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List of resources on the internet for brain cancer patients

List of resources on the internet for brain cancer patients

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Published by Susanna Taddei
cancer patients and caregivers
cancer patients and caregivers

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Published by: Susanna Taddei on Aug 27, 2013
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Useful links for Brain Cancer Patients & Caregivers

Last updated: Aug 2010

1. When initially diagnosed, these sites/guides might help:
o o About Gliomas, from the American Brain Tumor Association - Tel: 847-827-9910 (ABTA) http://www.abta.org/index.cfm?contentid=230 Caregivers Guide, ABTA: http://www.abta.org/index.cfm?contentid=201&itemtype=2

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National Brain Tumor Assoc – Tel 1.800.934.CURE (2873) http://www.braintumor.org/TumorsSublanding/ Accelerate Brain Cancer Cure (ABC2) Tel: (202) 419-3140 - http://www.abc2.org/

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About Brain tumors - Tel: 1-800-4-CANCER - http://nci.nih.gov/cancertopics/types/brain Musella Foundation Info - Tel: 888-295-4740 - http://www.virtualtrials.com/index.cfm Ben Williams Guide: http://virtualtrials.com/pdf/williams09.pdf Musella Foundation Patient Guide: http://www.virtualtrials.com/faq/ For an excellent list of other resources and events, go to the Florida Brain Tumor Association (FBTA) Tel: 954.755.4307: http://www.fbta.info/site/resources.htm The Int’l Brain Tumor Alliance: http://www.theibta.org/ It seeks to be an alliance of the support, advocacy and information groups for brain tumor patients and caregivers in different countries

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http://chemocare.com/ US Oncology unites the largest community-based cancer treatment and research network in the nation. http://www.usoncology.com/patients http://www.greyribboncrusade.org/


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Central Brain Tumor Registry – Tel (630) 655-4786 - http://cbtrus.org/ www.temodar.com for all the info you need about this standard oral chemo

2. If you need to get a second opinion and/or find a Neuro-Oncologist (NO)
o o o Physicians - 1.800.934.CURE (2873): http://www.braintumor.org/Links/Physician_Listings/ Brain Tumor Centers: http://www.braintumor.org/CenterFind.aspx?p_PageAlias=CenterFind Cancer Centers: http://cancercenters.cancer.gov/cancer_centers/cancer-centersnames.html o o o o o o o o Sylvester Cancer Center Tel1-800-545-2292 – http://www.sylvester.org/pt_care/faculty_list.asp Duke University Robert Tisch Brain Tumor Center – Tel (919) 684-5301 http://cancer.duke.edu/btc/ MD Anderson – Tel: 1-800-392-1611 (USA) / 1-713-792-6161 - http://www.mdanderson.org/ University of California - Tel: West (310) 267-9119 - East (310) 267-9120 http://www.ucla.edu/ Dr. Keith L. Black - Cedars-Sinai in LA http://www.cedars-sinai.edu/1088.html Dr. John Yu – Cedars-Sinai in LA http://www.cedars-sinai.edu/1093.html Dr. Brem – Moffitt Center – Tampa http://www.moffitt.org/ Dr.Peter M. Black - B & W/Harvard in Boston - http://brain.mgh.harvard.edu/ Cleveland Clinic. You can reach their general switch board by calling 1-800-223-2273 and then ask for the Brain Tumor Institute. They should be able to direct you to a Dr (or ask for Dr. Weil). Chicago Brain Tumor Center http://www.uchospitals.edu/specialties/cancer/brain/

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NCI Brain: http://www.cityofhope.org/patient_care/treatments/Brain-tumors/Pages/default.aspx Remote Second Opinion Johns Hopkins - Tel: +1.410.735.6662, +1.410.735.6663, +1.410.735.6665 http://www.jhintl.net/forpatients/page.aspx?id=80

