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)