Patients with gastrointestinal cancers should be aware of specific side effects that might arise — and ways to prevent or ease them.
Peg Myrick has always been an optimist, living every day to the fullest. But when she was just 36, life threw her a curveball — a diagnosis of stage 4 colorectal cancer — that challenged her positive outlook on the future.
Six months earlier, Myrick had started experiencing abdominal pain, diarrhea, irregular bowel movements and blood in her stool. She visited her local hospital’s emergency room, where doctors performed a blood test and CT scan but found nothing alarming. It turned out that the cancer in her colon and rectum was too low for the scan to capture.
“I had been having symptoms for months, but my primary care physician told me that I was too young for colorectal cancer,” says Myrick, a resident of Richmond, Virginia. “They chalked my symptoms up to colitis due to stress, because I had just gotten a new job as an assistant principal at a high school.”
Finally, a colonoscopy in October 2016 revealed a large tumor stretching from the bottom part of her colon to the top third of her rectum. The cancer had also spread to her lymph nodes and throughout 80% of her liver.
Despite the shocking news, Myrick didn’t give up. She sought treatment at the Johns Hopkins Hospital in Baltimore, beginning with an aggressive chemotherapy regimen to try to shrink her cancer so it would become operable — a strategy not typically used with a tumor so extensive. The three chemotherapy drugs — irinotecan, oxaliplatin and fluorouracil (5-FU) — each cause potentially troublesome side effects. For instance, Myrick experienced cold sensitivity from oxaliplatin to the point that drinking anything with ice felt like swallowing shards of a Christmas ornament.
“I could only tolerate five rounds of oxaliplatin because the side effects were too much. I had neuropathy (numbness) in my hands and feet, along with cold sensitivity,” she says. “I stopped because, as someone who was diagnosed at 36, I didn’t want the neuropathy to become permanent.”
Wes Hensel, who in December 2017 received a diagnosis of stage 3b rectal cancer at age 34, also experienced numbness in his toes, which occurred following his sixth round of oxaliplatin. After discussing the benefits and risks of the drug with his doctors, he decided to stop the oxaliplatin infusions but continued his chemotherapy with fluorouracil. Like Myrick, Hensel’s young age was an overwhelming factor in his decision.
“My toes on both of my feet were basically numb, and I couldn’t risk getting neuropathy in my hands,” says Hensel, a Tucson, Arizona, resident whose rectal tumor went undiagnosed for four years. “I’m 35 years old, and I still need to work. I’m an engineer, so I need to be able to work at a computer and type.”
Peripheral neuropathy — injury to the nerves that causes weakness, numbness and pain — is a common side effect of oxaliplatin. Studies have found that the chemotherapy drug can cause nerve damage that may worsen months after treatment ends and sometimes even be permanent.
Although gastrointestinal (GI) complications are common problems for patients with any kind of cancer, individuals with GI cancers may experience a unique set of side effects due to the treatment type and tumor location. Patients who have had surgery for esophageal cancer can experience dumping syndrome, a condition in which food moves too quickly from the stomach into the small bowel. Surgery for pancreatic cancer can lead to longer-term side effects, such as problems digesting food and changes in taste.
Some side effects can be managed through medication, diet and rest. For example, as a proactive measure, Myrick and Hensel were each given three different antinausea drugs before their chemotherapy sessions. But other side effects, such as oxaliplatin-related neuropathy, lack an effective remedy, making ongoing surveillance and patient reporting of symptoms very important.
“Most patients who undergo GI surgery will have some lingering side effects. I explain to patients that it’s very rare that, after an operation, your GI system feels and works exactly the same,” says Dr. Thomas Clancy, associate chief of the Division of Surgical Oncology at Brigham and Women’s Hospital and co-director of the Pancreatic and Biliary Tumor Center at Dana-Farber/Brigham and Women’s Cancer Center in Boston. “There may always be some side effects, but the questions are: Can they be anticipated, will they be tolerable and can they be managed?”The three most common types of treatment for patients with GI cancers are surgery, radiation and chemotherapy. More recently, targeted therapy and immunotherapy have been used to treat certain GI cancers. The types and sequence of treatment differ depending on the location and size of the tumor and whether it has spread to other parts of the body.
Surgery to remove the tumor is the most common treatment for all stages of colon, rectal, esophageal, gastric and small intestine cancers that have not spread. In general, the more complex the procedure, the greater the risk of side effects, and there are a host that can happen with surgery for any health problem.