3. Email / Other Support Groups:
o o o o o o BRAINTMR List: http://www.braintrust.org/aboutus.htm Brain Tumor Info: http://health.groups.yahoo.com/group/brain-research/ Bereavement Group: http://health.groups.yahoo.com/group/bereavement/join The Wellness Community Center Toll Free: 888.793.WELL – Now the CANCER SUPPORT COMMUNITY http://www.thewellnesscommunity.org/ If you are in Miami, please check the Brain Tumor Network group, also from the Wellness Community, Miami-Dade Chapter: http://twcmiami.com/programs.htm Established by Bob & Barb Gibbs to raise funds for promising brain tumor clinical trials and research. They have a Support Forum: http://www.milesforhope.org/forum/ o o o Local resources and info for caregivers. http://www.caregiver.com/ Musella Support Group – Non Medical Issues: http://virtualtrials.com/community.cfm The online version of a physician mediated support group for patients, families, and friends of those with Brain Tumors. http://braintumors.physiciansforpatients.com/


4. Clinical Trials:
CANCER TRIALS o o o National Cancer Institute – Tel 1-800-4-CANCER - http://nci.nih.gov/clinicaltrials The LIVESTRONG Cancer Clinical Trial Matching Service toll free: 866-235-7205 http://www.livestrong.org/site/c.khLXK1PxHmF/b.2661787/k.65AA/Clinical_Trials_Match/app

s/s/link.asp o o o http://www.clinicaltrials.gov/ http://virtualtrials.com/pdf/williams2007.pdf http://www.emergingmed.com/ http://www.cancer.gov/cancertopics/factsheet/NCI/TRICARE

REHAB TRIALS o o ClinicalTrials.gov: Occupational Therapy (National Institutes of Health)

Kessler Medical Rehabilitation Research and Education Corporation http://www.kmrrec.org/trials

EUROPEAN CANCER TRIALS o http://www.eortc.be/



5. Medical Equipment / Remodeling
o Equipment & Independent Living – Tel 800-323-5547 - http://www.sammonspreston.com/

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Incontinence Problems – Tel 1-877-782-3675 - http://www.biorelief.com/ http://www.dynamic-living.com/index/ Independent Living Gadgets – Tel 1-877-648-8400 - http://www.goldviolin.com/default.asp Medical ID Alert bracelets and necklaces engraved with your primary medical condition, ID number, and the 24-Hour Emergency Response Center number . http://www.medicalert.org/home/HomeCatalog.aspx?Catalog=Standard


American Medical ID serves the medical community and the public at large by offering quality medical IDs that, in a medical emergency, allow medics or other medical professionals to give prompt, precise treatment. http://www.americanmedical-id.com/ Waterproof, stain-resistant, easily washed & 100% high quality silicone http://coolmedid.com/index.php Equipment – Tel 1-800-633-2139 http://www.exmed.net/default.asp?a=b Medical Bags (for traveling) and Other Medical Equipment – Tel 877 405 9978 http://shop.advanceweb.com/ProductInfo.aspx?productid=6362

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For Training at home - Upper Extremities - - Tel 888-284-5433 http://www.saebo.com/main.html

6. Hospice Info:


For caregivers, so they may recognize and understand end-stage events that are likely to happen the last few days. http://brainhospice.com/

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Hospice Education Institute - Tel 800-331-1620 www.hospiceworld.org Center to Advance Palliative Care (CAPC) www.getpalliativecare.org National Hospice and Palliative Care Organization (NHPCO) – HelpLine: 800.658.8898 Spanish HelpLine: 877.658.8896



7. Free Medical Info or Abstracts
o o o o o o o o o o o o http://www.online-medical-dictionary.org/ http://cancer.medical-dictionaries.org/A/1/ http://cbtrus.org/ http://www.nabraintumor.org/facts.html http://www.virtualtrials.com/news.cfm http://www.medpagetoday.com/ http://jco.ascopubs.org/ http://www.news-medical.net/ http://www.dukeupress.edu/neuro-oncology/ http://www.curetoday.com/index.cfm/fuseaction/magazine.show/id/49 http://www.curetoday.com/index.cfm/fuseaction/page.show/id/42 http://www.emergingmed.com/pub_glossary_searchpage.asp

