Colon Cancer Canada & Canadian Cancer Survivor Network Survey on Stivarga The purpose of this survey is to provide Colon Cancer Canada the Canadian Cancer Survivor Network (CCSN) with insights and perspectives about living with and managing metastatic colorectal cancer from patients and caregivers in order to complete a patient evidence submission for regorafenib (Stivarga) for the treatment of patients with metastatic colorectal cancer (CRC) who have been previously treated with fluoropyrimidine-based chemotherapy, oxaliplatin, irinotecan, an anti-VEGF therapy, and, if KRAS wild type, an anti-EGFR therapy; for patients with ECOG status of ≤ 1. THIS SURVEY will be open until noon on October 27, 2014 to enable us to submit our patient evidence submission will be submitted to the pan-Canadian Oncology Drug Review on October 31, 2014.Thank you for your participation! Question Title * 1. What are the symptoms or problems you experience with advanced colorectal cancer that affect your day-to-day living and quality of life? Fatigue Sexual dysfunction Nausea Not sleeping at night - restless Weight loss - loss of appetite Constipation Pain Fractures of fear of fractures Living with uncertainty Feeling isolated or lonely Anxiety, panic attacks Depression Other (please specify) Question Title * 2. Which of these symptoms are the most important to control. Please pick your top 5: Fatigue Sexual dysfunction Nausea Not sleeping at night - restless Weight loss - lack of appetite Constipation Pain Fractures or fear of fracture Living with uncertainty Feeling isolated or lonely Anxiety, panic attacks Depression Other (please specify) Question Title * 3. What therapies/treatments are you currently using to treat your disease? FOLFOX FOLFIRI FLOX CapeOx Irinotecan 5-FU (Fluorouracil) 5-FU/leucovorin Capecitabine (Xeloda) Bevacizumab (Avastin) Aflibercept (Zaltrap) Cetuximab (Erbitux) Panitumumab (Vectibix) Regorafenib (Stivarga) Other (please specify) Question Title * 4. How effective have the therapies/treatments listed in question 3 been at controlling common aspects of advanced colorectal? Please check all that apply. Very effective Somewhat effective Not very effective Not effective at all FOLFOX FOLFOX Very effective FOLFOX Somewhat effective FOLFOX Not very effective FOLFOX Not effective at all FOLFIRI FOLFIRI Very effective FOLFIRI Somewhat effective FOLFIRI Not very effective FOLFIRI Not effective at all FLOX FLOX Very effective FLOX Somewhat effective FLOX Not very effective FLOX Not effective at all CapeOx CapeOx Very effective CapeOx Somewhat effective CapeOx Not very effective CapeOx Not effective at all Irinotecan Irinotecan Very effective Irinotecan Somewhat effective Irinotecan Not very effective Irinotecan Not effective at all 5-FU (Fluorouracil) 5-FU (Fluorouracil) Very effective 5-FU (Fluorouracil) Somewhat effective 5-FU (Fluorouracil) Not very effective 5-FU (Fluorouracil) Not effective at all 5-FU/leucovorin 5-FU/leucovorin Very effective 5-FU/leucovorin Somewhat effective 5-FU/leucovorin Not very effective 5-FU/leucovorin Not effective at all Capecitabine (Xeloda) Capecitabine (Xeloda) Very effective Capecitabine (Xeloda) Somewhat effective Capecitabine (Xeloda) Not very effective Capecitabine (Xeloda) Not effective at all Bevacizumab (Avastin) Bevacizumab (Avastin) Very effective Bevacizumab (Avastin) Somewhat effective Bevacizumab (Avastin) Not very effective Bevacizumab (Avastin) Not effective at all Aflibercept (Zaltrap) Aflibercept (Zaltrap) Very effective Aflibercept (Zaltrap) Somewhat effective Aflibercept (Zaltrap) Not very effective Aflibercept (Zaltrap) Not effective at all Cetuximab (Erbitux) Cetuximab (Erbitux) Very effective Cetuximab (Erbitux) Somewhat effective Cetuximab (Erbitux) Not very effective Cetuximab (Erbitux) Not effective at all Panitumumab (Vectibix) Panitumumab (Vectibix) Very effective Panitumumab (Vectibix) Somewhat effective Panitumumab (Vectibix) Not very effective Panitumumab (Vectibix) Not effective at all Regorafenib (Stivarga) Regorafenib (Stivarga) Very effective Regorafenib (Stivarga) Somewhat effective Regorafenib (Stivarga) Not very effective Regorafenib (Stivarga) Not effective at all Other (please specify) Question Title * 5. What side effects have you have experienced? Anemia Diarrhea Nausea and