adverse event education among physicians less familiar with the
treatment of metastatic renal cell carcinoma.
As we gain experience with these therapies it is important to know that understanding the biomarker development and use of genomic testing may help us to have new information that will allow us to treat our patients more effectively as well as new and existing resources that are available to provide patient education for our patients and their family members.
From: the National Comprehensive Cancer Network (NCCN) overview of Kidney cancer 2014-15
All patients with advanced RCC require the best supportive care and advances have been in this area as well. Strategies have been developed to enhance tolerability of the targeted agents including dose reductions, schedule changes or alternative therapies. Progression/relapse and the need for subsequent lines of therapy in patients with RCC are nearly universal. Sequencing the appropriate therapy for maximum benefit is critical.
Despite the advances of the past ten years, the newer therapies have not yielded a long-term solution for patients. The American Cancer Society estimated over 63,920 Americans will be diagnosed with kidney cancer
in 2014 and over 13,860 will die of the disease. Majority of patients are diagnosed with locally advanced or metastatic disease. The 5-year survival rate is still dismal, in the order of 10%.
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F
or over a decade the Kidney Cancer Association has received invaluable guidance and assistance in providing information for patients and their family members who are dealing with this disease through the collaboration of the Nurse Advisory Board. This board co-chaired by Nancy Moldawer, RN, MSN, of the Cedars-Sinai Medical Center and Laura Wood, RN, MSN, OCN, of the Cleveland Clinic consists of a group of dedicated oncology nurses from facilities who have a specialized practice in the treatment of renal cell carcinoma. Most of the nurses that serve on this board have won national honors for their individual accomplishments, have authored or co- authored many journal articles and chapters in textbooks on nursing, patient care, and clinical research and are in great demand as speakers and panelists at medical meetings in the US and abroad.We Have Kidney Cancer is an excellent resource book for patients and family members of those who are dealing with Kidney Cancer. This guidebook is written and constantly updated through the efforts and collaboration of the Nurse Advisory Board and is currently available in a dozen languages. It is available as a free download or online readable version at www.kidneycancer.org.
Another resource that the KCA Nurse Advisory Board makes available to patients and family members is a series of videos on
YouTube that
discuss some common side effects that patients may experience when using targeted therapies for treatment of kidney cancer. To fully explore side effect management, be sure to watch the entire series. These are fairly short videos, ranging in length from four to twelve minutes each.
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The Nurse Advisory Board provided the following resources and content for this summary. The Kidney Cancer Association: The KCA is available to assist you in many ways, including providing written information on the disease, treatment options, and resources. You can contact the Kidney Cancer Association at 1-800-850-9132, or visit the website at www.kidneycancer.org
Drug information sheets: Information on the approved treatments for kidney cancer is available on the KCA website. These are valuable resources for you and your family as you navigate your treatment. Side effect information sheets: There are side effects that you may experience while taking these medications. Most side effects can be successfully managed with early and ongoing communication with your medical team. Side effect information sheets and educational videos are excellent resources to assist you in managing these side effects. Prompt recognition and early treatment is key to a more successful outcome and improved quality of life.
Patient empowerment: One way to increase your odds of survival after diagnosis is by becoming a strong self-advocate in all phases of your care. This includes keeping good records, getting a second opinion from a doctor who specializes in kidney cancer, choose an expert doctor with experience in treating your condition, becoming accountable for your follow up and appointments, and
communicating professionally with your doctor. For tips on talking with your doctor see (We Have Kidney Cancer Book, page 68) download a free copy www.kidneycancer.org
Clinical trials: Clinical trials have been largely responsible for advances in the treatment of kidney cancer in recent years. Since 2005, seven drugs have been approved by the US FDA for kidney cancer, and many new clinical trials offer additional options for treatment. Questions regarding the
effectiveness and safety of new treatments, and ways to improve current treatments are answered through the clinical trial process. The Kidney Cancer Association can give you information on clinical trials available in your area.
Disability resources: Aside from employer or personal disability insurance policies, the Social Security Administration in the US may provide monthly benefits if you are determined to be “disabled“ according to the government disability standards. This process can be confusing, and it is very important to be fully informed of the guidelines for determination prior to applying, and to apply early. Applications for disability in the US can be made online at http://www.ssa.gov/, or by visiting your local Social Security office.
Additional tips on the US disability process is available at
http://www.disabilitysecrets.com/questions.html
Patient & Family Support Group meetings: There are a variety of ongoing patient and family support groups for kidney cancer which may be available in your neighborhood. The KCA website has a link to these meetings. These support groups provide another source of information and guidance on coping with your diagnosis and treatment. If you don’t have a kidney cancer support group in your area, contact the American Cancer Society www.cancer.org for other support groups in your area.
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U
PDATES INT
OXICITYM
ANAGEMENT&
E
DUCATIONR
ESOURCES•Seven FDA approved treatments since December 2005
•Improved clinical outcomes
•Adverse effects have the potential to chronically impact every organ system •Treatment is chronic
•Toxicities are cumulative
•Side effect management is anecdotal •CTCAE grading is inadequate