An issue unique to GI cancers is that, after removal of a tumor in the colon or rectum, the new connections made in the digestive system may not hold together properly, causing a leak that may lead to severe abdominal pain, fever, constipation and loss of appetite. If infection occurs, more surgery could be required. Patients should try to maintain their weight before surgery, since preoperative weight loss has been associated with an increased risk of leakage. Also, the findings of multiple studies show that smoking is a risk factor for leakage, since this affects wound healing.
Adhesions, or scar tissue in the abdomen that causes organs or tissues to stick together, can lead to twisted or blocked bowels (termed “bowel obstruction”). This problem, too, could require surgery, but can often be managed with resting the intestines for a few days by not eating, receiving intravenous fluids and sometimes using a tube through the nose into the stomach to remove the fluid normally secreted in the stomach. One way surgeons can prevent adhesions is by implanting bioresorbable membranes to act as a barrier between the organs of the abdomen.
Some patients have a colostomy procedure that brings one end of the large intestine out through an opening in the abdomen, called a stoma; waste collects in a bag outside the body. An ileostomy is a similar procedure that connects the lower part of the small intestine to the abdominal wall. Each requires lifestyle adjustments to find the best way of adapting for each individual.
Both Myrick and Hensel have permanent colostomies, which can bring their own set of complications. Myrick has had one full blockage and two partial blockages, which can be caused by a buildup of food in the stoma. Hensel has experienced skin irritation around his stoma but, fortunately, hasn’t had any blockages.
“In the situation of an ostomy, we recommend that patients stay hydrated, because you want to avoid constipation and obstructions. That requires some teaching and trial and error, such as finding out which foods work best for them,” says Dr. Syed Kazmi, an assistant professor at the University of Texas Southwestern Medical Center. “We can also give them stool softeners or laxatives so they don’t get obstructions, which can be dangerous and life-threatening at times.”
Aside from the physical aspects, ostomy surgery can affect mental health and body image. Patients commonly have anxieties about accidents, odor or noise soon after the procedure.
But in many cases, they learn to live with their new normal through training, education and discussion. Myrick and Hensel don’t feel nearly as restricted as they anticipated and mostly continue to live as they did before the surgery.
“Ostomy is a difficult thing. It’s a change in the appearance of the body, and it’s hard to imagine for someone who has never had something like that,” says Dr. Afsaneh Barzi, an associate professor of clinical medicine at Keck Medicine of the University of Southern California. “But I think people learn how to get comfortable with it after a while. It’s something that nobody wants, but ... the alternative (is) having the cancer in you or dying from the cancer.”
Removing certain parts of the GI tract can mean that patients must take supplements to replace enzymes that are no longer produced or vitamins that cannot be absorbed. Many patients with pancreatic cancer who undergo surgery cannot produce the enzymes needed to digest food properly and must take pancreatic enzyme pills. Those who have had part of their stomach removed need to have their vitamin blood levels tested regularly and should take vitamin B12 supplements.
“Patients with upper GI cancers shouldn’t always focus on carbs, proteins and fats but, rather, micronutrients like zinc, iron, B12 and copper, which should be monitored very closely,” Kazmi says. “They become deficient over time because your stomach makes molecules that help absorb these micronutrients.”Several GI cancers respond well to chemotherapy, usually when combined with surgery or radiation. Among these are colorectal, pancreatic, anal, esophageal, stomach, small intestine and gallbladder cancers and intrahepatic cholangiocarcinoma, says Dr. Benjamin Weinberg, a GI cancer specialist at Georgetown Lombardi Comprehensive Cancer Center in Washington, D.C.; however, the effectiveness of chemotherapy is more limited for liver cancer.
Most chemotherapy agents produce side effects such as fatigue, nausea, loss of appetite, hair loss, constipation and diarrhea. Receiving antinausea medications before chemotherapy has helped patients like Myrick and Hensel, and some hospitals are exploring alternative therapies like medical marijuana. The results of a 2016 review paper looked at the effectiveness of medical marijuana for symptom relief in patients with cancer and showed that it has the potential to help combat nausea and vomiting. However, there aren’t enough large studies in humans to recommend the drug as a first-line antiemetic.
“Medicinal marijuana can be effective in terms of controlling nausea and loss of appetite, but I warn people that those who have curable disease should likely stay away from it, since we don’t know what the long-term effects are,” Barzi says. “But for those who have advanced or metastatic disease, I do recommend medicinal marijuana, and there (is a) prescription-grade (cannabinoid) that helps.”
Some side effects are unique to certain chemotherapy agents, such as neuropathy in patients taking oxaliplatin. The drug can be combined with others to treat colorectal, esophageal, pancreatic and stomach cancers. A main side effect is neuropathy, which manifests as numbness, burning or tingling in the fingers, toes, hands, feet, mouth or throat; pain in the hands or feet; increased sensitivity, especially to cold; and a decreased sense of touch.
