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Patient Perspective on Strategies for Long-Term Management of Recurrent Ovarian Cancer

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Annie Ellis, ovarian cancer survivor and research advocate, shares strategies to manage recurrence.

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Patient Perspective on Strategies for Long-Term Management of Recurrent Ovarian Cancer

  1. 1. Strategies for Long-Term Management of Recurrent Ovarian Cancer September 10, 2015 Annie Ellis Ovarian Cancer Survivor/Research Advocate
  2. 2. Annie Ellis  11-year Ovarian (2 recurrences) and 4-year Breast Cancer Survivor  FDA Patient Representative  CDMRP Ovarian Cancer Research Program Integration Panel  Roswell Park Ovarian Cancer SPORE Patient Representative  2014 AACR Scientist↔Survivor Program  Ovarian Cancer National Alliance ◦ Research Advocate ◦ Formerly on Special Programs (Education) and Conference Committees ◦ Conference Speaker; Survivors Teaching Students®  SHARE ◦ Helpline Peer ◦ Former Peer Support Group Facilitator ◦ Presented at SGO 2008 “The Patient’s Perspective”  NY Presbyterian-Columbia Woman to Woman Peer  Ovarian Cancer Research Fund: Clinical Trials Video and Symposium Speaker  2013 Congressional Briefing on Ovarian Cancer for Society for Women’s Health Research (SWHR)
  3. 3. Journal of Gynecologic Oncology, November 2014, Volume 135, Issue 2, Pages 261–265
  4. 4. The work is not over until everyone has a chance to have a lasting and meaningful Dance with NED. No Evidence of Disease FDA Ovarian Cancer Endpoints Workshop Co-sponsored by FDA/SGO/AACR/ASCO September 3, 2015 Ovarian Cancer Survivorship Survey (August 2015)
  5. 5. My journey  2006 OCNA Ovarian Cancer National Alliance Conference 2008 SGO  SHARE Presentation The Patients’ Perspective
  6. 6. Joan Sommer: “Surviving and living with ovarian cancer is not an arbitrary period like five years. It is an everyday thing where you wake up, take a deep breath in spite of your fears and pain, and find a way to take your place in the world” “Surviving cancer is not a place you strive for in the distance. It is here and now. You are in it. It is up to you to be part of it, to find your hope.” “Hope is falling asleep and expecting to wake up each day in spite of what you might have heard. It is thinking about the possibilities not probabilities. It is preparing to die but expecting to live.” “When faced with uncertainty there is nothing wrong with hope.”
  7. 7. Coping Images: various internet sources
  8. 8. Coping—Professional Support Major Depression • Feeling sad most of the time. • Loss of pleasure and interest in activities you used to enjoy. • Changes in eating and sleeping habits. • Nervousness. • Slow physical and mental responses. • Unexplained tiredness. • Feeling worthless. • Feeling guilt for no reason. • Not being able to pay attention. • Frequent thoughts of death or suicide. Cancer-related Post-Traumatic Stress • Repeated frightening thoughts. • Being distracted or overexcited. • Trouble sleeping. • Feeling detached from oneself or reality When to get help: ►Any time you feel you need assistance ►When mood/feelings get in the way of day to day functioning http://www.ncbi.nlm.nih.gov/books/NBK66039/ http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0032735/ Images: various internet sources
  9. 9. Support Various internet sources, SHARE and Robin Cohen
  10. 10. It is a truthuniversallyacknowledged, that a womanin possessionof recurrentovariancancer must bein want of more effectivetreatments. Adapted from Pride and Prejudice by Jane Austin.
  11. 11. Different paths to long-term management
  12. 12. Exciting times! DataInformationKnowledge Source: Hanahan D, Weinberg RA. Hallmarks of cancer: the next generation. Cell. 2011;144:646-674.
  13. 13. Confusing times http://www.gutenberg.org/
  14. 14. Frustrating Times Oxfordjournals.org
  15. 15. Treatment Options From NCCN Patient guidelines: http://www.nccn.org/patients/guidelines/ovarian/index.html Page 68 (Slide updated 2016)
