Newly Diagnosed Now What?
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- Matilda Hoover
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1 Diagnosis Click Brain to Tumor: edit You Are Master Not Alone IV title style Newly Diagnosed Now What? October 2011 Diane Bier Gray Matter Matters
2 Agenda Why Me??? Resources What to Do/What Can I Do Diagnosis Doctor Appointments Standard of Care - Treatment Side Effects Take Time Quality of Life Coping Ask for What You Need Celebrate Life Thrive
3 Why Me?
4 Resources Organization NJ Brain Tumor Support Group Musella Foundation (Virtual Trials) Stupid Cancer I m too young for this Social Security Compassionate Allowance Clinical Trials.gov Seeking Peace - Brain Tumor Hospice Care Tug McGraw Foundation American Brain Tumor Association Pediatric Brain Tumor Foundation Childhood Brain Tumor Foundation Duke University Center for Living NIH Brain Tumor Caring Bridge Lots of Helping Hands Angel Food Ministries CURE - Cancer Updates, Research and Ed Randy Pausch video Web Site Free subcripition. Call CURE (2873)
5 What to do/what can I do? Stay positive Be your own Advocate Build a medical team to help you Find a good surgeon and neuro-oncologist Add neuro-psychologist and others as needed Educate/research your tumor type Build a support team Family/friends Religion Join a Support Group
6 Diagnosis Standard treatment before experimental 2 nd opinions at NIH or Major BT Center Don't ever look back and think you made the wrong decision no matter what happens Pathology Treat for the highest tumor grade Keep a copy of all medical records Surgeon s reports Radiation reports, type & amount of radiation Pathology report All MRIs and reports Keep all scheduled appointments Scan all records into the PC Backup MRI CD s
7 Doctor Appointments Plan on waiting, bring a book Bring all reports, MRIs, etc Keep a journal Take someone with you Bring a tape recorder Write questions before you see the doctor Make sure your questions are answered to YOUR satisfaction Ask for scripts to be filled
8 Medication Sheet - Sample
9 Standard of Care - Treatment What is standard treatment do what works for most patients first Surgery/biopsy Vaccines Gliadel Pathology Report Radiation Chemotherapy Avastin Clinical Trials after standard of care no longer works Vaccines Novocure
10 Side Effects Surgery Radiation Chemo Memory Issues Seizures
11 Take Time Quality of Life Take time to relax Have a cup of tea Meditate Read a book Take a walk Get enough sleep Develop a routine Find Alternates/Substitutes if needed Nutrition Don t skip meals Eat nutritionally dense foods Exercise Relieves stress Helps you sleep
12 Coping New normal The first year Surgery, radiation, chemotherapy Normal changes Take it a day at a time Break it down to small parts of the day, e.g., breakfast, lunch, the afternoon, etc. Keep a list of who does what, maintain a calendar Talking to children Use Find others who are long-term survivors Find a live Support Group in addition to online groups
13 Ask For What You Need Counseling Off load Cooking Cleaning Laundry Grocery Childcare Drive/pickup to school/activities Babysitting Homework
14 CELEBRATE LIFE Stay positive Be your own advocate Be the exception Have a sense of humor Enjoy the good days/moments Have an anniversary party Do the things you love
15 Thrive
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