical Center (UAMC) and were saying that they were currently treating 400 myeloma patients per year! Now, that was experience I could get behind.
The next eight years of my life were filled with treatment—from lots of chemotherapy to three transplants (two were autologous and one allogeneic) and two clinical trials. All my treatments were done at UAMC the first five years. The allogeneic transplant was risky, but it led to a long-term remission even after I relapsed after all my other treatments. After my final allogeneic transplant, they arranged for a newly hired Stanford myeloma specialist to take over my care so I could go home to the San Francisco Bay Area. Stanford managed my graft-versus-host disease from the allogeneic transplant as well as several extramedullary plasmacytomas with radiation. To this day, I’m still followed by Stanford and have not been on any treatment for myeloma since 2002.
A Support Group for All
Simply put, my journey with myeloma has been a whirlwind—and my support group was invaluable as a resource throughout it all. But what if we could expand on this idea by taking the journeys of many myeloma patients, gathering them into one centralized location, and offering that data as a guide for others?
That’s what CancerLinQ can do—meaningfully impact patient treatments by finding connections that may have been missed or filling knowledge gaps where clinical trial data does not yet exist.
Thanks to the patients participating in clinical trials, new therapies for multiple myeloma and other cancers are being approved by the FDA and becoming available at a remarkable rate, but the pace of these advances makes it nearly impossible for any single physician to follow and track results manually. CancerLinQ gives oncologists access to data from the real-world care experiences—the stories of patients’ journeys— of over 4 million patients that are treated in practices within the CancerLinQ network. With CancerLinQ, patients like myself can feel more confident in those caring for us because we know our oncologists can easily access relevant information from similar patient cohorts to help form more personalized treatment plans.
Impacting the Future of Cancer Care
Within my local support group, we meet and share our stories to both lift each other up and educate one another. CancerLinQ can offer oncologists what my local support group offered to me—but on a significantly larger scale—giving hope to patients as new treatment options are considered, discovered, and ultimately shared.