Sarcoma
Sarcoma – Full texts of all articles from this journal devoted to sarcoma are available at: http://www.hindawi.com/journals/srcm/contents.html
Patient Registry Program
The Sarcoma Foundation of America (SFA) is managing a Sarcoma Patient Registry Program. The Registry records the significant events of the history and treatment of patients diagnosed with Sarcoma. The Registry is a data collection and reporting system hosted by Registry Partners and managed by SFA.
The Registry’s endeavor is to collect, store, analyze and interpret data on persons with sarcoma. SFA invites you to participate in its efforts to make the Sarcoma Patient Registry information as accurate and comprehensive as possible. By contributing, your data will be a valuable resource for oncologist and researchers conducting clinical trials and medical studies. Most of all, you will be helping to improve the care of current and future sarcoma patients.
You are eligible to join the Registry if you have been diagnosed with ANY sarcoma subtype.
If you have any questions or would like to join the Sarcoma Patient Registry, please send an email to sfa@registrypartners.com with your contact information and the most convenient time and method to contact you, or you can call toll free at (866) 501-6780
Resources
American Cancer Society
http://www.cancer.org
ASCO – Sarcoma specific information: Click Here
People Living With Cancer – A patient website from the Amercian Society of Clinical Oncology (ASCO)
http://www.cancer.net/
The Brain Tumor Society
http://www.tbts.org
Cancer 411 – Cancer Information and Resources
http://www.cancer411.org
Cancer Information Network
http://www.cancernetwork.com
CancerNet: PDQ – NCI’s Comprehensive Cancer Database
http://www.cancer.gov/cancertopics/pdq/cancerdatabase
The Doctors Doctor – Interpret Pathology Reports (for a fee)
http://www.thedoctorsdoctor.com/f_home.html
Steve Dunn’s Cancer Guide – Patient Perspective
http://cancerguide.org
Healthline – Cancer Channel
http://www.healthline.com/channel/cancer.html
InteliHealth – Comprehensive Health Information
http://www.intelihealth.com
National Comprehensive Cancer Network – Website specifically for patients
http://www.nccn.com/
Nature Reviews Websites
http://www.nature.com/nrc/info/info_links.html
Oncolink – Cancer Information for Professionals and Lay Persons
http://www.oncolink.org
Online Nursing Programs – Cancer Learning Online – basic information on cancer and caner terminology
http://www.onlinenursingprograms.net/resources/cancer-learning-health-online.html
Patient Power – Web based radio shows with discussion about various aspects of sarcoma care and diagnosis
http://www.patientpower.info/listenhealthtopiclist.asp?Topic=Sarcoma
Bone Cancers
The Center for Orthopedic Oncology and Musculoskeletal Research
http://www.sarcoma.org/main.php?page=lss
Amputee Coalition of America
http://www.amputee-coalition.org/
Hemipelvectomy and Hip-Disarticulation Amputee Support and Information Site
http://www.hphdhelp.org
Limb Preservation Foundation- Denver, CO
http://www.limbpreservation.org
Booklets
Cancer Care – Sarcoma Treatment Update (a booklet)
http://www.cancercare.org/pdf/booklets/ccc_sarcoma.pdf
National Cancer Institute – Sarcoma Progress Review Group 2004
(a roadmap for organization of sarcoma treatment and research)
http://planning.cancer.gov/library/2004sarcoma.pdf
Disability
Americans with Disabilities Act – Questions & Answers
http://www.usdoj.gov/crt/ada/qandaeng.htm
Social Security – Disability Programs
http://www.ssa.gov/disability/
Drug Information
ACS Cancer Reference Info, click on Cancer Drug Guide
http://www.cancer.org/treatment/treatmentsandsideeffects/guidetocancerdrugs/index
Access to Unapproved Drugs
http://www.fda.gov/ForConsumers/ByAudience/ForPatientAdvocates/AccesstoInvestigationalDrugs/ucm176098.htm
American Cancer Society’s List of Information about Cancer Drugs
http://www.cancer.org/Treatment/TreatmentsandSideEffects/GuidetoCancerDrugs/index
American Society of Health System Pharmacists
http://www.ashp.org
The Medicine Program – Accessing Free Medication
http://www.themedicineprogram.com
Needy Meds – Drug Assistance
http://www.needymeds.com
Rx List – The Internet Drug Index
http://www.rxlist.com
Journals
Neurology Journals from The Lancet
Oncology Journals from The Lancet
Pain Management
American Pain Society
http://www.ampainsoc.org
Medscape Oncology Pain Learning Center
http://www.medscape.org/resource/pain/cme
National Comprehensive Cancer Network Pain Guidelines -
These guidelines for physicians require registration and are free to everyone.
http://www.nccn.org/professionals/physician_gls/pdf/pain.pdf
Pain Management Resource
http://www.partnersagainstpain.com
World of Information on Pain
http://www.pain.com
Radiation Therapies
Cancernet’s Radiation Therapy and You
http://www.cancer.gov/cancerinfo/radiation-therapy-and-you
Staten Island, NY University Hospital – Radiation Oncology
http://www.siuh.edu/Clinical-Services/Radiation-Oncology.aspx
Fermi National Accelerator Laboratory – Neutron Beam Radiation
http://adwww.fnal.gov/www/ntf/ntf_home.html
Loma Linda, CA, University Medical Center – Proton Beam Radiotherapy
http://www.protons.com/index.html
National Association for Proton Therapy
http://www.proton-therapy.org
San Diego Gamma Knife Center
http://www.sdgkc.com
Research
AACR – American Association for Cancer Research
http://www.aacr.org
CancerProtocol.com
http://www.cancerprotocol.com
Connective Tissue Oncology Society
www.ctos.org
Developing Cancer Therapies
http://ctep.cancer.gov/
Office of Rare Diseases
http://rarediseases.info.nih.gov
On-line Science and Medical Dictionaries
http://www.nlm.nih.gov/medlineplus/mplusdictionary.html
Pub Med – Free Searches of US National Library of Medicine
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi
Quackwatch – Guide to Health Fraud
http://www.quackwatch.com
Sarcoma Alliance for Research through Collaboration
http://www.sarctrials.org
Side Effects
Great Comebacks – Information on bowel problems and ostomies http://www.greatcomebacks.com
Other Resources
Cancer Care – Counseling, Education and Comprehensive Resource Guide
http://www.cancercare.org
Cancer Supportive Care Program – Comprehensive Coping Guide
http://www.cancersupportivecare.com
Cancer Survival Toolbox – Free Audio Program Teaching Self Advocacy Skills
http://www.canceradvocacy.org/toolbox/
Fatigue
http://www.cancerfatigue.org
Look Good… Feel Better – Free Service for Women and Teens with Cancer
http://lookgoodfeelbetter.org
National Cancer Institute – Coping with Cancer
http://www.cancer.gov/cancerinfo/coping
National Coalition for Cancer Survivorship – Advocacy
http://www.canceradvocacy.org
National Lymphedema Network
http://www.lymphnet.org
Oncology.com – Living with Cancer
http://www.oncology.com
Vital Options International – Telesupport Cancer Network and Radio Program
http://www.vitaloptions.org
Cancer Support Community – Free Professional Support Services
http://cancersupportcommunity.org/
Miscellaneous
National Institute’s of Health Chemotherapy and You
http://www.cancer.gov/cancerinfo/chemotherapy-and-you
NCI – Understanding Cancer Series Angiogenesis
http://www.cancer.gov/cancertopics/understandingcancer/angiogenesis/AllPages
Procrit.com – Anemia and Fatigue
http://www.procrit.com/anemia-and-chemotherapy