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ASCO Annual Meeting Papers for Central Nervous System Tumors: http://www.asco.org/ASCO/Abstracts+%26+Virtual+Meeting/Abstracts? &vmview=abst_category_abstracts_view&confID=55&subCatID=5 ASCO 2010 ABSTRACTS http://abstractsearch.asco.org/cgi-bin/ts.pl? index=442064&query=glioblastoma&opt=any DrugDigest is a noncommercial, evidence-based, consumer health and drug information site http://www.drugdigest.org/wps/portal/ddigest http://www.webmd.com/brain/news/20080519/can-celery-help-cut-brain-inflammation? ecd=wnl_epi_053008 Avastin: http://www.avastin.com/avastin/patient/#/avastin/patient/gbm/index.html Temodar: http://www.temodar.com/temodar/patients_guide.html Camptosar, CPT-11, irinotecan: http://www.cancer.org/docroot/cdg/content/cdg_irinotecan.asp Decadron: http://www.chemocare.com/bio/decadron.asp Lomustine CCNU: http://www.chemocare.com/bio/ccnu.asp Polymer Wafer Implants (Gliadel): http://www.abta.org/index.cfm? contentid=185&itemtype=2



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http://www.radiologyinfo.org/en/sitemap/system.cfm?sistem=cancer Info, videos and images about CT scans, MRI, gamma knife, Stereotactic Radiosurgery, etc.

8. Financial Support Resources
o o o o o o o o o o o o o AMERICAN CANCER SOCIETY 1 - 800-ACS-2345 (1-866-228-4327) http://www.cancer.org/ THE PATIENT ADVOCATE FOUNDATION – Tel 1-866-512-3861 http://www.copays.org/ - Co-Pay Relief program for people with type 3 and 4 brain tumors WWW.NEEDYMEDS.COm Will provide you with free medication if your income qualifies Patient Access Network - Tel 1 866 316 PANf (7263) – Help for out-of-pocket expenses http://www.patientaccessnetwork.org/ Partnership for Prescription Assistance- Tel 1-888-4PPANOW (1-888-477-2669) https://www.pparx.org/Intro.php Pharmaceutical Research and Manufacturers of America (PhRMA) 202-835-3400 www.phrma.org Directory of patient-assistance programs offered by pharmaceutical companies http://www.innovation.org/index.cfm/ToolsandResources/Patient_Assistance_Programs Chronic Disease Fund (877-968-7233) helps underinsured patients with a chronic disease o o o o o o RxHope.com (732-507-7400) helps patients obtain free or low-cost prescription medications. Cancer Fund of America is a non-profit organization set up to help cancer patients, hospices, and other non-profit healthcare providers by way of sending products free of charge directly to them http://www.cfoa.org/ http://www.worldofwigs.com/custom_wigs.php http://www.wigfund.org/ http://www.netwish.org/


Free professional housecleaning services to improve the lives of women undergoing treatment for cancer http://www.cleaningforareason.org/


National Council on the Aging www.benefitscheckup.org United Way office can also direct people to services in their community. The Leukemia & Lymphoma Society's patient financial aid program (800-955-4572) provides limited financial assistance to patients with significant need to help defray treatment-related expenses

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The National Foundation for Transplants (800-489-3863) provides fundraising assistance for patients needing transplants, including bone marrow and stem cell transplants. The Patient Advocate Foundation (800-532-5274) provides education, legal counseling, and referrals for people with cancer who need assistance managing insurance, financial, debt crisis, and job discrimination issues. www.patientadvocate.org CancerCare's Tips for Finding Financial Assistance section and Financial Help for People with Cancer fact sheet provide information on financial resources. www.cancercare.org . Call 800-813-467, they provide limited grants for people with certain types of cancer The Lance Armstrong Foundation's website LIVESTRONG offers a section for survivors entitled Planning Your Financial Future




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http://www.livestrong.org/Get-Help/Find-MoreResources#/f/FinancialGovernmentAssistancePrograms http://www.greyribboncrusade.org is a movement to unite the brain tumor community under one National Brand/Voice. Here you will find the links to many BRAIN TUMOR Organizations. Cure Today Tool Box, an excellent list of resources: http://curetoday.com/toolbox Free subscription to their magazine/guide Info in Spanish available Mission4Maureen serves brain cancer patient population that is severely under-funded

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http://www.mission4maureen.com/ o http://brainmaps.org/index.php


BrainMaps.org is an interactive multiresolution next-generation brain atlas
SAMF - Organization created to assist young adult survivors of cancer with a successful transition into their post-treatment life, by providing financial support through the distribution of grants and scholarships. http://www.thesamfund.org/