  16. 16. Goals and Priorities After we have thought about our goals and priorities, it may be easier to decide what we are willing to do to achieve them. One day Alice came to a fork in the road and saw a Cheshire cat in a tree. “Which road do I take?” she asked. “Where do you want to go?” was his response. “I don’t know,” Alice answered. “Then,” said the cat, “it doesn’t matter.” If you don’t know where you want to go, any road will take you there. http://www.alice-in-wonderland.net/resources/pictures/tulgey-wood-inhabitants/
  17. 17. Potential benefits and potential risks
  18. 18. Empowered Decision Making: Important Tools for Navigation • Current tests and scans • Location, volume • Pathology • Type of tumor • Hereditary mutation status • Genetic testing recommended for all ovarian cancer patients • BRCA • Lynch Syndrome? BROCA Panel? • Other information • Molecular profiling? • Assays? • Communication • Open and honest dialogue • Ask questions; Negotiate • Plan to manage side effects • Be your own advocate
  19. 19. Empowered Decision Making: Clinical Trials • Consider using clinical trials to expand treatment options. • Consider participating in clinical trials sooner. The fewer lines of therapy someone has had, the more trials they can qualify for. • Many novel drugs and targeted therapies are paired with approved drugs in trials. Discuss with your medical team whether it is reasonable to delay using those particular approved drugs to help maintain eligibility down the road. http://www.bhdsyndrome.org/http://www.bhdsyndrome.org/http://www.crwf.com/phase-i-ii-iii-or-iv/
  20. 20. SHARE’s Clinical Trial Matching Service http://www.sharecancersupport.org/share-new/clinicaltrial_1/clinicaltrial/
  21. 21. Empowered Decision Making: Second Opinions or Consultations • Fresh look • More treatment options • Clinical trials • Different approach • Similar patient • Confirmation / Explanation • Specialists • Manage Side Effects • Pathology • More brains thinking about YOU! ► Plan ahead! • Reports • Scans • Access to slides
  22. 22. Choice of Therapy Size & Location Platinum Response Molecular Information Schedule of Drugs Cell Type Patient Preference (Hair, etc.) Residual Side Effects or Symptoms Hereditary Mutation Status Is there a clinical trial option? Is it reasonable? Is it available? How does it fit with how I want to live? Clinical Trial Surgery Radiation Approved Therapy Adapted from GCF Survivor Course at NYU 5/15/10: Management of Recurrent Ovarian Cancer, Matthew A. Powell, MD, Washington University School of Medicine, St. Louis, MO
  23. 23. Staying in the game: Keep Options in Play http://www.vehiclehi.com/
  24. 24. Recap: Strategies • Be informed and be your own advocate! • Incorporate Goals and Priorities • Consider Clinical Trials to expand treatment options • Second Opinions / Consultations • Proactively Manage Side Effects • Chemo Breaks! • Keep Options in Play • Explore Different Ways to Cope • Ask for Support • LiveLoveLaugh
  25. 25. Resources NCCN Patient Guidelines: http://www.nccn.org/patients/guidelines/ovarian/index.html NCI Designated Cancer Centers: http://www.cancer.gov/researchandfunding/extramural/cancercenters NCI’s Translational Research Program: Ovarian Cancer SPORES http://trp.cancer.gov/spores/ovarian.htm Society of Gynecologic Oncology (SGO): Information for patients https://www.sgo.org/patients-caregivers-survivors/ NOCC: Ovarian Cancer Resource Guide for Women with Recurrent Disease http://www.ovarian.org/assets/pdf/NOCC_Recurrent.pdf MSKCC About Herbs https://www.mskcc.org/cancer-care/treatments/symptom-management/integrative-medicine/herbs SHARE Clinical Trial Matching Service through EmergingMed http://www.sharecancersupport.org/share-new/clinicaltrial_1/clinicaltrial/ SHARE: http://www.sharecancersupport.org/share-new/oexplore/ Gilda’s Club NYC: http://gildasclubnyc.org/ CancerCare: http://www.cancercare.org/patients_and_survivors OCRF—Ovarian Cancer Research Fund Alliance: http://www.ocrfa.org/ NOCC—National Ovarian Cancer Coalition: http://www.ovarian.org/ The Human Side of Cancer: Living With Hope, Coping With Uncertainty by Jimmie Holland, MD (Chapter Two: The Tyranny of Positive Thinking) Kevin MD Article about Positive Thinking quoting Jimmie Holland: http://www.kevinmd.com/blog/2011/06/positive-thinking-affects-patients-illnesses.html Cure Forward: https://www.cureforward.com/ (Slide updated 2016)

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