Clinical Trial: Chuck, Comanche Nation, Colorectal Cancer Patient
Objectives of the Case Study
Identify at least four challenges Chuck experienced that impacted his quality of life and survivorship.
Describe at least three members of the oncology team and the role(s) they played in helping improve Chuck’s quality of life.
Identify four strategies the oncology team used to address Chuck’s quality-of-life issues.
Chuck is an enrolled member of the Comanche Nation. He is 55 years old, is of normal weight, has type II diabetes, and is a smoker and a recovered alcoholic (sober for 13 years). He was diagnosed with colorectal cancer. Chuck was treated for 3 months with bevacizumab (Avastin), irinotecan hydrochloride (includes FOLFIRI, folinic acid, and 5-FU), and cetuximab, but his cancer had metastasized. He was successfully enrolled in the National Cancer Institute clinical trial NCT01079780 . This trial was to determine whether giving cetuximab and irinotecan hydrochloride together was more effective with or without ramucirumab (Cyramza).
Chuck joined a cancer support group, but the distance made attending difficult, and the members were not Native. He started meeting with a few local Comanche Nation cancer survivors at one of their homes. Their support group is informal but the three men help one another. They call the community patient navigator on the toll-free number in Denver when they need additional information. The community patient navigator contacts the nurse navigator when the information the three men need or want constitutes medical advice.
Chuck had a lot of fatigue, weakness, dizziness, nausea, vomiting, and severe headaches prior to joining the clinical trial. The headaches and dizziness were of issue because Chuck’s work as a ranch hand was conducted on horseback and he fell a few times. Similarly, he had to stop work many times during the day in attempts to calm the nausea and to find a bush where he could vomit. Chuck attempted to remain stoic throughout these symptoms, but the men in his support group insisted he get help. They called the community patient navigator and talked with him via conference call during one of their support group gatherings, and the community patient navigator said he would talk with the nurse navigator to get her involved.
The nurse navigator created a schedule to talk with Chuck’s wife to confirm when and how he was taking his medication to keep his blood pressure in normal ranges. She did this the first 3 weeks that Chuck was enrolled in the clinical trial. He complained about the side effects during the trial and had difficulty in recovering from a wound he incurred from the horse fall (he fell on a tree stump and had a deep cut on his shin that would not heal).
The nurse navigator talked with the clinical trial nurse, and they worked on a wound management protocol. A volunteer nurse agreed to drive out to the ranch and show Chuck and his wife how to care for the wound, and she traveled once each week to check on the healing of Chuck’s wound, because he could not miss any more work at the ranch.
The clinical trial uses ramucirumab; common (10–29% of users) side effects include high blood pressure, diarrhea, and headache. Chuck was enrolled in the trial in spite of his poorly managed high blood pressure. Of note, the dizziness and nausea side effects were lessened once Chuck was in the clinical trial. Chuck continued to have headaches, but less severe than prior to the clinical trials.
However, Chuck continued to experience a lot of weakness and fatigue. He had difficulty grooming his horse prior to starting work on the ranch each day. His comments describing the weakness were “I had to sit down two to three times while brushing my horse. Then I had to carry my saddle from the tack room to set on a tie rail. Next, I’d need to move my horse to the tie bar so that I could lift the saddle, rotate around, and heave it onto my horse's back. Luckily, my horse stands real still because I’d have to lean against the tie rail or sit on the ground before I was able to cinch the girth. This whole process took about an hour whereas it used to take 10 min before I was in cancer treatment. This meant I had to get to the ranch a lot earlier. After the saddle was cinched up, I’d have to rest before I got the bridle from the tack room and put it on my horse. I’d rest, lead him over to a mounting block, and get on. Then I’d have to just sit in the saddle and catch my breath….”
“…The Indian guys I work with would get on me about acting like a woman … all of it in fun until I finally told them I was in cancer treatment. Then my buddy, Cal started grooming my horse and saddling him before I even got to the ranch. That was real nice.”
Solutions by the Team
Chuck called the community patient navigator early in May and asked him how long the weakness and tiredness were going to last, and if there was anything he could do to feel better. Lance explained that some fatigue could last as long as 2 years, occasionally even longer, but that it would gradually get better. In the meantime, the community patient navigator said he would contact the nurse navigator to get her medical advice and assistance for additional medications that may help. Because Chuck was in the clinical trial, the nurse navigator had to talk with the clinical trial nurse. The clinical trial nurse reached out to the dietitian for help with the fatigue, and also contacted the clinical trial lead physician for a recommendation of medication to alleviate the fatigue symptoms. The nurse navigator talked with Chuck and scheduled a follow-up appointment with her, the dietitian, and the clinical trial nurse to work on strategies to address his issues. During the appointment, the dietitian helped Chuck and his wife understand the importance of high-iron and nutrient-rich foods and supplements. Both were willing to improve his diet but could not afford these foods. The nurse navigator called to find out if the oncology social worker was available and could help with food supplement program. The appointment lasted 4 hours, but by the end, Chuck and his wife drove home with new prescription medication to lessen the fatigue symptoms, dietary supplements free of charge, and food discount coupons to use for shopping at the local market. His wife cooked and Chuck ate the high-iron, nutritious foods.
Community Challenge and Solutions
By July, Chuck was not yet strong enough to dance in the pow wow, but his family and friends danced for him. The community patient navigator also came down to Comanche Nation and danced and prayed for Chuck. Following the pow wow, Chuck took part in three traditional Indian ceremonies with the help of his family and friends throughout the rest of the summer. Because the community patient navigator also was Comanche and involved with Chuck’s care, he took part in one of the traditional ceremonies.
By the following year, Chuck was strong enough to dance again (only a few slower dances and widely spaced intervals in between dances). Chuck continues to work on the ranch and gradually returned to performing part-time construction jobs around the community (he could not do this work for 18 months following the completion of his chemotherapy). He is enjoying his family, friends, and community activities, and he talks openly about his cancer experience now, but only when asked. A common concept presented by Chuck when talking with others is the Creator gives us the strength to have this journey and helps us reorganize our priorities to enable us to become more involved in our families and our communities. The cancer and the treatments are very hard, but through our traditions and guidance of the Creator, we become well again.
Chuck’s quality of life was greatly impacted by the side effects of his cancer treatment. Because of the help from the community patient navigator, nurse navigator, clinical trial nurse, the physician (to prescribe fatigue medications), the dietitian (to help Chuck and his wife with a high-iron and nutrient-rich dietary plan), the oncology social worker (for inexpensive and free food supplements), traditional Indian healer (for cleansing and spiritual ceremonies), and his local male support group, Chuck struggled through the side effects to gradually be strong enough to work on the ranch without help from his friends, take part in cultural activities (ceremonies and pow wow dancing and praying), and improve his relationships with his family and friends.