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
Carcinoid Cancer Awareness Network*
http://www.carcinoidawareness.org
or call 866-850-9555
The Carcinoid Cancer Foundation™*
http://www.carcinoid.org
or call 1-888-722-3132
The Caring for Carcinoid Foundation*
http://www.caringforcarcinoid.org
or call 1-617-948-2514
General Resources
CancerCare, Inc.*
http://www.cancercare.org
or call 1-800-813-HOPE for free counseling for those touched by cancer
National Coalition for Cancer Survivorship
http://www.canceradvocacy.org or call 1-301-650-9127 or 1-888-650-9127 (toll-free)
National Organization for Rare Disorders (NORD)*
http://www.rarediseases.org
Patient Advocate Foundation
http://www.patientadvocate.org or call 1-800-532-5274
Support Groups
Capital Area Carcinoid Survivors (CACS)*
http://members.cox.net/cacsva
Carcinoid Cancer Texas Survivors (CCT)*
http://www.carcinoid-tx.org
Chicagoland Carcinoid Support Group*
http://www.freewebs.com/chicagocarcinoid
Michigan Carcinoid Group*
http://www.carcinoid.org/support/webpages/MCG.htm
SEA4Carcinoid – Support, Education, and Awareness*
http://www.sea4carcinoid.com
For Additional Information about Support Groups, please visit:
The Carcinoid Cancer Foundation™*
http://www.carcinoid.org or call 1-888-722-3132
*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 Information about SandoSupport
As a patient currently receiving or considering therapy with Sandostatin®, you are supported not only by a team of qualified healthcare providers, but also by a variety of resources that are offered through SandoSupport, a program brought to you by Novartis Pharmaceuticals Corporation.
Access:
1-877-LAR-HELP
Call to speak with a dedicated Patient Care Specialist for timely, accurate information regarding insurance verification, acquisition, billing, coding, claims appeal, and much more. Hours of operation: Monday through Friday, 8 AM to 7 PM EST
Patient Assistance Program
A Novartis program that helps qualified patients obtain treatment with Sandostatin® LAR Depot. For more information, visit www.patientassistancenow.com or call 1-800-245-5356.
Education:
Sandostatin Control
Register to join and receive information about the severe diarrhea and flushing associated with carcinoid syndrome and treatment options, tips for talking to your doctor, diet and lifestyle tips, patient stories, and information about support groups and other carcinoid resources. Sign up at: www.SandostatinControl.com
Novartis Customer Interaction Center
Get quick and accurate information about specific drug usages by calling 1-888-669-6682
Treatment:
Nurse Home Injection Program (NHIP)
Offers convenient, at-home administration of Sandostatin® LAR Depot by a specially trained registered nurse.
INDICATIONS AND USAGE
Sandostatin® LAR Depot (octreotide acetate for injectable suspension) is a prescription medicine indicated for patients in whom initial treatment with immediate release Sandostatin® (octreotide acetate) Injection has been shown to be effective and tolerated for:
- Long-term maintenance therapy in acromegalic patients who have had inadequate response to surgery and/or radiotherapy or for whom surgery and/or radiotherapy is not an option (the goal of treatment in acromegaly is to reduce GH and IGF-1 levels to normal).
- Long-term treatment of the severe diarrhea and flushing episodes associated with metastatic carcinoid tumors.
- Long-term treatment of the profuse watery diarrhea associated with VIP-secreting tumors
In patients with carcinoid syndrome and VIPomas, the effect of Sandostatin Injection and Sandostatin LAR Depot on tumor size, rate of growth and development of metastases has not been determined.
IMPORTANT SAFETY INFORMATION
Warnings and precautions: Treatment with Sandostatin LAR Depot may affect gallbladder function, sugar metabolism, thyroid and heart function, and nutritional absorption, which may require monitoring by your doctor.
Before taking Sandostatin LAR Depot: Tell your doctor if you have a history of heart disease or are taking other medications, including: cyclosporine, insulin, oral hypoglycemic agents, beta-blockers, and bromocriptine.
Common side effects: Most patients experience side effects at some time. Some common side effects you may experience include:
- Acromegaly: diarrhea, gallstones, abdominal pain, and flatulence
- Carcinoid tumors: back pain, fatigue, headache, abdominal pain, nausea, and dizziness
Other information: Patients with carcinoids tumors and VIPomas should adhere closely to their scheduled return visits for reinjection in order to minimize exacerbation of symptoms. Patients with acromegaly should adhere to their return visit schedule to help assure steady control of GH and IGF-1 levels.
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.
