Your healthcare provider is your first source of information because he or she understands your individual medical needs. Still, the Internet can be a good source of information about carcinoid syndrome, and it provides a way for patients and families to "talk" with one another, and share feelings and resources. On this page, you will find links to sites that provide carcinoid syndrome resources and support groups.
Carcinoid syndrome resources
and support groups
The following Web sites can provide additional information, resources, and support.
Information about carcinoid syndrome
The Carcinoid Cancer Foundation™*
http://www.carcinoid.org
or call 1-888-722-3132
Carcinoid Cancer Awareness Network*
http://www.carcinoidawareness.org
or call 1-516-781-7814
National Organization for Rare Disorders (NORD)*
http://www.rarediseases.org
American Cancer Society, Inc.*
http://www.cancer.org
or call 1-800-227-2345
CancerCare, Inc.*
http://www.cancercare.org
or call 1-800-813-HOPE for
information about support programs
The Caring for Carcinoid Foundation*
http://www.caringforcarcinoid.org
Support Groups
Boston Carcinoid Support Group*
http://research.dfci.harvard.edu/neuroendocrine/contact
Capital Area Carcinoid Survivors (CACS)*
http://members.cox.net/cacsva
Carcinoid Cancer*
http://www.carcinoidinfo.info
Carcinoid Cancer Texas Survivors (CCT)*
http://www.carcinoid-tx.org
Metro NY Carcinoid Support Group (MNYCSG)*
http://www.carcinoid.us
SEA4Carcinoid – Support, Education, and Awareness*
http://www.sea4carcinoid.com
Cancer Adventures*
http://www.canceradventures.org
*These organizations and Web sites are independently operated and are not managed by Novartis Pharmaceuticals Corporation. Novartis assumes no responsibility for any information they may provide.
Important contact and support information
The Sandostatin® Therapy Support Program (STSP) provides a unique and comprehensive level of support to help patients and prescribers get the most out of treatment.
STSP Services
- 1-877-LAR-HELP (527-4357)
A convenient support line staffed by dedicated patient care specialists - Patient Assistance Program
Helps eligible patients without coverage or financial means to obtain Sandostatin® LAR Depot (octreotide acetate for injectable suspension) - www.sandostatinsupport.com
Offers information and assistance regarding drug acquisition, reimbursement, and patient programs
Additional Novartis Oncology support services
Novartis Customer Interaction Center
Provides quick and accurate information for both immediate release Sandostatin® (octreotide acetate) Injection and Sandostatin® LAR Depot; is available by calling 1-888-669-6682
Related information
Want more information about carcinoid syndrome, including more support groups?
Go to carcinoid.com
Sandostatin® LAR Depot (octreotide acetate for injectable suspension) is indicated for long-term treatment of the severe diarrhea and flushing episodes associated with metastatic carcinoid tumors and for the long-term treatment of the profuse watery diarrhea associated with VIP-secreting tumors in patients in whom initial treatment with immediate release Sandostatin® (octreotide acetate) Injection has been shown to be effective and tolerated.
Important Safety Information
As with immediate release Sandostatin® Injection, the most frequently reported drug-related adverse events were biliary disorders (62%), gastrointestinal disorders (14% to 38%), and injection-site pain (20% to 50%). Hypoglycemia (4%), hyperglycemia (27%), sinus bradycardia (19%), conduction abnormalities (9%), and arrhythmias (3%) have been reported.
The controlled clinical trials that support the marketing clearance for Sandostatin® LAR Depot did not include determination of effect on tumor size or rate of growth. Sandostatin® LAR Depot is not indicated for tumor shrinkage. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.
