Meet Cindy Brown: A Myeloma Research Advocate and HealthTree Coach

Cindy Brown's story of resilience and advocacy is making waves in the myeloma community. Recently featured in Cure Magazine, Cindy offers a beacon of hope for other blood cancer patients. Diagnosed with myeloma in 2014, she hasn't let it slow her down. Instead, she's become a champion for research participation and a guiding light for other patients through her work as a HealthTree Coach. In this interview, Cindy shares her experience with clinical trials, the potential of bispecific antibodies to treat myeloma, and how HealthTree has helped her in her journey.

Cindy, your story in Cure Magazine about participating in a clinical trial and being treated with a bispecific antibody is truly remarkable. Can you tell us more about your decision to enroll and how it's impacted your life?

Cindy: Absolutely! Joining the trial was a turning point. Here I am, four years in remission – the longest I've ever experienced. Participating in research is the only way we'll find a cure for myeloma, and my experience has been overwhelmingly positive. The extra care, close monitoring, and quick response to questions have been invaluable.

You mentioned some considerations for other patients thinking about clinical trials. Could you elaborate?

Cindy: Sure. There's more paperwork, frequent blood tests, and dedicated monitoring. But it also means access to cutting-edge treatments and, in my case, a much longer remission than any previous therapy. Financial considerations exist too. My insurance covers the blood work, and the trial sponsor provides the medication at no cost until I no longer need or want it, regardless of whether it has been approved by the FDA. More importantly, participating in a clinical trial means you are also helping advance research toward finding better treatments for others with the same diagnosis.

Find active clinical trials enrolling patients in your area with the HealthTree’s Clinical Trial Finder. 

Let's talk about your experience with teclistamab, a recently approved bispecific antibody for myeloma. How has it impacted your life?

Cindy: I enrolled in the first teclistamab trial in 2020. The biggest ongoing challenge is frequent upper respiratory infections, which can be a bit of a hassle, but manageable. Luckily, my oncology care team is willing to manage them for the most part, so I do not need a lot more outside doctor visits. While bispecifics may not be a perfect fit for everyone, I'm optimistic about their potential. The treatment schedule is manageable, now every 4 weeks, and I only need additional tests and scans every six months.

Read more about bispecific antibodies in multiple myeloma and infection risk.

You've also been a HealthTree Coach for several years. What initially drew you to the program?

Cindy: Originally, I used HealthTree as a fantastic educational resource, especially the video tutorials. Becoming a HealthTree Coach was a natural next step. Three years ago, Jenny Ahlstrom saw my passion for helping others and encouraged me to get involved.

Learn all about multiple myeloma from the experts. Watch the latest videos at HealthTree University.

How has being a Coach and using HealthTree Cure Hub impacted your journey with myeloma?

Cindy: I absolutely love being a Coach! Currently, I actively mentor 17 individuals – some directly through HealthTree, others referred to me. I also encourage all my patients to utilize HealthTreeCure Hub. While I haven't found a "Myeloma Twin," it's a fantastic tool for data aggregation and participating in online surveys.

Join the HealthTree Myeloma Community: Find Strength and Support

Cindy's story is a testament to the power of research participation, patient support networks, and the tools offered by HealthTree. If you're living with myeloma, consider enrolling in clinical trials, connecting with a HealthTree Coach like Cindy, and taking advantage of resources like HealthTree Cure Hub. 

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