9. Insurance / Legal Issues
o o http://www.patientadvocate.org/help4u.php
The National Underinsured Resource Directory is intended to help underinsured individuals and families locate valuable resources and seek alternative coverage options or methods for better reimbursement

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http://cancerandcareers.org/women/paperwork/ How can you maximize job security/benefits and minimize stress when dealing with the avalanche of paperwork and red tape that comes with a cancer diagnosis https://www.disabilityrightslegalcenter.org/index.cfm COBRA FAQ 1-866-4-USA-DOL | TTY: 1-877-889-5627 http://www.dol.gov/ebsa/faqs/faq_consumer_cobra.html Please note that a diagnosis of Brain Cancer is considered terminal by the Social Security Administration and you can ask for expedite processing if necessary. For more info please go to: https://secure.ssa.gov/apps6z/i3368PRO/main.html National Coalition for Cancer Survivorship www.canceradvocacy.org U.S. Equal Employment Opportunity Commission (eeoc.gov/facts/cancer.html) US Department of Justice (usdoj.gov) US Department of Labor (dol.gov) Florida Death Certificate: http://www.doh.state.fl.us/planning_eval/vital_statistics/template3.htm

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Gov't Issues: http://www.congress.org/congressorg/issues/basics/ Free Forms / Legal Documents for Estate Planning: http://www.ilrg.com/forms/index.html#estateplanning Cancer & Careers- A resource for working women with cancer https://www.cew.org/eweb/DynamicPage.aspx?WebCode=CNCRCRRS https://www.cew.org/eweb/docs/Legal_2010_Ed_Series.pdf

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Patient Services, Inc. (800-366-7441) provides assistance with insurance premiums and copayments for people with chronic diseases. https://www.patientservicesinc.org/ http://www.mrmib.ca.gov/MRMIB/MRMIB4.html
The MRMIB was created in 1990 with a broad mandate to advise the Governor of CA and the Legislature on strategies for reducing the number of uninsured persons in the state

HIPAA AND CREDITABLE COVERAGE http://www.dol.gov/ebsa/faqs/faq_consumer_hipaa.html http://www.rogersbenefit.com/forms/GroupAdministratorGuide_03-2009(3).pdf Blue Cross Blue Shield guide Family and Medical Leave Act http://www.dol.gov/whd/fmla/index.htm http://www.medicare.gov/Default.aspx?AspxAutoDetectCookieSupport=1 Centers for Medicare & Medicaid Services: http://www.cms.gov/ Choosing an Assistance Program: http://www.kff.org/medicaid/upload/7782.pdf http://www.kff.org/healthreform/sidebyside.cfm Interactive side-by-side provides detailed summaries of the final new health reform law


Travel & Housing Assistance
o o o Dream Foundation: Grants last wishes of terminally ill adults. Telephone: 805-564-2131 www.dreamfoundation.com Make a Wish Foundation for kids: http://wish.org/ - PHONE -(800) 722-WISH (9474) Fax: (602) 2790855 FREE 1 week all expenses paid vacation to those with a diagnosis of cancer, and their caregiver. ONLY IN THE STATES OF PA, NJ, and DE. http://crossingthefinishline.org/ Assistance with hotels and an excellent list of other resources for traveling: http://www.joeshouse.org http://www.fightbraincancer.org/AboutTheFoundation.htm In partnership with Memorial Sloan-Kettering Cancer Center, they assist patients with non-medical expenses such as hotels, transportation, etc. Air Care Alliance is a league of humanitarian flying organizations whose volunteer pilots are dedicated to community service:www.aircareall.org / AirLife Lifeline 800-446-1231. http://www.airlifeline.org/ o o o o Corporate Angel Network 914-328-1313 http://www.CorpAngelNetwork.org/ Angel Flight West arranges free air transportation in response to health care and other compelling human needs.1-888-4-AN-ANGEL.or 888-426-2643. http://WWW.ANGELFLIGHT.ORG Established by Bob & Barb Gibbs to raise funds for promising brain tumor clinical trials and research. They have a flights assistance: http://www.milesforhope.org If you or someone you love is battling cancer, they can arrange a special experience with their dolphins for you at the Florida Keys. http://www.dolphinsplus.com/omas-dolphinswim.htm

