Vicki W. Jones: Relying on Progress Against Multiple Myeloma Progression

Vicki W. Jones never thought she would have cancer. Even though Vicki’s mother and grandfather died of cancer, they were in their 80s and were both smokers. Vicki, on the other hand, never smoked. So, it was a complete shock when she was diagnosed with multiple myeloma—a cancer she had never heard of—at the age of 51.

Before the diagnosis, life was good. Vicki had an exciting new job. She had a complete health checkup when she turned 50; everything seemed perfect. A year later, when Vicki went back for a regular checkup, the doctor noted that her “protein levels were high.” She thought it was probably because she had been on a high-protein diet, but her doctor insisted she see a hematologist. “The first inkling I had that something could be wrong was when I drove up to the building where the hematologist was located and it said Cancer Care Northwest,” Vicki recalled. After a few tests, Vicki was diagnosed with multiple myeloma on June 18, 2004.

“My husband and I were together in the clinic when the hematologist broke the dreaded news. I had never heard of multiple myeloma, but he said that 51% of people with that diagnosis were still alive after 5 years. And I thought, still alive, but in what shape? Are they bedridden? Are they in miserable pain? Do they wish they were dead?” Vicki recalled.

“So I went home and prepared to die,” she continued. In preparation for the worst-case scenario, Vicki and her husband started to draw up a will and Vicki had to decide who would get her favorite possessions. “It was really sad to think that I would never know what it would be like to be an old woman,” Vicki remembered.

Nonetheless, Vicki started chemotherapy, which was the only treatment option available to patients with multiple myeloma at that time. “It made me lose all my hair. I was an emotional train wreck. I am really glad that my husband was there to support me,” Vicki said. Despite all the side effects, chemotherapy worked. In about 3 months or so, Vicki stopped chemotherapy and, later, underwent a stem cell transplant. However, she only had a partial response and her cancer relapsed.

For the next several years, Vicki received many treatments. “I would be on a drug, and it would work really well. But I would slowly relapse. Fortunately, a new drug would become available. This kept happening over and over. Every relapse was met with a newly approved treatment. Not everybody responds to everything, but I responded to each of them, which is really lucky. And even though I never had complete remission, my response to different drugs lasted from 1 year to 4 years and they kept me going that much longer,” Vicki said.

Vicki has been studying myeloma ever since her disease was diagnosed. She read everything on myeloma, asked the doctor every question she could think of, attended every seminar, and watched every webinar. Now, Vicki is a myeloma coach for the HealthTree Foundation, where she helps other people with myeloma cope with the disease. In 2019, at a scientific meeting, Vicki learned about talquetamab, a new immunotherapeutic that was in early testing.

“I followed the development of this drug for the next several years. As the studies went on and results came in, it seemed to work really well. I was on belantamab mafodotin-blmf, which worked for some time, but my cancer eventually relapsed. I suggested talquetamab to my doctor,” Vicki recalled.

Since October 2023, Vicki has been receiving talquetamab. Because talquetamab can cause serious side effects, Vicki had to be in the hospital and monitored carefully for 10 days. Fortunately, Vicki didn’t have any side effects. “I made popcorn at night and watched movies. It was a relaxing stay. But I don’t want to downplay the seriousness of possible side effects because they can be life threatening,” Vicki cautioned. “Also, talquetamab is really difficult to get in a community setting. It is awful to think that people who live in remote areas and might need this drug do not have access to it.”

Vicki has had some side effects from her treatments over the years. “Some days, myeloma is a physical challenge, and some days it’s a mental challenge. Although I have not experienced very bad side effects from treatments, my bones did become fragile. I have had some broken ribs. I’ve also had some fatigue, weight gain, weight loss, blurred vision, loss of taste, and difficulty swallowing, but nothing that I could not deal with. I have been on talquetamab 10 months now, and I’m just starting to get my sense of taste back,” Vicki said.

Living with cancer for more than 20 years has given Vicki an amazing outlook. “There are two words I use all the time. One is ‘progress’—that’s what cancer research is making, which is wonderful. The other is ‘progression,’ which is what my disease is always doing, which is horrible. I am incredibly lucky that progress in cancer research has been faster than the progression of my disease. Without that I wouldn’t be here. And, I am so grateful.

Oh, and about my initial remorse over not getting to grow old. When I catch myself in the mirror, I’m shocked to see what I look like. But I have to say, I love every wrinkle and every gray hair because I am still here! Against the odds I’m still alive! I am loving life. I want to keep doing that.”

Vicki’s message to lawmakers and policymakers is straightforward: “I work really hard to live well with cancer. I might even make it look easy. But trust me, you do not want this for yourself or your loved ones. I know there are some in Congress who know this firsthand. So I truly hope you will do everything you can to fund cancer research. We’ve already got the momentum. So many things have improved in the last 20 years. We’re making progress. We can’t let that stop. We can eradicate this beastly disease.”