End Brain Cancer Resource Guide

Patient Fact Sheets & Resources Be Your Own Rockstar Healthcare Advocate

Chris EllioƩ Fund Working to End Brain Cancer through NaƟonal PaƟent Support Services!“Today, I save lives by providing access to advanced brain tumor treatments for brain tumor paƟents” saysDellann EllioƩ, Founder & President, of the Chris EllioƩ Fund (CEF) . The organiza on is well connected withinmedical founda on communi es across the country, it has tes fied before the FDA as a na onally-recognized pa entadvocate for brain cancer, it advocates in DC for pa ent rights, and has received local and na onal media a en onfor the work they have done for brain cancer pa ents.When Dellann’s husband, Chris Ellio , was diagnosed with terminal brain cancer, Glioblastoma Mul forme/GBM, hewas 39. Chris was in the prime of his life, father of two young children and was given just one year to live. Theyrefused to give up un l they found advanced treatment op ons outside of standard protocol that could provideHOPE. During their 22 month journey, they learned the survivors of this disease were those that knew about gene ctes ng of live brain tumor ssue and par cipated in clinical trials. They wondered why everyone didn’t get thisinforma on and wasn’t given these op ons immediately upon diagnosis. This journey became the bases of their 501n(c)3 non-profit and vision: To end brain cancer through educa on, awareness, advocacy and research. The ChrisEllio Fund was created just three weeks before Chris passed away in 2002.CEF recently opened its world class call center with a primary focus on day-to-day brain tumor pa ent/caregivereduca on, awareness, advocacy and support. CEF was selected by the Na onal Brain Tumor Society to take overtheir pa ent support program a er their transi on to focus on research. However, this opportunity comes withoutaddi onal funding for program or expanded services.While CEF’s ulƟmate goal is to End Brain Cancer, their immediate focus is improving outcomes of those diagnosedwith brain tumors by providing criƟcal and Ɵmely informaƟon/access, which not only saves and extends lives, butulƟmately improves the day-to-day lives of those living with this disease. By delivering informa on/awareness andproviding access to brain tumor treatment centers noted for their excellence, CEF provides cri cal pa ent supportand also contributes to research by driving pa ents and tumor samples to research centers. The Chris Ellio Funddeveloped a na onally recognized Integrated Pa ent Support Program model that is currently at the Ivy Center forAdvanced Brain Tumor Treatment in Sea le, WA, and desires to implement this program within each U.S. braintumor center noted for its excellence.As part of their outreach efforts, Dellann Ellio and actress/board member, Jean Smart, also desire to create ana onal “What You Need to Know About Brain Cancer Before You Need to Know It” public awareness campaign. Tolearn more about this organiza on, make a referral or general inquiry, contact Dellann atDellann@ChrisEllio Fund.org or 1.800.574.5703. Blessings, Dellann Ellio , Founder & President Chris Ellio Fund www.ChrisEllio Fund.org | www.EndBrainCancer.com

Table of ContentsBe Your Own Rockstar Healthcare Advocate Top 10 Questions to Immediately Ask When Diagnosed Why Be Treated At a Brain Tumor or NCI-Designated Center Planning Your Doctor Consultation Online Resources

Transform Your Brain Tumor Healthcare ExperienceHow to be a Rockstar Healthcare Advocate Top 10 Vital Questions to Ask Your Doctor Immediately When Diagnosed with a Brain Tumor1. What kind of brain tumor do I have and what is the expected prognosis and treatment protocols?2. How many brain tumor patients are treated annually at your center? And by you? Are you an Oncologist or a Neuro Oncologist?3. If surgery is required, what are the various surgical options available at your center? How many surgeries has my neurosurgeon personally performed?4. What happens to my brain tumor tissue once it has been removed during surgery? Can it be used to inform you and others of any advanced treatment options?5. What are the available standard treatments at your center and what other treatments would you consider, if needed?6. Can you tell me about clinical trials in your medical center currently enrolling patients for my type of brain tumor or other sites where I may enroll in one?7. Would you consider ordering genomic testing for me and how might we use my genetic information to find specific genetic targets? Do you use the FoundationOne test for your patients?8. Does your center offer an integrative support program?9. Should I be concerned about too much exposure to radiation?10.How will I be followed up for recurrence and how often will I get imaging studies completed? I am concerned about exposure to too much radiation. See reverse for explanations of these questions. Would you like assistance in addressing these questions with your doctor? The Chris Elliott Fund is here to offer help and hope. Contact us today.U: 08-11-14 www.chriselliottfund.org ©2014 Chris Elliott Fund, All Rights Reserved