vomiting Risk of infection Other (please specify) Question Title * 6. Which side effects are the most difficult to manage? Anemia Diarrhea Nausea and vomiting Risk of infection Other (please specify) Question Title * 7. Have you had problems accessing current treatment? Yes Limited availability in my community Financial hardship due to cost Travel costs associated with getting treatment Supplies or issues with administration No Other (please specify) Question Title * 8. Are there any needs in your current therapy that are not yet being met? No Yes (please describe below) Description Expectations of a new drug: No experience with regorafenib (Stivarga)Please complete these questions if you have NOT been treated with regorafenib (Stivarga) Question Title * 9. Based on the needs in question 8, how much of an improvement would be needed from the new drug to make it better than current treatment? Please describe. Question Title * 10. Which of the following issues would you hope that a new drug would address to manage your disease? Better able to control symptoms Reduce side effects from current medications / treatments Ease of use Stop disease progression Other (please specify) Question Title * 11. What side effects would you be willing to tolerate? Experiences with regorafenib (Stivarga)Please complete these questions only if you have metastatic colorectal cancer (CRC) and have been previously treated with fluoropyrimidine-based chemotherapy, oxaliplatin, irinotecan, an anti-VEGF therapy, and, if KRAS wild type, an anti-EGFR therapy; for patients with ECOG status of ≤ 1. Question Title * 12. Please describe the positive and negative effects of regorafenib (Stivarga). Positive effects Negative effects Question Title * 13. What issues are better managed on regorafenib (Stivarga) than on your previous therapy? Yes No Better able to control symptoms Better able to control symptoms Yes Better able to control symptoms No Better able to control symptoms Better able to control symptoms Reduction in side effects from current medications or treatments Reduction in side effects from current medications or treatments Yes Reduction in side effects from current medications or treatments No Reduction in side effects from current medications or treatments Reduction in side effects from current medications or treatments Ease of use Ease of use Yes Ease of use No Ease of use Ease of use Stops disease progression Stops disease progression Yes Stops disease progression No Stops disease progression Stops disease progression Other (please specify) Question Title * 14. If you are better able to control symptoms on regorafenib (Stivarga) than on your previous therapy, please describe which symptoms. Question Title * 15. If side effects are reduced on regorafenib (Stivarga) than on your previous therapy, please describe which side effects. Question Title * 16. If you found that Xofigo regorafenib (Stivarga) was easier to use than your previous therapy, please describe how it was easier to use. Question Title * 17. What adverse effects were caused by regorafenib (Stivarga)? Fatigue Diarrhea Hot flashes Other (please specify) Question Title * 18. Which adverse effects are acceptable and which ones are not? Acceptable Not acceptable Fatigue Fatigue Acceptable Fatigue Not acceptable Diarrhea Diarrhea Acceptable Diarrhea Not acceptable Hot flashes Hot flashes Acceptable Hot flashes Not acceptable Other Other Acceptable Other Not acceptable Question Title * 19. What expectations do you have for your long-term health and well-being as a result of taking regorafenib (Stivarga)? Please complete the following if you are a caregiver (family member or friend). Question Title * 20. What challenges do you face in caring for your loved one with metastatic colorectal cancer? Question Title * 21. Please describe how you feel about these challenges. Question Title * 22. What are the most challenging adverse effects related to current therapy or treatment?Please describe: (eg. Helping with fatigue, pain management, preparing meals, etc) Thank you for your responses to these questions.We appreciate your willingness to participate in this survey, which will help Colon Cancer Canada and the Canadian Cancer Survivor Network prepare our submission to the pan-Canadian Oncology Drug Review. Done