patient perspective on strategies for long-term management of recurrent ovarian cancer
TRANSCRIPT
Strategies for Long-Term Management of Recurrent Ovarian CancerSeptember 10, 2015
Annie EllisOvarian Cancer Survivor/Research Advocate
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)
Journal of Gynecologic Oncology, November 2014, Volume 135, Issue 2, Pages 261–265
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 WorkshopCo-sponsored by FDA/SGO/AACR/ASCOSeptember 3, 2015Ovarian Cancer Survivorship
Survey (August 2015)
My journey
2006 OCNAOvarian Cancer National Alliance Conference
2008 SGO SHARE Presentation
The Patients’ Perspective
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 haveheard. 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.”
Coping
Images: various internet sources
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
Support
Various internet sources, SHARE and Robin Cohen
It is a truth universally
acknowledged, that a woman in
possession of recurrent ovarian
cancer must be in want of
more effective treatments.
Adapted from Pride and Prejudice by Jane Austin.
Different paths to long-term management
Exciting times!
DataInformationKnowledge
Source: Hanahan D, Weinberg RA. Hallmarks of cancer: the next generation. Cell. 2011;144:646-674.
Confusing times
http://www.gutenberg.org/
Frustrating Times
Oxfordjournals.org
Treatment OptionsFrom NCCN Patient guidelines: http://www.nccn.org/patients/guidelines/ovarian/index.htmlPage 68
(Slide updated 2016)
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/
Potential benefits and potential risks
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
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/
SHARE’s Clinical Trial Matching Servicehttp://www.sharecancersupport.org/share-new/clinicaltrial_1/clinicaltrial/
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
Choice ofTherapy
Size &Location
PlatinumResponse
MolecularInformation
Schedule of Drugs
CellType
PatientPreference(Hair, etc.)
ResidualSide Effects
orSymptoms
HereditaryMutation
Status
Is there a clinical trial option? Is it reasonable?
Is it available?
How does it fit with how I want to live?
ClinicalTrial
Surgery Radiation
ApprovedTherapy
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
Staying in the game: Keep Options in Play
http://www.vehiclehi.com/
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• LiveLoveLaugh
ResourcesNCCN Patient Guidelines: http://www.nccn.org/patients/guidelines/ovarian/index.htmlNCI Designated Cancer Centers: http://www.cancer.gov/researchandfunding/extramural/cancercentersNCI’s Translational Research Program: Ovarian Cancer SPORES http://trp.cancer.gov/spores/ovarian.htm Society of Gynecologic Oncology (SGO): Information for patientshttps://www.sgo.org/patients-caregivers-survivors/NOCC: Ovarian Cancer Resource Guide for Women with Recurrent Diseasehttp://www.ovarian.org/assets/pdf/NOCC_Recurrent.pdfMSKCC About Herbshttps://www.mskcc.org/cancer-care/treatments/symptom-management/integrative-medicine/herbsSHARE Clinical Trial Matching Service through EmergingMedhttp://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_survivorsOCRF—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 Uncertaintyby 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.htmlCure Forward: https://www.cureforward.com/
(Slide updated 2016)