Chris Elliott Fund 14959 NE 95th St. Redmond, WA 98052 1-800-574-5703 Answers You Should Be Listening Fwore:[email protected]. Answer will be determined by an MRI scan and/or pathology test done following surgery or a biopsy. Confirmation of tumor type requires a pathology test which in some cases may not be an option if the tumor is “inoperable.” It is critical to get a 2nd and sometimes even a 3rd opinion, as not all tumors noted “inoperable” are truly inoperable. The discretion and skill of the neurosurgeon as well as the equipment and technology being used is factored into that determination. Recommended standard FDA approved treatment protocol after surgery usually includes chemotherapy and standard radiation depending on the type of tumor and whether it is malignant and operable. It is also important to ask if testing is available to determine how well a tumor will respond to standard protocol. That is to test specifically for “MGMT promoter methylation”, a favorable prognostic marker in either radiation or chemotherapy.2. Find a brain tumor center that uses a multi-disciplinary approach, has brain tumor specialists (e.g. a neurosurgeon and a neuro-oncologist who sees 200+ patients annually). Research the history, training, and education of your doctors.3. The brain tumor center should perform awake brain-mapping operations, use intra-operative imaging, image-guided technology, have someone dedicated to monitoring neurological function during awake surgery, and an on-site neuro-pathologist to review brain tissue at the time of surgery.4. It is critical to have your surgically removed tissue saved through cryo-preservation for genomic testing and analysis. Insure that your tissue is further researched either at your center or able to be shipped to other centers/neuro-oncologists for 2nd or 3rd opinions as well as pre-clinical trial information. It is vital that this paperwork and these options be discussed and signed prior to your brain tumor resection or surgery.5. Look for a major treatment center that has a wide range of treatment options such as: CyberKnife, Gamma Knife, and Proton Radiation. Discuss whether you are a candidate for these with your multi- disciplinary team. You may need to travel to have these treatments. Other options might include Gliadel wafers, a dissolvable wafer implanted at the tumor site at the time of surgery to deliver medications directly to the brain, the Novo TTF device, and the FoundationOne test.6. Find out how many active clinical trials are at the medical center and what phase the trial is in (1, 2 or 3). Ask about upcoming clinical trials and how many patients are enrolled in these trials. Be sure to ask if having surgery, chemo or radiation would exclude you from any of the clinical trials.7. Foundation Medicine has recently introduced the FoundationOne genomic sequencing test that looks at alterations in the 200+ genes have been identified as potentially cancer-related and links any abnormalities it finds to specific targeted treatments (where they exist). The test must be ordered by the surgeon prior to surgery so that sufficient tissue is available for the extra pathology slides required for this test.8. Ideally your physicians work as part of a team with other professionals involved in your care. Integrative Care usually includes the involvement of a social worker who may provide patient counseling, family support and referrals to needed resources, such as a nutritionist, counselor, etc. Thus, it is important to ask who is included on your treatment team and the role of each person in your treatment and care.9. As mandated by the FDA, standard of care involves a scan every 8 weeks during treatment to limit exposure.10. Knowing statistics may be daunting. However, your treatment team can prepare you for any eventuality and should include how often you will be followed up in the discussion of your overall treatment plan.www.chriselliottfund.org ©2014 Chris Elliott Fund, All Rights Reserved 2

