Cindy Brown: Spending Quality Time with Family, Thanks to Immunotherapy

Nine years ago, I was experiencing excruciating pain in my right hip. After physicians prescribed injections that helped only briefly, I got an MRI that detected a tumor in my sacrum. Follow-up tests led to my diagnosis of multiple myeloma–a type of blood cancer. I was 48 at the time, had recently been remarried, and had school-age children still at home. I was devastated. After 14 different chemotherapies and two stem cell transplants, I decided to enroll in a phase I clinical trial evaluating the immunotherapeutic teclistamab-cqyv (Tecvayli). This drug has been a game changer. I have been in what is called a complete response for over three years and living a normal life, which is incredible.

It all started in April 2014. I had hip and leg pain for several months . It was so severe that I could not lie down to sleep. I saw multiple physicians who assumed that it was something in my spine, like a pinched nerve or a herniated disc. I received a few injections that provided short-term relief, but the pain kept getting worse. Eventually I got an MRI, which showed a tumor in my sacrum, almost the size of a grapefruit. Biopsies and other diagnostic tests confirmed that I had multiple myeloma.

I was in a state of shock. I was only 48, otherwise very healthy. In fact, I just had my routine lab work done a couple of months before and everything looked good. This just did not make sense. I had never heard of multiple myeloma. I was devastated.

I immediately sought treatment from an oncologist who put me on the standard treatment path for this disease. I started on a combination of steroids and chemotherapy. Additionally, I received radiation therapy to my sacrum to relieve the pain. Once that oncologist believed I was ready, I was sent to a multiple myeloma specialist to start the stem cell transplant process. Unfortunately, during that transition time, I had almost a full relapse and needed three more rounds of inpatient chemotherapy with an intense seven-drug regimen.

I received two types of stem cell transplants: first, an autologous transplant, where I received my own stem cells that had been collected prior to chemotherapy; this was followed 9 weeks later by an allogenic transplant, where I received donor stem cells from one of my brothers. The recovery after the transplants was rough, especially after the allogenic transplant. I went into severe heart failure. Fortunately, the doctors were able to manage and correct the condition. It was a rough couple of weeks for me and my family with lots of prayers.

I have had a couple of relapses since my allogenic transplant. Some of the treatments that the doctors tried only worked for brief periods of time. I experienced a broken jaw and more radiation. Iearly 2019, I developed a tumor in my arm. The tumor did not respond to chemo so in October I had surgery to place a rod between my elbow and shoulder, followed by radiation. I knew that something had to change with my next treatment. Unfortunately, I was running out of options. That is when my myeloma specialist at the City of Hope Cancer Center told me about the phase I clinical trial evaluating teclistamab-cqyv (Tecvayli). She was excited about the study and felt it would be a great option for me, which gave me a tremendous amount of hope.

I started treatment in March 2020. For the first 11 days, I was in the hospital, where I received step-up dosing to make sure I could tolerate the drug. Then I moved to an outpatient setting. This new treatment has really been different from any of my other treatments. Most importantly, this is the longest remission I have had. I am almost at the three-and-a-half-year mark, and I have never gone even close to this long on any other course of treatment. Also, compared to other treatments, the side effects have not been significant. I do get respiratory infections sometimes, but I take medications to manage that.

Thanks to this new immunotherapy, today I’m doing great.

I’m extremely grateful to the researchers who developed this immunotherapy. Thanks to the treatment, I am living a normal life. I do Pilates, go out with friends, spend time with family, travel, and pursue my hobbies. It has been nice to have a treatment that does not leave me feeling tired or bedridden.

I am also a huge advocate of clinical trials. There is no way to advance science without people being willing to participate in research studies. It is important for Congress to understand that I am here today because of a clinical trial that changed the trajectory of my disease. It is critically important that cancer research continues to be funded because of people like me; I would not be here today without this groundbreaking research. The more research that can be done, the more time people will get to spend with their families, watch their children grow up, and be productive members of society.