I've heard from some of you that you would be interested in hearing about why I decided to receive CAR T therapy at relapse. I don't share my personal story very often, but thought I would share this part of my story using our new (and very cool) journaling feature.
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I thought I would be intimidated by the video capture of the journal, but it turned out to be a fun way to capture part of my story to share with my posterity (and you).
I was diagnosed in 2010 and received tandem transplants and a couple years of consolidation and maintenance therapy. I chose the tandem transplants because my doctor told me that my first remission would be my best shot at a "cure" approach. Being 43 at diagnosis, I liked the word "cure." I started the HealthTree Foundation in 2012, thinking I would relapse quickly with a great sense of urgency to work towards a cure.
When I was diagnosed, long-term maintenance was not common, so I went off treatment in 2012. I was fortunate to be off therapy, which gave me the opportunity to build the HealthTree Foundation and its amazing programs.
Ironically, in 2015 I began to think I may not relapse any time soon. I thought I may one of those miraculous patients who is in remission for a decade or more following transplant. But it wasn't to be. This same year I began to see a "faint band" on my monoclonal protein report. When my disease started to return slowly but consistently, we just watched it. Over the next few years, I went from having a faint band to a measurable m-protein. I was anxious about my increasing numbers and met with several myeloma doctors to consult with them about what I should do next. After an initial set of visits, we determined that we would just watch it unless I developed new symptoms, and when it became part of the "official" relapse criteria (.5 m-spike) that we would take action.
The .5 m-spike came in time. Because the relapse was slow and I was had no CRAB criteria (no calcium issues, renal problems, anemia or new lesions), we determined to keep watching it. During this time, I started looking at treatment options and discuss them with my doctor(s) to get a variety of opinions. I took the opinions seriously and spent extensive time reviewing each option, which were radically different from one another.
I could repeat a transplant because it worked so well. I could do CAR T in a clinical trial that I was eligible to join. I could just do Revlimid. I could do a triple or quad combination and go into a multi-year remission. It was a lot to process and I was so glad that I'd spent so much time beforehand getting to know about my options. I felt prepared to share my preferences and personal strategy with my doctor.
After all was said and done, there was no ONE approach that the experts converged on. We are blessed to have so many options for therapy. Although it was confusing, having so many choices was a great problem to have. Dr. Doug Sborov commented, "Your challenge will be to pick from all of your options because you know so much."
Also ironically, as my doctor started suggesting that we make a move to avoid any new lesions or other organ damage, the longer I wanted to wait. I had waited this long, so what was a few more months or another year? But in the end, I knew it was time to take action and follow my doctor's recommendations.
With an m-protein now well over the official relapse of .5, I determined that I wanted to take advantage of CAR T therapy if I could get into a clinical trial. It was a continuation of my personal "cure" strategy. I liked the idea of a one-and-done treatment that could potentially give me a multi-year remission. So I went to work.
I reviewed all of the clinical trials that I could qualify for using HealthTree Cure Hub. I spent time pouring through the CAR T trials to review in detail the eligibility criteria. I was willing to travel to any facility where I could get a spot. I was not able to qualify for any of the Abecma trials as they all required 4 prior lines of therapy.
Shockingly, one of the CAR T cilta-cel studies, the CARTITUDE-4 study, was open at my facility and because of the wonderful trial design with many different types of arms, I potentially qualified for one of the trial arms.
I talked to my doctor and he said that if that's what I wanted to do, we should move forward. I would have to qualify for the trial, have an open spot and be randomized into the CAR T arm. With a 50/50 chance of getting into the CAR T, I enrolled. Nothing was certain until I went through the whole process.
There were many ups and downs in the process and CAR T therapy is in the "big deal" category, but I was computer randomized into the trial arm. The trial spots closed shortly after my approval. I consider it a miracle that I was able to join the study and I'm glad that I did. Trying to get a spot for the FDA-approved CAR T therapy today is a great challenge for patient and provider alike.
I completed the study last November and am delighted with my choice. I reflect at the blessing of a clinical trial opportunity that helped me access a remarkably effective treatment earlier rather than later. I am now MRD negative and I hope that lasts for a long time.
With another reprive from myeloma for a season, I look forward to continue serving you as we strive together towards a cure.
about the author
Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical research. Founder of HealthTree Foundation (formerly Myeloma Crowd).