Transform Your Brain Tumor Healthcare ExperienceHow to be a Rockstar Healthcare Advocate Why it is vital to be seen at a Brain Tumor Center and NCI Designated Cancer Centers:Information answered in this fact sheet on NCI Designated & Brain TumorCenters:  Why these centers are vital to your outcome  Why these centers can determine your outcome  Why these centers can make a difference in an outcome8 reasons to reserve your appointment at a brain tumor center today: 1. They meet rigorous criteria for world class, state of the art programs in multi-disciplinary cancer research. 2. These cancer centers are institutions dedicated to research in the development of more effective approaches to prevention, diagnosis and treatment of cancer. 3. They put significant resources into developing research programs, faculty and facilities that will lead better approaches to prevention, diagnosis, and treatment of cancer. 4. They offer clinical programs that offer patients the latest forms of treatment for a wide range of cancers, as well as access to clinical trials of experimental treatments. 5. They offer training for scientists, physicians, surgeons, and other professionals seeking specialized training or board certification in cancer- related disciplines. 6. They offer public education and outreach about cancer prevention and screening. 7. A brain tumor center will have a brain tumor specialist who is a neurosurgeon specializing in brain tumor surgery as well as a neuro- oncologist who specializes in treating brain tumors (this may not be the case at a non- brain tumor center. 8. A brain tumor center is experienced. It sees a high volume of brain tumor patients yearly. Do you need a referral or appointment at an expert brain tumor center? The Chris Elliott Fund can help. We are here to offer help and hope. Contact us todayU: 08-12-14 www.chriselliottfund.org ©2014 Chris Elliott Fund, All Rights Reserved

Chris Elliott Fund 14959 NE 95th St. Redmond, WA 98052 1-800-574-5703 Why should you be treated at an NCI designatewdeccaaren@ceenrdcbreanintcearn?cer.coNCI Designated Centers: National Cancer Institute (NCI) Designated CancerCenters are institutions certified by NCI and dedicated to research in thedevelopment of more effective approaches to prevention, diagnosis andtreatment of cancer.7 reasons to book your appointment at an NCI designated cancer centertoday: 1. They meet rigorous criteria for world-class, state-of-the-art programs in multidisciplinary cancer research. 2. These cancer centers are institutions dedicated to research in the development of more effective approaches to prevention, diagnosis and treatment of cancer. 3. They put significant resources into developing research programs, faculty, and facilities that will lead to better approaches to prevention, diagnosis and treatment of cancer. 4. NCI designation not only recognizes excellence but open doors to greater federal funding, information sharing, and resources. 5. They offer clinical programs that offer patients the latest forms of treatment for a wide range of cancers as well as access to clinical trials of experimental treatments. 6. They offer training for scientists, physicians, surgeons and other professionals seeing specialized training or board certification in cancer-related disciplines. 7. They offer public education and outreach about cancer prevention and screening.More information at www.cancer.govNot sure where to start? Need a referral or appointment at an NCI designated center? The Chris Elliott Fund is here to offer help and hope. Contact us today.www.chriselliottfund.org ©2014 Chris Elliott Fund, All Rights Reserved 2

