Understanding Pancreatic Cancer
- A 50-year-old mom of two named Kathleen experienced symptoms of dark urine and constant itching across her body. She later discovered it was pancreatic cancer. She ultimately beat the disease after undergoing surgery, chemotherapy, and a clinical trial.
- Pancreatic cancer is a type of cancer that forms in the pancreas. It is more challenging to treat because symptoms usually don’t present themselves until the cancer has spread or metastasized. Symptoms may include weight gain, back pain, and jaundice.
- Early-stage pancreatic cancer tumors don’t appear on imaging scans, and people typically don’t experience symptoms until the disease has progressed. The pancreas’ location in the abdomen makes it harder to find tumors.
- Treatment options for pancreatic cancer may include surgery, radiation, chemotherapy, and targeted therapy.
- The SurvivorNet Clinical Trial Finder and websites called Clinicaltrials.gov and PubMed are great resources to use if you’re considering experimental treatment for a disease you or a loved one are battling. These databases can also help you find doctors who specialize in your disease.
Now cancer-free, the mom of two and loving wife named Kathleen, is sharing her inspiration story with Johns Hopkins Medicine to spread awareness for the disease and the importance of knowing the signs.
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When she received her diagnosis, her doctor recommended Johns Hopkins for surgery. One day later she was transported to Johns Hopkins to meet with iconic surgeon Dr. John Cameron before having him surgically remove her pancreas, part of her stomach, and some lymph nodes.
The procedure later revealed Kathleen’s cancer had spread to her lymph nodes. She ultimately needed to undergo chemotherapy to kill the cancer cells.
Additionally, Kathleen was told by a gastrointestinal cancer expert, Ross Donehower, M.D., about “clinical trial of a new cancer vaccine developed at the Kimmel Cancer Center by a leading pancreatic cancer researcher,” Johns Hopkins explains.
Kathleen, who became the eighth person to the the vaccine and only received two does of the vaccine due to a blood-clotting condition she had, recounted, “He said it might keep my cancer from coming back.”
Thankfully, the vaccine doses were successfully, and Kathleen, who is now 75 years old is still cancer-free. As for her successful treatment, Kathleen, a grandmother of four, recalled to John Hopkins, “I remember the doctors telling me I had the strongest immune response of anyone in the clinical trial.”
Amid her cancer treatment, Kathleen was worried she wouldn’t live to see her grandchildren grow, so she began making bunnies and dressing them up in cute doll-wear. However, while remaining resilient and optimistic, Kathleen has been able to be around for her loved ones.
She also remains grateful for the doctors that helped her, saying, “I can’t say enough about them. They are wonderful, top notch.”
Learning about Pancreatic Cancer & Treatment Progress
Pancreatic cancer is an aggressive disease that is difficult to detect because symptoms, including jaundice and weight loss, typically present at a later stage in the cancer’s development. In a previous interview with SurvivorNet, Dr. Anirban Maitra, the co-leader of the Pancreatic Cancer Moon Shot at MD Anderson Cancer Center, explains what he typically sees when patients develop this disease.
“Because the pancreas is inside the abdomen often doesn’t have symptoms that would tell you that something is wrong with your pancreas,” he says. “By the time individuals walk into the clinic with symptoms like jaundice, weight loss, back pain or diabetes, it’s often very late in the stage of the disease.”
While pancreatic cancer may not present symptoms early on, it’s still crucial to be aware of signs of the disease. The National Cancer Institute identifies the following symptoms:
- Dark urine
- Pain in the abdomen
- Unexplained weight loss
- Light-colored stools
- Loss of appetite and fatigue
Treatment options for pancreatic cancer may include surgery, radiation, chemotherapy, and targeted therapy.
Detecting Pancreatic Cancer Early Is Crucial
Parents, siblings and children of someone with pancreatic cancer are considered high risk for developing the disease because they are first-degree relatives of the individual. PGVs (pathogenic germline variants) are changes in reproductive cells (sperm or egg) that become part of the DNA in the cells of the offspring. Germline variants are passed from parents to their children, and are associated with increased risks of several cancer types, including pancreatic, ovarian and breast cancers. Germline mutations in ATM, BRCA1, BRCA2, CKDN2A, PALB2, PRSS1, STK11 and TP53 are associated with increased risk of pancreatic cancer.
Jessica Everett, a genetic counselor at NYU Langone’s Perlmutter Cancer Center, encourages people in this category to look into possible screening options.
“If you’re concerned about pancreatic cancer in your family, start by talking to a genetic counselor to learn more about your risk and what options you have,” Everett said.
In addition, note that up to ten percent of pancreatic cancer cases are caused by inherited genetic syndromes. So, if two or more members of your family have had pancreatic cancer, or if you have pancreatic cysts, it’s worth asking your doctor to check for pancreatic cancer since you’re at high risk.
Progress has been made over the last few years in the world of pancreatic cancer treatments. One clinical trial recently found that the drug Onivyde, in combination with chemotherapy in the so-called Nalirifox regimen, helped patients live longer compared with chemotherapy in previously untreated patients with metastatic pancreatic ductal adenocarcinoma (mPDAC), according to Ipsen, the pharmaceutical company that bought the drug.
