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Top Doctors / Maryann Salvadore’s journey

Outliving the prognosis over and over



Photos by Stephen Gabris

 

In summer 2009, Maryann Salvadore was working in her chocolate shop when she reached for something on a high shelf, sneezed, and felt a pain in her side. Bloodwork hadn’t explained her previous vague symptoms of fatigue and breathlessness, but now x-rays did: a large tumor had destroyed three of Salvadore’s ribs and was causing an extreme immune response. A PET scan revealed eight more tumors, more than ninety percent cancer in the bone marrow, a fractured femoral head, multiple fractured ribs, and lytic lesions throughout her skeleton. The diagnosis: aggressive, late-stage multiple myeloma.

 

“Multiple myeloma is a blood cancer, but it also causes lytic lesions that weaken bones and plasmacytomas that usually form around bones,” Salvadore explains. “There is no reason for me to have this. It affects more men than women, more African Americans than Caucasians. It’s mostly found in people over sixty and is linked to people who have exposure to chemicals, like petroleum products, fertilizers, or radiation. I have no history of cancers in my family, so there is no reason I have it; I just do.”

 

“Maryann first came to Roswell Park after being diagnosed with multiple myeloma in 2009. I’ve had the pleasure of knowing and caring for Maryann since 2010,” says Kelvin Lee, MD, Jacobs Family Chair in Immunology, senior vice president for Basic Science, and staff physician, Roswell Park Comprehensive Cancer Center. “She really is one of my very favorite people. There is still no cure for multiple myeloma, but, thankfully, treatments have improved dramatically over the last decade or so.”

 

At Roswell, Lee’s team told Salvadore that the disease was incurable, and their intention was to provide the best quality of life they could, for as long as possible. “They educated me on this disease,” she says. “My form of disease continued to evolve, so I always had multiple oncologists consulting and treating me. Communication was easy among the doctors—many were on staff at Roswell and my outside oncologists worked with my Roswell doctors and shared information as we faced many crises.”

 

Over the next several years, these crises meant cancer in the blood, tumors breaking bones and impairing bodily functions, and organs compromised for want of access to healthy blood. The early days were marked by emergency admissions, transfusions, and radiation treatments. “After almost every radiation or chemo [my husband] Mark and I would stop at the nature preserve near my house,” Salvadore says. “To my mind, I was taking in poisons/radiation to kill my cancer and walking among nature—fresh air—I felt helped balance out all the toxic stuff. Even when I could barely walk, I leaned heavily on Mark and did short walks. Throughout it all, my team was amazing and would call me nights and weekends to check on me and keep up. There were near-death experiences, and I know how fortunate I am to have survived.”

 

From the start, Salvadore’s doctors presented her with options and allowed her to choose what she felt was the best course. She soon realized that to make the best choices, she needed more than a basic education. Her treatment was a constant balancing act between the disease’s activity and treatments using drugs or radiation. She was monitored frequently, so if something wasn’t working, they knew quickly and could alter course. Meanwhile, she closed her business—Victoria’s Sweet Shoppe—and put her energies into staying alive. That began with lots of research.

 

“I found the MMRF [Multiple Myeloma Research Foundation], which specifically raises money to pay for research for multiple myeloma for info on clinical trials, emerging therapies, and new possibilities,” she says. “The IMF [International Myeloma Foundation] is an educational foundation helping patients learn about the available therapies, understand side effects, and share experiences. I also read every press release about drug trials. This information helped me understand—to the degree a lay person can—my disease and to be a realistic and informed participant in my health. In addition, every appointment I had, I asked questions of each nurse, physician’s assistant, and doctor assigned to me. I learned different things from each source, which helped me better understand what I was facing and better prepare me to make difficult decisions.”

 

Physician Assistant Kimberley Celotto and Dr. Kelvin Lee, of Maryann Salvador's care team.

 

“Maryann has always been very involved in her own care. She’s very knowledgeable about multiple myeloma, articulate and honest about what she is experiencing, and lets her care team know how she feels about different treatment options,” says Kimberly Celotto, R-PAC, physician assistant with the myeloma team, Roswell Park Comprehensive Cancer Center. “She has also made invaluable contributions as a member of Roswell Park’s Patient and Family Advisory Council, helping us to be as effective as possible in caring for every patient.”

 

Though difficult health challenges and an unstoppable disease can make it tempting to go for broke on aggressive treatments, Salvadore was reluctant to use older treatments—even if they were successful for others—because she’d discovered that the course of her disease didn’t follow an expected path. “My team always supported my desire to avoid older chemo drugs and focus on novel targeted therapies and immunotherapy,” she says. “They always suggested the most proven and research-backed options first, understandably, but we spent time discussing my options at every appointment. Things would change often, and they were always open to my getting second options and welcomed perspectives from my other oncologist in Florida. I had hematology, immunology, orthopedic, and radiation oncologists all consulting with me and each other, sharing information and opinions. There were times when their opinions differed, but having done research, listened to experts, and knowing my own risk tolerance helped me choose treatments that maybe other patients would not. I was never comfortable being passive and just following doctor’s orders; I needed to understand the process and be an active participant in fighting my cancer.”

 

“Myeloma is a difficult disease that presents in a lot of different ways and can be notoriously hard to manage and treat,” says Celotto. “Being part of Maryann’s care team has reminded me of how important it is to welcome patient feedback and empower the people you are caring for to be their own advocates, and how much a multidisciplinary approach with a lot of different experts and specialists weighing in can improve care.” Adds Lee: “What I have learned from Maryann is the great importance of listening to patients, about where they are now and where they want to be. Those are important lessons.”