Transform Your Brain Tumor Healthcare ExperienceHow to be a Rockstar Healthcare Advocate Preparing for your Doctor's ConsultationWho Could You Be Meeting With?It could be your first meeting with the doctor, a follow up visit or a visit for a 2nd or 3rd opinion,clinical trials coordinator, or it could be a visit with anyone on your Integrative Care Team suchas:Neuro-Surgeons: Surgeons who specialize in removal of brain tumors and the nervous systemNeuro-Oncologists: Doctors who specialize in brain tumors and the nervous systemRadiation Oncologists: Doctors who use radiation to treat cancerOncologists: Doctors who treat cancerNeurologists: Doctors who specialize in brain disordersRehabilitation/ Occupational Specialist: A healthcare professional such as physical therapist oroccupational therapist who helps people recover from an illness or injury and return to dailylife.Social Worker (MSW): A Social Work professional licensed by the state who helps patients to obtainneeded resources and facilitate interactions of the patients with and between care teams andcommunity resources, as well as family interactions.Why Is It Important To Prepare? Makes the consultation much more valuable for everyone Doctors get all the information they need in ADVANCE to understand your tumor and recommend best treatment options for you You have the opportunity to have all of your questions answered Improves communications/ understanding / decision making, helps the doctor understand and you want to be involved in your care Preparedness and knowing in advance what to ask (TOP 10 Vital Questions) leads to enhanced quality of life and survivorship & immediate access to advanced treatment optionsPlanning your Visit Find out what is required in advance from the doctor’s staff Are there Items to forward in advance (confirm with Doctor’s office) such as, A CD of all prior brain imaging and medical records Be aware of any pre-appointment restrictions. At the time you make the appointment, be sure to ask if there's anything you need to do in advance, such as restrict your diet.U: 08-11-14 www.chriselliottfund.org ©2014 Chris Elliott Fund, All Rights Reserved

Chris Elliott Fund 14959 NE 95th St. Redmond, WA 98052 1-800-574-5703 Write down any symptoms you're experiencing, including [email protected] unrelated to the reason for which you scheduled the appointment Write down key personal information, including any questions or concerns Prepare a detailed personal medical history and your family medical history document including a list of all medications, vitamins or supplements that you're taking Consider taking a trusted family member or friend along. Sometimes it can be difficult to remember all the information provided during an appointment. Request them to take accurate notes during the doctor visit Be familiar w/tape recorder or voice recorder on your phone so what you can record instructions and commitments made during the doctor’s appointmentItems You Should Bring With You or Send in Advance Get a notebook Write down all questions to ask your doctor You may be asked to send in Advance − A CD of all prior brain imaging (MRI’S CT Scans, medical records previous doctor contact info etc.) − Pathology and imaging reports − Any notes on treatment so far − Clinical notes from neurologist and neuro- oncologists − A patient demographic sheet including their personal information (DOB, SS number, address, phone, etc.) − A copy of the front and back of the patient’s medical insurance card − Patient’s Family Doctor/Primary Care Physician and other provider’s names and locations. − Health insurance information including insurance card(s), special forms, referrals or important phone numbers, Health Directives/Living Will − Any additional medical records not already sent in advance of the visit − Be prepared to wait for doctor’s appointment running late. Consider bringing a book, notecards, laptop to work on while waiting. TIP: schedule doctor appointment in the morning to decrease wait/running late time. Call ahead to check to see if scheduled appointment w/doctor is running late. Arrive early (so that you have enough time for the necessary testing and paperwork). Be prepared to wait for doctor’s appointment running late. Consider bringing a book, notecards, laptop/tablet to work on while waiting.www.chriselliottfund.org ©2014 Chris Elliott Fund, All Rights Reserved 2