“The prognosis for people diagnosed with pancreatic cancer is extremely poor and we plan to submit these new findings to the regulatory authority as, if approved, we believe this regimen could offer up an important new treatment option for people living with an aggressive and hard-to-treat cancer,” Howard Mayer, Executive Vice President and Head of Research and Development for Ipsen, said. “We thank the patients who participated in the study, their families and their healthcare teams.”
The drug is currently approved in the U.S., Europe, and Asia in combination with fluorouracil and leucovorin as a treatment for mPDAC after disease progression and following gemcitabine-based therapy.
Another example of progress being made comes in the form of immunotherapy, a type of cancer treatment that uses your own immune system to fight cancer.
“Up until now, immunotherapy hasn’t had a big role,” Dr. Allyson Ocean, a medical oncologist at Weill Cornell Medical Center, previously told SurvivorNet.
Dr. Allyson Ocean explains why pancreatic cancer is so hard to treat.
A clinical trial led by researchers at the Perelman School of Medicine at the University of Pennsylvania, and sponsored by the Parker Institute for Cancer Immunotherapy, found “combination of chemotherapy with an immunotherapy meant to unleash the anticancer capacity of the immune system was effective against one of the hardest targets in cancer care, pancreatic cancer,” said Penn Medicine.
“The researchers found that in 34 patients with advanced pancreatic cancer randomized to receive the immunotherapy nivolumab with two chemotherapy drugs, nab-paclitaxel and gemcitabine, had a one-year survival rate of 57.7 percent, significantly greater than the historical average of 35 percent with chemotherapy alone,” the institution said.
Dr. Benjamin Musher, the director of medical oncology at the Dan L Duncan Comprehensive Cancer at Baylor St. Luke’s Medical Center, recently said there were currently multiple “home-grown clinical trials testing novel immunotherapies in all stages of pancreatic cancer studies underway at Baylor St. Luke’s.” But only about 5 percent of patients with pancreatic cancer participate in such studies.
“We know that we are not going to improve outcomes without more patients enrolling,” Musher said.
Understanding Clinical Trials
Clinical trials are also available for eligible cancer patients if other treatment options don’t seem to work. A clinical trial can be defined as a research study that compares the most effective known treatment for a specific type or stage of a disease with a new approach.
Participating in one does not guarantee you will get the most effective treatment and they are certainly not for everyone, but it does give you the chance to potentially access new, cutting-edge treatments while advancing science.
Before getting involved in a clinical trial, talk with your doctor(s) and consider the following general risks of enrolling:
- The risk of harm and/or side effects due to experimental treatments
- Researchers may be unaware of some potential side effects for experimental treatments
- The treatment may not work for you, even if it has worked for others
“Clinical trials are critical to the development of new therapies, and as we live through this extraordinary revolution in genomics, immunotherapy and targeted therapy, it’s clear that one of the most pressing needs for patients, clinical trials sponsors, and researchers is simply a better way to find patients,” SurvivorNet CEO Steve Alperin said.
“Even one percent more people successfully enrolled in clinical trials can change the world.”
If you’ve already decided that a clinical trial is right for you or you’re just beginning to explore your treatment options, you should know that SurvivorNet has a tool for you. The SurvivorNet Clinical Trial Finder: an A.I. driven tool for patients to find clinical trial options for treatment.
The tool is built on top of clinicaltrials.gov, a database maintained by the U.S. government that compiles privately and publicly funded clinical trials conducted around the world, and gives access to more than 100,000+ individual clinical trials, updated daily.
Academic vs. Community Cancer Centers
After a cancer diagnosis, there are a lot of factors to consider when it comes to where and how you’ll be treated. One of those factors is deciding whether to seek care at an academic cancer center or a community healthcare center.
When we say “academic,” we’re typically referring to larger, university-based cancer centers. Depending on where you live and what resources are available, these might be less common than community based cancer centers or local treatment centers.
Dr. Chul Kim, a medical oncologist specializing in lung cancer and thoracic tumors at MedStar Health in Washington, D.C., explained that both academic and community centers can offer standard cancer care.
“In terms of access to standard care, be it chemotherapy, targeted therapy, or immunotherapy, all those approved drugs are available for use regardless of where you get treatment or care,” he explained.
Standard care refers to delivering the appropriate treatment by standards formed based on current medical literature and national guidelines.
Academic cancer centers might have better access to ongoing clinical trials, but clinical trials are different from standard of care. Clinical trials seek to explore the effects of a new medication or compare new treatments to the current standard of care. Additionally, there is a significant amount of variability between different academic centers and community centers alike — making it difficult to make broad claims comparing the different cancer centers.
In summary, for a majority of cancers, whether you go to a community practice or an academic institution, you will have access to the standard of care for treatment. That being said, academic centers might have access to certain treatments — such as new medication — through clinical trials. Additionally, for very rare cancers or unique cases, you may be more likely to find a specialist at academic centers with experience in treating these rare cases.
Dr. Kim explained: “The clinical trial nowadays can also be conducted in the community-based setting. And so it’s not that it is exclusive to academic or university-based cancer center … so I would like to encourage you to discuss with your treating doctor what options there are.”
Contributing: SurvivorNet Staff
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