Participating in a Clinical Trial Gave Me My Life Back: A Multiple Myeloma Survivor’s Story

This post was first published on The ASCO Post, December 25, 2023. It has been edited for content. The ASCO Post, in partnership with the American Society of Clinical Oncology (ASCO), communicates news of evidence-based multidisciplinary cancer care to a broad audience of oncology professionals and ASCO members.   

Cindy Brown is a cancer survivor living in Coto De Caza, California.

Except for a series of unexplained multiple broken bones and inexplicable excruciating pain in my right hip and leg, I had no other features of multiple myeloma when I was diagnosed with the disease at age 48 in 2014. My blood test results were all normal, and I didn’t have a low level of red blood cells or kidney damage. Finally, a magnetic resonance imaging (MRI) scan showed a tumor in my sacrum, nearly the size of a grapefruit. A full-body positron emission tomography (PET) scan a few days later found lesions in nearly every bone in my body. A bone marrow biopsy confirmed multiple myeloma, a cancer I had never heard of and knew nothing about.

The diagnosis and prognosis were devastating. I was told my life expectancy was about 5 years. I had recently remarried and had 2 school-aged children, one with special needs. The thought of how the cancer would impact my children and what would happen to them if they didn’t have a mom was terrifying.

I was prescribed the standard combination treatment for the disease to reduce the amount of the cancer and ready me for an autologous stem cell transplant. Although initially the treatment was successful in decreasing the percentage of clonal plasma cells in my bone marrow to 15%, within 3 weeks, the percentage skyrocketed to over 60%. Fearing the cancer was becoming more aggressive, my oncologist encouraged me to undergo a tandem autologous-allogeneic stem cell transplantation, during which both my own stem cells and stem cells from a donor would be used.

Running out of options—and time

My recovery after the transplants was rough, especially following the allogeneic transplant when I experienced severe heart failure. This was a particularly terrifying time for me and my family. Ultimately, however, I’m convinced that having the dual transplants was a good decision. Despite a couple of cancer recurrences since the procedures, my oncologists and I believe the transplants made the cancer less aggressive and bought me time to the next treatment advancements for this very wily cancer.

Unfortunately, however, some of those newer therapies gave me only brief respites from the cancer growing. During this time, I experienced a broken jaw from a plasmacytoma, or tumor of plasma cells, and I also developed a tumor in my arm, which did not respond to chemotherapy. I needed surgery to remove the mass and place a rod between my elbow and shoulder, followed by radiation therapy. Although I have a fighting personality and had a steadfast belief the next treatment would be successful in stopping the cancer from growing, I knew I was running out of options—and time.

Getting back my life

Throughout this difficult period, I never gave up hope. I knew myeloma is an incurable disease that typically follows a course of progression and remission after therapy, but now I needed a treatment to stop further damage to my bones and enable them to heal. I am so grateful to my oncologist who gave me that lifeline.

My oncologist told me about a phase I clinical trial for people with multiple myeloma that was investigating teclistamab-cqyv (Tecvayli), a type of targeted therapy drug called a bispecific T-cell engager. She said the therapy could be a good option for me.

I started the trial in March 2020 and have been on the drug and in remission ever since. I do get frequent respiratory tract infections, one of the side effects of the drug, but they are manageable with medications. It is not an exaggeration to say that teclistamab has given me back my life.

Living—and thriving—with the consequences of cancer

The aftereffects—mostly cosmeticof having a broken jaw have been extensive. After turning down the option of replacing the deteriorating jawbone, which caused tooth loss, with grafted pieces of bone taken from my calf, which would enable me to then have implants to replace the missing teeth on the right side of my mouth, I’ve learned to live with the consequences. The right side of my face is permanently swollen from the bone damage, and I can’t chew food on that side of my mouth because of the missing bottom teeth. But I chew perfectly well on the left side of my mouth and can speak clearly. Most importantly, because teclistamab has stopped further damage to my jawbone, I likely will never have to undergo the 14-hour bone grafting surgery, which was one of the most terrifying treatment options I have ever had to contemplate.

What I have gone through dealing with this cancer has been awful, but I know from counseling other myeloma survivors that my experience could have been much worse. I don’t want cancer to define me or to be pitied for what I have experienced over the past 10 years. It has only made me stronger.

I have never been a person who has backed down from a challenge, and I know that with this cancer, a cure may not be found in my lifetime. Still, I’m buoyed by the prospect that progress in myeloma treatment will be there for me if the cancer starts to progress. It helps me sleep at night knowing that thanks to ongoing research, I’m a long way from being out of options. Advances in treatment have erased my original life expectancy prognosis and given me hope for a long future. 


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