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Websites listed in the ninth edition of Brain Tumors Guide for the Newly Diagnosed

 

Some notes about this edition

 

Dictionary of cancer terms

www.cancer.gov/dictionary

 

Chapter 1: Where, when, how, and why me?

 

Survivor stories

www.virtualtrials.com/survive.cfm

 

Chapter 2: From day one, a place for everything

 

Major brain tumor treatment centers

www.virtualtrials.com/btcenters.cfm

 

Consultation with neuro-oncology branch of the National Cancer Institute

home.ccr.cancer.gov/nob/Default.aspx

 

Consultation with the division of neuropathology at Johns Hopkins University Hospital

pathology.jhu.edu/department/services/consults/neuropath.cfm

 

Support for caregivers

 

Cancer Care

http://www.cancercare.org/tagged/caregiving

 

Cancer Compass

www.cancercompass.com/message-board/caregivers/1,0,122.htm

 

Caregiver Hope

www.caregiverhope.com

 

Caring.Com

www.caring.com

 

Family Caregiver Alliance National Center on Caregiving

www.caregiver.org

 

National Hospice & Palliative Care Organization

www.nhpco.org/i4a/pages/Index.cfm?pageID=3254

 

Lotsa Helping Hands

www.lotsahelpinghands.com

 

National Family Caregivers Association

www.thefamilycaregiver.org

 

Saturing

www.saturing.com

 

Strength for Caring

www.strengthforcaring.com/index.html

 

Today's Caregiver

www.caregiver.com

 

Well Spouse Association

www.wellspouse.org

 

Center to Advance Palliative Care for a directory of palliative care resources

www.getpalliativecare.org

 

Prayer list at the virtualtrials.com website of the Musella Foundation

www.virtualtrials.com/prayer.cfm

 

Information about hospice care

 

The Hospice Foundation of America

www.hospicefoundation.org

 

Hospice Net

www.hospicenet.org

 

Seeking Peace: Brain Tumor Hospice Care, a brain-tumor help site for hospice care

www.brainhospice.com

 

Chapter 3: Understanding brain tumors

 

National Cancer Institute information about specific types of brain tumors

www.cancer.gov/cancertopics/wyntk/brain

 

Essay by Stephen J. Gould, "The Median Isn't the Message"

cancerguide.org/median_not_msg.html

 

Brain tumor survival statistics from the Central Brain Tumor Registry of the United States

www.cbtrus.org/factsheet/factsheet.html

 

Chapter 4: Your medical team, questions to ask, and brain scans

 

Breaking news at the virtualtrials.com website of the Musella Foundation

www.virtualtrials.com/news.cfm

 

Chapter 5: Treatments of brain tumors

 

Standard-of-care treatment for high grade glioma (the "Stupp" protocol)

http://www.thelancet.com/journals/lanonc/article/PIIS1470-2045%2809%2970025-7/fulltext

 

Finding clinical trials

 

The "Find a treatment" tab at the virtualtrials.com website of the Musella Foundation

www.virtualtrials.com

 

The clinical trial search engine at the National Cancer Institute

www.cancer.gov/clinicaltrials/search

 

The clinicaltrials.gov registry of clinical trials, run by the National Institutes of Health

www.clinicaltrials.gov

 

The video library at the virtualtrials.com website of the Musella Foundation

www.virtualtrials.com/video.cfm

 

Plain English explanations of the latest brain tumor treatments in general use at the virtualtrials.com website of the Musella Foundation

www.virtualtrials.com/noteworth.cfm

 

Help paying for medications

 

NeedyMeds

www.needymeds.org

 

The copay assistance program of the Musella Foundation

www.braintumorcopays.com

 

Sections about key brain tumor treatments at the virtualtrials.com website of the Musella Foundation

 

Brain tumor vaccines

www.virtualtrials.com/vaccines.cfm

 

Gliadel wafer

www.virtualtrials.com/gliadel/

 

Novocure NovoTTF-100A System

www.virtualtrials.com/novocure/

 

Temodar

www.virtualtrials.com/temodar/

 

Toca 511 & Toca FC

www.virtualtrials.com/tocagen/

 

The Brain Tumor Virtual Trial at the virtualtrials.com website of the Musella Foundation

www.virtualtrial.com/brain/index.cfm

 

The writings of glioblastoma multiforme survivor Ben Williams at the virtualtrials.com website of the Musella Foundation

www.virtualtrials.com/williams.cfm

 

Chapter 7: Common medicines for treating symptoms

 

The drug information site of National Institutes of Health, Medline Plus

www.nlm.nih.gov/medlineplus/druginformation.html

 

Chapter 8: Sex and fertility

 

Help with finding fertility experts or physicians/therapists dealing with sexual problems

 

The American Medical Association

https://apps.ama-assn.org/doctorfinder/recaptcha.jsp

 

The American Society for Reproductive Medicine

http://www.asrm.org

 

The American Association of Sex Educators, Counselors, and Therapists

www.aasect.org/

 

Chapter 9: "Real world" and online support groups

 

Help with finding "real world" support groups

 

American Brain Tumor Association

http://www.abta.org/care-treatment/support-resources/support-groups/

 

Cancer Care

www.cancercare.org.

 

The National Brain Tumor Society

http://www.braintumor.org/patients-family-friends/find-support/

 

"Real world" support groups at the virtualtrials.com website of the Musella Foundation

www.virtualtrials.com/support.cfm

 

Online support groups at the virtualtrials.com website of the Musella Foundation

www.virtualtrials.com/lists.cfm

 

Chapter 10: Insurance management and financial assistance

 

The American Brain Tumor Association primer about the Affordable Care Act

www.abta.org/care-treatment/support-resources/the-affordable-care-act.html

 

The American Society of Oncology website for patients about financial considerations related to cancer care

http://www.cancer.net/navigating-cancer-care/financial-considerations

 

The co-pay assistance program of the Musella Foundation

https://braintumorcopays.org/index.cfm

 

The drug discount card at the virtualtrials.com website of the Musella Foundation

www.virtualtrials.com/drug_assistance.cfm

 

Organizations that can provide financial assistance

 

American Brain Tumor Association

www.abta.org/care-treatment/support-resources/financial-resources.html

 

Angel Flight Travel Assistance

www.angelflight.com

 

Cancer Care

www.cancercare.org

 

Caring for Cancer

www.caring4cancer.com/go/cancer/financial/help-with-costs/DrugAssistancePrograms.aspx

 

Drug Assistance Programs from Pharmaceutical Companies

www.cancersupportivecare.com/drug_assistance.html

 

Medicare Rights Center

www.medicarerights.org

 

Medicare Prescription Drug Program

www.medicare.gov

 

Miles for Hope Travel Assistance

www.milesforhope.org

 

Mission for Maureen Travel Assistance

www.mission4maureen.com

 

NeedyMeds

www.needymeds.org

 

Patient Advocate Foundation

www.copays.org

 

Supplemental Security Income (SSI) & Social Security Disability Insurance

www.socialsecurity.gov/

 

 




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