Darlene Pruess: Facing Multiple Myeloma With Help From a Supportive Community

In April 2020, Darlene went to see the doctor for severe pain in her ribs. Initially, her doctor thought it was a problem with her gallbladder. And because this occurred at the start of the COVID-19 pandemic, she was sent to the emergency room for a full checkup, which ultimately led to her diagnosis of multiple myeloma. “It was quite a shock, especially hearing multiple myeloma,” she said. She was worried that the blood cancer had limited treatment options and, currently, no cure.

Darlene received care at the Moffitt Cancer Center in Tampa, Florida. The doctors started her on a treatment regimen right away. She received six cycles of cyclophosphamide (Cytoxan), bortezomib (Velcade), and dexamethasone, also referred to as the CyBorD regimen. This was followed by a bone marrow transplant. Since the transplant, Darlene has been on many different treatment regimens. “I’ve been back and forth in and out of remission on different recipes, so to speak.” She is currently receiving cyclophosphamide, pomalidomide (Pomalyst), and dexamethasone.

Darlene experienced some financial stress during her cancer journey. She was diagnosed right around the time as she was planning to retire. “That kind of answered that as far as working, but it still was stressful. Now I’ll be on Social Security and how am I going to make a living? It was kind of one foot in front of the other,” Darlene recalled. She is grateful that she had health insurance coverage for most of her treatments. She also received some foundation support for her care.

Even though Darlene has experienced several side effects from her treatments, she is currently doing well. She is living her life, enjoying her favorite activities, swimming, biking, walking, and staying active. “I feel great. I may be in remission again, as we speak,” she said.

Darlene feels very fortunate that her health care providers communicated effectively with her, keeping her fully informed about next steps along her treatment path. “The oncologist who diagnosed me, I still see her today. They’re just very responsive. They answer all my questions and explain things to me. I understood the steps, what we were doing, and why we were doing them,” she said.

It was, however, difficult navigating cancer by herself. “The hard part was managing all of that. It is like a full-time job, especially being single,” she added. “However, I did have a lot of friends both from my local LGBTQ community as well as outside the community.” She is extremely grateful for the tremendous help she received from her friends. “Everybody was just wonderful and helpful. It’s hard to ask for help, but essential when you’re going through this, and they made it very easy.” Her experience with cancer has also made Darlene a strong advocate for other patients who might be going through the same journey as she did.

Darlene’s message to cancer researchers is to continue to work on better new treatments. “It is wonderful that, even though I continue to go back and forth in remission, they have individual treatment recipes just for me that work. So just keep it going,” she said. She also wants more research in the sexual and gender minority population. “I would be very comfortable and happy to be part of that data,” she said. Additionally, she wants policymakers to continue supporting cancer research. “Definitely more money for research. That is a big thing.”