Despite its widespread use, the long-term consequences of oxaliplatin can be debilitating. Symptoms like numbness, pain and gait disturbance can persist for years after treatment and have a negative impact on quality of life. A 2015 study of patients with colorectal cancer found that many had mild to moderate neuropathy more than two years after they stopped taking the drug.
“I usually stop giving patients oxaliplatin when it starts to cause some numbness or tingling, because I can’t go back in time,” Weinberg says. “I don’t want to compromise their quality of life by giving them neuropathy.”
Other common chemotherapy drugs for GI cancers include irinotecan and 5-FU. Patients taking irinotecan may experience diarrhea, increased risk of infection and weakness, whereas 5-FU has side effects that include loss of appetite; hand-foot syndrome, which causes soreness, redness and peeling on the palms and soles of feet; and diarrhea. Doctors can prescribe medicine to help with both diarrhea and hand-foot syndrome, and patients should drink at least 2.5 liters of fluid a day to stay hydrated. Avoiding very hot water and tight-fitting gloves or socks, as well as moisturizing skin with unscented creams, can also help alleviate hand-foot syndrome. Patient education and awareness are the first line of defense to best manage side effects so that these can be recognized, and early treatment measures can be initiated by the patient and reported to the care team.Radiation therapy isn’t used as frequently in GI cancers as chemotherapy and surgery, but it is part of the main treatment for most anal cancers, as well as for rectal, esophageal and liver cancers. It is also used less frequently to help treat stomach and small intestine cancers.
Common side effects of radiation therapy include skin problems (e.g., dryness, itching, blistering or peeling) and fatigue. To help manage skin problems, patients should use only lukewarm water during bathing, avoid scented skin products and stay out of the sun. Most skin reactions eventually resolve after treatment has ended. Other side effects depend on the type and location of radiation therapy, since it is a local treatment that affects only the tumor area. For instance, radiation to the stomach or abdomen can lead to nausea, vomiting and diarrhea. For treatment of anal cancer, radiation therapy can cause diarrhea, discomfort during bowel movements and short-term anal irritation and pain. Similarly, patients with rectal cancer may experience rectal irritation, painful bowel movements, bowel incontinence and sexual problems. Most of these side effects get better over time and can be managed with medication and rest, but others, such as sexual problems, may last longer.
To treat his rectal cancer, Hensel completed 28 rounds of radiation with chemotherapy, followed by four more rounds before his surgery in August 2018. His side effects from both treatments were mostly manageable, aside from excruciating (but ultimately temporary) pain during bowel movements and bladder irritation. However, he began to have issues with erectile dysfunction, for which he started taking daily medication, and his doctors also prescribed a penis pump. Fortunately, one doctor recommended that he preserve his fertility before radiation therapy by freezing a sample of semen.
After four more rounds of maintenance chemotherapy following surgery, his imaging scans in December 2018 showed no signs of cancer in his body. “Having a good support system has been really important for me, and I really latched onto support groups on Facebook early on in my diagnosis,” Hensel says. “I’ve never tried to hide my diagnosis, and being open about it has helped me process it better. I realize that there’s value in sharing my story.”
The American Society of Clinical Oncology recently endorsed integrative therapies like acupuncture, meditation, massage and yoga as evidence-based ways to manage the symptoms and side effects of breast cancer. Although less research has been performed to determine how integrative therapies might help patients with GI cancers, there is no evidence that they will be harmful. The report recommended meditation, music therapy, yoga and group stress management for reducing anxiety; and acupressure, electro-acupuncture, ginger and relaxation techniques that can be selectively offered along with antiemetic drugs to ease nausea and vomiting during chemotherapy. Meditation, relaxation, yoga, massage and music therapy were recommended for treating depression and mood disturbance. In addition, patients with GI cancers can ask their doctors about easing symptoms and stress with palliative care, which may be provided alongside curative treatment.
Organizations like the Colorectal Cancer Alliance and Fight Colorectal Cancer also help patients by providing resources, educational materials and support groups. Soon after receiving her diagnosis, Myrick began writing a blog called Peg’s Cancer Journey, which documented the day-to- day experience of treatment and its side effects. She had a recurrence in her liver around August 2017 and enrolled in an immunotherapy clinical trial.
“I’m a big proponent for being your own best advocate and recognizing that this is your body. Even though a doctor or family member might want you to do a certain treatment, you ultimately have the last say,” Myrick says. “Nobody can take the side effects away from you, and it doesn’t mean that you’re giving up the fight because you’re taking a chemo break. Always remember that your quality of life is essential.”