Judy M. was born with a heart defect. Childhood rheumatic fever damaged her heart further, and by 24, she had to have heart surgery. At that time, the surgeon told her that most people lived three to five years following that type of surgery. Fifty years later, Judy received news she never expected. She was diagnosed with pancreatic neuroendocrine carcinoma, a rare form of pancreatic cancer that typically occurs around age 60.
In March 2018, Judy was in the kitchen with her husband of more than 40 years, making soup for a church supper.
“I was peeling parsnips and started experiencing classic heart attack symptoms – sweating, chest pain, dizziness, arm pain. With my cardiac history, I just thought it was my turn in the barrel,” said Judy. “We trotted to the hospital, and they did a CT scan and other tests. I remember the emergency department doctor sat at the end of my bed and said my cardiac enzymes were fine. He didn’t see any heart enlargement, but there was something on my pancreas.”
She was admitted to the hospital for further testing and received her cancer diagnosis on Friday morning. Hours later, she had surgery to remove 40% of her pancreas and her entire spleen.
“Pancreatic cancers are notorious for not having specific symptoms until way into the process. I was fortunate that it was discovered at stage 2,” Judy said. “The powers that be decided the cardiac symptoms were due to the tumor being rather large – about the size of an orange – and annoying its neighbors. It was putting pressure on the heart and other organs around it.”
Judy knew life was about to change, but she wasn’t giving up. She had her husband by her side, her daughter, her son, her daughter-in-law, her four grandchildren nearby, and her faith.
A Four-Letter Word for Cancer
“I was in my hospital room at Littleton Hospital. The hospitalist came in, and she said, ‘I have referred you to Rocky Mountain Cancer Centers [RMCC] because they are the best ones in this area,’” Judy said. “It was a great referral.”
She quickly began seeing Dr. Sujatha Nallapareddy, board-certified medical oncologist and hematologist at RMCC. About a month after surgery, she started chemotherapy and continued this treatment through the summer of 2018.
As a former educator, Judy thrives on having as much knowledge as possible. Facing pancreatic cancer is no exception.
“I keep a notebook and come to every visit with questions,” Judy said. “I have come in with some weird ones, and Dr. Nallapareddy has always answered them. No question is too dumb to ask. No question is too silly to ask. Sometimes she answers with a laugh and a smile, but they’ve always been answered. For me, that’s essential. I am innately curious, and I work best with information. She pours in as much information as I want.”
While receiving chemotherapy, the pancreatic cancer metastasized to Judy’s liver.
“I was on chemo!” Judy said. “That’s not supposed to happen. It went into my liver, and it is multifocal, which means there’s not just one tumor. There are multiple lesions in the liver.”
It became clear that this cancer was not going to be cured. Instead, with the help of the RMCC team, Judy started looking for a way to manage it long-term.
“There’s a four-letter word associated with cancer: wait. You wait for testing. You wait for results. You wait for your doctor’s appointment. You wait to see if the medicine will be helpful – a lot of waiting. You don’t have much power over waiting or when the results will come in. You just wait.”
Finding the Right Long-Term Treatment Options
Pancreatic neuroendocrine tumors, also called islet cell tumors, account for fewer than 2% of pancreatic cancers. Because of the rarity, discovering the best type of treatment for Judy was challenging.
Dr. Nallapareddy recommended trying a medication called Keytruda, or pembrolizumab. This drug is a type of immunotherapy that strengthens the body’s natural immune response to cancer cells. It’s given through infusion.
Keytruda was initially developed to treat other types of cancer. In 2017, the drug gained FDA approval for treating the rare type of pancreatic cancer Judy has. However, it’s still not widely recognized as a treatment for pancreatic cancer. Because of this, Judy had difficulty getting the medication covered by insurance.
Dr. Nallapareddy and other team members at the Littleton RMCC location petitioned the medication manufacturer and explained the situation. The manufacturer agreed to provide Judy with the medication on a compassionate basis. This means that Judy was allowed to use the drug to manage her cancer because of the lack of other potential treatment options.
Judy has now been on Keytruda for two years.