Transform Your Brain Tumor Healthcare ExperienceHow to be a Rockstar Healthcare Advocate Online ResourcesResources for Patients, Families, Caregivers, & Healthcare Professionals Complementary & Alternative Medicine (CAM) Pharmaceutical AssistanceClinical Trials for CAM Commitment to Care (Temodar Assistance)http://nccam.nih.gov/research/clinicaltrials www.temodar.com/temodar/applicationMedline Plus Diplomat Pharmacywww.nlm.nih.gov/medlineplus/complimentary http://diplomatpharmacy.com/en/financial-andalternativemedicine.html assistanceNational Cancer Institute-Office of Cancer Genentech Access Solutions (AvastinComplementary & Alternative Medicine Assistance)www.cancer.gov/CAMNational Cancer for Complementary and www.genentechaccesssolutions.comAlternative Medicinewww.nccam.nih.gov Merck ACT Program (Temodar) http://www.merck.com/merckhelps/act- Financial, Insurance or Legal Assistance program/about_programAmerican Cancer Society Musella Foundationwww.cancer.org http://www.virtualtrials.org/copay_assistance.cfmNational Brain Tumor Society NeedyMedshttp://www.braintumor.org/patients-family- www.needymeds.orgfriends/resources/financial-insurance.html Partnership for Prescription AssistanceCancerCare www.pparx.orgwww.cancercare.org Patient Access Network FoundationCancer Legal Line http://www.panfoundation.org/www.cancerlegalline.org Rx Assist Patient Assistance Program CenterCancer Legal Resource Center www.rxassist.orgwww.disabilityrightslegalcenter.orgPatient Advocate Foundation Pediatric Resourceswww.patientadvocate.org Brain Tumor Foundation for Children, Inc. www.braintumorkids.org Hospice Care Information CureSearch www.curesearch.orgBrain Tumor Hospice Care The Childhood Brain Tumor Foundation www.childhoodbraintumor.orgwww.brainhospice.com Children’s Brain Tumor Foundation www.cbtf.orgHospice Foundation of America National Children’s Cancer Society www.children-cancer.orgwww.hospicefoundation.org Pediatric Brain Tumor Foundation of the U.S www.pbtfus.org WeCan! www.wecan.ccNational Association for Homecare The Chris Elliott Fund is here to offer help and hope. Contact us today.www.nahc.org/consu1m-e8r/0h0om-5e7.h4tm-5l 703 | [email protected] Hospice and Palliative Care AssociationU: 08-20-14 www.nwhwpwc.och.orisrgelliottfund.org ©2014 Chris Elliott Fund, All Rights Reserved

Brain Tumor and Treatment Information Chris Elliott FundAmerican Brain Tumor Association (ABTA) 14959 NE 95th St.www.abta.org Redmond, WA 98052CERN Foundationwww.cern-foundation.org 1-800-574-5703Chemocare.com [email protected] Elliott Fund Caregiver Supportwww.chriselliottfund.orgInternational Brain Tumor Alliance (IBTA) American Brain Tumor Associationwww.theibta.org (My Caring Link)International Radiosurgery Support Association http://abta.lotsahelpinghands.com/caregivingwww.irsa.org /homeNational Institutes of Health Catalog of Clinical Trials CaringBridgewww.clincialtrials.gov www.caringbridge.orgNeuro-Oncology Branch of the National Institutes of Caring ConnectionsHealth www.caringinfo.orghttp://home.ccr.cancer.gov/nob/default.asp Chris Elliott Fund - EndBrainCancerThe Musella Foundation www.virtualtrials.org www.chriselliottfund.org Family Caregiver Alliance General Cancer Information www.caregiver.orgAmerican Cancer Society Lotsa Helping Handswww.cancer.org www.lotsahelpinghands.comCancerCare National Caregivers Librarywww.cancercare.org www.caregiverslibrary.orgCancer.Net National Family Caregivers Associationwww.cancer.net www.nfcacares.orgCancer Journeywww.thecancerjourney.org Emotional SupportClinical Trialswww.clinicaltrials.gov American Psychosocial Oncology SocietyNational Cancer Institute www.apos-society.orgwww.cancer.gov CancerCare www.cancercare.org Advanced Research Information Cancer Compass/CTCAMedscape Today www.cancercompass.orgwww.medscape.com Cancer Support CommunityMedlinePlus www.cancersupportcommunity.orgwww.medlineplus.com Chris Elliott Fund (Providing Brain TumorAccelerate Brain Cancer Cure Patient & Family Support)http://Abc2.org www.endbraincancer.com Connections Online Community (ABTA) http://www.inspire.com/groups/american- brain-tumor-association I’m Too Young for This! Cancer Foundation http://i2y.com Kids Konnected www.kidsconnected.org Meningioma Mommas www.meningiomamommas.org T.H.E. Brain Trust www.braintrust.orgwww.chriselliottfund.org ©2014 Chris Elliott Fund, All Rights Reserved 2

Email: [email protected]: 1-800-574-5703 or 425-633-9830 Monday thru Friday 8am to 5pm Patient Support Services Center Address: 14959 NE 95th St., Redmond, WA 98052