Metastatic Breast Cancer Survey - Tukysa (tucatinib)

Rethink Breast Cancer is looking for individuals with HER2-positive metastatic breast cancer and anyone who has been treated with Tukysa (tucatinib) to talk about their experience.

The Canadian Agency for Drugs and Technologies in Health (CADTH) makes recommendations about whether provincial health plans should pay for new cancer drugs. CADTH will soon be reviewing the use of Tukysa (tucatinib) to treat human epidermal growth factor receptor 2 (HER2)-positive locally advanced unresectable or metastatic breast cancer.

Rethink Breast Cancer will be making a submission to ensure that patient voices are represented and considered during the review process. We would like to speak with patients about their experience with HER2-positive metastatic breast cancer.
 
You do not need to live in Canada to respond to this survey; we appreciate input from every patient.

We are also interested in speaking directly with those who have treatment experience with Tukysa (tucatinib).

Please contact MJ DeCoteau at MJ@rethinkbreastcancer.com if you would be willing to participate in a brief telephone interview.
 
We would like to thank everyone for helping to ensure that patient experiences are represented in the cancer drug funding review process.
 
Privacy Policy: To ensure patient privacy and confidentiality, individual responses will not be identifiable. It is important to note that selected quotations may be used for the final submission to government agencies without reference to patient name or any other information that could lead to identifying the patient.

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* 1. Have you been diagnosed with HER2-positive locally advanced unresectable or metastatic breast cancer?

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* 3. Has your breast cancer led to any brain metastases?

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* 4. What treatment phase are you in?

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* 5. What treatments have you received since your diagnosis?

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* 6. Please describe your overall experience with these cancer treatments including both positive and negative experiences.

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* 7. What side effects have you experienced as a result of treatment?

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* 8. If you experienced treatment side effects, which did you find most difficult to tolerate?

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* 9. Have you had difficulties accessing cancer treatments?

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* 10. Do you have financial challenges as a result of your breast cancer treatment?

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* 11. Have you needed financial assistance due to costs associated with breast cancer or its treatment?

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* 12. On a scale of 1 (not important) to 5 (very important), how important are these outcomes for your breast cancer treatment?

  1 - not important 2 3 4 5 - very important
Controlling disease progression
Reducing symptoms
Maintaining quality of life
Managing side effects
Preventing recurrence
Questions 14-26 are for patients with Tukysa (tucatinib) treatment experience. If you have not received this treatment, you can proceed directly to Question 27.

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* 14. Have you been treated as a breast cancer patient with Tukysa (tucatinib)?

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* 15. Did you receive Tukysa in combination with trastuzumab (Herceptin) and capecitabine (Xeloda)?

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* 16. Were you treated with trastuzumab (Herceptin), pertuzumab (Perjeta) and trastuzumab emtansine (Kadcyla) separately or in combination prior to receiving Tukysa?

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* 17. Have you been treated with trastuzumab (Herceptin) in combination with capecitabine (Xeloda)?

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* 18. How long were you treated with Tukysa?

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* 19. Are you still receiving Tukysa for treatment of breast cancer?

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* 20. On a scale of 1 (much worse) to 5 (much better), how has your life changed on Tukysa compared to other therapies that you received?

  1 - much worse 2 3 4 5 - much better
Metastatic cancer symptoms
Drug side effects
Maintaining quality of life
Controlling disease progression
Preventing recurrence
Ability to work
Ability to sleep
Ability to drive
Ability to perform household chores
Ability to care for children

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* 21. What side effects have you experienced while on Tukysa?

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* 23. Did you have any difficulty accessing Tukysa?

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* 24. Did your doctor suggest any alternatives if treatment with Tukysa was unavailable?

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* 25. Overall, what has been your experience with Tukysa? Describe the positive and negative.

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* 26. Based on your personal experiences with Tukysa, would you recommend it to other patients with breast cancer?

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* 27. What country are you from?

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* 29. Would you be willing to participate in a telephone survey to discuss your experience with Tukysa?

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* 30. If yes, please enter your email address or phone number below.

If you have a primary caregiver who is willing to participate in this survey, please allow them to complete the following questions by themselves.

If you don't have a primary caregiver or if they do not wish to participate in this survey, click Done at the bottom of the page to complete the survey.

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* 31. What is your relationship to the breast cancer patient?

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* 32. How would you describe the severity of the challenges you have faced as a caregiver on a scale of 1 (not at all severe) to 5 (very severe)? Please elaborate in the comments section.

  1 - not at all severe 2 3 4 5 - very severe
Financial
Health
Educational
Social
Professional

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* 33. What type of support is or would be most helpful for you in order to care for someone with breast cancer?

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* 34. How would you describe the effect of Tukysa on the patient for whom you are caring?

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* 35. How did treatment with Tukysa affect your responsibilities as a caregiver?

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