 

“My mindset was to extend my life so I could share more time with my son and husband,” says Salvadore. “When I was diagnosed, my only child was just twelve. A couple of weeks ago, my first oncologist recalled with true delight my first conversation with him where I told him I wanted to live to at least see my child start college, and this year I watched him graduate with his bachelor’s degree. That was a strong motivation; I didn’t want to miss being there to watch my son grow up.”

 

But even strong motivation can’t offset the grueling effects of constant treatment. “It’s hard, painful, and exhausting,” Salvadore says. “The challenges are physical, but the emotional challenges often aren’t mentioned. I’m lucky to have strong support from my husband, friends, and family. From day one, nobody ever said much about how things were going because we were constantly putting out fires, so to speak. There were so many ups and downs—awful things to list—but when I wasn’t responding as hoped, we all knew it. There are no secrets and we always spoke honestly. My providers shared their expertise and guided but, in the early years, things were so bad that no one thought I had a lot of time.”

 

Salvadore is convinced that having access to Roswell is the reason she’s alive today, more than ten years after her diagnosis. In all that time, she never stopped asking questions or reading the newest research press releases. “There were many new drugs that were FDA-approved in the ten years since my diagnosis,” she says. “Drugs that were in clinical trials at Roswell helped me early in my treatment; had I not been there, it’s likely they would not have been available to me. The newest therapies were always on the table since they were running clinical trials and research on immunotherapy.  Had I not gone to a cancer center, I believe my disease or using older treatment methods would have killed me early in the journey. Having the top immunology doctor at a cancer center guiding me was a game changer.”

 

Ultimately, it was one of these novel immunotherapies that ceased new cancer activity. “Maryann had very unusual myeloma in that there were two different ‘tribes’ of myeloma, one that lived in her bone marrow, and one that lived outside of her bone marrow,” explains Lee. “Each tribe required a different treatment approach. But fortunately, the treatments were effective and Maryann has been in a complete remission since 2015.”

 

“There is no cure, so my team expects that I will relapse,” Salvadore says. “I continue to be tested and scanned to be on guard for that. I have too many health issues to list, pain and fatigue are ever present, but I feel fortunate; so many people who were strong, smart, prayed, and did all the ‘right’ things have died while I am here. Cancer isn’t fair, and I never lose sight of that. I don’t know what lies ahead but, with my medical team and emerging immunotherapies, I like my odds.”

 

When Salvadore was diagnosed, therapy agents that manipulate immune systems were new, but more of these targeted immunotherapies are developed, tested, and FDA-approved each year. If Salvadore does relapse, the options available to her are vastly increased, and she believes these targeted therapies—as opposed to older chemo treatments that attack the entire body—are responsible for her survival. She’s also aware that she’s fortunate to have had her body respond the way it did and gets riled at the tendency toward patient blaming.

 

“I can’t tell you how frustrating it is to hear non-patients comment on how one person is alive because they said the right prayers or ate extra blueberries; I kid you not,” she says. “Better, stronger people than me have died because there were not the right treatments available for their disease yet. When some treatments were not working, and things were looking bleak, I had people ask me, ‘But you’re in treatment; why isn’t it working? My work friend had a different cancer and only did three months of treatment.’ Honestly, who says that to a person fighting for their life? That’s right; well-meaning people who don’t understand that not all cancers are the same; you can’t compare them as if they are.”

 

Salvadore also finds it difficult to explain to non-patients—or even patients whose diseases followed a clearer course—that the journey doesn’t have an either/or ending. Often, treatments turn terminal cancers into chronic conditions: limbos of maintenance drugs, continued testing, and ongoing health issues. And that can still be a fortunate outcome.

 

“There were times where I was honestly dying, but I got lucky and outlived my prognosis over and over,” she says. “I’ve had people say, ‘You really proved your doctors wrong!’ and I always clarify that my doctors are so very happy that I am still here against all odds. Their goal isn’t to correctly predict a death timeframe, but to extend my life at the best quality possible. Patients have it so very hard, but they need to educate themselves and learn to communicate effectively with medical personnel to become their own best advocate. I appreciate the time I have and will always fight for more. There is so much hope.”

 

Taking charge of one’s own treatment

 

So much of Maryann Salvadore’s continued survival has been dependent on her being an active participant and advocate for her own treatment. Not content to just take any advice given her, she researched treatments and new therapies, discussed them with her Roswell team and second and third opinion doctors she sought out herself, and never stopped trying to learn all she could about her disease. She also kept records to look for patterns in her own disease, and trusted her body enough to know when something “wasn’t right” so she could advocate for what she needed with clarity and information. Here’s her advice for someone newly diagnosed:

 

• Find an oncologist at a cancer center who specializes in your specific cancer, preferably a researcher.

 

• Get a second opinion. This does not insult your doctors; they want you to be healthy.

 

• Learn about your disease from a research foundation specifically for patients with your type of cancer; they will have the most up-to-date information and you can revisit that information until you understand the language of your disease.

 

• Get comfortable speaking to your team of doctors.

 

• Always have a list of questions and concerns, and pen and paper to take notes, at every appointment.

 

• Make your health and well-being your priority and take an active role in your treatment. People do more research when car shopping than they do when it comes to a cancer diagnosis that is threatening their life.

 

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