Cindy Brown
Cindy Brown was just 48 years old when chronic pain began interrupting her busy life. She worked full-time as the Chief Operations Officer of a medical practice, leading to a familiarity with the healthcare system that ultimately proved helpful.
“I was having a lot of pain in my right hip and leg, and it progressively got worse. I assumed it was exercise related or caused by a disc bulge. But about a month before this, I’d also broken several ribs from coughing,” she said. “I was running a large medical practice that had pain doctors and spine doctors and physical therapists and neurologists, so I had all kinds of people trying to figure out what was going on. One day, an MRI technician chose to scan a little lower than usual, and they found a large mass in my right sacrum that had broken the bones.”
Two days and one biopsy later, Cindy was diagnosed with multiple myeloma, a bone marrow cancer that is incurable. This diagnosis was particularly surprising, both because of her young age and because her annual physical, just months earlier, had led to a clean bill of health.
“Fortunately, my family was super supportive. Their attitude was, ‘Whatever we need to do, we’re going to make sure you get the best care possible.’ I’m immensely grateful for that because, six months later, I decided to leave my family so my husband could take care of our two kids at home in Southern California and do my transplant in Seattle, Washington, near where my retired parents live,” she said. “My employer was extraordinarily supportive, too. I ended up being gone from work for nearly two years and was away from home for ten months because my disease was worse than they had realized and I had to do more treatment.”
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Transplants played a large part in Cindy’s early treatment. She had an autologous transplant first, using her own stem cells, which is a standard treatment for multiple myeloma patients. Nine weeks later, she had an allogeneic transplant, also known as a donor transplant. As important as these treatments were, they also came with massive challenges.
“A couple weeks after I had the allogeneic transplant, I went into heart failure because I was not getting rid of fluid in my body. I actually almost passed away,” she said. “That was a lot to overcome because, after, I couldn’t walk, I couldn’t stand. I was really, really sick. But my overall response to it has been very good; I’ve relapsed a couple of times since then, but never in my bone marrow, so the transplants did work well for me.”
After two years with no signs of the disease, Cindy’s myeloma returned. Various treatments – including surgery and radiation to treat its occurrence in her jaw and her arm – ultimately led her to consider a clinical trial.
“Honestly, I was kind of out of options. I’d basically been through all of the drugs that had been approved, and they were talking about putting me back on an old school, nasty type of chemo,” she said. “But my myeloma specialist was one of the lead investigators on the trial that I eventually joined, and she was so excited and animated when she told me about it. I also liked that it wasn’t hours and hours of infusion time, and there weren’t a lot of anticipated side effects.”
It didn’t take long for Cindy to begin this clinical trial for her multiple myeloma – but even that experience came with unexpected complications.
“I started in a Phase One clinical trial in March 2020. I had to be in the hospital for twelve days when I started, and the COVID-19 shutdown actually happened while I was in the hospital,” she said. “But I’m not a really high stress person. It was like okay, this is what I’m doing, this is what I need to do, and I’m going to make it happen.”
Now age 58, Cindy speaks positively about her inpatient clinical trial experience. She had a dedicated clinical trial nurse who checked on her daily, and who continued to be her point person for communication for years to come.
After those twelve days inpatient, Cindy’s treatment changed to once a week for the first year before changing to every other week for the following two years. Today, her treatment happens just once every four weeks. During that time, the drug was actually approved in October 2022, and Cindy believes she is one of the few patients in the world that has been on this drug for over 4 years.
So even though she understands that starting a clinical trial is a big decision, she knows that it was the right call for her circumstances.
“When I was first diagnosed, I was only 48 and I was worrying about whether or not I was going to be here for my kids. I felt extraordinary fear about leaving them without a mother,” she said. “But with cancer trials, it’s never a placebo on the other side. Instead, it’s whatever’s being tested along with something that’s considered standard of care. And I figured, well, I’ll still be getting something that’s been known to work – it just may be more or less effective than the new drug.”
Before her multiple myeloma diagnosis, Cindy already had a positive outlook on clinical trials due to her years of work in healthcare. But even since her own health has become a part of that conversation, her positivity remains.
“Myeloma is currently not curable. So anything I can do to help improve the landscape for other people, I want to do it. In the ten years since I’ve been diagnosed, fourteen new treatments have been approved for myeloma, which is amazing. If we don’t participate in clinical trials, we can’t learn new things,” she said. “And thank goodness I did join this trial, because I’ve been on it for a little over four years now, and it was clearly the magic bullet for me.”
Thanks to the extensive benefits that Cindy’s pre-existing healthcare knowledge has played in her own diagnosis experience, she now coaches other people through their own multiple myeloma diagnosis. She also recommends seeking resources from organizations like the International Myeloma Foundation, SparkCures, HealthTree, and the Multiple Myeloma Research Foundation.
“I am incredibly fortunate that I’m comfortable navigating health care and that I have a really great support system. The first thing I tell someone to do is to get a myeloma specialist. You simply will not get the best care if you’re not with a doctor who treats myeloma exclusively,” she said. “This disease is heterogeneous and the treatment landscape is changing every single day, so if you don’t have that support, if you’re not advocating for yourself, you may miss out on some things. It breaks my heart when people don’t get a good outcome, especially when it’s simply because they don’t know how to ask the right questions in order to get the right care.”
