Every year, Nancy Demers celebrates two birthdays. The first marks the day she was born: August 6, 1943. The second — March 20, 2015 — is the day the then-71-year-old Connecticut resident received a stem cell transplant at Dana-Farber Brigham Cancer Center and the start of a healthy new life.
Eighteen months prior, in September 2013, Demers had routine bloodwork that resulted in a diagnosis that was anything but routine. She learned that she had myelodysplastic syndrome (MDS), a bone marrow disorder in which blood cells don’t form or work properly. Until recently, MDS was referred to as preleukemia because many patients go on to develop acute leukemia.
While some cases are caused by exposure to toxins or previous chemotherapy treatment, most MDS cases occur in people over the age of 60 and aren’t linked to any known causes. The only known cure is a stem cell transplant.
Demers had heard of the condition because “Good Morning America” anchor Robin Roberts was going through a stem cell transplant for MDS at the time. She couldn’t believe she now had it, too.
“I was totally shocked,” Demers says. “I had no symptoms whatsoever.”
Trials leading up to transplant
Since Demers’s case was caught early, her local doctor closely monitored her condition.
Fatigue soon set in. In March 2014, she retired from her family’s grocery store in Watertown, where she’d worked since age 18. Her family gave her an Alaskan cruise as a retirement present, but the trip had to be postponed indefinitely as Demers’ condition declined further with each passing month. She needed frequent blood and platelet transfusions.
“I told my granddaughter I was like a vampire,” she says. “I would be sluggish going into the transfusions and come out of there feeling energetic and wonderful.”
In July, Demers was hospitalized with a severe case of pneumonia; a blood test showed she was near the threshold for leukemia.
She had already consulted with one regional cancer center that rejected her as candidate for a stem cell transplant because of her age. A family referral brought her to Dana-Farber. Its Adult Stem Cell Transplantation Program, founded in 1972, is one of the largest and most experienced in the world. The program is also highly experienced in stem cell transplants for older adults.
“They said, ‘We can help you, but you have to get better first,’” she recalls.
In September 2014, she received remarkable news: Her MDS was in remission. It was the green light she and Dana-Farber needed to start planning her stem cell transplant.
‘I want to live’
Demers met with Robert Soiffer, MD, the transplant physician at Dana-Farber Brigham Cancer Center who would oversee her transplant.
“When he walked in the door, he exuded this confidence,” Demers says. “I shook his hand and said, ‘I want to live.’”
Demers signed on for not only the transplant but also for a clinical trial that tested anti-rejection treatments to prevent graft vs. host disease, a condition that sometimes occurs after transplant in which the donated stem cells view the recipient’s body as foreign and attack the body.
“Someone had to participate in clinical trials before me in order for me to be where I was,” she said. “I felt I had to do the same.”
In December, Demers learned she was matched with a stem cell donor: a 35-year-old woman from Portugal. The transplant would take place in March. Nurse navigator Irene Heffernan answered all her questions leading up to the big day. Her three kids leapt into action to make her home as germ-free as possible since she would be susceptible to infection for a period of time after the transplant: They scrubbed from top to bottom, replaced bed linens and towels and found foster homes for her dog, Sam, and cat, Boo. Her son set up an Excel chart of who would cover which shifts with Demers in the hospital.
As the day approached, Demers received conditioning chemotherapy to make room in her bone marrow for her new stem cells to engraft and begin forming healthy new blood cells. On the morning of March 20, a CD of soothing choir music (on which Demers herself had sung) played in the background as a nurse wished her “Happy Birthday” and pressed the button to begin the transfusion and the new chapter in her life.
‘I’m very blessed to be here‘
After two weeks of isolation in a hotel room to reduce her risk of infection, Demers returned home. Her recovery had some rough patches. She had an allergic reaction to an antirejection medication. She suffered a mini stroke that temporarily blinded her. And she has had a few bouts of graft vs. host disease. The care team at Dana-Farber is experienced with handling these kinds of unfortunate side effects and was by her side to see her through these challenges.
“Nurse practitioner Amy Joyce has been my go-to person with any questions,” Demers says. “She’s very caring and always takes the time to explain everything to me.”
Gradually, Demers’ strength and stamina returned. She resumed her gardening and crafting hobbies that bring her so much joy. And in April 2016, she finally took her Alaskan cruise.
“Nancy is a spitfire, with a lot of energy and a positive attitude,” Soiffer says. “It’s a tough decision to undergo a transplant, especially for older patients. She was very brave. She’s a perfect example of someone who faced a fatal disease and, through the transplant, we were able to cure her.”
Demers, now 78, is extremely grateful for the extra years she has been given with her family, which has grown to include six grandchildren and four great-grandchildren. She helps look after her two youngest great-grandchildren, who were born after her transplant.
“I take care of them, do crafts with them, and I have the best snack pantry around,” she says. “I’m very blessed to be here.”