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To use the following services, you might need to contact the National Cancer Info Center at 800-227-2345 to receive an ID Number. They can also provide you with information on other services that are available that may not be on this list. o Mercy Medical Airlift - 21 days advance notice and require ID number - 888-675-1405 o United Mileage Plus Program - maintained by Mercy Medical Airlift -21 days after medical clearance is received from your physician - 888-675-1405 o Miracles Flights - 10 business days notice call Mon-Thurs - 800-359-1711 o Corporate Angel Network - CORPORATE JETS - 1 weeks notice - 866-328-1313 o Midwest - Miracle Miles - 1 weeks notice - 414-570-4118 Others Travel and housing assistance o o Air Care Alliance (888-260-9707) offers a central listing of free transportation services provided by volunteer pilots and charitable aviation groups. Air Charity Network (877-621-7177) coordinates free air transportation for people in need.

o Angel Flight Samaritans (800-296-1217) provides long-distance travel for people with cancer and
their families in need of travel.

o The Corporate Angel Network (866-328-1313) arranges free air transportation for people with
cancer traveling to treatment using empty seats on corporate jets.

o The National Patient Travel Helpline (800-296-1217) provides information about charitable, longdistance medical air transportation and provides referrals to appropriate sources.

o The Candlelighters Childhood Cancer Foundation maintains a list of additional organizations
offering assistance for treatment-related travel. o The National Association of Hospital Hospitality Houses (800-542-9730) is an association of more than 150 nonprofit organizations that provide lodging and support services to families and their loved ones who are receiving medical treatment away from home. o Ronald McDonald House Charities (630-623-7048) offer free or reduced-cost lodging for families of

seriously ill children who are receiving treatment at nearby hospitals.


Cancer Nutrition:
o http://www.cancer.org/docroot/MBC/content/MBC_6_2X_Impact_of_Altered_Immune_Functio n.asp o o o o http://www.cancernutrition.com/ http://nutritional-solutions.net/ http://www.aicr.org/site/PageServer http://www.cancer.gov/cancertopics/eatinghints/page2

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http://nccam.nih.gov/health/bottle/ http://www.wholefoodsmarket.com/issues/organic/index.html http://www.mskcc.org/mskcc/html/11570.cfm http://www.mskcc.org/mskcc/html/11917.cfm http://www.mdanderson.org/departments/CIMER/ http://whfoods.org/foodstoc.php

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Where to buy supplements:
o http://www.lef.org/newshop/cgi-shop/SearchItems.cgi



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http://www.vitaminlife.com/ http://www.wholefoodsmarket.com/stores/index.html

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http://www.jhsnp.com/ http://www.thickitretail.com/?gclid=CNOMweTtzZoCFQa-sgod4Wvn2Q Instant food thickener to care for people with dysphagia and swallowing problems http://www.celticseasalt.com/Vita_Coco_-_Plain_-_Single_P1291C17.cfm For sea salt, coconut water and other food & pantry supplies




Books of Interest
o o Cancer: Basic Science and Clinical Aspects [Paperback] Craig A. Almeida

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Anticancer, A New Way of Life, New Edition [Hardcover] MD, PhD, David Servan-Schreiber (Author)


Life Over Cancer: The Block Center Program for Integrative Cancer Treatment [Hardcover]


Keith Block (Author)


Surviving Terminal Cancer: Clinical Trials, Drug Cocktails, and Other Treatments Your Oncologist Won't Tell You About [Paperback]

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Ben A. Williams (Author) The War on Cancer: An Anatomy of Failure, A Blueprint for the Future [Paperback]


Guy B. Faguet (Author)

SOME ITEMS THAT MIGHT HELP. CHECK Medical Equipment / Remodeling for links

g in s es Dr ick St
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e ach e R
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Rollator Stocking Aid Transfer bench

Pedal Exerciser – also for upper extremities

Elastic shoelaces

All photos from Sammons Preston Web site. For more info, go to www.susannataddei.org

OTHER ITEMS THAT MIGHT HELP. CHECK Medical Equipment / Remodeling for links (cont.)

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