“My official status is grossly stable,” Judy said. “I think of it as a gross national product – my overall condition: some lesions growing, others staying the same, others shrinking.”
Judy is happy with the treatment outcome so far. However, the treatment is not without side effects. “For me, the most annoying side effect has been fatigue – being tired all the time no matter how much sleep you get,” Judy said. “For a while, I was itching all over the place, but I never had to go through nausea and vomiting. They weren’t my side effects during treatment.”
Dealing with the Storm
“My image of cancer is not ‘Let’s get those white blood cell soldiers out there fighting!’ That’s not my image. That makes me responsible for whether or not the drug works – whether or not the cancer gets better,” Judy said. “I’m a farm girl. When cattle are in the pasture, and a storm comes, they turn their backs to it and let the storm roll over them. When it’s over, they put their heads back up, look around, and move on. That’s what I do. If a bad day comes or a crisis happens, I just put my head down and let it roll over me. I take responsibility for my own behavior but not whether or not the cancer goes into remission or is cured because that’ll never happen. I will never go into remission.”
Faith, Family, Friends, and RMCC
Though she has survived many storms, Judy knows she hasn’t done it alone.
“My faith and people who have supported me in my faith journey through this have been very important,” Judy said. “It’s easy to feel God has somehow deserted you. To ask, ‘What did I do to deserve this?’ I haven’t gone that route. I didn’t do anything. This is spontaneous cancer. I never smoked. I’ve had a pretty decent lifestyle. I did genetic testing. There’s no reason why this started to grow. I have no control over that. I’ve always known that my friends, my faith, and my family are the most important things in life, and this experience has reinforced it. Sometimes when people get ill, they want to hide away and deal with it on their own. For me, I find my friendships are essential in getting through this, especially since the cancer will never go into remission. This is it.”
The team at RMCC has also become a source of strength and support for Judy over the past few years, and she’s seen others receive the same compassionate care.
“The people at RMCC ask about how your family’s doing, how things are going,” Judy said. “[They] remember the last time you mentioned something. I’m not just a number. I am a whole person when I go there. They always honor my feelings, my questions, my history. I just had coffee with another RMCC patient. He has a different doctor but the same experience of being treated as a whole person and not as a cancer cell.”
Living with Pancreatic Cancer
“I get up in the morning with a general list of what I’d like to get done,” Judy said. “Then, I maneuver things around according to my energy level. Sometimes, you’re just a pile of human flesh moving from one chair to another. On other days you have the energy to do laundry, cook, and mow part of the yard. But you never quite know what it’ll be like when you get up. I reassess every morning and work from there.”
Dr. Nallapareddy and the team at RMCC continue to follow Judy’s care, reassessing her treatment plan as needed. The RMCC team does regular testing to gauge how well the treatment is working. So far, it is going well. Judy plans to stay on the Keytruda as long as it continues to work for her.
With the help of RMCC and her loved ones, Judy is adjusting to life with pancreatic cancer.
“My hubby’s nickname for me was the Energizer bunny, always on the go,” Judy said. “I spend more time in my swing – watching the open space, listening to the birds, or reading. Just giving myself the space I need for thinking through things. I’m still very active, but sometimes, that’s not the best route for me, and I have to stop for a while. Taking a break wouldn’t have happened before.”
Looking Toward the Future
Still, Judy is clear that adjustment doesn’t mean giving up. Not for her and not for the team at RMCC.
“RMCC advocated for me and got me the medication that has kept me alive for the last two years,” Judy said. “Otherwise, we wouldn’t be talking. My first goal was to see my oldest grandson graduate high school. He’s now a sophomore in college. My next goal is to be at the graduation of the next grandchild, who graduates this year. My long-term goals are to see my two granddaughters graduate. I’m after Ruth Bader Ginsberg’s record. She lived ten years with pancreatic cancer. I’ve now gotten four – six more to go and I will have the opportunity to watch the youngest graduate.”
Learn more about how Rocky Mountain Cancer Centers can help you. Request an appointment with an RMCC oncology expert.
